Topic: OBG Oncologist want to remove my uterus and ovaries

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Aug 15, 2020 11:41AM LivinLife wrote:

From a medical standpoint this is way out of my league so I do not want to comment on that. I'm wondering about getting a second opinion on ovary removal. Also, would your OBGYN, the OBGYN oncologist (or any other medical provider you see) be ones you'd feel comfortable talking with about being plunged into menopause and your related concerns and viable options/interventions if your concerns are realized? Other than that I hear your concerns and exasperation....

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Aug 15, 2020 02:22PM - edited Aug 15, 2020 02:23PM by PandoraX

Thanks just for hearing me! In a sense, the OBG oncologist was the 2nd opinion. I am comfortable at telling them my concerns. The OBG oncologist remarked that he usually has to talk women out of taking aggressive measures (except for a woman who had cervical cancer and refused to have the organ removed and later died) and that I've probably asked him more questions than any other patient he's talked to. But my sense is that they (two men in my case) tend to think that at my age, what's the big deal having my uterus and ovaries taken out? I also think that their primary focus (and probably righty so) is to reduce cancer risk. Possibly because they see more patients who have cancer, they may be more likely to suspect it (surgeons like to recommend surgery). On the other hand, I could be very foolish not to follow their advise and regret my decision later - especially since ovarian cancer presents itself with no symptoms until it's too late. One thing I plan on asking is why they can't just remove the ovarian cysts versus the ovaries. Perhaps they're concerned that if there's some cancer abnormalities on the uterus that they may have spread to the ovaries. As far as risk factors I know of 1) didn't have children; 2) Late menopause and 3) DCIS? --- not sure if that means I'm greater risk or not. 4) Atypical Hyperplasia in uterus - again not sure if that's an additional risk factor for ovarian cancer or not. Getting older seems to be the main risk factor of all cancers.

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Aug 15, 2020 02:37PM - edited Aug 15, 2020 02:39PM by PandoraX

Thanks Beesie. He did seem pretty pushy about getting me into surgery - fast. I scheduled it for September 8th even though he wanted to do it in August. But I'm feeling more and more dread with each passing week. Maybe I'm forgetting something he told me during the conversation about why my ovaries needed to be removed as well (I took notes - but not seeing anything). No doubt if I got a second (or third) opinion, that would delay things - so I'm worried about that too. I do some times think about the older females in the family - almost all of whom lived into their 90s (including two who didn't have children). Perhaps they had cysts or even DCIS and simply didn't know it because they didn't get tested so much back then. Or maybe as a younger person, I'm exposed to more chemicals than they were. Who knows?

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Aug 15, 2020 03:22PM Beesie wrote:

Reading about your discussions with the doctors, my questions would be:

• Why does the doctor think you have an increased ovarian cancer risk?" More cysts, perhaps, if you continue on Tamoxifen, but why an increased cancer risk?

• And since ovarian cysts are generally harmless and yours have been stable for 5 years, why do they need to come out?

And to BCat40's comment, one consideration is whether to continue with Tamoxifen. What is your risk of recurrence with surgery alone after having a 4mm grade 2 DCIS? I would expect that the risk is fairly low, particularly if you had wide surgical margins, and the primary benefit of Tamoxifen would be to reduce your risk to develop a new primary breast cancer in the future. One option, if you want that protection, is to wait until you enter menopause naturally, and then try an Aromatase Inhibitor. To my extremely limited understanding, an AI might be beneficial with regard to ovarian cancer risk (not fully proven, but possible).


The effect of tamoxifen therapy on the endometrium and ovarian cyst formation in patients with breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC61370...

Tamoxifen and ovarian cysts: a prospective study https://pubmed.ncbi.nlm.nih.gov/11728662/

The effect of adjuvant hormonal therapy on the endometrium and ovary of breast cancer patients https://pubmed.ncbi.nlm.nih.gov/19471651/

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Aug 15, 2020 04:04PM - edited Aug 15, 2020 04:29PM by PandoraX

Beesie -

Just for a little background, I originally went to the uro gyn about 6 years ago because I was experiencing continuous bladder pressure. As a matter of course, he conducted an ultrasound - and that's when the cysts were discovered. They were smaller at the time and he didn't think those were the source of the pressure - which hasn't changed and which is most likely a condition called Interstertial cystitis - over sensitive bladder. Alas - no cure but something I've gotten used to managing. The cysts appeared to grow over the years after each ultrasound - and that's when he grew concerned. Now he's thinking that the cyst could be producing hormones - and could possibly be the reason I haven't gone into menopause. When I brought up my two relatives who didn't go into menopause until their 60s, he did not think that was a factor to consider. So I believe that was one of the reasons given for removing the cyst. But I can't remember his reason for removing the entire ovary - unless it was because removing the cysts alone would be too difficult. But that is a good question - which I will definitely re ask! 13 years ago, I had thyroid cancer - but I understand that is a pretty common cancer - and I don't think it figures into ovarian cancer - but who knows.

