To remove or not to remove

[KRISS]

Hi Ladies
I just wanted to see how some of you ladies think about or made your decision on having a hystirectomy or ovaries removed. Trying to decide and I need help.
ER+,PR+, HER2, 43 premeno before chemo, no period since Jan. My aunt died of ovarian at 52. This is what scares me. Husband, Mom and Gyno says yes let's do it. Surgeon and Onc says No need. Any stories or insight would be greatly appreciated. Have a blessed day.

[Becky]

Dear Kris

I had my ovaries removed 2 years ago at age 46. It was about at my one year cancerversary. I removed them for many reasons. Firstly, my onc suggested that I get a baseline uterine ultrasound because he wanted to put me on tamoxifen. I did this even though I was in chemopause and my bloodwork said I was postmenopausal (although prior to chemo, I had my period regularly and on time). This ultrasound showed that my uterine lining was very,very thick (15mm when under 5mm is normal) and that I had 2 "objects" on my left ovary. My onc was always against me getting my ovaries removed even though prior to this, I wanted to because my paternal grandmother (and one of her sisters) died from ovarian cancer AND I am not highly ER+ and I am PR neg so tamoxifen tends not to work very well with that pathology (especially if Her2+ as well).

One month later I got another ultrasound with the same results and had to have a uterine biopsy (negative). My gyne said - lets do the oophorectomy. You are somehow feeding the uterus with estrogen somehow and then a day or 2 later, I GOT my PERIOD back!!!

So I did it. The "objects" on my ovary were blood filled cysts - I was probably trying to ovulate during a chemo session and everything just shut down. I got a D&C at the same time - no uterine cancer for sure (and I just got re-ultrasounded this June and my lining is 3.5mm - well in the normal range). And although I am BRCA 1&2 negative - ovarian cancer does obviously run in my family and I have greatly reduced that risk (and ovarian is not as easy to beat as breast cancer is).

So, that's why I did what I did. I take Arimidex now (since 2 weeks after the oophorectomy) and I am happy with my choice.

I hope this helps. Have a nice weekend.

[Kimberly Lewis]

I did have an oopharectomy hysterectomy as soon as I could - just felt compelled to do so. I also read that Tamoxifen wasn't effective for us Her2 gals an needed to do the surgery to start on Femara. I could have done Lupron but didn't want to have another drug to keep up with. After my surgery I went to be tested for BRCA and I was positive - so I just saved myself from having surgery later on. Lots of reasons both ways - do what seems right to you.

[Odette]

Dear Kriss,

I had a friend who had breast cancer first then considered oophorectomy, her doctor advised her against it.
She was a pediatrician herself but against her better judgement went along with her surgeon's recommendation. She was symptoms free of the breast cancer, but a couple of years later she got the ovarian cancer, she always said they were closely related - which metastasized.

She was a beautiful fearless spirited woman. Her vote is an emphatic: YES.

Though sad, hope this helps,

Odette

[Patricia]

Hi Kriss,

I am scheduled for an oopherectomy on Aug 6th. All of my dr's were happy with my decision to do so. More for the permanent ovarian cessation aspect of it. I was 37 at dx, not even in perimenopause and I have 2 kids and 2 step kids. I was clearly not planning on any other children ;-). I have been on Lupron for about 1.5 years and I am really feeling the need to eliminate any drugs that I can at this point. I also had an ultrasound which showed a cyst on one of my ovaries causing some pressure and achiness in my lower abdomen. Between all of these things it just added up to me deciding it was time for them to go. My breast specialist/surgeon has really been pushing for it from the beginning and I have been reluctant to make a decision, but now that I have and scheduled the surgery - I feel more certain than ever and very happy about my decision. I think it is very personal, follow your instincts and your heart on this one.

