Symptom review and advice for next steps
Comments
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CA 125ckdgedmom said:D&C
I had a D&C and a hysteroscopy because I had been bleeding 17 days straight in the middle of a birth control pill pack (which I was taking to regulate my period...go figure).
Once the pathology confirmed cancer I was then referred to my gynogological oncologist. I was lucky that she took me right away (the same week that pathology confirmed cancer) and I had my hysterectomy about 12 days later (after I had time to get off of all blood thinning meds and Thanksgiving in the middle of it). All my procedures prior to the hysterectomy were done by my regular gynocologist.
Do you know if she was running a CA125 with your bloodwork?
I asked specifically about this and she said it could be a marker for many things, and isn't always accurate for cancer. Like it can be elevated for other conditions as well, so she seemed "not a fan."
I will say I guess I'm satisfied that she is going to look at hormone levels.
As she put it: Let's do a workup.
What else can I expect?
The only part that bugs i waiting until right after the NEXT cycle to have the saline ultrasound or whatever she called it. I mean, I JUST ended or am AT the end of my period now! She only does these things on Thursdays, and wants me to wait untl my NEXT one????COME ON...like I'm in so much pain NOW.Lord, give me patience here cuz just no! LOL
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CA125
It's true it can indicate other things but in my case it is what led my doctor down the path to discover more in my case because it was elevated. My gyno oncologist monitors my levels with it (UPSC produces a protein that can be tracked with a CA125). I don't understand why so many doctors are so reluctant to run the test...it's less and invasive and although not perfect it is a screening.
I would not be happy having to wait another cycle either...especially when in pain...
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I agree with you completelyckdgedmom said:CA125
It's true it can indicate other things but in my case it is what led my doctor down the path to discover more in my case because it was elevated. My gyno oncologist monitors my levels with it (UPSC produces a protein that can be tracked with a CA125). I don't understand why so many doctors are so reluctant to run the test...it's less and invasive and although not perfect it is a screening.
I would not be happy having to wait another cycle either...especially when in pain...
Why is it that their assumption is CA125 will not be a marker for us uterine cancer patients. I so wish I had my CA125 numbers from before the surgery so that I would know what my baseline was. When I insisted on having CA125 prior to my first chemo session it turned out to be elevated. As you say it is non-invasive and cheap. How could it hurt? Don't understand the resistance.
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Well, the breast cancer page
Well, the breast cancer page is almost dead. It's weird. However, my appointment with the breast oncologist is tomorow. Since I have been having issues for a year, the next natural step is to see a breast specialist to ensure that nothing is actually MORE wrong. As I stated above, I have had itchy breast issues, specificaly UNDER the nipple, and then further, I've had random sharp pains that literally shot through the middle of the breast which woke me up a few times. Also, my nodes in the armpit have hard to explain, but almost like radio pain-not painful to the touch, but seriously should not be "felt" at all...I had one about 3 months ago "all of a sudden" go hard in my armpit, which I feel could be related to my breast (if anything is going on at all).
I really dislike going to the doctor, so to pursue this type of follow through is important. I don't want anything to get out of hand, if there "is" anything, nor do I want to die prematurely, again, "if" there is anything.
I cannot imagine why, aside from perhaps a yeast infection, that I would have an under nipple excuciating itch. Ladies, I mean....fully on want to go to town itch, all. the.time. I have to exercise an extreme amount of self-control MOST of the time to avoid touching myself in public.
Also, I had ALREADY changed to Dr. Bronner's soap, titanium razor blades, and reviewed my laundry soap. So, I am trying....I guess I'll let you all know after tomorrow....
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For anyone who is following
For anyone who is following along, I will post what I did in the BC forum:
I may just need to continue to look into what may be going on with my nodes as well as pay attention to the itchy breast. I had full breast ultrasound on both, and aside from ducts that were dialated, there wasn't anything else wrong, but to return in 3 months. Hooray so far!