As for the DCIS and my 'risk' - I have never been able to get a clear answer on the 'margins.' First my surgeon said that one of the margins may have been too close (according to the pathology report, less than a mm, and that she might have to go back in. But then she and/or the tumor board and reported back that the margin was clear and there was no need to go back in. She also said that radiation wasn't highly recommended. But then (3 months later), when I followed up with the nurse oncologist, she gave me a kind of blanket explanation. Radiation would have reduced my risk by 50% and tamoxifen etc. would reduce it more, etc. She calculated my risk for reoccurence based on the Sloan Kettering questionnaire to be 20% (without radiation or hormone blocking meds). She had no notes from the surgeon about not recommending radiation and none of the follow up about the margins. But she said the questionaire only asks whether margins are positive or negative, not how big the margins are. I met with the radiology oncologist (just for the sake of it, since it was really too late for radiation) - and she thought my risk level was about 15%. My aunt did have breast cancer (HER 2) when she was in her 70s. But she is the only one so far. My mother (93), sister (64) and cousin (62) have had no cancers. Also, the tumor was grade 2 with necrosis. I had read a lot of articles about the fact that radiation and hormone blocking drugs may reduce your risk of reoccurance but oddly, don't change the mortality rate for DCIS. When I told the nurse OBG my reasoning for not getting radiation or taking any drugs, she countered that those studies don't go beyond 10 years. And that after 10 years, the risk goes up. That got me to change my mind about the Tamoxifen. Yes, I could switch to the other one - but I already have some osteopenia and occasional joint pain- so concerned about that drug as well.

I do worry - as far getting the benefits of the hormone blocking meds - about waiting too long - so easy to put something off like. This is all so complicated!

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Aug 15, 2020 04:13PM PandoraX wrote:

LIvinlife - I wasn't very clear on that probably. To clarify - the first opinion was from a UROGYN (which I was seeing for an unrelated condition). The second opinion was from an OBG oncologist.

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Aug 15, 2020 05:31PM moth wrote:

I suspect their calculation is based on previous cancer history - if I'm reading correctly, two different cancers. I believe cysts during and post menopause are also more dangerous.

I think your description of menopause is extreme. Many women throughout history have had full and healthy active lives post menopause without synthetic hormones & are not zombies.

I'd take menopause over cancer any day.

2 recommendations from reputable Dr's count for something imo

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Aug 15, 2020 07:59PM KMom57 wrote:

I, also, was not in menopause yet when I was diagnosed and women in my family go through very late, so even though I'd been in perimeno for awhile, I likely had a few years left. My GYN had also mentioned hysterectomy in years past due to other issues, and after diagnosis strongly recommended at least removing my ovaries and tubes due to increased risk in my case. I agreed because in addition to the risk, I knew my cancer was largely estrogen driven, and given my ovaries are super ovaries, I didn't want to depend on Zolodex to control them. I had also had multiple cysts, more ultrasounds over time than I could count, and I felt strongly like it was only a matter of time before one came back bad. The ooph was a non-event honestly. And the aftermath, I actually felt better physically than I had in years. I suspect now that many of my issues in the past might have been due to the surges of estrogen my overachieving ovaries were producing. Since my surgery, I've had a few hot flashes, but not much else. As it turned out, my instinct to get them out ASAP was correct as an “area of interest" was identified on one tube. I can't recall the technical term, but it was a still benign potentialprecursor. I know my experience isn't every woman's, but thought I'd add my perspective. In the course of this whole cancer journey, the ooph was the least difficult and least troubling part of it all. Only regret is I didn't get the uterus out at the same time, and remove that worry.

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Aug 15, 2020 10:13PM Cowgirl13 wrote:

Definitely, definitely get another opinion. Even if the new doc agrees with the other two, perhaps this will be someone who you can really talk to and who won't be rushed/pushing you. My oncologist was my second opinion doc and I'm so glad I found him. Good luck!

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Aug 16, 2020 12:21AM AliceBastable wrote:

PandoraX, I had endometrial cancer when I was 58 and had everything removed laparoscopically except my vagina. My tests pre-hysterectomy showed that I was still cranking out hormones and not slowing down. After the hysterectomy, I didn't really have any menopausal symptoms, just a bit of strange sleep patterns for the first few weeks. That was in 2008 and I've never had any problems and never missed having those body parts. In 2018, I was diagnosed with breast cancer, 99% ER and 97% PR. I seem to have a hormone reserve that just gushes it out! I was on Tamoxifen for about a year and didn't have too many menopausal symptoms, maybe some night sweats, but I've had several surgeries and my night temperature after each has run either extreme hot or extreme cold. I'd had a more major surgery than the lumpectomy later in 2018, so it was hard to tell what was hormonal and what was just my usual adjustment period. I stopped the Tamoxifen for a completely non-cancer reason, but it wasn't because I had a problem tolerating the pills.