Hugs,
Patricia

[Shad]

Hi Kriss,
Have you been tested for the BRACA gene? Do you have any pre-existing ovarian or uterine pathology (eg. fibroids)?
That being said/asked, my experience is that there is no set answer regarding removal of ovaries and uterus for us. My onc said that, for me, I had no increased risk of ovarian cancer over other non-BC women (risk was around 1 in 100). So, it came down to this: was I willing to be the 1 in 100 that got ovarian cancer? It sounds like your risk is probably greater, considering your family history.
FWIW, my advice is: take your time to make this decision. You have gone through a lot recently, and the choice to have surgery does not need to be made right away. Any surgery we have can knock us back for some time, and your strength reserves have been tapped a lot lately. I had an abdominal oophrectomy and hysterectomy one year after being diagnosed with BC (large uterine fibroids). The surgery was easy and recovery was MUCH easier than I anticipated.
Good luck on your choices.
Shad

[Val Pfeiffer]

This is just one oncologist's opinion, but this is what my first oncologist told me: he said that he has seen situations where patients have removed their ovaries and cancer has later appeared in the area vacated by the ovaries. He didn't feel that taking the ovaries was that important because of that.

Val

[saleboat]

There are health consquences to removing ones ovaries at a relatively young age. For me, I decided that removing my ovaries for an UNKNOWN benefit (given that I had early-stage bc) was not worth it. I may have thought differently about it if there was any ovarian cancer in my family, but there isn't.

If you search, you'll find a study that I posted regarding a recent study that followed women who had their ovaries removed and the different health results.

I know it seems to make sense that removing ones ovaries could lead to a better outcome for early stage breast cancer, but given today's treatments, it is unstudied and not supported by solid medical evidence. (Again, the family history makes it a different case.)

Good luck.

Jen

[tricia keegan]

Hi Kriss
I had an ooph last year at 47,pre meno before chemo. I had read about it and mentioned it to my onc purely as a preventative measure and he agreed and referred me to a gyno. I've no regrets at all,the surgery and recovery was very quick and I've been on Arimidex ever since although I do have some bone loss so now take fosamax also.
It's not an easy decision but as highly triple pos it was the right one for me. Good luck deciding!

[KRISS]

Thank you for all your insight. I see just about all my Docs in the next three weeks so I will get all their input. I have time and will think about all the benifits and dangers. Thanks again, Kriss

[MCS]

Dear Kriss,

I am er-/pr- and brac1 and 2 -. So I was not at risk of ovarian cancer according to onc and gyno. I am also menopausal, prior to chemo and I am 51 now.

However, I discussed with the doctors and he said, you can remove for peace of mind.

About 4 years ago I had an endometrial ablation because of intermittent bleeding.

So earlier this year I had the ooph. No regrets. something less to think about. Sometimes I tell people, I wish I could fill my organs with styrofoam, like the liver and the kidney and the lungs, and the brain LOLOLOLOLOL.

I had a little time to recover. I had a lot of scar tissue from the ablation so the procedure took a little longer than expected and was slower to recover. I also have a stomach flap of tissue hanging out there like after a c section afterwards that I am desperately trying to exercise away with little success. Also be aware that when there's ovaries removal, there could be an increase in weight so don't eat that chocolate cake!

Lots of love

Maria (mcs)

[weezie1053]

Kriss, I am still a newby to this website although my one year anniversary of my surgery is next month. I posted a thread a couple of weeks ago about genetic counseling. I was fortunate in that there is a genetic counselor in the same office at the University hospital (UVA) where I am treated. I decided to meet with the genetic counselor. Although I thought I knew a lot about my family history, I was actually pretty ignorant. I had to complete a detailed history of my family which meant numerous phone calls to family members including cousins, an uncle, etc. Although I tested negative for the BRCA genes, the dx was that I am "high risk" for recurrence due to a brother's prostate cancer, Grandmother's BC, my BC, etc. It was a good learning exercise, and they provide you with a wealth of information. Additionally, I "assumed" my health insurance was going to deny the testing; however, they authorized it. They submit the DNA to Myriad Laboratories, and they submit to your ins carrier for pre-authorization. This way, you can make the decision if you want to proceed with the testing or not based if your insurance denies the expense. I also believe the dx of "high risk" will ensure that my health ins pays for more frequent and aggressive screening.

...just my 2 cents.

Louise