Now, I also got my results back from the GYN, and I am NOT perimenopausal, which makes my bleeding etc more concerning. I don't have any lactation hormones in my body. She was really thorough with the bloodwork.
Next appointment is not until January 4 for the vaginal view....until then I am sitll in alot of pain in my hips, groin, low back, and pelvis. Guh.
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In the same boatPrayer Gal said:For anyone who is following
For anyone who is following along, I will post what I did in the BC forum:
I may just need to continue to look into what may be going on with my nodes as well as pay attention to the itchy breast. I had full breast ultrasound on both, and aside from ducts that were dialated, there wasn't anything else wrong, but to return in 3 months. Hooray so far!
Now, I also got my results back from the GYN, and I am NOT perimenopausal, which makes my bleeding etc more concerning. I don't have any lactation hormones in my body. She was really thorough with the bloodwork.
Next appointment is not until January 4 for the vaginal view....until then I am sitll in alot of pain in my hips, groin, low back, and pelvis. Guh.
I'm right there with you..pain in groin hip lower back and right side up back...iv had 2 CT scans 1 abdominal US 2 transvagial US ..today just had 3rd and didn't like the way she made comments so im freaking out...and had .ca 125 bloodwork..all in 2 months ...I'm so afraid the scans are not catching what's going on ...I'm in so much pain....im nervous about today's scan..I went to hospital this time for the US instead of those independent radiology place. I just feel lost and like I havnt done enough ...
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The journey continues...
So, I was to have the saline ultrasound today. The tech did a vag ultrasound and an ultrasound outside like if I were pregnant. Dr came in...she got started. Y'all it was so painful! AAAAAND...she couldn't do it. I have a titled uterus with scar tissue from 5 c-sections. She tried many methods and ultimately it was too painful and she wasn't in. Grabbing the cervix with a tool to get a speculum in?? NO...that hurt.
Here are my options: Do a DNC with biopsy and water ultrasound in her office where she sets up one of her rooms like an operating room once a month; go to the hospital and do the same for hospital fees. She said I'm a candidate because I don't have hypertension nor am I morbidly obese etc. I'm not a smoker...anyway, she brings in an anesthesiology team and they just do it like if you were in the hospital. What do you all think? I'm so nervous!
The ONLY think I learned was the lining of my uterus. I'm on day 4 of my cycle. It was 7.5
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In office procedure or out patient hospital?
Prayergal, My recommendation is to have the procedure in the outpatient hospital setting. Rational: Bringing in a nurse Anesthetist or Anasthesiologist and setting up a surgical suite once a month doesn‘t sound like a quality oriented option. Sounds more like a way for the doctor to pull revenue into their practice for procedures they don’t perform very frequently. In health care quality measures it makes a difference in quality/ outcomes when there are greater numbers of procedures done with the same health care team more frequently. Opt for the hospital out patient option. Forget the once a month in the office option!
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C125SF73 said:I agree with you completely
Why is it that their assumption is CA125 will not be a marker for us uterine cancer patients. I so wish I had my CA125 numbers from before the surgery so that I would know what my baseline was. When I insisted on having CA125 prior to my first chemo session it turned out to be elevated. As you say it is non-invasive and cheap. How could it hurt? Don't understand the resistance.
Hi,
Hope this is helpful...I had a rare form of uterine cancer 8 years ago (small cell undifferentiated carcinoma), and while the C125 was in the normal range, it was one of many tools to identify changes. I still hold my breath each year and get the c125, which has been consistent. If it changed rapidly, that would be helpful to know, and would initiate other tests, scans, etc.
My very best to you,
Susan
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Go to the Hospital!
i would suggest the hospital. Remember Joan Rivers!
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What happned to Joan Rivers?CheeseQueen57 said:Go to the Hospital!
i would suggest the hospital. Remember Joan Rivers!
What happned to Joan Rivers? I thought she died on the table from too many plastic surgery procedures
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North, I would agree with youNorthwoodsgirl said:In office procedure or out patient hospital?
