18mm endometrial lining

2

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  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #22
    BluebirdOne said:

    It is difficult to get an appointment with a GO

    until you have been properly diagnosed. Usually, your gyne does the dx, and then refers you to a GO, or you can initiate contact with a large cancer center and they will have the gyne do the dx and then refer you to their GO. The benefit of this is that it is usually a one stop shop, where they seamlessly in one facilty do the dx, surgery, treatment, etc. if your dx comes back with cancer, rather than one stand alone gyne, and a stand along GO you can get an intergrated treatment plan. Many of us get 2nd opinions at these institutions as they see these cancers and the rarer forms everyday, instead of once in a while. The odds are that you do not have cancer, and hopefully you will find out what is causing your problems. I had cancer in two polyps, UPSC, and in the endometrium, stage 1a. My orginial gyne told me and my husband after hysteroscopy and biopsy that I was cancer free because he could not "see" any cancer. Told me how lucky I was, until two days later the preliminary pathology indicated UPSC and clear cell, high grade, and then referred me to his buddy, the GO, who was terrible as well. After this GO refused to schedule me quickly for surgery, we contacted Mayo, who did my 2nd opinion, surgery and treatment. I never regretted my decision once, even though I travel 6 hours by car to see them. The doctors there have coordinated with my local docs so it is good to know that these doctors gladly do this. The process of getting an accurate dx is time consuming and can be pretty exhausting, as we don't know what we don't know and we don't even know what questions to ask! Good luck to you and come back and let us know how you are doing.

    Denise 

    Denise

    It's so crazy that he told you that you were cancer free because he couldn't SEE any! Scary - and this is why you all are helping me see I need a D&C, sometimes you can't see it, and random biopsies may not catch it. Good to know about Mayo, I've heard such great thingsSmile

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #23
    AnnieB33 said:

    Denise

    It's so crazy that he told you that you were cancer free because he couldn't SEE any! Scary - and this is why you all are helping me see I need a D&C, sometimes you can't see it, and random biopsies may not catch it. Good to know about Mayo, I've heard such great thingsSmile

    AnnieB33, welcome to the beehive!

    Sadly, I am not the only one here who tells a similar story. When we first have our symptoms we start a process that to most of us is 100% uncharted territory. We learn from the mistakes that were made, we learn the step by step process of treatment, side effects and survivorship. We learn that some of the gynecologists are lacking in their current knowledge, or just set in their ways, or just haven't seen enough of these cancers. I think of our support group as a kind of beehive where we come together and share our accumulated knowledge, our very different paths, and the evolution of treamtents. The day by day documentation of many of our lady's stories is an invaluable resource. I can only speak for myself, but I am so gratified when a new person comes in looking for help and support and they come away with answers, and at least you know some of the questions to start asking. I did not find this site until right after my surgery, and I did not get that benefit of of other's experiences. In fact, my husband and I felt very alone in our struggle to get me the proper dx, the right doctors, the right treatment. It was really hellish until I was able to get to Mayo, and the relief that I felt when they just took over, made all of my appointments, were so kind and competetent. I wish I had known about the beehive of information here because it would have brought clarity and a roadmap for me to follow. So keep in touch and let us know what you decide. 

    xxoo (trying to scrape the honey off of my glasses)

    Denise 

     

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited July 2021 #24
    AnnieB33 said:

    polyps

    How big was your polyp and how long did you have it? I guess it happens more than they think. Interesting that my doctor has never seen one come back cancerous, she's probably in her 50s - hopefully I'm not going to be the first!

    Benign or not, whatever it takes I'm looking forward to at least having it out (and biopsied), because I recently counted how many times I go to the bathroom in one day, and it's 17x/day.  It must be pushing right on my bladder. 

    "I've never seen one come back cancerous"

    My doctor also used this "never in my career have I..." kind of language. I didn't even find it comforting when I could have, which was that very stressful time early on, the time you're currently occupying, Annie. Time is dripping slow! All you want is answers, and you so badly want to be comforted by the helpful general physician opinions and "never have I evers," but most of us are smarter than that. Science will guide the best medical personnels, not "never have I evers," and "I don't think so," and ignoring the pain and bleediing. It has been very worrisome to me that so many of the beehive (I like that!) have stories of being patted on the head by medical personnel. 

