Experiences of oophorectomy instead of Zoladex

Hello, this is my first post ever on any kind of forum. BC can be a lonely adventure.

I have read with interest the many posts on Zoladex. I am 43 and had a G3 tumor diagnosed in February this year. Had sentinel node biopsy (thankfully all clear) and then a mastectomy a week later. I was offered chemo, but after research (and several doctors later) I decided to have Zoladex and Tamoxifen treatment - the gain is nearly as good as chemo. The Tamoxifen was OK, but then I had so many side effects after the first monthly Zoladex injection I nearly gave up. I am now on my third injection, things are much the same - I’m tired, nauseous, can’t concentrate and feel really out of sorts. So I am considering giving up Zoladex and having an oophorectomy, but staying on Tamoxifen. (Even without ovaries the body does produce some oestrogen, but much lower levels.)

Anyone out there tell me anything about the operation? I am seeing gynae in October, how long am I likely to wait for the operation? How long did recovery take? And, did anyone consider having uterus removed as well because of long term risks associated with Tamoxifen?

Thanks
Sarah

Hi Sarah

I had an oophorectomy in March this year, best thing I ever did, changed over to Arimidex and although I get the joint/muscle aches and pains, it is nothing compared to the side effects of Tamoxifen. Only you can make the final decision but I’ve never regretted it for one minute. I also took zoladex for two years (alongside the tam.) without any problems, only after stopping the zoladex did the side effects of the Tamoxifen kick in - apparently Zoladex is far more potent that the Tamoxifen so it masked the effects.

If there are any other questions you would like to ask me just fire away, only too pleased to help.

Love K

Hi Sarah - sorry you have had to join us but hopefully you won’t feel so lonely here, I have had great advice and tips from loads of lovely ladies - anyway here goes brief history of me! - originally diagnosed when 34 in Sep 03, grade 2, stage 2, had WLE, 1 node involved, 6 x FEC, 4 weeks radio then tamoxifen and Zoladex started in Apr 04 - ovaries and fallopian tubes removed Oct 04 them switched to Exemastane in Apr 06. Diagnosed Aug 07 with high grade DCIS - going in on Tuesday for mastectomy with ommediate recon (Moderator can’t wait for profiles to be back!!)

Best thing I ever had was ovaries removed (I think they automatically take fallopian tubes as well) only side effects I had were headaches which went after 3-6 months. Was done in day surgery and was home same night. Bit sore for a week and quite bloated and pains in ribs due to gas they use to inflate stomache for keyhole procedure. Only one scar visible when wearing a bikini and that is in my stomach button!! I didn’t go for uterus as well as I am now on an aramatose inhibitor and I don’t think there is any risk of womb cancer with that. I have had an abdominal ultrasound to check though. Had to wait about 3 months for op from date of initial consultation with gynae.

I feel much better - no worries about periods and hormones returning and contraception or ovarian cancer. I was lucky and didn’t experience any side effects with Zoladex but still am happier knowing ovaries have gone.

The problem with having ovaries removed early is bone density changes and I am on a weekly drug to build up my bones to prevent brittle bones when older and have to take lots of calcium - my excuse for tub loads of Ben and Jerry’s Ha !!

Great for me but think carefully as it is irreversible and can reduce sex drive and make sex painful once hormones gone.

Feel free to ask anything else

Take Care

Sarah x x x

Hi Kelly and Sarah
Thank you both for your comments. Sorry to be slow to reply but I assumed I would get posts in my email box and didn’t check back here, (doh, beginner at work!). This is really helpful. I am going to go for the oophorectomy as soon as possible. I have had a bone density scan done so that can be monitored.

Kelly, I see you changed to Arimidex, that was the original plan for me but doctors think that if I reacted badly to Zoladex then I will react the same to Arimidex. I did start Tamoxifen before Zoladex for about six weeks and the side effects weren’t bad. Staying on Tamoxifen may be an option but I worry about the uterus. How was surgery for you? Was it a day like Sarah? And how long did it take to get over the operation? Did you get menopausal symptoms?

Sarah, wishing you all the best for recovery from mastectomy and see you back on the forum in no time.

Best wishes and thanks for the info.
Sarah

Hi

Surgery was a day. Had op around 10 in the morning and was home by 8 in the evening. Keyhole surgery, a little nip in tummy button, one either side and a tiny one on pubic hairline. (I don’t know why but I always giggle to myself when I say or write pubic!!) daft moo!!! Anyway, 24 hours complete rest afterwards and two weeks recovery. I did have to take it easy though as I have a disabled son who needs constant lifting by my hubby took time off work which was a big help. All in all it was not a difficult time and recovery was good. A little sore but paracetamol worked fine.

You could always give Arimidex a try and then switch to Tamoxifen if you don’t get on with it. You never know until you try.

Good luck

Love K

Wow! Only a day, that doesn’t sound too bad. Sounds like no drains? And (my big dread) no catheter? Is there anything negative in terms of side effects in the months and years afterwards? It all sounds so straightforward!

Yes I would be happy to try Arimidex as you suggest, once I’ve got the operation out of the way. I just had my appointment brought forward for the gynae, it’s on 25 September so things will hopefully move after that.

Thanks Kelly.
Sarah

After reading all the above again I am beginning to wonder if the combination of Zoladex and Tamoxifen is not right for some people. Its trial and error for a lot of us though. Let us know how you get on with the gyny on 25th, I am sure it will be good news. Also, why go through menopause twice.

When you have the op, just take it easy for a couple of weeks and then after that you will be back to 100%.

Love K

Dear BeingSarah, I was diagnosed with two grade 3 tumours in 2003. After a mastectomy, chemotherapy and radiotherapy I was given zoladex and tamoxifen for two years. I haven’t had my ovaries removed.

There has been a discussion on this topic on the ‘undergoing treatment: hormone therapy, tamoxifen, etc.’ category under the thread “Ovaries = Estrogen” that you might like to look at.

I really think that you need to discuss all this fully with your oncologist before making any decisions.

Best wishes,

Sue

Thanks everyone, I will continue to research. The bottom line is we’re all different and we all need individual treatment plans. What works for one person won’t necessarily be the best for someone else.

All best wishes, Sarah