Prayergal, My recommendation is to have the procedure in the outpatient hospital setting. Rational: Bringing in a nurse Anesthetist or Anasthesiologist and setting up a surgical suite once a month doesn‘t sound like a quality oriented option. Sounds more like a way for the doctor to pull revenue into their practice for procedures they don’t perform very frequently. In health care quality measures it makes a difference in quality/ outcomes when there are greater numbers of procedures done with the same health care team more frequently. Opt for the hospital out patient option. Forget the once a month in the office option!
North, I would agree with you. However, I hear: She brings in an anesthesiology team each month, but they are the same as are the other people who assist....and by doing the procedure inside an outpatient setting the things that are different include the people who are doing anesthesiology PLUS any of the support personnel.
She does it once a month in her office, yes, but also does many each time. If her number of 11 last time is an average, she does approximately 120 surgeries a year....but, if I do have her do an outpatient facility (what I was hoping for, honestly), I would then have to pay her, the ansthesiology team, the hospital (not part of the prcoedure pay at this point), and anything else that is charged external to the specialized procedure.
I'm with you, yes. Totally.
Do I want to pay for the additional element? Like, what will be different other than the location? I am not sure anything. I will have an IV with antibiotics, I will be in conscious sedation, she will be doing the procedure like she would in a hospital.Maybe it's just the money? And, I guess, if I begin bleeding out, she can have access to what, other specialists, maybe? LOL...she said she has double doors at the end of the hallway for an ambulance should I need one...that was both comforting and frightening...but she did say that any potential isues are the same in her office as in a hospital.
Still, it's something I need to consider.
One question that comes to mind is: what hospital does she have privileges at?
Second question: how often can she schedule procedures there?
She still delivers babies so I know she goes to a local hospital.
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D&C part of cancer DX?
Something else she said: She said she can't do an ablation until she does a biopsy. She would biopsy when she does the D&C....that is something I would like done in a hospital.
Now, I've read that some people have a DC and have to wait to see an oncologist. Is that because the DC provided a preliminary cancer DX OR...was that part of the protocol?She just mentioned the ablation as an example, not that I need one or will need one; she won't know until she gets in there I guess....
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Joan Rivers outpatient surgeryPrayer Gal said:What happned to Joan Rivers?
What happned to Joan Rivers? I thought she died on the table from too many plastic surgery procedures
On August 28, 2014, Rivers experienced serious complications and stopped breathing while undergoing what was scheduled as a minor throat procedure at an outpatient clinic in Yorkville, Manhattan.[114][115] Resuscitated an hour later, Rivers was transferred to the hospital and later put on life support.[116] She died on September 4 at Mount Sinai Hospital in New York, having never awoken from a medically induced coma.[117] The New York City Medical Examiner's Office said she died from brain damage caused by a lack of oxygen, and the details of her surgery would be investigated by officials.[118] Rivers was 81 years old.
After nearly two months of investigations, federal officials said on November 10 that the clinic made a number of mistakes both before and during the procedure. Among those were the clinic's failure to respond to Rivers' deteriorating vital signs, including a severe drop in her blood pressure, possibly administering an incorrect anesthetic dosage, performing a surgical procedure without her consent, and other medical-clinic irregularities.[119][120]
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I had a D&C in the officePrayer Gal said:D&C part of cancer DX?
Something else she said: She said she can't do an ablation until she does a biopsy. She would biopsy when she does the D&C....that is something I would like done in a hospital.
Now, I've read that some people have a DC and have to wait to see an oncologist. Is that because the DC provided a preliminary cancer DX OR...was that part of the protocol?She just mentioned the ablation as an example, not that I need one or will need one; she won't know until she gets in there I guess....
My gynocologist did my D&C and biopsies in her office.