    Our worker bee above mentioned that many of us are 100% in uncharted territory when we embark on this journey. "We don't know what we don't know," and we don't know what to ask. That's why the best clinics, like Mayo, like many of the university hospitals, are the best places to go to get answers. You don't need Grandpa or Grandpa Local Hometown M.D. giving you advice or "never in my career" platitudes so you don't worry. You need facts and you need the best care! 

    If you worry that doctors think you are asking too many questions, or worrying needlessly, stop worrying right now! If they patronize you, move on fast!

  • Forherself
    Forherself Member Posts: 1,018 Member
    edited July 2021 #25
    You have to remember this board

    Is ALL patients who were diagnosed with cancer.  All the others drift away.  And that is the vast majority.  One in ten biopsies is positive for cancer.  And if it is true that the doctor has never had a patient with a cancerous polyp, then she is merely telling the truth.    

     

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    edited July 2021 #26
    Harmanygroves said:

    "I've never seen one come back cancerous"

    My doctor also used this "never in my career have I..." kind of language. I didn't even find it comforting when I could have, which was that very stressful time early on, the time you're currently occupying, Annie. Time is dripping slow! All you want is answers, and you so badly want to be comforted by the helpful general physician opinions and "never have I evers," but most of us are smarter than that. Science will guide the best medical personnels, not "never have I evers," and "I don't think so," and ignoring the pain and bleediing. It has been very worrisome to me that so many of the beehive (I like that!) have stories of being patted on the head by medical personnel. 

    Our worker bee above mentioned that many of us are 100% in uncharted territory when we embark on this journey. "We don't know what we don't know," and we don't know what to ask. That's why the best clinics, like Mayo, like many of the university hospitals, are the best places to go to get answers. You don't need Grandpa or Grandpa Local Hometown M.D. giving you advice or "never in my career" platitudes so you don't worry. You need facts and you need the best care! 

    If you worry that doctors think you are asking too many questions, or worrying needlessly, stop worrying right now! If they patronize you, move on fast!

    Yup.

    I want to also say as noted, that i received my 2nd opinion and cancer care and continue to see the doctors at Mayo. This is just one of many of our best cancer/university/teaching hospital systems. There are 31 designated NCCN Member Institutions all over the country, i.e. MD Anderson, Sloan Kettering, etc. My home doctors coordinate with the Mayo doctors on reading CT scans, bloodwork, etc. so if you have a really treasured home doctor they should be happy to coordinate care. You want to be seen by doctors who have seen it all and many cases of your type of cancer. Most gynecologists are also obstetricians because delivering babies is what pays the bills. Gynecological specialities are underpaid compared to others, which also means your local gyne delivers way more babies than diagnosing cancer. I also follow on Twitter the same NCCN institutions, and their best GO docs. That is another beehive of informatiom. 

    Denise 

  • MoeKay
    MoeKay Member Posts: 495 Member
    #27
    Mayo Clinic Says Uterine Polyps Are Rarely Cancer

    According to the Q&A section of the Mayo Clinic's website:

    "The odds of a uterine polyp being cancer or becoming cancerous are low. In premenopausal women, that number is 1-2 percent. In women who have gone through menopause, the risk is 5-6 percent. But even with the low risk, health care providers often will take a tissue sample of a uterine polyp for lab testing. That’s because some uterine cancers or precancerous changes of the uterus, such as endometrial hyperplasia, may first appear as uterine polyps."  For the entire discussion on this issue, see:

    https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-uterine-polyps-rarely-are-cancerous/

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    edited July 2021 #28
    The odds seem to be pretty low.

    I had two cancerous polyps, and had serous diagnosed, at Mayo, so many low probabilities that added up to a UPSC dx with cancer to polyps. Chances that post menopausaul bleeding is cancer, low, chance of UPSC, low, chances that a uterine polyp had cancer, low. So I lost the low probability game. Now you know why I never play the lottery! But it also shows that we are a rare breed. 

    Thanks, MoeKay! 

