Should I have both ovaries removed?

jenn32214 · November 2016

Always fun to have multiple health issues, especially when they can conflict with each other.

I was diagnosed with early stage breast cancer in March, which I have included in my stats here. Didn't need chemo, finished radiation end of August. Had my first appointment last month with Medical Onc to talk about Tamoxifen.

Here's the thing, I am extremely nearsighted and am at risk for developing (wet) macular degeneration.. I had already been seeing a retina specialist for my eyes, and my retinas are showing "precursor" symptoms. So Medical Onc is also concerned about Tamoxifen's potential effects on my eyes.

Then there's the gyno issues I've been having since the beginning of the year. 2 bad UTIs (and this was before BC diagnosis), urinary leakage, frequency, etc, Dark brown spotting between periods (I'm 52 years old but still menstruating regularly).

I had two transvaginal ultrasounds in the spring that both showed a large 5.8cm cyst on my left ovary (I know from previous tests that's been there at least a few years.). As well as a 1.7cm polyp in my uterus that did not show up on an ultrasound I had two years ago.

Last but certainly not least, I have a strong family history of cancer. Maternal grandmother had breast cancer at age 59, but lived to be 94. My mother died at age 73 of primary thyroid AND primary lung cancer that had really metastasized by the time they found it. (She hadn't smoked in 40 years). And her older brother died in his 30's of pancreatic cancer. I had a pretty full genetic testing panel that came back negative, but still.

Finally saw a gyno surgeon today. She said given that my BC was 100%ER+ my ovaries are probably really pumping out estrogen. She definitely wants to remove the left ovary, especially since it has that large cyst, and the uterine polyp. Both would of course be sent to the lab for pathology testing. Her question to me is what about my right ovary? If we remove it as well, she feels that would notably reduce my risk of BC recurrence, and eliminate my risk of ovarian cancer which could also be important given my family's cancer history. However doing so would throw me into "surgical menopause" with its SEs.

She wants me to have another ultrasound so we have all the updated info on that, and then meet with her again to discuss our plan. She seemed to be leaning towards having both ovaries out, for the reasons above. But said my leaving the right one in could be a reasonable decision so as to avoid the surgical menopause and its effects.

My primary goal here is to find that right balance working with her so I can avoid taking Tamoxifen. Aside from all the bad side effects I've seen mentioned here, and my Medical Onc discussed with me, I am very worried about hurting my eyes. The retinas are slowly getting worse already, and the last thing I want to do is accelerate that problem.

So can anyone share thoughts, opinions, experiences here? On having my ovaries removed in general, and one versus both?

Thanks

Jen

Momine · November 2016

Jenn, I was 47 about to turn 48 at DX and pre-meno. In the course of being checked over, they discovered that I had fibroids in my uterus, big ones. I opted for the ooph and had my uterus removed as well, although they left the "neck" for bladder support. Then I went on an AI instead of tamox.

Being hurled feet first into menopause is not fun. The adjustment took some time. However, once I adjusted, it really was and remains fine. Besides, you are so close to menopause that you will have to face it sooner rather than later anyway. If you were 32, it would be a different question.

cp418 · November 2016

I had just turned 49 at Dx and pre-meno. My tumor was 100% ER+, 100% PR+, Her2-. After lumpectomy, chemo, radiation treatment I tried Tamoxifen for several months and had a rough time on it. I insisted on an ooph to switch to Femara. At the time of my ooph procedure a small fibroid was present on my uterus. I'm glad I stopped the Tamoxifen and avoided further complications from it. Uterine fibroids and strokes run in my family. I adjusted to menopause maybe easier than others.

Kiks1 · November 2016

I just had my Ooph. I decided to go on an Al because of the SOFT study and was getting tired of my monthly lupron shots. They removed both ovaries and also found a fibroid in my uterus ( runs in my family). It was an easy procedure and was walking around the same day. I was on lupron for 5 months prior and so far have not notice any difference in SEs. I had adjusted fairly easily as well despite the fact that I was still having regular periods before chemo. In fact, I no longer have monthly migraines anymore:)

jenn32214 · November 2016

Thanks!

i have a followup appointment beginning of Dec with Medical Onc. He wanted me to see him again after seeing the gyno surgeon.

