Breast cancer risk: what to do with the ovaries?

I am 40 and facing a hysterectomy due to the fact that fibroids have grown rapidly in the past year, as discovered at my yearly exam. No children, never been pregnant.

Saw a gynecologic oncologist so I could make sure we are taking the full picture into consideration: my mom took DES when she was pregnant with me, and breast cancer runs in my family (mom, maternal aunt, paternal aunt, paternal grandmother). I do not have any sisters. No history of ovarian cancer in my family.

The fibroids aren't painful and I don't have problems with PMS etc.

I have an appointment for genetic testing in just over a week but have been told it takes about a month to get results and it isn't recommended for me to wait that long for my hysterectomy. The gynecologic oncologist will perform the surgery. He works with a lot of patients at high risk for cancer and while leaving the decision up to me, most of his patients have ovaries removed when he does their hysterectomy. Although he says my DES exposure shouldn't put me at risk at this point, he would be removing the cervix also.

I am having a really hard time deciding: do I keep the ovaries and rely on close monitoring to address breast cancer (mammograms/MRI's)? This would let menopause take its sweet time. Oncologist does not recomend Tamoxifen to reduce breast cancer risk.

Or do I have them removed and deal with immediate menopause? Concerned about the hot flashes, mood swings, and osteoporosis risk. My doc usually manages this with his patients with HRT. What I'm seeing on the web is that estrogen replacement therapy alone will address the first two without increased risk of breast cancer.

What about a third option: having just one ovary removed? Would this be a good compromise to reduce breast cancer risk without having to navigate the menopause swamp right after surgery? (or is figuring out the hormone balance not that big of a deal?)

Any input is appreciated, thanks!!!

Hi It's really a difficult decision, with so many factors to consider. It's too bad that you're not able to wait until you have the genetic testing results as that piece of the puzzle could affect your decision - although I'm a bit confused as to why this is an emergency if the surgery is for fibroids and you don't have debilitating symptoms from those?

There are other, less invasive methods of dealing with fibroids which don't carry the same risks of long-term complications as surgery does. Have you considered/pursued any of those? In fact, many insurance carriers won't approve coverage for a hysterectomy for fibroids unless/until the less invasive treatments have been tried unsuccessfully.

As far as the family history of breast cancer goes, while it does raise your odds of getting breast cancer at some point in your lifetime, the fact is that most women who are diagnosed with breast cancer (myself included) have no family history. And it is definitely not a guarantee that you *will* get breast cancer, ever. So, absent any convincing reason why you must consider breast cancer risk as a factor in your decision, my inclination would be to go with watchful waiting - but you have to do what is comfortable for you.

The ovaries - remove or not? - decision is a complicated one. I opted to remove mine, but I was several years closer to natural menopause (I was perimenopausal and 45) than you are. And, for that matter, even after removing my ovaries and without a family history, still I was diagnosed with breast cancer two years after my surgery, so there are no guarantees. IMHO removing one ovary makes little or no difference. In some cases, the remaining ovary will 'pick up the slack' and estrogen production will be the same as with two ovaries; in other cases, whether one ovary is removed or even NO ovaries are removed, the ovaries/remaining ovary can "shut down" after surgery on its own. So, it really doesn't work to base your decision on how you think your body will behave after surgery because it's almost impossible to know how that will be.

In general, my opinion is that it makes sense to do as little invasive damage to your body as possible in order to avoid the 'ripple effect' that can happen once an organ or gland is removed -- some women breeze right through a hysterectomy and/or oophorectomy but some of us have life-changing consequences that may not be predictable, and you don't know going into it which group you'll fall into. So, I would first try other options (medical/radiological?) for dealing with the fibroids, and if that doesn't work, remove as little as possible. I'd remove only organs or glands that are diseased or malfunctioning, and not perfectly healthy ones betting on what is an unpredictable future.

I hope this helps. Good luck with whatever you decide to do!

s,
-Linda

Surferbabe,

THANKS for your detailed and thoughtful reply! I'm sure a lot of women on here can relate to the feeling of getting lots of very different advice and having trouble sorting through it and deciding what feels right for them. That has been the case for me for sure. Also looking at the thread, "Anyone else told only Abdominal Hyster because of fibroid/uterus size?" started by 10ssista has been really helpful to me too.

One thing I left out: I had surgery about 4 years ago when what used to be a regular period gradually turned into bleeding and spotting pretty much throughout the month. I don't remember pain or cramping, but it was just not something I was willing to live with. My regular gyno performed the surgery and removed a lot of the lining of the uterus... I was advised that it would be very difficult for me to conceive if I wanted children- (I did not)- but the bleeding issue was completely solved. She did also notice some fibroids and advised me at that time that as long as they did not grow rapidly, they were OK to stay.

At this point, both my regular gyno and the gynecologic oncologist I've seen for my 2nd opinion agree that a hysterectomy is necessary since the fibroids have grown so rapidly in the past year and since I do not wish to have children. That makes sense to me.

I have been thinking a lot though about how urgently this needs to be done, especially since the fibroids are not giving me "quality of life" issues. My 2nd opinion doctor (and his nurses) keep pointing to the cancer risk, which at the initial consult he listed as 1/2 of 1%, as the reason to do it as soon as possible. I am feeling more and more like I want to get back the results of genetic testing before the surgery occurs, and that the benefit for knowing my genetic risk going into surgery outweighs the month of additional risk of possibly having cancerous fibroids. I just do not want to remove perfectly good organs (ovaries) if the genetic risk for breast cancer is not there.

One other thing to note: while my doc is experienced at robotic surgery, he does not recommend it for me... he echoed what was mentioned in the thread I listed above: that if the fibroids do wind up being cancerous, he wants to remove them intact and not risk cancer cells floating around my body if they are removed in pieces. I really did not want a big incision or long recovery time, but in light of what he said, I will deal with it.

Thanks for listening and for your encouragement!

Seeker -

I can't weigh in on the fibroid portion of the discussion but do have questions about the laproscopic part of it.

Is it that your fibroids have grown so large that they can't be removed vaginally? So that is why your Dr. is saying they would need to be removed in pieces?

I didn't have fibroids but did have a cancer diagnosis and all my organs were removed vaginally in one piece. I know some women take things like lupron to reduce the size of the fibroids but don't know with your risks if that is an option or not.

Just some additional questions to ask your Dr. as you are making your decision.

Hi, Tauruslady!

Yes, I believe that the size of the fibrioids and my uterus, plus the fact that I have never had children, means that a vaginal hysterectomy isn't an option for me, and that I would need an abdominal incision to get them out intact.

I asked my doctor about Lupron and he advised against it, although I am not sure why... I need to ask. I had another consultation with him last week to discuss delaying the surgery until genetic testing results were in. He was OK with my waiting but was pretty adamant about removing the ovaries if the testing reveals me to be high risk. He treats a lot of patients with ovarian cancer so doesn't like to take chances when there's known risk.

Thank you very much for replying!