    Denise 

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #29
    Forherself said:

    You have to remember this board

    Is ALL patients who were diagnosed with cancer.  All the others drift away.  And that is the vast majority.  One in ten biopsies is positive for cancer.  And if it is true that the doctor has never had a patient with a cancerous polyp, then she is merely telling the truth.    

     

    Good and Fair Point

    We are a skewed sample, and speaking for myself, jaded!

    Thanks for reminding me of that, and also of giving our new person a heads up to that. 

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #30
    Thank you

    I'll come back and let you know how the procedure went and what turned out (I really will!). 90% that it'll be benign, but then again I have every symptom, so won't take it lightly just in case. Thanks so much for the reassurance, it's always nice to know that no matter how it turns out we're not alone! Surgery is scheduled for 9/2. Hugs to all!

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #31
    BluebirdOne said:

    Yup.

    I want to also say as noted, that i received my 2nd opinion and cancer care and continue to see the doctors at Mayo. This is just one of many of our best cancer/university/teaching hospital systems. There are 31 designated NCCN Member Institutions all over the country, i.e. MD Anderson, Sloan Kettering, etc. My home doctors coordinate with the Mayo doctors on reading CT scans, bloodwork, etc. so if you have a really treasured home doctor they should be happy to coordinate care. You want to be seen by doctors who have seen it all and many cases of your type of cancer. Most gynecologists are also obstetricians because delivering babies is what pays the bills. Gynecological specialities are underpaid compared to others, which also means your local gyne delivers way more babies than diagnosing cancer. I also follow on Twitter the same NCCN institutions, and their best GO docs. That is another beehive of informatiom. 

    Denise 

    Funny tangent

    Your comments about most gynecologists also being obstetricians reminded me of the doctor who delivered my first child.  He loved delivering babies!  Some years later he announced his retirement, saying the malpractice insurance for obstetrics was going through the roof, and if he couldn't deliver babies he was just going to retire.  (He never had a malpractice claim in 40+ years of practice, so I don't know what triggered the hike.)

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #32
    Findings on CT

    I don't know what any of this means Frown

    Had to have a ct urogram because of blood and tissue/clots  in the urine, painful pelvic area, and going to the bathroom 20 times a day. Pasted and copied what he said here:

    IMPRESSION:

    1. No urinary tract calculus, hydronephrosis or concerning mass. Incomplete opacification of a segment of the right proximal ureter.

    2. Uterus is mildly enlarged with one tiny cystic focus within the left myometrium and mildly irregular endometrium. Recommend correlation with recent pelvic ultrasound findings.

    So pretty much all of this has to do with gyn issues. While I wait for my gyn to answer me, does anyone know what any of this means? Assuming enlarged uterus is not good? Still waiting (Impatiently) for Sept. 2...but meanwhile in lots of pain, especially at night, so much I almost went to the ER, but held off for this test. Unable to even take a walk now because of so much pressure in the pelvic area. Is this normal? Could it still be benign? Have any of you experience this? Thank you so much for your input.

     

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited August 2021 #33
    If you need to go to the hospital, don't hesitate

    I'm so sorry you are in pain. I'm not a doctor so can't speak to the section of your ureter that is opaque (can't see through it?). 

    Your endometrium is the lining of your uterus. When you menstruate, if you still do that, some comes out as menstrual blood. 

    Your myometrium, of course, is your uterus. 

    I think every woman is built differently, and I don't know if they're deducing anything from your CT Scan, but it sounds like they are seeing a tiny cyst? Something "tiny" always sounds reassuring to me. Perhaps your doctor can help you understand this, or one of the nurses in this site can explain what the terms may imply, but it sounds like you've got the ball rolling. 

    We are all staying tuned, I'm sure. Let us know if you learn more about this scan. I know that while we aren't doctors, some of the hive will know more than I do about this scan. 

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #34
    Deb

    So that said then, it sounds like they could see the enlarged uterus and the thickened lining, and some sort of cyst (anyone else know what this means?)- and possibly the ureter could be being blocked by these things? If so, this what my concern was when I started having all the bladder problems, that they were connected.

