What difference does 3 weeks make?
Hi everyone, I apologize in advance for this bring so long. I am 41 years old and have been feeling unwell for months (well a couple years but seemed rheumatological). First off I have small % Ashkenazi Jewish decent and am of Eastern European decent. I have the BRCA1 SNP rs16942 which I know puts me at higher risk for breast cancer, and also rs 8176318 which puts me at higher risk for breast and ovarian cancer (yet it says “only African Americans” under ovarian cancer in this specific SNP??). My aunt had breast cancer years ago and I think she was age 60 or older... So I’m here because I feel awful, something is wrong, either that or I’ve gone completely mad! I’m tired of complaining and tired of waiting! I want to feel better. My question is how important is three weeks when it comes to waiting for an ultrasound? Should I push to get in sooner, tell the doc I feel horrible and am writing my autobio on the internet at 2:34AM because my symptoms are waking me?
I have had blood in my urine on and off for the past two years (I take seasonique my doc said I’m folinevto take all active pills to suppress my period...had horrible PMS). I’ve had pain in my right pelvic region that led me to the gynecologist visit two years ago. My ultrasound showed a very small cyst on my right ovary, and they never located my left ovary saying it was probably hidden behind my bowels. Fast forward to last October when I got at UTI (or so I thought), then another in January, and then another a month ago (Still have symptoms with no infection). Again I had blood in my urine and I was sent to the urologist due to urgency, inability to completely void, burning, old blood (brown on toilet paper) and tiny bits of tissue in Urine. He did a scope of my bladder and said it was normal for tissue from bladder to get into utine in pre-menopausal women. I want to say epithial cell tissue but not sure. The doc said he thinks I have interstitial cystitis and made me a follow up appointment.
Yesterday I went to my gynecologist and she did a pelvic exam. Lots of old blood. Bad pain in stomach area as she placed pressure. She said I could have really bad endometriosis, and at some point in the appointment she mentioned laparoscopic diagnostic procedure to find out the problem. She scheduled an intravaginal ultrasound check my ovaries Since it had been two years. The appointment is not until 6/19. I don’t want to wait that long. I am awakened at night with either heartburn, indugestion, or the need to urinate. My back hurts constantly, my stomach hurts, still blood flakes in my urine, i woke up in a puddle of sweat the other night which is not normal as I never get fevers. Not sure if it was due to my room being too warm, didn’t seem that way. I’m fatigued and I’ve had numb fingertips and electric shock sensation in my fingers. I have had what I feel to be a swollen protruding stomach. Not sure if it’s due to diet or lack of exercise since breaking my ankle In January? My blood tests have been relatively normal, C reactive protein high in January. CT scan of spine for spine pain (ruled out MS and other conditions) was normal, CT scan of urinary system (kidneys/urological) normal, but radiologist suggested contrast given my symptoms, and my urologist ordered it giving me the option of whether I wanted the extra radiation.
Given the symptoms described and length of time I’ve suffered them, should I be trying to get in to the ultrasound sooner? Also, none of my docs know about my BRCA1 mutation, or that my aunt had breast cancer (after age 60 I think). I am a mom of two teens, I am extremely busy and am in grad school. I need to know what’s going on. Thank you so much for sticking with me through this long story!
Stacy
Comments
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Loretta,
Loretta,
What a lovely post, and so kind. I am sorry you are having to deal with cancer, especially at that stage. My father went to heaven last April (Bladder Cancer and Lymphoma), and we know he ran a good race. I called the nurse and told her I was feeling worse today and they got me in for the ultrasound this coming Tuesday. Thank goodness! I’m the type of person who needs to fix things And quick! I have a standing order for that CT scan with contrast, however it was ordered by my urologist for the upper urinary system (so up to the kidneys, the part he could not see with the scope). I would imagine a CT scan would show the gynelogical system also? Or is it because the urologist didn’t intend to look at the ovaries, etc, then it will be overlooked?
Thank you for your help Loretta. I really appreciate it. I’m prayimy for you!
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They focus the CT on the requested organsstacybryan76 said:Loretta,
Loretta,
What a lovely post, and so kind. I am sorry you are having to deal with cancer, especially at that stage. My father went to heaven last April (Bladder Cancer and Lymphoma), and we know he ran a good race. I called the nurse and told her I was feeling worse today and they got me in for the ultrasound this coming Tuesday. Thank goodness! I’m the type of person who needs to fix things And quick! I have a standing order for that CT scan with contrast, however it was ordered by my urologist for the upper urinary system (so up to the kidneys, the part he could not see with the scope). I would imagine a CT scan would show the gynelogical system also? Or is it because the urologist didn’t intend to look at the ovaries, etc, then it will be overlooked?
Thank you for your help Loretta. I really appreciate it. I’m prayimy for you!
If you want them to look at your ovaries, make sure that it is noted in the CT request.
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Okay, thank you. So a CTabrub said:They focus the CT on the requested organs
If you want them to look at your ovaries, make sure that it is noted in the CT request.
Okay, thank you. So a CT without resolution of the abdomen, urinary, Andrew kidneys is not going to show ovaries if no detailed request is in the order?
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CT Scan
A CT scan should show everything. Abrub might be thinking of an MRI, which is very specific. I was diagnosed via a CT scan, which was far more definitive than an ultrasound. I would opt for the CT with contrast. If you are concerned about the radiation, which is a valid concern, since BRCA positive patients are more suceptible to it, you can take the homeopathic 'radium bromatum' for a few days to help your body eliminate the radiation. Also, don't sleep with your kids, pets or spouse the night after your scan, as you carry the radiation. I would also request a CA-125 blood test. It is the marker for ovarian cancer. Other conditions can elevate this marker, but it would offer another clue. If they suspect cancer, at all, you need to be referred to a gynecologic oncologist. This is the type of surgeon who needs to do surgery if cancer is supected. Other surgeons, including gynecologists, don't have the necessary expertise. I have had much better results, when dealing with things doctors can't diagnose, buy seeing a naturopath. It sounds as if you have a lot going on, including inflammation, based on your high CRP. Naturopaths and functional medicine doctors focus on resolving the issues at the cause, rather than prescribing drugs. Something to consider if your doctors are still stumped after all the tests. I hope this turns out not to be cancer. Good luck.
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CTs are done by body regionTethys41 said:CT Scan
A CT scan should show everything. Abrub might be thinking of an MRI, which is very specific. I was diagnosed via a CT scan, which was far more definitive than an ultrasound. I would opt for the CT with contrast. If you are concerned about the radiation, which is a valid concern, since BRCA positive patients are more suceptible to it, you can take the homeopathic 'radium bromatum' for a few days to help your body eliminate the radiation. Also, don't sleep with your kids, pets or spouse the night after your scan, as you carry the radiation. I would also request a CA-125 blood test. It is the marker for ovarian cancer. Other conditions can elevate this marker, but it would offer another clue. If they suspect cancer, at all, you need to be referred to a gynecologic oncologist. This is the type of surgeon who needs to do surgery if cancer is supected. Other surgeons, including gynecologists, don't have the necessary expertise. I have had much better results, when dealing with things doctors can't diagnose, buy seeing a naturopath. It sounds as if you have a lot going on, including inflammation, based on your high CRP. Naturopaths and functional medicine doctors focus on resolving the issues at the cause, rather than prescribing drugs. Something to consider if your doctors are still stumped after all the tests. I hope this turns out not to be cancer. Good luck.
in general, I've had the "triple" - chest, abdomen, pelvis, but my last ones were just abdomen/pelvis. So if the area isn't part of the focuse, the CT might not cover it.
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Stacy ~ It's Tuesday! Touch base w/us when U know somethingabrub said:CTs are done by body region
in general, I've had the "triple" - chest, abdomen, pelvis, but my last ones were just abdomen/pelvis. So if the area isn't part of the focuse, the CT might not cover it.
OK Stacy - Today's the day. Let us know what the plans are going forward.
