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zoladex or ophorectomy / hysterectomy?

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Re: zoladex or ophorectomy / hysterectomy?

Hi Karens96

I'm sorry to hear about your own cancer diagnosis, and I hope you are tolerating Anastrozole well.

It's really encouraging to hear you recovered so well from the op. If I had the op (keyhole as you say) on the NHS they would send me home the same day, but when I chatted to the surgeon at a private hospital they would keep me in overnight, so when I do get it done I'll go private, I feel happier that they'll keep an eye on me! I have friends who have had everything removed and like you they too feel it was the best thing they have ever done and certainly don't miss having a uterus, ovaries etc..

Yes it's a shame us girls can't have HRT, but here's hoping the menopausal symptoms won't be that bad. I had my first zoladex injection on Tues so still waiting for any menopausal symptoms to kick in, it feels like the calm before the storm!

Take care

Nameste

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Re: zoladex or ophorectomy / hysterectomy?

Hi 😊

I had a full hysterectomy and oophorectomy just over a year ago, 6 months before my cancer diagnosis. So whilst I can't answer your question with regard to cancer, I can at least share my experience of the op.

I can honestly say it was very straightforward and there was very little pain afterwards. I was only in hospital for one night as I had keyhole surgery. 

Having the oopherectomy made me post menopausal literally overnight. Although I didn't notice any symptoms of this for about 3 months. I started having hot flushes and some irritability so I went on HRT, which helped. However I wasn't destined to be on it long as my breast cancer is oestrogen positive. I've had to stop the HRT and I'm now on Anastrazole. 

I miss the HRT! But I don't miss the bits they took away during the op. However I should point out that I was 50 and definitely not planning any more children. 

Good luck with your decision. I hope whatever path you take helps in the long run ❤️

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Re: zoladex or ophorectomy / hysterectomy?

Hi Tenby,

So pleased to hear you are recovering well from your oophrectomy just a couple of weeks ago. Wow. It's really heartening to hear of people doing well. Glad to hear you haven't been affected by Covid too. It is very hard with a toddler in tow, they demand a lot of your time. I have a 9 year old and a 5 year old, so I am lucky that they are at ages where they can occupy themselves a little more.

I had my first zoladex injection last Tues, it went well and didn't hurt at all. Had a little bit of grumbly period type pain since, but nothing significant. It hasn't stopped me exercising! 

I'm still planning on having the oophrectomy like yourself, but will probably be March next year, get over the winter first. 

You sound very sensible and I think as long as we stay active and eat healthy diets there is no reason why our bones and hearts shouldn't be ok. I mean thousands of women go through the menopause and live another 20 or 30 years, and they are just as low in oestrogen. 

Good luck with the move back to the Netherlands, that's a beautiful part of the world. I can totally understand wanting to start the next chapter of your life in the Netherlands without medical intervention. Here's hoping 2021 will be a new start for you and your family. Wishing you all the best for the future, and thank you for your messages.

Nameste x

 

 

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Re: zoladex or ophorectomy / hysterectomy?

Hi Nameste,

Reading your post made me  happy - even if it took me some time to reply. It is just really nice to hear from someone else with a similar inquisitive spirit! I hadn't thought about phoning those organisations, but ordered books about heart and bone health instead. Different roads to feeling in charge I guess. So good to hear they could help you out. Might phone them too as I somehow never get to read as much as I'd like to (I have a two year old claiming every free moment XD).

I had a bilateral salpingo ophorectomy a couple of weeks back and am recovering nicely. Fortunately, no COVID trouble, although I was also worried about this. The thing is, we are moving back to the Netherlands (I am Dutch) due to Brexit, and I kind of wanted to start our new chapter without pending medical distractions. Now I feel ready (and still a little tired, but nothing an afternoon nap won't solve).

Anyway, wish you all the best. I think that if you can cope with the injections it is also really nice to keep your options open. All my best wishes

Tenby

 

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Re: zoladex or ophorectomy / hysterectomy?

Hi Tenby,

Hope you're doing OK. Thanks for the info it is re-assuring that you have coped well on the injections for a year now. Fingers crossed I'll be the same. I'm still considering surgery in the new year and one upside would be I'd have no ovarian cancer risk if they came out, but as you say it is irreversible so have to give it some careful thought.