A surgical team brings in the equipment and an anesthesiologist was there to sedate me. I was lightly sedated but no breathing tube needed (like getting wisdom teeth removed) and I have no memory of the procedure and I felt no pain. I woke up and walked back to an exam room to get dressed and recover (although there was little to no recovery as I was not put under just given medication to make me comfortable). I had an iv and do remember him telling me he was giving me the meds and I remember Cathy (my gyno---we are friends, yes that is weird but it works for us...) coming in and telling me she was going to get to the bottom of things. That's all i remember until she said "hey sweetie we are done".
it was much easier than dealing with the hospital and my insurance covered it. If I was going to be put under and a breathing tube in then yes you def want the hospital but for a procedure like a d&C and biopsy they are fewer risks...
do what makes you feel comfortable...talk to her more about it if you have concerns...
as for diagnosis---she told me after the procedure that she thought some things looked suspicious. My pap in May 2016 had been clear and this was Nov 4, 2016. The pathologist had trouble making a definitive diagnosis in my case...it was almost 2 weeks before we got an answer. My cancer was in my uterus, one tube, one ovary, cervix and a bit of the vagina. The minute my gyno heard from the pathologist she contacted the gyno oncologist on my behalf. (I was scheduled for a regular hysterectomy but she cancelled it and referred me). I got lucky that the gyno oncologist is good friends with my gyno's hubby (who is also a friend and gyno/OB) and she took me on as her patient on her first clinic day that week---so I only had to wait 4 days and I knew at that point I had cancer. I know some people have to wait longer and I am very blessed that I live in a large city with 3 excellent cancer centers and that my gyno oncologist was willing to work me in because she was interested in my case and Paul (my gyno's hubby) begged her to see me ASAP because he wanted me taken care of.
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While I did have an internal
While I did have an internal ultra sound, I didn’t have an endometrial biopsy. My biopsy was done at an outpatient facility, a d and c. It is a very well known facility in my city and is well equipped with anestefiaologist, nurses, etc. I had no problems there and there was cost savings. Yes the d and c gave the diagnosis and I was then referred to a gynechological oncologist.
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Soup, that is what I think,Soup52 said:While I did have an internal
While I did have an internal ultra sound, I didn’t have an endometrial biopsy. My biopsy was done at an outpatient facility, a d and c. It is a very well known facility in my city and is well equipped with anestefiaologist, nurses, etc. I had no problems there and there was cost savings. Yes the d and c gave the diagnosis and I was then referred to a gynechological oncologist.
Soup, that is what I think, too. One nurse friend said that in office surgical suites aren't regulated the same, don't have a crash cart, etc. Another told me that it is routine and should be fine, no sweat. I'm not a worrier per say, but I am a pessimist. More than that, I have tremendous scar tissue from 5 cesareans. I cannot imagine it being "routine" to get past/beyond/around the scar tissue, you know?
After talking with my husband (who lost his first wife to health issues) and speaking to my nurse friends, I think I'm going to opt for the safest route and go to a hospital or surgical suite. I seriously don't see this as routine FOR ME. Now, I have thought that maybe all my inter-cycle bleeding and clotting is due to the scar tissue. She actually said, "if it can come out, then I can get in"...okay, that's fair, however.....what if the scar tissue is breaking off in clumps? That could happen, right? But then, what if it's not.
I guess I want the best possible scenario to have the best possible outcome. ANd if she (or whomever) scopes my uterus and there is nothing there...then FANTASTIC...but the pains, associated symptoms, and type of cycles and intermittant symptoms I've had seem to point to something abnormal: even if just endometriosis or polyps, it's still not normal.
So, I'm with you! Having the biopsy and D&C in the best setting will make me more comfortable and at ease.
On another note: I read on her website that all surgical procedures need to be paid for upfront during pre-op. What?? I've never had that. Ever. We have amazing insurance and it covers quite a bit. Even still, we do have to pay a percentage or portion of most all procedures. So....I would rather work with a hospital and care providers individually kwim?
Thanks for the input!
I really value this group and their opinions/experience. I like reading your personal stories,which gives me hope and insight.
Prayer Gal
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Glad you have made an informed decision
Glad to hear you have made an informed decision on the best place for you to undergo the procedures. Each of us have our own values and preferences and fears. Please do keep us posted on how it goes for you!
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