Love & prayers,
Loretta
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of Course they can’t tell meLorettaMarshall said:Stacy ~ It's Tuesday! Touch base w/us when U know something
OK Stacy - Today's the day. Let us know what the plans are going forward.
Love & prayers,
Loretta
of Course they can’t tell me anything until the radiologist reads it (they said 24 hours or less probably), but oh did it hurt. At first she said it is typical because when the bowels are mashed up to the rest of the female anatomy it makes it difficult to take the right pictures. I asked what’re I was feeling the wand at the time because that’s where the pain was and she said my cervix. she asked if my PAP’s have all been okay and I said yes but 16 yeas ago I had a KEEP procedure. Then clear since. I have had two vaginal ultrasounds before this and I felt pressure but not pain like this. She took a very long time it seemed, asked lots of questions, and we talked a lot about life (school, job, etc). It feels like something isn’t right. Any thoughts?
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*LEEP
*LEEP
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Stacy~Can't comment on *LEEP~Is that anything like "SLEEP?"stacybryan76 said:*LEEP
*LEEP
Stacy ~ I'm fresh out of "fortune" cookies. Usually I just eat one and pass the message along to the first person I answer.
So you’ll just have to wait for the real ultrasound results. I've had several blood clots in my legs, and the technician really presses down hard. And of course, she doesn't share any results with me. Once I went for an ultrasound and waited an hour. I was the only one in the room for the entire hour. There wasn’t even a receptionist in the office, but I was in the right room. So I finally started for the door to find someone. But in came a nurse at the same time. She apologized for the delay, but she said she had to verify my appointment. I had complained of a lot of pain in one leg. Seems they said they had not received a written scrip from my oncologist. (Actually he had written one but this particular hospital has told me more than once that they haven’t received an order when I had already been given a copy of the scrip and I had been given an appointment date.)
So she finally had the order, and took me back to the place where I was to be examined. She said the doctor said to check both legs. Sure enough, the clot was in the opposite leg than the one that was giving me so much pain.
So we’ll just have to wait along with you to know what’s going on where!On another occasion I had an appointment for an x-ray to measure the amount of fluid around my lungs. So I go in and the lady has me stand up in front of the “box” and she takes the picture. Then I turn to the opposite side and she takes one more. Then she says, “OK, you’re good to go!” I said, “Aren’t you going to have me lie on a table and then take some more pictures?” (I had already been through that test before so I knew the routine.) She said, “Nope—that was all the doctor ordered.” But she said, “I’ll go check again just to be sure.” She returned to say, “You’re right. You’re supposed to lie on the gurney and have pictures taken from both the right and left sides.” So had I not known what was to be done, that would have been a wasted trip.
I just pass that along to remind you to always be certain that you get all the testing done that should be done. You can confirm with your doctor or his nurse exactly what you should expect when you go for certain tests.
But for now, you should be a*leep I hope!
Love Loretta
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I hear ya on staying on topLorettaMarshall said:Stacy~Can't comment on *LEEP~Is that anything like "SLEEP?"
Stacy ~ I'm fresh out of "fortune" cookies. Usually I just eat one and pass the message along to the first person I answer.
So you’ll just have to wait for the real ultrasound results. I've had several blood clots in my legs, and the technician really presses down hard. And of course, she doesn't share any results with me. Once I went for an ultrasound and waited an hour. I was the only one in the room for the entire hour. There wasn’t even a receptionist in the office, but I was in the right room. So I finally started for the door to find someone. But in came a nurse at the same time. She apologized for the delay, but she said she had to verify my appointment. I had complained of a lot of pain in one leg. Seems they said they had not received a written scrip from my oncologist. (Actually he had written one but this particular hospital has told me more than once that they haven’t received an order when I had already been given a copy of the scrip and I had been given an appointment date.)
So she finally had the order, and took me back to the place where I was to be examined. She said the doctor said to check both legs. Sure enough, the clot was in the opposite leg than the one that was giving me so much pain.
So we’ll just have to wait along with you to know what’s going on where!On another occasion I had an appointment for an x-ray to measure the amount of fluid around my lungs. So I go in and the lady has me stand up in front of the “box” and she takes the picture. Then I turn to the opposite side and she takes one more. Then she says, “OK, you’re good to go!” I said, “Aren’t you going to have me lie on a table and then take some more pictures?” (I had already been through that test before so I knew the routine.) She said, “Nope—that was all the doctor ordered.” But she said, “I’ll go check again just to be sure.” She returned to say, “You’re right. You’re supposed to lie on the gurney and have pictures taken from both the right and left sides.” So had I not known what was to be done, that would have been a wasted trip.
I just pass that along to remind you to always be certain that you get all the testing done that should be done. You can confirm with your doctor or his nurse exactly what you should expect when you go for certain tests.
But for now, you should be a*leep I hope!
Love Loretta
I hear ya on staying on top of your doctors and technicians! The same hospital did the same type of ultrasound suspecting an eotopic pregnancy 16 years ago, sent me home because too long of a wait for a CT scan, I drive 7 hours to WA state from Idaho to stay with family since I was in pain. I went to a doc the next day in my old hometown and after the nurse pushed on my appendix area and I shouted in pain, he had the nerve to not even examine me and instead ask me if I had ever been sexually abused! Sends me home because he didn’t want me waiting and jamming up the CRT scan wait at the hospital, and so I wait another day. I call again saying I’m in so much pain I can’t stand up barely and the nurse says the doctor really wanted me to stay home, it’s probsbly the flu. Finally the next day someone drives me to the ER and I limp in, people in the waiting room are telling me I could die, and they do the IV CT scan. They ask who my doc is because my appendix was the size of a chicken breast and it had ruptured! By the grace of God it walked off and all the poison didn’t get to my organs, but the nurse said I nearly died and I had a 105 temp for tso days, in the hospital for IV antibiotics for a week. No food, no water, just an IV. I was hallucinating and it was awful. I have a scar from my pelvic area up past my belly button plus an appendectomy scar. I didn’t sue, i didn’t even confront the doctor! So that taught me to listen to my body, but there is still a disconnect there! and they sent my appendix to UW med school for research. I’d like to check what they ever found!
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Hi Stacy. I’m a visitor from
Hi Stacy. I’m a visitor from the uterine cancer site. For one thing Loretta has given you much good advice ! I just wanted to comment that I had some of your same symptoms with having to urinate often andnight sweats. I first suspected urinalysis tract infection and went to a urologist. I was scheduled for more tests with him when I began bleeding and went to gynecologist where I had the vaginal ultrasound where she suspected cancer with the thickness of the endometrium. A couple weeks later I had aD+C. Another two weeks and endometrial cancer was confirmed. I had robotic surgery done by a gynechological oncologist. Results were cancer in uterus, both ovaries and two lymph nodes, so 3C. This was shocking for me alsowith no cancer in my family. The quickness of diagnosis teat results etc I think can depend on where you live and the facilities etc. I live in a mid sized city with good medical care, but we only have two gynecholicL oncologists. Anyway I have been clear for almost two years after surgery, radiation internal and external, and 6 rounds of chemo. There is hope! A cancer diagnosis is frightening, but there is hope! Prayers for you and your family!
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Update
thank got your reply Soup52, and Loretta!
Soup...I was diagnosed with Adenomyosis and told I would need a hysterectomy or just continue to manage with the birth control pills. I chose just manage right now maybe get the IUD, but the surgeon was not helpful in answering many questions. None of my symptoms were related to Adenomyosis (According to her). i saw her a week ago, and the past ten days or so I get so fatigued I need to lay down for an hour or two each day which is not normal for me. A few days ago I noticed that my ankle that I had surgery on was aching more than normal, and the ache went all the way up to my thigh. I hurt horribly behind my left knee and thought I could have a blood clot, but the immediate care doc said no I was ok. He said a little bacteria in my tribe, but all blood work fine. I have realized my lymphnodes behingbthat knee are swollen (didn’t know they existed there!), and I think that is causing the tightness. Then I noticed in my armpit, above elbow, groin, neck, and then today I noticed lymph nodes in my abdomen and going into the side of my left breast are swollen. i haven’t had a fever, and my ultrasound and ptevious CT scan (without contrast) showed no sign of tumors. I know I’ll need to go in to the doc on Monday, but with the normAl labs and no fever, does this sound like anything either you? Soup- I was poking into my abdomen and it seemed like it would be my womb I’m feeling, so firmer and then I’m pretty sure I’m feeling swollen lymph nodes. The surgeon said my uterus isn’t big enough to be affecting my other organs but I’m having trouble breathing and peeing, etc. the bleeding stopped after the gynecologist examined me... anything I should watch for over the weekend?