I'm sorry to hear about your osteopenia, the bisphosphonates will sort that out. I actually emailed Dr Liz O'Riordan as I had a question on the AI tablets. She was very kind to reply to me, and she is on bisphosphonate infusions too, as she had osteopenia. Already her bone density is back to normal. She said she would never prescribe tablets as there is an associated risk of cancer of the osophegus, which you don't get from the infusions. I hope you find the book useful. I think it is really important to feel in control especially when you feel so much is out of our control with a BC diagnosis. As you say so much info we have to ask and find out for ourselves. In the book they say that as hormone therapy lasts for such a long time, be prepared for treatments to change, be extended as new research comes in.

I chatted to my oncologist last Friday who thought it was sensible to start on the injections with a view to possibly having surgery next year. Originally I was considering surgery next month but with coronavirus cases going up it's put me off! 

Talking of heart and bone health the other thing I did in my research was to call The Heart Foundation and The Royal Osteoporosis Society, both of whom were very helpful in talking through risks and how we can keep healthy and support our bone and heart health. Might be worth contacting them for a different viewpoint.

Wishing you all the best with your treatment too, take good care xx

Nameste 

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zoladex or ophorectomy / hysterectomy?

Hi Namaste, 

You are so right. It is so easy and stressful getting tangled up in worries about which is the best option. In addition I also feel angry that consultants and surgeons hardly take the time to really go over the pros and cons.

Like you, I figure the operation has the added benefit of putting less chemicals with their own side effects in my body. And any side effect to low oestrogen levels is similar for both options...surgically or chemically induced menopause, it is the same result. This was actually something I didn't realise before. So I am now seriously reading up on bone and heart health - just had a dexa scan and they found osteopenia. Fortunately I am on biphosphonates already... but so much we have to figure out on our own!!

And then some gynecologist simply proposes a two-for-one, without going through the small print on the offer 😛 - they just don't seem to appreciate the emotional rollercoaster this is! Sorry for moaning...ahem. Sooo, I just ordered the book you recommended. It looks really good and I remember reading a few blog posts of one of the surgeons while going through treatment. I love, love, love the subtitle "feel empowered and take control!" 😄

I hope you will cope well with the injections + anastrazole. After a year of having them, I have found a good emotional place from where I can stand getting them. But once my treatment is over, I want to give myself the freedom of being able to forget about treatment (apart from that one daily pill). However, if you manage well with injections, it is a great option. I had a second opinion from an expert hospital in the Netherlands. They told me the advantage is that maybe in five years there is new research, and you´ll be able to adjust treatment if appropriate / necessary, while an ophorectomy is irreversible. So, that's something in favour of your path! Wishing you all the best xxx

Tenby

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Re: zoladex or ophorectomy / hysterectomy?

Hi Tenby

Sorry just another point to add, one reason I was considering surgery to remove my ovaries was I thought I'd only have one set of side effects to deal with from the Anastrazole and not have side effects from the injection as well. 

If your bone density isn't great you can have bisphosphonate infusions. I have a great book at home called The complete guide to Breast cancer written by Professor Trish Greenhalgh and Dr Liz O'Riordan. They were both doctors (one was a breast surgeon) and they both got breast cancer. It talks you through all the treatment options and side effects etc. I found it really useful. 

Take care x

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Re: zoladex or ophorectomy / hysterectomy?

Hi Tenby

I'm sorry to hear of your diagnosis at such a young age. Like you I was diagnosed with ER+ breast cancer in Nov 2019. I was lucky that I didn't need chemo, but was recommended Zoladex and Anastrozole for 5 years (to see me over the menopause) Or Tamoxifen for 10 years. I ummed and erred and in the end opted for Tamoxifen (for the short term). I've just turned 44 and I've been coping well on Tamoxifen and am nervous about that plunge into the unknown with a change of medication. However staying on Tamoxifen carries a slightly higher risk of recurrence in my case.

