Anyone had ovaries removed to lessen BC coming back?

Louise J

Hi all,

Just had second surgery yesterday as did not get clear margins on first surgery due to DCIS surrounding the IDC. My oncologist has suggested ovaries being removed as I had blood clots from all the chemo E/C 5 rounds ( diagnosed Early July’18) and she’s concerned about giving me tamoxifen as it can increase risk of blood clots so is suggesting Zoladex injections continue ongoing ( have been going monthly to GPand having them with a local each time for past 5 months ) as I’m pre menopausal (49) and then an aromatise inhibitor as well which all seems a bit much really.  Oncologist suggested this as tumour is 95% Esterogen + and the ovary removal should lower the Esterogen production in the body making me less likely to have recourances. If you are familiar with this surgery or have had success or not have success with it would love to hear from you! Also did you need to continue taking any other meds with it as I’m really hoping to get off everything after radiation which is scheduled for Feb next year. 
Thanks BC sisters Louise J xx 

Zoffiel

Hi, I had an oophorectomy in December 2016, I was 53 and had been diagnosed with a recurrence after 10 years. My cancer was  hormone hungry and as I'd already taken Tamoxifen for 5 years I had no real choice apart from AI after chemo and rads. I didn't want to stuff around with Zolodex--I was perimenopausal so would have needed it. I was also concerned about ovarian cancer.
The operation itself was no big deal, but that last step into menopause was a doozy. I don't regret doing it at all, but I do miss the benefits of natural hormone activity. Not that I felt i had a great deal of choice. It's a shitty trade off, but there is comfort in knowing I've eliminated one risk, ovarian cancer, which was very real in my circumstances. Mxx

iserbrown

@Louise J
I went through the Zoladex routine and it wasn't hard, it was more about discipline, appointment every 4 weeks.  I found the injection on the right side of the abdomen no worries, on the left side I would always have a funny tummy for a day or two.  Alternate each month.  Time soon passed and that is behind me.  It was in conjunction with Tamoxifen.

It is a long road on the hormone treatment, we have no say in the time we are to be on it!  I was originally told 5 years and now it is 10 years like some of us and I would love to count down the time however I have accepted where I am at.  The Oncologist has taken me off Tamoxifen to Femara and now Aromasin and I have 6 plus years to go!  

For me I was high risk for Uterine Cancer hence changes to medication.

This link from the BCNA website should help you get your head around it a bit more.  Within there are links to booklets et cetera (if you haven't seen it already)

https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

Take care and best wishes and remember some of us sail through without hassles and here's hoping that is you!

Anne65

@Louise J I had my ovaries & tubes removed in April this year following successful BC surgery in Dec last year. The main reason for me was the fact that my mum died of ovarian cancer at age 46 so everyone in my medical team said it was "a no-brainer" for me to have them out. I guess the circumstances are different to yours but in the end, it is one area that is now eliminated from my body to have the cancer come back. The gyny onc said that anyone who has history & doesnt need them anymore, he reckons to consider removing them. I also remember a lady who did a followup ultrasound on my pelvis after the operation saying to me that she had seen so much horror in her job, that she would get hers removed when she didnt need them anymore. It is a silent killer but one that i dont have to worry about anymore. The op is very simple but you do get very bad shoulder pain which slowly subsides after 4-5 days. i had 3 tiny incisions with dis-solvable stitches & I cant even see a scar anymore. I was out the following day & had a week off work. I had already gone through menopause so didnt have any hormonal side effects & i am on no medication. It is a weight off my mind as I always had a feeling i would get the disease even before I got BC & I often went to Adelaide for check-up scans. Good luck with your decision & be guided by your gut & also the advice of your medical team & of course the wonderful ladies on this forum who have been through it themselves. We are all different & react differently to medications/treatments but we are all the same in that we have gone through this "journey" & been supported along the way. love & hugs xxx

Deanne

Hi @Louise J
After Chemo put me into menopause at 47, my onc put me on Tamoxifen and kept a close eye on my estrogen levels. 18 months later my ovaries started functioning enough to require something to be done as my chance of BC recurrence was pretty high.

So at 49 I had my ovaries and tubes removed. The op was simple and I recovered quickly. I was then able to change from Tamoxifen to an AI (Letrozole). This gives me the best possible protection against an estrogen fueled recurrence. I have had a few unwanted side effects but manage them well and feel my quality of life is still very good.

I need to still take Letrozole as even though my ovaries are gone, estrogen is still produced by other parts of the body. Letrozole is good at stopping this. Good luck with whatever you decide. Gathering as much info and feedback as you can is the best way to decide what feels  like the best thing for you. Take care. Xxx

Louise J

Merry Christmas  and thank you so much for sharing your Ovary stories @Deanne @Anne65 @iserbrown and @Zoffiel Appreciate all the info/ feedback and will consider all options. Good to hear the ovary removal has been successful for each of you. Much to think about with this one. Hope the new year brings great health reports and a wonderful year your way!! Hugs xox 

Patti J

@Louise J. Unlike the other ladies, I  was offered an oophorectomy, when first diagnosed at 47, but I  declined. My reason for this was my very strong family history of osteoporosis. My mum and my grandmother both had dowager's humps. One of my sisters now has osteoporosis. 
16 years later, I am pleased with my decision even though I  now have mets.

lgray3911

Hi @Louise J I had my ovaries and tubes removed in August! Was a very easy and straight forward op. Had the pain in the shoulder for 2 days (trapped gas from when they inflate your abdominal for the keyhole surgery) and very common apparently. Chemo had thrown me into menopause (was only 37 when diagnosed in 2017) I had to do chemo and radiation and herceptin but all that is down and dusted and I’m now on Exemestane and am on that for 5 years 

Sunshine0206

Hi there.

i was diagnosed last year at 40. 

I started on tamoxifen and my oncologist monitored my oestrogen levels.  Unfortunately they started to increase but no return of my period.

i was started on zoladex. Once bloods confirmed menopause, I was commenced on exemestane. I have found it much kinder than tamoxifen. I take a calcium/d supplement.

My surgeon/oncologist/radiation oncologist/gynaecologist have all advised me that they believe oophrectomy is my best option.

Quite frankly I don’t want an injection every month. The 5-10% failure rate is off putting as well. 

So 5 more sleeps until surgery!!! Woohoo!

AllyJay

Good luck with your surgery @Sunshine0206. Your ovaries have been made chemically redundant, so , I agree...why keep them when they could be potential time bombs? 

Sunshine0206

Exactly and the chemicals are not totally reliable. Surgery is! 🙌🏻