Thanks ladies
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Thanks Loretta, I replied toLorettaMarshall said:Stacy~Can't comment on *LEEP~Is that anything like "SLEEP?"
Stacy ~ I'm fresh out of "fortune" cookies. Usually I just eat one and pass the message along to the first person I answer.
So you’ll just have to wait for the real ultrasound results. I've had several blood clots in my legs, and the technician really presses down hard. And of course, she doesn't share any results with me. Once I went for an ultrasound and waited an hour. I was the only one in the room for the entire hour. There wasn’t even a receptionist in the office, but I was in the right room. So I finally started for the door to find someone. But in came a nurse at the same time. She apologized for the delay, but she said she had to verify my appointment. I had complained of a lot of pain in one leg. Seems they said they had not received a written scrip from my oncologist. (Actually he had written one but this particular hospital has told me more than once that they haven’t received an order when I had already been given a copy of the scrip and I had been given an appointment date.)
So she finally had the order, and took me back to the place where I was to be examined. She said the doctor said to check both legs. Sure enough, the clot was in the opposite leg than the one that was giving me so much pain.
So we’ll just have to wait along with you to know what’s going on where!On another occasion I had an appointment for an x-ray to measure the amount of fluid around my lungs. So I go in and the lady has me stand up in front of the “box” and she takes the picture. Then I turn to the opposite side and she takes one more. Then she says, “OK, you’re good to go!” I said, “Aren’t you going to have me lie on a table and then take some more pictures?” (I had already been through that test before so I knew the routine.) She said, “Nope—that was all the doctor ordered.” But she said, “I’ll go check again just to be sure.” She returned to say, “You’re right. You’re supposed to lie on the gurney and have pictures taken from both the right and left sides.” So had I not known what was to be done, that would have been a wasted trip.
I just pass that along to remind you to always be certain that you get all the testing done that should be done. You can confirm with your doctor or his nurse exactly what you should expect when you go for certain tests.
But for now, you should be a*leep I hope!
Love Loretta
Thanks Loretta, I replied to to “Soups” comment... was meant for you also!
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Stacy~Asked Dr. Google re Adenomyosis~I didn't like what he said
Dear Stacy ~
Have read a bit about "Adenomyosis" now that you posted this finding. There is too much I would like to say about what I am reading. And based on what I'm learning, it appears that this is not something minor. But it is very late here on the East Coast. And I thought I would check the site one more time before going to bed. And that's when I saw your post. Because of the lateness of the hour, I will not begin to pen you a long letter tonight, but tomorrow Lord willing, I will answer in more detail. If this were my diagnosis, I would not write this off as "something I could live with." Have read a bit about it tonight, and if it were me, and given the pain you've endured thus far, a hysterectomy would be my choice. And that would mean, "take everything out!" I don't think you're planning to have any more children based on what you've shared with us. IF IT WERE ME, I would not leave anything to chance. I know this isn't your first choice....BUT! And lastly, can you find a gynecologic oncologist to take over your treatments?
But for now, I'm too tired to read as much as I would like, so stay tuned.
Concerned~
Loretta
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I agree about theLorettaMarshall said:Stacy~Asked Dr. Google re Adenomyosis~I didn't like what he said
Dear Stacy ~
Have read a bit about "Adenomyosis" now that you posted this finding. There is too much I would like to say about what I am reading. And based on what I'm learning, it appears that this is not something minor. But it is very late here on the East Coast. And I thought I would check the site one more time before going to bed. And that's when I saw your post. Because of the lateness of the hour, I will not begin to pen you a long letter tonight, but tomorrow Lord willing, I will answer in more detail. If this were my diagnosis, I would not write this off as "something I could live with." Have read a bit about it tonight, and if it were me, and given the pain you've endured thus far, a hysterectomy would be my choice. And that would mean, "take everything out!" I don't think you're planning to have any more children based on what you've shared with us. IF IT WERE ME, I would not leave anything to chance. I know this isn't your first choice....BUT! And lastly, can you find a gynecologic oncologist to take over your treatments?
But for now, I'm too tired to read as much as I would like, so stay tuned.
Concerned~
Loretta
I agree about the hysterectomy. My only reason not to have one was because I was in school, but I decided not to continue with grad school anyways. the surgeon said We could opt to leave my overuse. I am assuming I’d need to have help from my mom for a couple weeks. My kids can help, but my 18 year old son is not dependable (too moody). My daughter is helpful but I can’t put it all on her, afterall we also have a one year old puppy! i could call a gyno oncologist, but without a cancer diagnosis is that warranted? Thanks for lookinG out for me!
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Stacy~Hope U have begun 2C the light @ the end of the tunnel
Hello again Stacy –
First let me say you are wise to have the hysterectomy, and the sooner, the better. I’ve included a link from the Mayo Clinic. Actually it says: “The only way to confirm adenomyosis is to examine the uterus after hysterectomy. However, pelvic imaging such as ultrasound and MRI can detect signs of it.” And to answer your question, for diseases affecting the female reproductive organs, a gynecologic oncologist is more qualified than an oncologist that treats cancers in general. So yes, especially since you’re still actually in the “exploratory” stage, who knows what else might be found. We pray that the problem will be cured by having a hysterectomy. Incidentally, if you are having difficulty knowing how to find a particular gynecologic oncologist in your area, why not call the best hospitals in your area, and tell them you need a recommendation. Ask them whom they would recommend. The USNews Health Report does a grand job of breaking down qualifications of doctors—what their specialty is—and how well they rank compared to others in that same field. You have suffered for so long now that I would only want to be treated by a “gynecologic oncologist.”
Here is a link that might start you on your way to finding a good doctor:https://health.usnews.com/best-hospitals/area
And on another note--You said, “…They ask who my doc is because my appendix was the size of a chicken breast and it had ruptured! By the grace of God it walked off and all the poison didn’t get to my organs, but the nurse said I nearly died and I had a 105 temp for two days, in the hospital for IV antibiotics for a week. No food, no water, just an IV. I was hallucinating and it was awful. I have a scar from my pelvic area up past my belly button plus an appendectomy scar. I didn’t sue, i didn’t even confront the doctor! So that taught me to listen to my body, but there is still a disconnect there! and they sent my appendix to UW med school for research. I’d like to check what they ever found!...”
In going back over our conversations I note that in your comments about your “ruptured appendix”, seems you haven’t heard from University of Washington Medical School for research. I do believe there is a “disconnect” that needs a “connection.” Not that you need to be frightened any more than you already are, but a ruptured appendix could have had dire consequences and you should have received a full report. If this were me, I would still contact them and ask for a copy of the results. It certainly should be a part of your personal medical record.
I keep a record of all my doctor’s visits and what they find since my diagnosis of cancer. Moreover, it comes in handy when I go to a new doctor and they hand me 4 pages of questions and I’m supposed to answer every one of them right off the top of my head. Seemingly they want to know everything except perhaps the name of my great grandmother. But on second thought, if she had a history of cancer, they would want to know that as well. So I would pursue that just to be able to “fill in the blanks” of all the things that you have endured so far. Also I ask for copies of my scans and medical reports each time I go to see a physician. When I have a PET/CT scan, I ask for a copy of the disc as well as the completed report when it is read and interpreted by a qualified physician.
