OBG Oncologist want to remove my uterus and ovaries
I'm 57 and had a lumpectomy for grade 2 DCIS (4mm, clear margins) in January. No radiation. Started taking low dose Tamoxifan. For an unrelated issue, my OBG has been recommending that I get my ovaries removed since I was about 52 ( I've had two simple cysts). Reading about all the bad side effects involved in getting ovaries removed, I said 'no'. The cysts ended up staying about the same size (5cm) with no significant changes. Then on my last ultrasound, a thickening of uterus was discovered. A subsequent biopsy revealed atypical hyperplasia. FYI - I'd only been on the tamox for a week, so it's not from that). My OBG (knowing how resistant I've been to surgery) sent me to an OBG oncologist. He wants to remove my uterus - which makes sense to me. But I still don't understand why I should have my ovaries removed. He told me that I'm "the picture of high risk" for ovarian cancer.
Though I haven't had a period for 7 months, according to my hormone tests, my estrogen levels are still considered 'pre menopausal'. I believe one purpose for the surgery could be to shut the ovaries down...or possibly the cysts are creating more estrogen. The OBG oncologist said "clearly there is something wrong". I mentioned that my cousin and aunt didn't reach menopause until over the age of 60 - but that didn't alter his opinion. There's been no ovarian cancer in the family and only my aunt had breast cancer (HER 2 - after the age of 70, she's 91). On the other hand, the nurse oncologist who I'm seeing for DCIS, wasn't surprised by the hormone levels. She said she's seen levels all over the place before a woman goes into menopause.
Bottom line - I'm VERY fearfulI of having my ovaries removed. I'm afraid it will plunge me into menopause and that I'll have no way to relieve symptoms because HRT will be off the table. Afraid of "brain fog', weight gain, incontinence, complete loss of sex drive, and that I'll be turned into a zombie. I'm very physically active, lead a healthy life style, have longevity in the family - and feel (minus a few annoyances) just fine right now. At any rate - I'm going back to talk to the OBG oncologist about the ovaries. Is there anything I should ask when I see him?
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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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I would get multiple second opinions. They should probably also take you off the tamoxifen, not because it would have caused your problems in one week, but because it could worsen thickening and cysts and you already have pre-existing issues. I wasn't aware that having ovarian cysts without any family history of ovarian cancer put you at increased risk for ovarian cancer?
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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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I agree about getting another opinion. I don't know what would be best in your situation but I'm pretty certain it's not dealing with doctors who don't factor what you say (your family history) or your concerns (about surgery/ovary removal) into the discussion and their recommendations.
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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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Hi PandoraX, I am 12 years older than you, but I had my ovaries, tubes, and uterus removed this past Feb by a Urogyn. It was done vaginally and I wish I had done it sooner. At 57 I wouldn't be concerned about menopausal symptoms because it is going to happen regardless. I have never been incontinent even after having two big babies and not from the surgery. I had discomfort for maybe 2-days and that was it. You can drive after 2-weeks. There are restrictions for one month, no lifting, no bending, no using the vacuum. That was the hardest part. Tamoxifen thickened my lining and gave me numerous fibroids/polyps and also enlarged my uterus. My MO didn't think I had to be concerned about ovarian cancer because there isn't any family history. I didn't want to take a chance. It was making me have a lot of abdominal pressure and it was uncomfortable. My daughter's MIL was just diagnosed with stage 4 ovarian cancer she had gone to the ER with severe back pain. Why take the chance?
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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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Flashlight - that is good to hear! I know that removing the uterus vaginally is the least invasive type of surgery - but the OBG said he would be doing it laproscopically - so he can get a good look at things. Because of that, the recovery time is supposed to be around 6 weeks. Did your surgeon use a laprascope? I think if I were already in menopause (which I presume you were), I'd be a little less fearful. I understand the 'why take a chance' perspective as well. Just don't have a handle on what my real risk is. OBG said 1% in the general population. And stressed the word "general.". I also wonder if they can tell when they go in there whether or not you have cancer cells - or whether that can only be determined by a pathology report after the fact. How long were you on Tamoxifen?