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Aug 16, 2020 10:21AM MelissaDallas wrote:

I was still occasionally having light spotting or periods at 50 when I had my hysterectomy for a rare low malignant potential ovarian cancer. Pathology showed “weakly proliferative endometrium” so not menopausal The prior years of perimenopause had been truly awful (I never believed in PMS because I didn’t have it and thought women should take an Advil and get a life) until I suddenly I wanted to kill someone or slit my wrists about half the month, but menopause was great. My moods were more stable than they had been since I was fifteen and no more sick nauseated “can’t move” premenopausal hormonal migraines. After having periods of depression since I was a teenager I haven’t been depressed once in almost ten years.

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Aug 17, 2020 07:16PM PandoraX wrote:

Thank you so much for all your responses! I'm so glad I posted. For one - it's given me ideas for questions to ask. And 2) If I decide to go ahead with everything, it's reassuring to know that it doesn't mean the end of the world - and who knows - maybe I'll even feel better, as some of you did. Just good not to feel alone with these sorts of dilemmas. These are the questions I'll ask. Please let me know if you think of anything else - or whether some of these questions have obvious answers.

1) What factors make me "high risk" for ovarian cancer?

2) Why not remove the cysts instead of the ovaries?

3) When you open me up, are you able to tell then whether there is any cancer in the ovaries or elsewhere?

4) What are the risks of the operation affecting my pelvic wall muscles and possibly causing incontinence or bowel problems (as was explained in the pre-op video)?

5) If my ovaries are taken out, is there any way to deal with the side effects of sudden estrogen loss?

6) Does Tamoxifen increase the risk of Ovarian cancer?

7) What is the purpose of removing the fallopian tubes?

8) What does the 6 week recovery really mean? Does it mean not driving - or just not lifting things or engaging in serious exercise?

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Aug 19, 2020 01:59PM - edited Aug 19, 2020 02:02PM by PandoraX

Just thought I'd report back since seeing the OBG Oncologist. First off, I'm very glad I went back to ask questions. He was very happy to answer them and said I should feel good about my decision. He said that he always as a clear rationale for his decisions to operate and that he never is one to say "well while we're in there, we might as well..." And that often, he has to convince women out of what he thinks is inadvisable surgery. As far as my risk for ovarian cancer - he said that since they found questionable cells in the uterus, there's always the possibility that there could be bad cells elsewhere in the system. That is why they remove fallopian tubes as well as the cervix. There's no way to tell if there's cancer in the ovaries when they open you up. They can do a test to see if there's any cancer in the lymph nodes at the time of surgery. So basically he's saying that the uterus doesn't just exist in its own universe. When I asked him about taking out the ovarian cysts only, he said that was a bad idea. One of the cysts is already about the size of my ovary and he said there's always the risk that he could pop one - and if it had cancer cells inside of it, that would be a problem! He also reminded me that removing the ovaries would reduce my risk of breast cancer and that with menopause, I'd have the choice of other hormone blocking meds. He also said that problems with the pelvic wall afterwards from his experience are pretty rare. He said most women report back at their 2 week follow up, that the operation wasn't such a big deal. So there you have it. Now I'd just like to get it over with as soon as possible!

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Nov 10, 2020 09:39AM Peregrinelady wrote:

I would try to change oncologists. It is criminal for her to pressure you to take Tamoxifen with your mutation. Speaking from someone who had a DVT and PE from Tamoxifen.

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Nov 28, 2020 10:01PM - edited Nov 29, 2020 06:02AM by Celand

Well, now things have changed for me. Following a DNC to clean out my uterus after taking Tamoxifen for the last 18 months, I have been diagnosed with Focal Microglandular Endocervical Hyperplasia. My Gynecologist has said that uterine pathology was benign but she is worried about my cervix (keep in mind that my pap smear in October was clear) My dr did tell me that she has never encountered someone diagnosed with my condition (she is late 30's so a young dr). This does make me a bit nervous. However, she told me that she contacted an Oncologist friend of hers to get her opinion. What the plan is to schedule a cone biopsy for early January to make sure that pathology didn't miss anything, she says that she feels that there is no cervical cancer but wants to be sure. However, if cervical cancer is found then I will be referred to a gyn-onc for treatment then we will proceed with hysterectomy. If no cervical cancer found then we will proceed with hysterectomy. She says that hysterectomy is a must because while Hyperplasia is not cancer it can lead to cancer. Why take the chance? I agree with her so will begin 2021 with a biopsy and hysterectomy. My Gynecologist's words "If you were my Mom, I would want you to get all of the s&%! out!"

The medical merry-go-round continues!

Happy Holidays everyone!

Celand