So Stacy, the bottom line as I see it would be for you to have a complete hysterectomy. If I were you, I would NOT leave the ovaries. Better to deal with some hot flashes if necessary, than to deal with Stage IV Ovarian Cancer, as I am doing. At age 36, I was experiencing heavy bleeding and painful periods. My gynecologist said, “If you’re not going to have more children, you could have a hysterectomy.” Well, that was fine with me. Only then, there were no “laparoscopic” hysterectomies. I had some major incisions and a 6-week recovery period. And to make matters worse, at that time “no smoking” had not been instituted in hospitals. I was in a semi-private room, and the patient next to me smoked and so did many of the visitors she had. The smoke bothered me and caused me to COUGH which was painful for my incisions. Why didn’t I have enough sense to ask to be moved to another room? I’ve learned to speak up for myself more as the years have “rushed by.” I am now 79.
But Stacy, doctors didn’t know back then what they now have come to believe. Today it is felt that ovarian cancer actually begins in the fallopian tubes. So when my gynecologist removed my uterus and left the tubes and ovaries intact, he nor I thought anything of it. But now I WARN all women contemplating a hysterectomy (if they’re through child-bearing) to have it all removed. Also I didn’t know that one can have Ovarian Cancer even AFTER their ovaries have been removed. I do now. So I would strongly suggest that you leave nothing to chance.
Moreover, I would want a well-qualified surgeon to perform the laparoscopic hysterectomy. You will have a much quicker recovery. So do your homework Stacy. Ask your surgeon how much recovery time will be required, and what you are allowed to do during that time frame. I wish you well. Now it seems your next duty is to find a well-qualified gyn/onc in your area that performs the laparoscopic procedure. It will be great to feel good again. You’ve been in pain long enough.
Love & prayers,
Loretta
(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) Blessed to still be living 5 years later.)
__________________________________________________________________
Allow me first to correct a web address that I have listed previously. I gave the illustration of how the Mayo Clinic in Rochester, MN said that the vast number of patients who came to them for a SECOND opinion had indeed been diagnosed wrongly. The correct link for that info is here: Note – This reference link has been changed. I checked it on June 26, 2018 to be certain it was still in the same place and it is NOT. So here is the new link for necessity of SECOND opinions. I kept the wording from the original text that I first read, but the info is now reworded a bit and given a "new address."
1. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/
- ____By Elizabeth Zimmermann
Mayo Clinic researchers demonstrate value of second opinions
April 4, 2017
ROCHESTER, Minn. — Many patients come to Mayo Clinic for a second opinion or diagnosis confirmation before treatment for a complex condition. In a new study, Mayo Clinic reports that as many as 88 percent of those patients go home with a new or refined diagnosis – changing their care plan and potentially their lives. Conversely, only 12 percent receive confirmation that the original diagnosis was complete and correct.
These findings were published online today in the Journal of Evaluation in Clinical Practice. The research team was led by James Naessens, Sc.D., a health care policy researcher at Mayo Clinic.
Why get a second opinion
When people are sick, they look to their doctor to find solutions. However, physicians don’t always have the answers. Often, because of the unusual nature of the symptoms or complexity of the condition, the physician will recommend a second opinion. Other times, the patient will ask for one.
This second opinion could lead to quicker access to lifesaving treatment or stopping unnecessary treatments. And a second opinion may reduce stress in a patient’s extended family, when they learn the new diagnosis does not carry dire genetic implications. These scenarios can result from diagnostic error.
Odds are good the diagnosis will be adjusted
To determine the extent of diagnostic error, the researchers examined the records of 286 patients referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester over a two-year period (Jan. 1, 2009, to Dec. 31, 2010). This group of referrals was previously studied for a related topic. It consisted of all patients referred by nurse practitioners and physician assistants, along with an equal number of randomly selected physician referrals.
The team compared the referring diagnosis to the final diagnosis to determine the level of consistency between the two and, thus, the level of diagnostic error. In only 12 percent of the cases was the diagnosis confirmed.
In 21 percent of the cases, the diagnosis was completely changed; and 66 percent of patients received a refined or redefined diagnosis. There were no significant differences between provider types.
“Effective and efficient treatment depends on the right diagnosis,” says Dr. Naessens. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”
Risks of cost containment
To manage costs in a health care environment with ever-increasing costs, health insurers often limit access to care outside their network, effectively limiting referrals. Further, primary care providers may be more confident in their diagnostic expertise than warranted in a particular case, or patients may lack the knowledge or assertiveness to request a referral.
“This may prevent identification of diagnostic error, and could lead treatment delays, complications leading to more costly treatments, or even patient harm or death,” says Dr. Naessens. “We want to encourage second opinions when the provider is not certain.”
The National Academy of Medicine cites diagnostic error as an important component in determining the quality of health care in its new publication, Improving Diagnosis in Health Care:
Despite the pervasiveness of diagnostic errors and the risk for serious patient harm, diagnostic errors have been largely unappreciated within the quality and patient safety movements in health care. Without a dedicated focus on improving diagnosis, these errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity.
“Referrals to advanced specialty care for undifferentiated problems are an essential component of patient care,” Dr. Naessens says. “Without adequate resources to handle undifferentiated diagnoses, a potential unintended consequence is misdiagnosis, resulting in treatment delays and complications, and leading to more costly treatments.”
The researchers identified costs associated with second opinions, and Dr. Naessens notes, “Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly.”
He says that he and his team are pleased by the National Academy of Medicine’s call for dedicated federal funding for improved diagnostic processes and error reduction. They also plan further research on diagnostic errors and hope to identify ways to improve the process.
Dr. Naessens leads quality and safety research initiatives within the Office of Health Care Practice and Policy in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. He is also the scientific director for the Florida team within the center…”
________________________________________________________________
2. https://www.seattletimes.com/opinion/misdiagnosis-millions-of-patients-are-being-treated-for-the-wrong-conditions/
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3. https://study.com/articles/Gynecologic_Oncologist_Job_Description_Duties_and_Requirements.html
“Gynecologic Oncologist: Job Description, Duties and Requirements…
Gynecologic oncologists are physicians with specialized knowledge to diagnose and treat cancer of the female reproductive system. Working in this field requires significant education and specialized training.
Essential Information
Gynecologic oncologists evaluate and treat cancer found in the female reproductive system. They can perform surgery, prescribe therapy and are responsible for related medical procedures. Gynecologic oncologists require eight years of education and training beyond a bachelor's degree and must earn a license to practice. Board certification is also available in the specialty.
Required Education
Prerequisite college courses (2-4 years)
Medical school (4 years)
Obstetrics & gynecology residency (4 years)
Gynecologic oncology fellowship (3-4 years)Licensure & Certification
Board certification available
State medical license requiredProjected Job Growth (2014-2024)
14% (for all types of physicians and surgeons)*
Median Salary (2016)
$243,317 (for all oncologists)**
Sources: *U.S. Bureau of Labor Statistics; **Payscale.com
Job Description for a Gynecologic Oncologist
Gynecologic oncologists are physicians who specialize in the diagnosis and treatment of cancer in female reproductive organs. They're trained in a variety of diagnostic techniques and management procedures, such as surgery on reproductive organs, radiation therapy and chemotherapy. They can also perform medical procedures on non-reproductive organs affected by gynecologic cancer treatment such as the gastrointestinal and urinary tracts.
Many oncology professionals work in private practices or clinics, but make regular rounds to their patients who are confined to hospitals. They can also teach in medical schools or perform research.
Duties of a Gynecologic Oncologist
Gynecologic oncologists perform physical evaluations and collect detailed medical histories. In addition to medical duties, they educate patients and their families on various forms of cancer, possible progression and treatment options. Diagnostic techniques that can be employed include staining, tissue sampling procedures and medical imaging.
After identifying normal cells, benign conditions and malignancies, gynecologic oncologists develop a plan for treatment and therapy. Therapy options might include treatment of the related effects of cancer, like shock or renal failure. They could also incorporate nutritional aspects and blood transfusions into a treatment plan. They typically manage nurses and administrative workers, maintain medical records and refer patients to other medical specialists as necessary.