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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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I might be missing something though the first opinion you received was your regular OBGYN, right? I was thinking about a 2nd OBGYN oncologist opinion when I wrote my response... If you have two OBGYN oncologists in agreement then it may be quite important to heed them ??? If they are in disagreement not sure where that leaves you : ( I hear your concern about additional wait. There are what I call "twisted silver linings" with COVID - one is it sometimes is easier and faster to get in to see specialists... Maybe worth a few phone calls just to see what the next appointment date(s) is. I hear you really want to know you're doing what you can to reassure yourself either way as you decide based on what you're being told.
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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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I should also add that I'm in a city with top in the world health facilities and both doctors I spoke to are nothing but highly recommended.
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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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Moth - thanks for your perspective. I do believe you are correct about cysts being more risky during/post menopause. Now I also recall that cysts over 4cm were also considered more risky post menopause (mine are 5cm) - and yes, maybe the two cancers (even though they were "lucky" cancers) - add to the risk. I didn't mean to describe menopause as a phase that automatically turns all women into zombies - but from everything I've read, it seems that when women go through menopause suddenly - from having their ovaries removed or some other artificial means - they have a much worse experience. Also, the hormones that the ovaries secrete - even after menopause - contribute to bone, brain and heart health...from what I've read anyway. It could just be that I haven't gotten satisfactory answers about WHY they consider it such a risk to leave my ovaries in - or haven't explained why I can't just remove the cysts themselves.
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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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Kmom53 - that is really good to hear. And I think it's true that when it comes to forums about medical conditions, people are more likely to post their negative experiences. Thanks so much for sharing your experience with that - and yes, I see you've been through a lot. Estrogen seems to be responsible for so many problems and cancers - maybe it would be a good time to switch genders! :-)
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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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PandoraX,
I am also fearful of having my ovaries removed for the same reasons as you. I had been taking Tamoxifen for the past 3 years but had to stop due to fracturing my ankle and fear of blood clots from that. This happened in April and my ankle still has not healed (non union fracture) so I might have to have surgery. So I am not taking any medication presently.
About two months after stopping the Tamoxifen I had a bleeding incident, which uterine biopsy was normal, so once again I have staved off hysterectomy. But, if I have another bleed, I will have OBGYN proceed with hysterectomy, but still not wanting oophorectomy.
I had asked my oncologist if my chances of ovarian cancer risk was increased due to my breast cancer diagnosis and she told me no. According to her, my risk would be increased if I tested positive for BRCA 1 gene. I tested BRCA 1 and 2 negative. My oncologist just retired but had been an oncologist for 28 years.
Just wanted to pipe in my thoughts on this.
Celand
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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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Hi--I can't comment on whether or not you need to do this....but wanted to chime in and tell you my experience with hysterectomy/oopherectomy. I had a positive lymph node, but a low oncotype score....so instead of chemo we decided to do oopherectomy/letrozole. Like you, I was extremely anxious before the surgery....I was expecting the worst...I shed a lot of tears over it.
It's been almost 4 weeks and I haven't had a single symptom. Now I'm SURE that there are things happening below....but we all have to deal with that at some point. But no hot flashes, no sleeping issues, no mood issues. Nothing. And I am 43. I was expecting it all. I had it done laparoscopically, as well. Went home same day.
With this being said....not sure how letrozole is going to change things. But I am convinced to make it work, not worry about side effects before they even happen, and take one day at a time.
When I was talking this through with by GYN, I said....I don't want to give up my quality of life....and she said....what kind of quality of life is it if you are worried about cancer coming back? It's a bit of a oversimplification maybe, but that helped me to move forward and I feel really good about where I'm at....at the moment. We talked about it being a "new chapter" and I changed the way I viewed the big bad word "menopause." Best of luck to you.
