Advice/experience on Ovary removal/Hysterectomy & Mastectomy

1) You can ask for a full hysto, but depending on medical recommendations, your insurance may not pay for it; if the recommendation is just ovary removal, they'll likely pay for that, but may not want to pay for removal of the uterus. The best way to find out is to check with your insurance company directly if you don't want to wait for the surgeon to submit authorization and have it come back potentially denied. If you're BRCA-2, chances are high they'll cover a full hysto, if you're not it's really going to depend on the insurance plan + what your medical team recommends (and even then, a recommendation doesn't always guarantee approval).

One benefit of having everything removed will be it will close to negate your chance of developing uterine cancer and, if the cervix is also removed, cancer of the cervix. If you have issues with uterine fibroids or endometriosis, removal of the uterus will clean that right up as well.

Depending on how they decide to do a full hysto, your recovery time could be longer; most times it's all done laproscopically as that means smaller scars and less trauma but some cases still indicate the bigger abdominal incision to get everything out, and that'll add to recovery time. You'd want to find out prior what they plan to do if you have a full hysto done.

2) Can't help you on that one; after looking into it, I decided against reconstruction and am happy flat. I'm sure others who opted for reconstruction will chime in, and you can always check out the Breast Reconstruction forum for a lot of info on various reconstruction options.

3) It will happen if you have your ovaries removed as they're what produces the bulk of the hormones; if you just had your uterus removed, but left the ovaries, you wouldn't enter menopause as your ovaries would still be there producing hormones (even if they're doing their job poorly due to the PCOS).

4) I'll have to pass on that one, as I still have my ovaries and am not old enough for menopause to hit yet.

5) I'll pass on that one too, as my mastectomy was preventative. I'm sure other women will jump in with their treatment info though!

Pom: ok, I’ve been around the block a bit.

1. I dont think a full hysterectomy will do anything for you. It’s pretty major. You can’t remove all of your body parts because you MIGHT get cancer one day. If you remove your ovaries, that still lessens your chances of getting uteran cancer. I don’t think Breast cancer and cervical cancer are related. Your hormones and your periods will still cease to function.

2. I had a BMI with reconstructive implants. Hated them..had them removed and did lipo fat transfers. I now have small natural looking soft breasts, but I’ve had seven surgeries, including the initial bmx. My advice would be to go with the implants, as long as you don’t get chest radiation..then that’s another story. The other means of reconstruction are much more painful and body invasive.

3.if you have hormone positive cancer, then you really mightbwanr to get your ovaries removed. They produce the hormone that feeds the cancer. Removing your uterus without your ovaries isn’t really an option.

4. I find very little pluses to menopause. I was 47 when I got BC and was put into a medical menopause. The best part was my heavy periods ended. BUT , I feel like it aged me before my time. Estrogen keeps you young. And my vagina dried up. WORST THING EVER. I don’t think it happens to everyone, but it’s a risk and you are young and shouldn’t need to deal with painful intercourses. You should ask your doc about getting Lupron shots instead of removing your ovaries. There is more to it than snip snip..no ovaries. Not to frighten you, but in reality, it does change you.

4. He may put you on an Aromatase Inhibitor like letrozol, or exemestane. It works better on women in menopause. If somehow you decide to keep your ovaries ..tamoxifen would be the first go to treatment.

Just my experiences, btw..everyone is different.

Good luck. Hope I helped.

Stefanie

1. I have PCOS and so I am quite happy to have my Ovaries removed. But I am wondering if I should get the whole lot removed and ask for a Hysterectomy. None of my hormones and periods have ever worked properly and I suffer a lot of side effects from hormonal imbalance and PCOS symptoms. I am also infertile anyway too. So do I ask for the whole hog to be removed? Benefits? Down sides?

From what I read prior to my full on hysterectomy, the uterus can still bleed monthly or randomly even though no ovaries. I opted to have everything go. No more periods, no risk of ovarian uterine or cervical cancer. Your PCOS symptoms should resolve too

2. Mastectomy. So I realise I have a choice regarding implants and tissue used from elsewhere in my body right? Which would you choose and why? Benefits and down sides for both?

I chose natural tissue recon. Went in with breasts, came out with breasts. There seem to be fewer complications with natural tissue recon too. Benefits: breasts are soft & warm and move with you like the originals did. They will age with you too. No issues doing exercise either (plenty of threads on here talking about issues with implants and exercise). Plus you get either a tummy tuck or butt lift in the process ! (Referring to the 2 most popular forms of the surgery DIEP or SGAP). Downside: longer recovery time than implants, however I will say that going every week for fills on implants & dealing with TEs isn’t a walk in the park either and should be taken into account when considering implants.

Tips: make sure you see plenty of before & after photos of the surgeon’s work and that you are happy with the results he’s given others. If not, find another surgeon. Also make sure they go back in and revise/lipo hips and into tops of thighs and maybe abdomen too during stage2 to make your shape more natural again. Fat harvested then can be used to fill in the upper poles of your breasts.

Caution: latissimus dorsi recon is considered natural tissue but often is used to create a pocket for an implant. With a BMX it is absolutely not recommended to do this type of recon. There’s a whole thread about it on BCO.