Requirements to Become a Gynecologic Oncologist
Education Requirements
Like other physicians, gynecologic oncologists must complete up to eight years of combined undergraduate and medical school education. They can earn either a Doctor of Medicine (M.D.) or Doctor of Osteopathic Medicine (D.O.) degree. After graduation, they must complete a 4-year general residency in obstetrics and gynecology. Following residency, they could continue their residency or seek a fellowship opportunity in general oncology or gynecologic oncology, which generally take 3-4 years. In total, following high school, gynecologic oncologists have completed about 15 years of education…”
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4. https://www.mayoclinic.org/diseases-conditions/adenomyosis/symptoms-causes/syc-20369138
Overview
Adenomyosis
Adenomyosis (ad-uh-no-my-O-sis) occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result.
The cause of adenomyosis remains unknown, but the disease usually resolves after menopause. For women who have severe discomfort from adenomyosis, hormonal treatments can help. Removal of the uterus (hysterectomy) cures adenomyosis.
Symptoms
Sometimes, adenomyosis causes no signs or symptoms or only mild discomfort. However, adenomyosis can cause:
- Heavy or prolonged menstrual bleeding
- Severe cramping or sharp, knifelike pelvic pain during menstruation (dysmenorrhea)
- Chronic pelvic pain
Your uterus might get bigger. Although you might not know if your uterus is enlarged, you may notice that your lower abdomen feels tender or causes pelvic pressure.
Diagnosis
Your doctor may suspect adenomyosis based on:
- Signs and symptoms
- A pelvic exam that reveals an enlarged, tender uterus
- Ultrasound imaging of the uterus
- Magnetic resonance imaging (MRI) of the uterus
In some instances, your doctor might collect a sample of uterine tissue for testing (endometrial biopsy) to verify that your abnormal uterine bleeding isn't associated with another serious condition. But an endometrial biopsy won't help your doctor confirm a diagnosis of adenomyosis.
The only way to confirm adenomyosis is to examine the uterus after hysterectomy. However, pelvic imaging such as ultrasound and MRI can detect signs of it.
Other uterine diseases can cause signs and symptoms similar to adenomyosis, making adenomyosis difficult to diagnose. Conditions include fibroid tumors (leiomyomas), uterine cells growing outside the uterus (endometriosis) and growths in the uterine lining (endometrial polyps).
Your doctor might conclude that you have adenomyosis only after ruling out other possible causes for your signs and symptoms.
Treatment
Adenomyosis often goes away after menopause, so treatment might depend on how close you are to that stage of life.
Treatment options for adenomyosis include:
- Anti-inflammatory drugs. Your doctor might recommend anti-inflammatory medications, such as ibuprofen (Advil, Motrin IB, others), to control the pain. By starting an anti-inflammatory medicine one to two days before your period begins and taking it during your period, you can reduce menstrual blood flow and help relieve pain.
- Hormone medications. Combined estrogen-progestin birth control pills or hormone-containing patches or vaginal rings might lessen heavy bleeding and pain associated with adenomyosis. Progestin-only contraception, such as an intrauterine device, or continuous-use birth control pills often lead to amenorrhea — the absence of your menstrual periods — which might provide some relief.
- Hysterectomy. If your pain is severe and no other treatments have worked, your doctor might suggest surgery to remove your uterus. Removing your ovaries isn't necessary to control adenomyosis…”
- ____________________________________________________________________
5. https://www.medicalnewstoday.com/articles/321296.php
What to know about adenomyosis
Last reviewed Fri 23 March 2018
Reviewed by Holly Ernst, PA-C
1. Overview
2. Symptoms
3. Causes
4. Risk factors
5. Treatment
6. Adenomyosis vs. endometriosis
7. Pregnancy
8. Diagnosis
10. Outlook
Adenomyosis is a condition where the cells of the uterine lining grow into the muscular wall of the uterus.
Adenomyosis is similar to endometriosis and can cause similar symptoms or no symptoms at all.
Adenomyosis is a relatively widespread condition. The National Health Service (NHS) in the UK estimate that 1 in 10 women have adenomyosis and that it is most common in women aged 40 to 50.
This article gives an overview of adenomyosis, including symptoms, causes, diagnosis, complications, and treatment.
What is adenomyosis?
Adenomyosis may cause similar symptoms to endometriosis.
Adenomyosis is a condition where the cells that usually grow outward into the uterus lining instead grow inward into the uterus muscle.
During a woman's menstrual cycle, these "trapped" cells become stimulated, which can make menstrual cramps and bleeding more severe than usual.
The symptoms of adenomyosis vary throughout the menstrual cycle because of rising and falling levels of estrogen, which affect the shedding of the uterus lining.
Symptoms usually go away or improve after menopause, when a woman's estrogen levels naturally decrease…
Risk factors
Multiple pregnancies may increase the risk of adenomyosis.
Some risk factors that may result in adenomyosis include:
- Age. Though this condition can affect women of any age, most women diagnosed with adenomyosis are in their 40s and 50s.
- Pregnancy. A high percentage of women with adenomyosis have had multiple pregnancies.
- Uterine surgery. Having previous surgery on the uterus, including cesarean delivery, significantly raises the risk of adenomyosis.
Treatment
Without treatment, adenomyosis may remain the same or symptoms can get worse.
Treatment is not necessary if a woman has no symptoms, is not trying to get pregnant, or is nearing menopause, which is when most women find relief from their symptoms.
However, there are many different treatment options available to women with this condition:
- Anti-inflammatory medications. Medications such as ibuprofen can reduce pain and discomfort.
- Hormonal medications. Some hormonal treatments, such as oral contraceptive pills, progestin IUD's, or injection (Depo-Provera), can help lessen the symptoms.
- Injectable medications. These medications can induce false or temporary menopause. These are only used in the short-term and are not suitable for long-term use.
- Uterine artery embolization. This involves placing a tube in a major artery in the groin and injecting small particles into the area affected by adenomyosis. This stops the blood supply reaching the affected area, which will shrink the adenomyosis and reduce symptoms.
- Hysterectomy. The only definitive treatment for adenomyosis is complete removal of the uterus. It is not a good option for women who may still want to become pregnant…”
- __________________________________________________________
Other uterine diseases can cause signs and symptoms similar to adenomyosis, making adenomyosis difficult to diagnose. Conditions include fibroid tumors (leiomyomas), uterine cells growing outside the uterus (endometriosis) and growths in the uterine lining (endometrial polyps).
Your doctor might conclude that you have adenomyosis only after ruling out other possible causes for your signs and symptoms.
Treatment
Adenomyosis often goes away after menopause, so treatment might depend on how close you are to that stage of life.
Treatment options for adenomyosis include:
- Anti-inflammatory drugs. Your doctor might recommend anti-inflammatory medications, such as ibuprofen (Advil, Motrin IB, others), to control the pain. By starting an anti-inflammatory medicine one to two days before your period begins and taking it during your period, you can reduce menstrual blood flow and help relieve pain.
- Hormone medications. Combined estrogen-progestin birth control pills or hormone-containing patches or vaginal rings might lessen heavy bleeding and pain associated with adenomyosis. Progestin-only contraception, such as an intrauterine device, or continuous-use birth control pills often lead to amenorrhea — the absence of your menstrual periods — which might provide some relief.
- Hysterectomy. If your pain is severe and no other treatments have worked, your doctor might suggest surgery to remove your uterus. Removing your ovaries isn't necessary to control adenomyosis.
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6. https://healthery.com/health/adenomyosis/?gclid=EAIaIQobChMI0NPj5vv82wIVBQaGCh19QgVIEAAYBiAAEgL16vD_BwE
“…Adenomyosis Causes
While doctors know what adenomyosis is, they don’t know what causes it. Studies have been done in the past on the disease.
There are several theories that have emerged as result of those studies:
- One theory is some women are born with extra endometrial tissue in the uterine wall. At some point in adulthood, it grows until it punctures the uterine wall.
- Another theory is that adenomyosis is caused by the invasive growth of abnormal tissue from cells that pushes into the uterine wall.