My bottom line is if removing both ovaries will lower my risk of BC recurrence, and I don't have to take any drugs that could effect my eyes, that's what I want to do. And I really appreciate hearing from women who've been thru a ooph

jenn32214 · December 2016

Had a second meeting with the medical oncologist last week. He understood why I don't want to take tamoxifen. He just wants me to come in more often to be monitored which I'm fine with,

Then Monday the gyno surgeon called about the pelvic ultrasound I had done last week. My left ovary's cyst has grown to 6cm which she wasn't so concerned. But this time the ultrasound showed "mural nodule", whereas on the previous ones it was a simple cyst. So she had me get blood tests for "Tumor markers" and will call me when she gets the results. So now I'm back in the awful waiting game.

Any light shedding here would be appreciated. Or if I should be posting this somewhere else please let me know.

mkinoly · December 2016

I was 49 when I was diagnosed. I had my ovaries and fallopian tubes removed with laproscopic surgery (they were healthy and I was not menopausal at all) so I could avoid taking Tamoxifen or other meds. I'll admit it was no fun being thrown into a life without the usual estrogen, but to me it was worth it. I figured I'd have to go through menopause within a few years anyway. To me, given the gyno issues you've been having, I'd have both ovaries removed. I'm 14 months out from my ooph and the only bad side effect I'm still having is lack of libido. Damn, I sure miss that libido. But even with that, it was the best choice for me to reduce my risk of recurrence while avoiding meds.

jenn32214 · December 2016

I am now definitely planning on having both ovaries and Fallopian tubes removed, based on both these Drs advice and the advice I've gotten here. But now I am also worried about having ovarian cancer, especially with the recent ultrasound report about the left cyst. And it's because of this the gyno surgeon now wanted me to have the tumor marker blood testing. Which I am anxiously waiting to hear those results (to the point of having panic attacks again, which I only first started having after my BC diagnosis in the spring)

Momine · December 2016

jenn, I am so sorry you are dealing with this. I hope the nodule turns out to be nothing, but worst case scenario, you will have caught it at its earliest stage, and simply getting rid of the stupid things should solve the problem.

Have you had BRCA testing? Is there any family history?

jenn32214 · December 2016

@momine. the answer to both your questions is yes. I'm just going to copy this from my original post to make it easier for everyone:

"Last but certainly not least, I have a strong family history of cancer. Maternal grandmother had breast cancer at age 59, but lived to be 94. My mother died at age 73 of primary thyroid AND primary lung cancer that had really metastasized by the time they found it. (She hadn't smoked in 40 years). And her older brother died in his 30's of pancreatic cancer. I had a pretty full genetic testing panel that came back negative, but still."

So I feel like I'm still in never never land.

Also, the gyno surgeon just called me (it was very nice of her to call me on a Sunday). She said my tumor markers looked ok to her. When I asked her my ca-125 number, she said it was 52 which was not that concerning to her. But when I had it tested back in March it was 29. So why the big jump? When I asked her about this jump, she wasn't too concerned because the result could change depending where I am in my cycle (I'm still having my period regularly), or just the cyst growing in general could raise it. But as an engineer increases in numbers scare me, even if the number itself is still in a supposedly good range.

She then went on to say she wants me to have a consultation with a gyno oncologist who would be on standby "just in case" when she operates. My surgery is currently scheduled for Jan 13, 2017. I am now trying not to panic even more. And keeping my cane handy in case I start having panic attacks with vertigo again (Started having them after my BC diagnosis)

Again any thoughts and/or advice are appreciated here.

slv58 · December 2016

Jenn, my situation was a little similar, at least the onus of deciding is the same! I had an ovarian cyst that was being watched for over a year. It was not resolving and showed thin septation. My gyno oncologist felt it was benign but also stated that the only way to know for sure was to have an oophorectomy/salipingo. Because of the aggressive nature of my cancer she saw I was worried and was willing to take both out. She explained that taking just the problematic ovary out would still leave me with the stress of always wondering and that in Canada it is not considered good surgical practice to leave one. Over the year the cyst had grown 1 cm which I thought was a lot but each ultrasound only defined slight increases- I didn't like that.