3. I have been told that I will enter into permanentmenopause once my ovaries are removed. Excuse my ignorance, will that still happen if I had a hysterectomy?

There are several different types of hysterectomies and they don’t all include ovary removal. Yours would.

4. What are the plus sides to menopause? Will my acne clear? I am trying to search for the positives in what is going to be rather an ordeal for someone my age, let alone anyone...I just mean I am starting menopause far too young.

Acne may clear, no periods, cramps, tampons or pads, no worries about pregnancy, and no worries about wearing white pants! On the downside are mood swings, vaginal atrophy (ask your dr about a new medication called intrarosa if that happens), loss of libido (potentially), less intense orgasm (if uterus removed) and hot flashes. Natural remedies for hot flashes often contain estrogen or estrogen like compounds so make sure to heck with your doc before taking any.

5. He said I won't be on Tamoxifen but something else instead, I can't remember which. I'll ask on Tuesday. Who else is on something different to Tamoxifen?

I’m supposed to start letrozole (femara) first of the year. The class of drug is called aromatase inhibitor (AI for short). It basically stops your adrenal glands from producing estrogen/allowing fat to convert dhea/testosterone to estrogen. If your cancer is hormone positive, an AI in combination with menopause should basically starve any remaining cancer cells.

My breast surgeon recommended that I have my ovaries out because of family history even though BRCA negative. I was 53 at the time and was not even close to menopause so was thrilled to be done with monthly cycles. The only factor that I see that might convince me to do it at your age is the fact that ILC can spread to the ovaries. Btw, I had my oopherectomy during reconstruction. It only added 20 minutes to the operation and it was relatively painless.

Hi PomegranatePeaches (love the name!),

Thanks for starting this topic; I am very interested in this subject because I, too, have PCOS and am wondering whether I should just have a complete hysterectomy and start AI's rather than taking Tamoxifen.

1. The research I have done indicates that women with PCOS are at higher risk of endometrial cancer (cancer of the uterine lining) due to irregular (or no) periods and thus long periods of time between shedding of the uterine lining. So far, the research I've read indicates that there are no well-established links between PCOS and ovarian cancer or breast cancer - but I have a difficult time believing that our messed up reproductive hormones don't play a role in the development of cancer in any of our reproductive organs, especially when our cancers are hormone receptor positive. Anyway, if you are subject to irregular periods thanks to PCOS and are therefore likely to be a higher risk of endometrial cancer, you may want to consider having a complete hysterectomy. My understanding is that Tamoxifen, which is normally prescribed to premenopausal women with ER+ cancer, increases your risk of endometrial cancer even further. If you have a hysterectomy, you will be put on AI's instead, which don't seem to have the same risk for endometrial cancer.

Others have already addressed the downside of a complete hysterectomy, especially at your age - potential for early onset of bone problems, heart problems, cognitive function problems and sexual function problems, all due to loss of estrogen. The really sucky thing for young women with ER+ cancer is that in order to avoid a recurrence of our cancer, we may experience these problems anyway due to estrogen suppression through hormone therapy.

4. This is an interesting question. As you likely know, PCOS is caused by excess androgen production. It seems there are two ways this can happen: either your body makes a normal amount of estrogen and too much testosterone, or your body makes a normal amount of testosterone and not enough estrogen - either way you end up with excess androgen production. My understanding is that excess testosterone is responsible for the male pattern baldness, excess facial hair growth, and cystic acne that many women with PCOS experience, while lack of estrogen is responsible for irregular or no menstrual cycles. Since the ovaries are responsible for the majority of both estrogen and testosterone production in women, it would seem that removal of the ovaries should resolve these problems. However, the reading I have done suggests that it just isn't that simple. My understanding is that despite its name, PCOS is an endocrine system problem, not a reproductive system problem. The reproduction system issues we experience are symptoms of PCOS, not the cause. PCOS is often linked with insulin resistance, which I understand won't be resolved by a hysterectomy and may even get worse as a result of one. PCOS may also be the result of a malfunctioning adrenal gland, which won't be resolved by a hysterectomy.

For the last 10 years, I have successfully controlled most of my PCOS symptoms with an oral contraceptive. Now that I have ER/PR+ breast cancer, that won't be an option for me. I am afraid that suppressing the estrogen in my body to avoid breast cancer recurrence or metastasis will make my PCOS symptoms even worse - and without treatment, they are miserable. When I meet my medical oncologist, I intend to ask that she refer me to an endocrine oncologist. My hope is that an endocrine oncologist will be able to help me determine whether my adrenal glands are playing a role in my PCOS and whether I have insulin resistance that might successfully be treated with metformin (which I have read may actually be beneficial with respect to breast cancer!). At the very least, I will get my hormone levels tested and hopefully gain a better idea of the actual cause of my PCOS; this then may help me determine the best path for simultaneously treating my PCOS and hormone-receptor positive breast cancer.

Hope this helps! I was feeling sorry for myself having to deal with both PCOS and breast cancer at age 42, but you are younger still by a full decade. My heart goes out to you and I wish you the best.

Dance