- A third theory blames stem cells in the uterine wall for the condition.
- A fourth suggests adenomyosis occurs because of inflammation in the uterus after childbirth that creates the right conditions for a puncture.
Also thanks to previous studies, medical professionals have an idea of who could be at risk of developing it. Most of those diagnosed are middle-aged women who have given birth to children or had surgery performed on their uterus at some point in the past. Some studies state that women as young as 30 years old are at risk if they have children…”
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7. https://www.medicalnewstoday.com/articles/149109.php?iacp
“What's to know about endometriosis?
Last updated Thu 4 January 2018
Reviewed by Debra Rose Wilson, PhD, MSN, RN, IBCLC, AHN-BC, CHT
2. Symptoms
3. Treatment
4. Diagnosis
5. Diet
6. Causes
7. Risk factors
Endometriosis is an incurable but manageable gynecological condition.
It occurs when endometrial implants, comprised of tissue normally found within the uterus, are present in other areas of the body.
As the tissue continues to thicken, break down, respond to menstrual cycle hormones, and bleed during the menstrual cycle, endometriosis forms deep inside the body.
Scar tissue and adhesions form, and this can cause organ fusion and anatomical changes.
Endometriosis is thought to affect around 11 percent of women in the United States aged between 15 and 44 years.
Fast facts on endometriosis
Here are some key points about endometriosis. More information is in the main article.
- Endometriosis affects between 6 and 10 percent of women of reproductive age worldwide.
- The condition appears to be present in a developing fetus, but estrogen levels during puberty are thought to trigger the symptoms.
- Symptoms are generally present during the reproductive years.
- Most women go undiagnosed, and in the U.S. it can take around 10 years to receive a diagnosis.
- Allergies, asthma, chemical sensitivities, autoimmune diseases, chronic fatigue syndrome, fibromyalgia, breast cancer, and ovarian cancer are linked to women and families with endometriosis.
What is endometriosis?
Endometriosis sees the endometrial implant tissue, normally found, in the uterus build up in other parts of the body.
Endometrial tissue consists of gland, blood cells, and connective tissue. It normally grows in the uterus, to prepare the lining of the womb for ovulation.
Endometrial implants are buildups of endometrial tissue that grow in locations outside the uterus.
When they grow outside the uterus, this is called endometriosis.
They can develop anywhere in the body, but they usually occur in the pelvic area.
They may affect:
- the ovaries
- the fallopian tubes
- the peritoneum
- the lymph nodes
Normally, this tissue is expelled during menstruation, but displaced tissue cannot do this.
This leads to physical symptoms, such as pain. As the lesions grow larger, they can affect bodily functions. For example, the fallopian tubes may be blocked.
The pain and other symptoms can affect different areas of life, including the ability to work, medical care costs, and difficulty maintaining relationships.
Symptoms
Endometriosis can lead to painful cramps in the pelvis.
Other medical conditions such as pelvic inflammatory disease (PID), ovarian cysts, and irritable bowel syndrome (IBS) can mimic the symptoms of endometriosis.
Symptoms of endometriosis include:
- Severe menstrual cramps, unrelieved with NSAIDS
- Long-term lower-back and pelvic pain
- Periods lasting longer than 7 days
- Heavy menstrual bleeding where the pad or tampon needs changing every 1 to 2 hours
- Bowel and urinary problems including pain, diarrhea, constipation, and bloating
- Bloody stool or urine
- Nausea and vomiting
- Fatigue
- Pain during intercourse
- Spotting or bleeding between periods
Pain is the most common indication of endometriosis, but the severity of the pain does not always correlate with the extent of the disease.
Pain often resolves following menopause, when the body stops producing estrogen production. However, if hormone therapy is used during menopause, symptoms may persist.
Pregnancy may provide temporary relief from symptoms.
Complications
Complications include:
- Infertility, which can affect 50 percent of those with the condition.
- increased risk of developing ovarian cancer or endometriosis-associated adenocarcinoma
- ovarian cysts
- inflammation
- scar tissue and adhesion development
- intestinal and bladder complications
It is important to see a health care provider about symptoms, to avoid future complications…”
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8. https://www.medicalnewstoday.com/articles/321296.php#endometriosis
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9. https://www.youtube.com/watch?v=SqZ-IcjVBHw
Published on Jan 12, 2012 – a short informative video about the advantages of laparoscopic hysterectomies -
“It used to be when a woman needed a hysterectomy she could expect full abdominal surgery with a long recovery time. Dr. Melissa Lee uses less invasive methods that can cut the patients downtime in half. ..”
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10. https://www.youtube.com/watch?v=zprVf7hETcw
This is a 17:49 minute video of a l Robot-Assisted Hysterectomy Procedure
being performed. By now I can look at all of them without saying, “Oh my—oh me—ugghh, etc”. I find them so interesting. This doctor is pointing out all the different parts in our reproductive system. It is well worth the time to watch. Incidentally, he mentions the “Peritoneum”. I was first diagnosed with “Peritoneal Carcinomatosis”. I had multiple tumors floating around in the Peritoneal fluid in my abdominal cavity. When I had a SECOND opinion, it was revealed that the cancer was also in my ovaries. But I hope nothing like that will be part of your diagnosis.
Bon Secours St. Francis Health System - Published on Dec 15, 2015 -Learn more about the advantages of robot-assisted surgery from gynecological surgeons Edward Heidtman, MD, and David Godwin, MD of the Bon Secours Medical Group. Dr. Heidtman will perform a robot-assisted hysterectomy and provide commentary during the procedure, while Dr. Godwin will explain how the da Vinci Surgical System is operated.
_______________________________End of references________________________
0 -
Stacy~3 wks. seems like an eternity when U R WAITING 4 ANSWERS
Dear Stacy –
First, far be it from me to complain about someone who writes a long letter. Anyone who reads after me knows that I am long winded. Much of the time I haven’t the foggiest notion of what their problem is but I do try to find reputable sites on the web that will help them.
But to answer your question, seems to me that your gynecologist is the one most willing to conduct more tests. You write: “Yesterday I went to my gynecologist and she did a pelvic exam. Lots of old blood. Bad pain in stomach area as she placed pressure. She said I could have really bad endometriosis, and at some point in the appointment she mentioned laparoscopic diagnostic procedure to find out the problem. She scheduled an intravaginal ultrasound check my ovaries since it had been two years. The appointment is not until 6/19. I don’t want to wait that long.”
My question is, “Do you have a choice?” Who else can you consult within the next 3 weeks that will be willing to do more for you in the way of testing?”
Secondly, does your gynecologist happen to be an gynecologic oncologist? These are especially trained to treat problems in the female anatomy. They have much more special training. Would it be possible that your gynecologist knows one that she could recommend?
Has she mentioned a “PET/CT with contrast?” My oncologist always orders a PET/CT for me when checking the progression of my Stage IV Ovarian Cancer. Furthermore, my first diagnosis was “Peritoneal Carcinomatosis” discovered by my local hospital when a CT was performed. Not until my second opinion at the University of Pittsburgh Medical Center where laparoscopic procedures were done and also a PET/CT scan, was it discovered that I also had cancer in both my ovaries. So it sounds to me that you’ve been on “Square One” for the past two years. Yes, I know 3 weeks seems to be an eternity, but in light of what you’ve endured so far, looks like your gynecologist is the “quickest route” to beginning to have some real testing done to try and find your apparent problem.
Stacy, there’s no time to ever fit sickness into our busy schedules, but when it happens, finding the source and hopefully fixing it, becomes priority #1.
And I do hope that you are keeping copies of all your medical records so that anyone you consult can readily read them and assess your possible problems more quickly.