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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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PandoraX, I had started Tamoxifen in April and had the transvaginal ultrasound in June of last year with a D&C in Aug. During the D&C she was able to remove most of the fibroids/polyps. By my surgery this past Feb my uterus was enlarged with numerous fibroids/polyps. My doctor considered Laparoscopy, but then decided to do the total hysterectomy vaginally. Your doctor might want to do it by laparoscopy to better view the ovaries and surrounding tissue. Sometimes they can do both. Lots of questions to ask.
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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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Pandora, those are great questions!
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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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“according to my hormone tests, my estrogen levels are still considered 'pre menopausal'.“
Wait, they can test our hormone levels?
There is a little smoke coming from my ears right now. I was diagnosed with DCIS last year in my right breast. Due to the location and extent of calcifications, I was told that lumpectomy wouldn't be a good choice and I should have a mastectomy. My oncologist immediately started pushing for tamoxifen or a hysterectomy. Due to family history of strokes and clotting mutations, I was tested and diagnosed with the mutation for Factor II (increased clot risk). My onco said a side effect of tamoxifen is increased clot risk and I should not use tamoxifen. She pressed for a hysterectomy.
There is no family history of breast cancer and my genetic testing showed no known mutations for breast (or any) cancer.
I did my research and learned that as long as my final pathology report continued to show only DCIS and didn't uncover anything invasive or other tumors, a bilateral mastectomy lowered the risk sufficiently not to need hormone therapy or a hysterectomy. I had a bilateral mastectomy in December.
I am peri menopausal. I had a period in August of 2019, the same month of the screening mammogram that kicked off this wonderful episode. I didn't have another until March and April of 2020. I just had another (November 2020). They are very light menstruation. Hot flashes stopped a while ago.
My onco seems to have forgotten about my clotting factor because she continues to pressure me to take tamoxifen. Like at every follow-up, she brings it up. No one has ever suggested testing my hormone levels. No one has ever said it is possible to test them.
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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.0
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MydogandIhadcancer,
If you had a BMX for DCIS, then unless you had close surgical margins or are very high risk for a new primary due to a genetic mutation (BRCA, for example), there is absolutely no reason to take Tamoxifen or an AI (for those who are post-menopausal).
Tamoxifen can reduce 3 risks. But as you well know, Tamoxifen comes with side effects. So whether or not to take Tamoxifen is always a question of balancing the breast cancer risk reduction benefit from Tamoxifen against the risk of serious side effects from the drug itself.
For someone who had a BMX for DCIS,
- the risk of local (in the breast area) recurrence is 1%-2%.
- the risk of distant recurrence with DCIS is effectively zero. (Note: This changes of course if the patient has an invasive local recurrence)
- the risk of a new primary after a BMX is 1%-2%.
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Tamoxifen can reduce these risks by approx. 50%. So at most, the benefit is a 1% reduction in local recurrence risk and a 1% reduction in the risk to develop new primary. The risk of serious side effects from Tamoxifen, even for someone who has no pre-existing conditions or conditions that increase the risk of clotting, is 1%-2%. This means that at best, the benefit vs. risk equation is a trade-off; given that at least 50% of Tamoxifen users experience quality of life side effects, few if any doctors would ever prescribe Tamoxifen or an AI to a patient who has had a BMX for DCIS (assuming clear surgical margins).
I agree with Peregrinelady. In your situation, with the additional risk factor of clotting, it is criminal for your MO to push Tamoxifen on you. Change MOs. And ask this MO to explain the recommendation in terms of the risk reduction benefit you will receive from Tamoxifen. The numbers simply don't add up.
Ductal carcinoma in situ: Treatment and prognosis
"Bilateral mastectomy – For women who have undergone bilateral mastectomy, there is no role for adjuvant endocrine therapy."
"In women having bilateral mastectomies for DCIS, the risks of adverse effects from tamoxifen outweigh any potential benefit for risk reduction."
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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
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So glad you checked back in Celand! It is a good thing you went ahead with the DNC! Obviously you're facing more challenges yet.... I hope all turns out well - results of the cone biopsy! Please let us know...
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