    I sent a note to the doc asking her if I could get in sooner. It's going to be a long, painful wait. :/

    It's funny, because bleeding crazily for 3 years didn't really phase me...being told there was a benign polyp, I also brushed off. But the pain and not being able to exercise, that's what's going to kick my rear in gear to get this out!!

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #35
    AnnieB33 said:

    Deb

    So that said then, it sounds like they could see the enlarged uterus and the thickened lining, and some sort of cyst (anyone else know what this means?)- and possibly the ureter could be being blocked by these things? If so, this what my concern was when I started having all the bladder problems, that they were connected.

    I sent a note to the doc asking her if I could get in sooner. It's going to be a long, painful wait. :/

    It's funny, because bleeding crazily for 3 years didn't really phase me...being told there was a benign polyp, I also brushed off. But the pain and not being able to exercise, that's what's going to kick my rear in gear to get this out!!

    Suggestion

    You're articulate and entertaining--thanks for that, you made me laugh! Funny what motivates us to get on it, right? Bleeding crazily? you probably blamed your stress, your cycle, your ex, your....crazy and unruly uterus, the water....

     Anyway, maybe you could call your clinic and press to get in, as you mentioned. If you can, try to record what they say (get permission) so you can review later, when you're not at defcon level 3.

    <3 sending love

    Deb

     

     

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    edited August 2021 #36
    Harmanygroves said:

    Suggestion

    You're articulate and entertaining--thanks for that, you made me laugh! Funny what motivates us to get on it, right? Bleeding crazily? you probably blamed your stress, your cycle, your ex, your....crazy and unruly uterus, the water....

     Anyway, maybe you could call your clinic and press to get in, as you mentioned. If you can, try to record what they say (get permission) so you can review later, when you're not at defcon level 3.

    <3 sending love

    Deb

     

     

    Thanks, I will push to get back in

    LaughingLaughing Whatever it takes, right? lol!

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #37
    Update

    The surgery did get moved up to yesterday. Didn't get a D&C, just the hysteroscopy with polyp removal and biopsies (due to my previous complications this is where I started). Hopefully this will be the end of it. I haven't heard from the doctor yet, so have no idea what she saw in there. Interestingly, the pain and cramping I had in the weeks prior to the removal yesterday, is pretty much gone today, so it was definitely the polyp causing problems. Now the waiting begins...

    Thoughts and prayers for those of you going through the wringer today.<3

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited August 2021 #38
    AnnieB33 said:

    Update

    The surgery did get moved up to yesterday. Didn't get a D&C, just the hysteroscopy with polyp removal and biopsies (due to my previous complications this is where I started). Hopefully this will be the end of it. I haven't heard from the doctor yet, so have no idea what she saw in there. Interestingly, the pain and cramping I had in the weeks prior to the removal yesterday, is pretty much gone today, so it was definitely the polyp causing problems. Now the waiting begins...

    Thoughts and prayers for those of you going through the wringer today.<3

    Congrats on Getting out the Pesky Polyp

    Congrats on getting it done early!

  • AnnieB33
    AnnieB33 Member Posts: 20 Member
    #39
    Harmanygroves said:

    Congrats on Getting out the Pesky Polyp

    Congrats on getting it done early!

    Thanks!

    Thanks, and I got the results in my portal already - which it's crazy how fast they came back - benign! Two polyps, 3 x 2.5cm and 2x1cm, no wonder they were problematic.

    Thanks for everything. Take care.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #40
    AnnieB33 said:

    Thanks!

    Thanks, and I got the results in my portal already - which it's crazy how fast they came back - benign! Two polyps, 3 x 2.5cm and 2x1cm, no wonder they were problematic.

    Thanks for everything. Take care.

    GREAT news, and Congrats!

    Hope you never have to come back, but you are always welcome!

  • Forherself
    Forherself Member Posts: 1,018 Member
    #41
    AnnieB33 said:

    Thanks!

    Thanks, and I got the results in my portal already - which it's crazy how fast they came back - benign! Two polyps, 3 x 2.5cm and 2x1cm, no wonder they were problematic.

    Thanks for everything. Take care.

    Great news

    Stay healthy!

     

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