I chatted to a gyney surgeon who like you suggested removing everything uterus, cervix the lot which freaked me out! If I do opt for surgery I think I will just go with ovary and fallopian tube removal. But now with the coronavirus I'm not sure I really want to be going into hospital right now and may opt for injections in the short term.

Sorry I know none of this is helpful in getting you to your decision, it is a mindfield out there and my advice is to try not to get too wrapped up in the research of treatment options. I did and I was seriously overthinking it and tying myself up in knots. Sometimes it is best to go with your gut feeling, were you swayed in any one direction at the start? For me I think I'm going to give the injections a go and the Anaztrozole, I can always switch back to Tamoxifen if I'm having a hard time with side effects. 

Good luck with whatever you decide to do, 

Nameste x

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zoladex or ophorectomy / hysterectomy?

Hi Michele,

Thank you for letting me know about your experience and dilemma as well. There are so many things to take into account. I am sorry to hear you had such a bad reaction to the anaesthetic. Hope you are managing well with the injections and wish you all the best XXX!

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zoladex or ophorectomy / hysterectomy?

It is so nice to hear from someone who also took the no-injections road - I just really want to go back to a life that is no about cancer treatment all the time!

I have been having the injections since last year October and I haven't been too uncomfortable or "menopausical" - although I have lately noticed feeling a little more flushed when emotional. Did you find the ophorectomy cause a change in symptoms?

And also, did they suggest to take your uterus out as well? I was just really surprised by that extra and having to research and investigate another thing just did my head in 😛

 

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Re: zoladex or ophorectomy / hysterectomy?

Hi Tenby

I was diagnosed in August 2017. But I am older (51 at diagnosis). I was advised that as I was peri menopausal that I would be on Tamoxifen for 10 years (or maybe switched to another AI after 5 years) plus Zoladex for 3 years. The oncologist also said that if I couldn't manage the side effects of Zoladex then she could remove my ovaries. As I can't face more surgery (I have a bad reaction to general anaesthetic) I have stuck with the injections. Michele x

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Re: zoladex or ophorectomy / hysterectomy?

I had my ovaries removed in Oct 2017 after a diagnosis of ER+ Her2- breast cancer. I was still pre menopause and they obviously needed to get my oestrogen levels down - so the choice was monthly injections or oophorectomy. I was firmly in favour of the latter, but really had to push for it.

My experience of these things is to research it yourself, ask other ladies for their experience (as you already have done here!) and then make the decision that is right for you. There is no ‘one size fits all’ in this game. It has to be right for you.

Sending best wishes,

Rosie

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zoladex or ophorectomy / hysterectomy?

Hi there! 

I was wondering if anyone else has had a similar dilemma...

I am 39, and was diagnosed with ER receptive HER2 positive primary breast cancer last year. Since then, I have been on Zoladex,  almost a year now - since April in combination with Anastrazole. 

As far as I understood my oncologist (I have such a hard time getting all the info out of her...) I would be on Zoladex for 10 years - something I can simply not imagine as I have a needle phobia (arg). As I am close to menopause by then, she suggested I have an ophorectomy. During the information call (corona virus distancing), they gynaecologist told me that they thought it useful to take my uterus out as well, due to the Anastrozole possibly affecting its lining. 

Now my head is just spinning with doubts. As far as I know it is far from standard procedure for any women put on anastrozole to have her uterus out?! I have scheduled another appointment with the gyna, hope they can clarify better what my options are. But maybe someone here has had a similar decision to take?

Also, do I even really want my ovaries removed? I read in a forum thread some are only on adjuvant ovarian suppression for five years? Is the efficiency of longer treatment proven? In that case, is it wise to go the road of no return? My bone density is not fab (first scan showed osteopenia) and at this point I'd love to feel like my old menstrual self again for a few years XD (no genetic predisposition in our family for ovarian cancer by the way)

I know nobody can tell me what to do. And I guess they really just don't know what the best option long term is. I feel that an ophorectomy would allow me to enjoy life after treatment without the monthly injection looming over me. But I never really stopped to think about how important oestrogen is for our bodies as well. I think I am just having a bit of a hard time accepting the new normal. Would be grateful for any reactions of people having gone down that road before me. 

XXX