Incidentally, with each PET/CT scan, the medical team always says, “Drink lots of water”. So be sure to do that to flush out your kidneys as much as is possible. Recently, I had a PET/CT scan. When it came time to drink the contrast, the tech asked me, “What flavor do you like?” I said, “Actually I don’t like any of them.” I said, “They cause me to have diarrhea.” She said, “Well, I don’t have to give it to you if you don’t want it.” Now I was going to drink it, but she insisted I didn’t have to. I questioned her words in my mind, but not until later did I realize that the test would be more conclusive for those who drank the contrast. Well, when my oncologist was discussing the results of the test with me, it had been noted in that written report that some things could not be clearly assessed because “no contrast” was given. So I’ll never make that mistake again. In our lives we always have to endure lots of unpleasantries—life is like that you know. So when it comes to thorough testing, spare nothing to get the best results I say.
And Stacy, we all know about anxious days and sleepless nights. And not knowing what’s going on inside your body, allows your mind to “run wild” with “what if this or what if that.” So it seems to me that your first priority is going to have to find a competent physician that will order a myriad of tests to finally diagnose your problem. You obviously have one!
We here always take time to listen, although we don’t always know how to help. We just sympathize with our sisters whose “organs are misbehaving!” Naturally, we hope you will finally get the kind of testing that you need, and that it will be something less than cancer. However, it’s only natural for you to consider that as a possibility given the history of some members of your family, and your own BRCA status.
You’re very young, although many “young women” begin to bemoan the fact that they’ve turned 40. Actually, I think many of us just began to feel we had it all together by the age of 40—or at least I did. It’s a great age to be. You’ve got two teenagers to raise and that certainly requires a lot from a mom. And then you’re in grad school, and obviously hope to be able to finish that. Dragging through each day has got to be overwhelming. We can all understand your emotional condition to say nothing about the physical problems you’re experiencing. I’m sorry you are in such a dilemma.
Once cancer enters our domain, our priorities are rearranged for us, and everything else in our world takes second place. My mama always said, “It money can fix it, it ain’t a problem!” And I’ve added to that—“If it ain’t cancer—it’s not a problem.” Now naturally, I know whatever is causing us hurt, really is a problem, but how we all wish that whatever we have would have a “rosy ending.”
Just today, I’ve learned that the notable Charles Krauthammer has written a poignant letter. He says he has only weeks to live. And yes, cancer is the culprit. He says he has “no regrets”. I’m sorry to hear of his imminent departure from this life. Yes, I’m sure he had money, but cancer often demands more of us than we can pay. http://www.foxnews.com/politics/2018/06/08/fox-news-star-charles-krauthammer-reveals-has-weeks-to-live-in-heartbreaking-letter.html
Cancer has a way of making us aware of how fragile our lives are. Family, friends and life are no longer taken for granted. Like Charles, to live our life in such a way that we can say at the end of it, “I have no regrets” says it all, does it not? Personally, I don’t think I can say that, but I’ve asked God’s forgiveness for “going my own way often. And I know that while my Stage IV cancer will progress, God has given us the promise of a better life in the world to come. Since my ultimate destination is Heaven, God won’t abandon me while I’m here on earth. However, He didn’t promise me a “rose garden”. Those lovely roses often have thorns and cancer is one of them.
So Stacy, I’ll be praying that you will finally get the answers you so desperately need. If I were you, I think “toughing it out” for 3 more weeks is your best bet for now. May God guide you in finding the best doctors and the best treatment.
Lovingly,
Loretta
Peritoneal Carcinomatosis/Ovarian Cancer Stage IV right from the beginning in November of 2012, and thanking God He has allowed me to live much longer than I dreamed.
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1. https://www.sgo.org/patients-caregivers-survivors/what-is-a-gynecologic-“oncologist/
What is a gynecologic oncologist?
A gynecologic oncologist is a physician who specializes in diagnosing and treating cancers that are located on a woman’s reproductive organs.
Gynecologic oncologists have completed obstetrics and gynecology residency and then pursued subspecialty training through a gynecologic oncology fellowship.
Residency takes four years to complete, while fellowship involves three to four additional years of intensive training about surgical, chemotherapeutic, radiation, and research techniques that are important to providing the best care for gynecologic cancers.
Physicians who complete this training are eligible to take both the obstetrics and gynecology board exam and the gynecologic oncology board exam.
The gynecologic oncologist serves as the captain of a woman’s gynecologic cancer care team. It is important to consult with a gynecologic oncologist before treatment is started so that the best treatment regimen is chosen for you.
Seek a Specialist
SGO’s Seek a Specialist includes actively practicing specialists in all professions related to gynecologic cancer.”
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2. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/
http://www.fox9.com/health/study-88-percent-of-referrals-receive-different-diagnosis-at-mayo-clinic
[My note as of Sunday, July 1, 2018 - I've had to change the web address link. Since I wrote this letter, the link address changed and had nothing to do with SECOND opinions at Mayo Clinic. That happens to me sometimes. So I've kept the wording from my original document, but put a new address link here. Bottom line--2nd opinions are critical to getting treated correctly!
Mayo Clinic says get a second opinion – first ones are frequently wrong- by Melissa Turtinen April 4, 2017 12:17 pm
If you’re diagnosed with an illness, you might want to get a second opinion.
The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.
The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”
The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:
- Only 12 percent of patients left the Mayo Clinic with the same diagnosis.
- In 21 percent of cases, the diagnosis was changed completely.
- In 66 percent of patients, their diagnosis was refined or redefined.
“Effective and efficient treatment depends on the right diagnosis,” Dr. James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”
A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.
“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.
How to ask for a second opinion
It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.
Here are some tips about seeking a second opinion:
– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.
– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.
– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.
– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.
For more information on when and how to get a second opinion, click here… melissa@gomn.com”
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3. http://www.seattletimes.com/opinion/misdiagnosis-millions-of-patients-are-being-treated-for-the-wrong-conditions/
“Misdiagnosis: Millions of patients are being treated for the wrong conditions
Originally published April 27, 2012 at 3:00 pm Updated April 27, 2012 at 5:01 pm
Despite expensive new technologies, millions of patients worldwide are being treated for the wrong conditions, writes Evan Falchuk, vice chairman of Best Doctors, Inc., in Boston. Misdiagnosis means needless suffering and hundreds of millions of dollars wasted each year. By Evan Falchuk
WE read and hear a lot of headlines about health-care reform and related costs and hurdles. What we hear a lot less of, though, is misdiagnosis and why correcting the situation should be made a priority.
Despite our “latest and greatest” technologies, 15 percent of all medical cases in developed countries are misdiagnosed, according to The American Journal of Medicine. Literally millions of patients worldwide are being treated for the wrong conditions every year. The Mayo Clinic Proceedings found that 26 percent of cases were misdiagnosed while, according to The Journal of Clinical Oncology, up to a startling 44 percent of some types of cancer are misdiagnosed.
These statistics should be getting a lot more attention.
Misdiagnosis means needless suffering for patients and their families, and in many cases, even lost lives. Secondarily, it also means nearly one-third of the $2.7 trillion spent each year on health care in the U.S. are considered to be wasted dollars.
So how can this still be occurring so regularly, and why have misdiagnosis rates not changed much over the past 30 years?
I believe five root causes explain the situation.
First, our health-care system is greatly fragmented. When there are so many opportunities to delay or misread tests, miscommunicate findings or order the wrong tests in the first place, the odds of getting the right diagnosis and right treatment too often are stacked against the patient.
A second root cause, according to Dr. Eta S. Berner and Dr. Mark L. Graber’s compelling article “Diagnostic Error: Is Overconfidence the Problem?”, may well be a physician’s overconfidence in his or her diagnostic ability. Once doctors have made up their mind about a patient’s condition, and once a diagnosis has been reached and the patient is sent down a treatment path, it’s very, very hard to step off that path.
This leads to the third root cause of misdiagnosis, which stems from the way doctors are trained to think. Dr. Jerome Groopman, one of the world’s foremost thinkers on diagnostic error, believes today’s “rigid reliance on evidence-based medicine” (reaching treatment decisions based on statistically proven data) is largely to blame for many diagnoses that are missed or off the mark.
The fourth root cause boils down to time, or lack thereof. Many time-strapped doctors today typically spend 10 to 15 minutes or less with each patient — not because they don’t care, but because there simply are not enough hours in the day to meet demand for in-depth, more detail-oriented care.