I had been forced into menopause from chemo 3 years earlier and was able to manage the hot flashes relatively easy. Long story short, at my last vaginal ultrasound it showed my appendix was quite large- so was advised to get appendix out ASAP! I asked if they could take my ovaries and Fallopian tubes at the same time as it was done laparoscopically through the same incision- luckily my gyno was able to arrange the surgery so I got a two for one!

The surgery was extremely easy! I was up walking the hallways 6 hours later and was discharged after another 6! I was walking 2 miles three days later. Very minimal pain- extra strength Tylenol was enough. One small incision. Luckily my ovaries were non malignant but the peace I have knowing I'll never have to worry is worth it. Ovarian cancer is silent.

Ten months later, I can say that I had to go through menopause again! I was unaware of that but I guess my ovaries were pumping out some estrogen. The hot flashes were pretty severe the first few months but have dwindled to almost nothing---again. I have noticed that I may be a bit more emotional, I cry a bit easier which is something I've never been able to do so I really don't mind. I don't know if it is related but my skin seems to have aged a lot- more wrinkles which I'm not happy about. I'm trying retin A and see a slight improvement. I've also developed more facial hair (damn!) these are all the side effects I've noticed- all acceptable for the peace of mind I have.

I wish you luck with your decision, I know it's not easy. I just want you to know that I found the surgery easy and the menopause manageable. If I can answer anything, let me know

Shari

Imkopy2 · December 2016

Jen hugs to you! I was also diagnosed this March and my onc recommended an oophorectomy because my BC was ER + and she wanted me to go on Arimidex as opposed to Tamoxifen. Since I have a history of fibroids in my uterus I asaked if I could have it all removed. My OB/GYN and onc agree this is the best path to take. Once I finish with my implant exchange I will undergo that surgery, until then I will get lupron shots every 3 months. Not looking forward to being thrown into menopause but after 5 months of chemo and 28 rounds of rads Im willing to reduce the risk.

I know its easier said then done but try and stay calm, trust your medical team. I will add you to my list of warrior sisters I pray for.

exercise_guru · December 2016

Jen

I really feel for what you are going through. Maybe I can share my experience and it might be helpful. I had dbl breast cancer so BMX, Chemo and then found out also I had the PALB2 gene. Ovarian cancer is in my family history as well so my gyno MO chose to do a hysterectomy and oophrectomy but perhaps you can have the gyno MO do your surgery and your gyno assist. Mine was able to do a thorough check for everything in there, he also did rinses and sent everything to pathology which came back negative. In your situation I think it would be worth the peace of mind to have a gyno MO do the surgery and check on things.

Now I can be either on an AI or Tamoxifen and I do have tumor markers checked every 6 months.

amylsp · December 2016

Jen, I had my ovaries and tubes out back in April. The Gene Tests all came back negative. But I wanted as many treatment options open to me as possible (ie, the AI Drugs), and this was the only way to 100% guarantee I was post menopausal. The chemo stopped my period at 53. But I had still been menstruating monthly, even though I had also been going through some peri-menapausal changes for a few years. The chemopause brought on hot flashes, and those definitely got worse after I had the ovaries out. But things seem to be calming down a bit now that I am 8 months out from the Oophorectomy.

It's not a decision to make lightly as the ovaries continue to produce low levels of androgens and testosterone well into the post menopausal years, whose health benefits will probably be missed. But the closer you are to natural menopause, the fewer the SE's or potential dangers you need to worry about. So it's a matter of weighing the pros and cons.

jenn32214 · December 2016

Wow, thanks ladies for all the help and advice. My genetic testing was pretty extensive, including PALB2, and all came back negative. No history of gyno cancers in the family. But I am definitely having both ovaries and tubes out. A couple ultrasounds in the spring showed a complex cyst on the RIGHT ovary that then resolved, but still. And now the left one's getting worse.