The fifth root cause of misdiagnosis is the still-growing number of subspecialty areas in which physicians practice. Whereas in earlier years doctors might specialize in one certain type of cancer, a growing number of them now choose to focus on the subset of a subcategory of a particular type of cancer. This is less than ideal if your initial treating doctor lacks in-depth training in the exact type of illness you have.
So what can be done to reverse course and shrink misdiagnosis rates to something closer to zero?
Raising awareness of the issue and its causes among physicians is sorely needed, as well as more in-depth exams and data analysis, to include such vital factors as carefully examining a patient’s complete, detailed medical history.
Teaching medical students in a way that doesn’t always center on looking for the quickest, easiest diagnosis could mean better diagnoses for millions of people every year. Medical students are trained that “when you hear hoof beats, think horses, not zebras.” This cognitive shortcut generally works well, but combined with the pressured reality of modern medical practice, it impacts a doctor’s capacity for critical thinking.
In today’s system, doctors easily see a hundred or more patients a week, and often spend scant minutes with each — nowhere near the time needed to examine all medical possibilities and important related factors like a patient’s full family medical history. With even an additional 10 minutes with patients, diagnoses would have much less of a “best guess” approach. And if hospitals and doctors would track instances of misdiagnosis — and give their colleagues regular feedback on misdiagnosed cases — the impact would be substantial.
By starting to really press the discussion of medical quality in this direction, doctors, the people at the front lines of the battle for better patient care — as well as their patients — can start to make an enormous difference.
Evan Falchuk is vice chairman of Best Doctors, Inc., a global health company based in Boston. He is an active member of the National Business Group on Health’s “National Leadership Committee on Consumerism and Engagement,” the National Governors Association and the American Benefits Council. Evan Falchuk”
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4. https://www.medicinenet.com/endometriosis/article.htm#endometriosis_definition_and_facts
“…What is endometriosis?
Endometriosis is the abnormal growth of endometrial tissue similar to that which lines the interior of the uterus, but in a location outside of the uterus. Endometrial tissue is shed each month during menstruation. Areas of endometrial tissue found in ectopic locations are called endometrial implants. These lesions are most commonly found on the ovaries, the Fallopian tubes, the surface of the uterus, the bowel, and on the membrane lining of the pelvic cavity (i.e. the peritoneum). They are less commonly found to involve the vagina, cervix, and bladder. Rarely, endometriosis can occur outside the pelvis. Endometriosis has been reported in the liver, brain, lung, and old surgical scars. Endometrial implants, while they may become problematic, are usually benign (i.e. non-cancerous)…”
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5. https://www.swedish.org/services/cancer-institute/our-services/pet-ct-imaging/what-are-the-benefits-of-pet-ct
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Thank you for all the helpful
Thank you for all the helpful information. Do I want to go to an gynecology oncologist doctor even if I don’t have a cancer diagnosis? I’m not sure if I’d get a referral. The surgeon I spoke with said it would be major abdominal surgery. She mentioned no other options. I have read of other doctors doing less invadive surgeries. I will get a second opinion. My sister in law went to the Mayo Clinic for diagnosis, or to find a diagnosis of something. I wonder if my insurance would cover the Mayo Clinic... if not than maybe the mustard one. Haha
here is an update...
about four days ago I noticed that may lymph nodes were swollen everywhere. That is my underarms, breasts, neck, under the collarbone (but not over), groin, elbows, behind the knees and even my stomach. My spine and back still hurts, at time kidney pain? I’ve been extremely fatigued, in fact I have been in bed most of the last two days which is not normal for me. Today I began feeling nauseated. I have eaten about half what I normally do, but no vomiting. I have noticed some bruising, but my puppy is always trying to jump on me . I have a little bit of a cough, but not bad, also the shock in my fingers when I grab or move in a certain way. So I am fighting something for sure. My lymphocytes were low (17% with normal range being about 20-49% I think). There were white and red blood cells in my urine as usual, and a small amount of bacteria. I was supposed to come in to retest due to too many epethisl cells clouding the ability to test.I just happen to see my neurologist tomorrow, and I normally see him to check up on my “complicated migraines,” but he’s also run all soets of tests like MS, and several other things. I know there are some neurological conditions that involve the lymph nodes. ive noticed a little swelling in my forearms, where there is a vein, as well as swelling where there are a couple of the lymph nodes. Just a couple though. So with a swollen abdomen with lymph nodes swollen everywhere there is a chance of lymphoma as my father died from Mom-Hodgkins. I had genetic testing and ran the raw data through a site called self decode, and the report shows a lot of genetic variants that leave me vulnerable to cancer. Mutations in suppressor genes, etc.
I’m a little scared, especially I worry what if I have an infectious disease that has laid dormant for 15 years? The gynecologist tested for several diseases such as gonorrhea and syphilis. I’m all clear there. I was thinking that I’d surely be losing weight if I had an invectious disease. I’m just paranoid about that from my past. I really do think non-Hodgkins is a possibility. Or nothing. Whatever it is i just want to get better as I plan to go to Thailand on a mission with my daughter in sept or October. Lord willing. My friends operate a really unique mission there. I’ll let you know if the neurologist finds anything.
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Stacy~Now I'm advancing 2 my "motherly-advice" role !
Hey Stacy –
Now I’m going to go into my “motherly-advice mode” even though your “counseling bill” won’t be increased for the extra advice. After all, you are very young, and I am very old. I’m not complaining. I am even adding “halves” back on my age. So actually I am 79 years and 5 months old. If I had any hair right now, it would be “white” and proud to call it my own. But presently I am reduced to wearing false bangs and turbans most of the time. But around the house, I just go “bald.” It’s a small price to pay for “extension of life!” I used to look in the mirror and say, “Oh my”. Now I look in the mirror and say, “Thank you LORD for giving me 5 extra years on this earth. Even though Heaven is far better, I think my family needs me. So far, except for some permanent neuropathy left over from the first chemo back in early 2013, and fatigue, I’m doing well considering. Moreover, I celebrated my 5th year of survival since my Cytoreductive Surgery on JULY 1, 2013 at Passavant Hospital, part of the University of Pittsburgh Medical Center complex. UPMC is where my husband had his surgery back in 2003. We celebrated his 15th anniversary on May 17, 2003. Yes, God is good.
Pardon me, but you seem to be self-diagnosing WAY TOO MUCH. Frankly, sounds like you should have been in the emergency room already. As for wondering about insurance to pay for a second opinion--most insurance companies will pay for a 2nd, the point being that the first findings may not be as "drastic" as thought and perhaps a lot of money will be saved by the company, and for you a lot of unnecessary treatment for some malady that didn't really exist. So check with your insurance company, and ask if they pay for second opinions.
Also you could call a gynecologic oncologist and ask if you need a "special referral" to be examined by them, or can you "self refer?" When my husband was diagnosed with Esophageal Cancer, I called the University of Pittsburgh for info on a 2nd opinion. They said I didn't need any kind of special referral. The rest is a glorious story of success for him. That's why I went there also for a second opinion. They found far more than my local ER visit. That was bad enough because my diagnosis was a terminal condition first noted here at home - Peritoneal Carcinomatosis. Then on the 2nd opinion, Ovarian cancer entered the fray!
So please "get on" with finding ONE competent doctor who will do exhaustive testing, and from what you tell us, that would be a gynecologic oncologist. I'd suggest you not continue to play the "what if this and what-if that—what if—what if?" game. You won't make it to Thailand in Sept. or October at this rate.
And I would certainly love to see you make it part of your mission in life to be helpful to others to come to know the Lord and have peace of mind even though life can be very difficult.Bottom line—for female reproductive problems a gyn/onc is preferable. On that we ladies here all agree. Laparoscopic hysterectomies are the least invasive with promise of the quickest recovery. Believe me, I know all about "major surgery"!
After all, seems you are still only at a starting point—only God knows the extent of your present problems.Love & continued prayers,
Loretta
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