Plus the gyno surgeon and the medical onc think if I have both out it will reduce the risk of my BC recurring without taking Tamoxifen or an AI, which they understand I'd rather not because of my preexisting eye issues. So to me having both out will hopefully be a 3 for one deal:

- eliminate risk of ovarian cancer

- reduce risk of my ER+/PR+ BC returning

- hopefully at least reduce my urinary issues which is where this roller coaster ride all started for me back in Feb. I saw a urologist in June just to cover that base. They said an ovarian cyst as big as mine (6cm) could be impeding on my bladder. Plus when they did a cystoscope, the urologist said he could tell I also had a fibroid in my uterus, and that could also be a contributor. Which brings me to my next question:

The spring ultrasound saw the fibroid in my uterus that they biopsied and was benign. But needless to say we all want that out which the gyno surgeon could do at the same time as the ovaries. But I would really prefer not to have a hysterectomy just at this time. Mostly because I am worried about post surgery recovery time. If I do the ovaries and just remove the fibroid itself, she can do a laparoscopy and D&C, which I imagine would be a lot easier and shorter recovery than a full hysterectomy. Given that I am a single mother with NO other family to help me. I am very concerned about what shape I'll be in during and after any treatments or surgery.

So if I may ask, is there any correlation between the risks of BC versus ovarian versus uterine cancer? Like in my case am I more likely to develop uterine cancer because I've had BC?

Thanks again everyone

Jen

exercise_guru · December 2016

jen just to add on my MO told me that removing my ovaries would not significantly reduse risk.of breast cancer reoccurrence.

I still am being ask to take either AI or tamoxifen

amylsp · December 2016

Jen, it definitely sounds like you're on the right track having the ovaries and tubes out. But 100% of post menopausal estrogen is produced by the adrenals, brain and fat stores, etc. So an oophorectomy will have no effect on post menopausal estrogen levels. I'm not sure of the statistics, but I think in women who test negative for the genetic markers, BC raises the risk for ovarian or uterine cancer only slightly.

Is your fibroid causing any issues?. My uterus has been covered with fibroids since I was in my 30s. They've never given me problems, except during my pregnancy with my son, and are currently shrinking without any estrogen to feed them. For what it's worth, my Gyno has always recommended leaving the uterus in unless medically necessary as it's part of the structural support in the lower pelvis. Prolapse of the vaginal canal, bladder, rectum and sometimes even the bowel become more commonly seen in women post hysterectomy because structural integrity can be compromised.

jenn32214 · December 2016

">Is your fibroid causing any issues?"

The Drs' opinion is probably. Since last year I have been having urinary issues I never had before Including 2 UTIs, and urinary frequency and leakage.

So the Drs think the uterine fibroid and/or golf ball sized cyst on my left ovary are "leaning on" my bladder. It's just this latest pelvic ultrasound also showed the "mural nodule" on the left ovary, is why there is the hopefully slim possibility I also have ovarian cancer. But any possibility is too much and making it hard for me to sleep at night again.

I have appointments with the gyno surgeon and gyno oncologist next week.

The plan is to remove both ovaries and tubes, and the uterine fibroid during my surgery on Jan 13. They will be doing a frozen section pathology on the left ovary during surgery to check for cancer. Assuming they don;t see any, I will tell then to stick to the plan. If they do.... it will be like another bomb went off in my life and right now I can't think ,much beyond that.

"but I think in women who test negative for the genetic markers, BC raises the risk for ovarian or uterine cancer only slightly." I hope you are right. There is no history of gynecological cancers in my family, and my genetic testing all came back negative.

jenn32214 · January 2017

Well, I had my surgery last Friday. They removed both ovaries and tubes, the polyp on my uterus and all came back benign.

We knew I had a large cyst in there, turns out it was attached to the peritoneal wall and was the size of a baseball. Also benign. Now its about R&R.

Jen

Momine · January 2017

Jenn, YAY! Benign is good, even if surgery recovery sucks.

Should I have both ovaries removed?

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