Advice Please

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1

Hi Girls

I’d really appreciate any advice from you about ovary ablation and hysterctomy after zoladex. (I’m ER/PR+)

I’ve been referred to the gynae bods after asking about ovarian ablation. Zoladex finishes in 6 months and apart from the well documented side effects, I’ve felt comparatively well. From a BC point of view, ovarian ablation would not have any additional benefit for me but would improve my quality of life for the following reasons:

Before BC I had life altering migraines and heavy periods, breast cysts, acne, mood swings and excess body hair, all of which were put down to ‘hormones’.

Following a hysteroscopy in 05 I had a Mirena coil fitted to sort out the heavy periods but that had limited success and when BC was diagnosed I had it removed in 08. This is no longer an option in treating my heavy periods.

I’ve got a few questions I want to ask the gynae people but I’m hoping you girls can offer advice or give me some more questions to ask.

My definite requirements are:

No more BC!
No more periods!
No more migraines!
Get my libido back!!

If mood swings/hairiness/acne were reduced, then that would be an added bonus, but in the scheme of things aren’t very important.

My first question is:

What combination of removal of ovaries and/or uterus will achieve the above?

I’m assuming that to stop periods and migraines and to help prevent cancer coming back I would need to have my ovaries removed. Am I right in thinking that I wouldn’t need to have a hysterectomy to achieve this?

My second question is:

If I had ovarian ablation (with or without hysterectomy), would I still get the same high level of side effects I get now with Zoladex ie no libido, tiredness, hot flushes, insomnia etc?

My last question is:

Given my ER/PR status, is leaving my ovaries intact and just having a hysterectomy instead a feasible option?

So many combinations/questions and I’m still not sure if I’m asking the right questions - I hope you can help?

Thanks again for listening.

Best Wishes

Valkyrie

2

Hi

I am 100% er and pr +.

I was on zoladex (and tamoxifen) for 15 months and then chose to have my ovaries removed and stop the zoladex.

They just removed the ovaries and tubes by keyhole surgery as a day stay patient. Very simple op.

This puts you into instant menopause which means that the side effects are more or less the same as from the zoladex - except permanent. Hot flushes, mood swings, loss of libido etc, but no more periods and one less drug in your system.

Being on 34 at time of dx, my onc thought it a good idea to permanently stop the oestrogen, whilst also removing the risk of ovarian cancer.

Good luck with your decision

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Also to say that its the ovaries that produce the oestrogen so a full hysterectomy is not needed to stop the hormones.

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Hi Valkyrie

My symapthies with the heavy periods and acne - been there, done that, altho’ it was a long time ago.

When I had my ovaries removed, my skin cleared within a week or so. It was astonishing. Even now, I can’t believe the zits haven’t come back. Also within a week or so, I was slap bang in the menopause. It was extrememely abrupt, as of course, my ovaries weren’t shutting down, they’d been removed.

If your ovaries go, your periods should stop (mine didn’t properly, but that’s because the oopherectomy was badly done - another story)

Unfortunately none of the hormone treatments I’ve received for bc over the years (oopherectomy, Tamoxifen, AIs) have had a beneficial effect on my libido. Quite the reverse, in fact. And sadly, from the posts on here, I know I’m not alone.

Anything that intereferes with the amount of oestrogen in the body or suppresses its effect will almost certainly do this. Hence the detrimental effect on sex drive.

There isn’t much help for this problem (particularly if you are ER+) that doesn’t involve an increased risk of recurrence. Products such as Replens and Sylk can solve the mechanical problems of dryness, but don’t increase libido.

I’m sorry if I sound like the bearer of bad news. I really think the medical profession itself should be more upfront about this aspect of bc treatment, but it seems to be largely ignored.

Talk it over with the gynae people - I had a hysterectomy a few years later felt much better for it - wished I’d had it done years earlier!

Hope this helps…

X

S

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Thank you ladies for your experiences and advice.

I’ve suspected that to achieve a bc reduction/migraine/heavy period/acne free life I’d have to go down the route of surgery that would keep my libido at bay. It’s so sad that this is the penalty we have to pay to keep healthy.

I’ll ask as many questions as I can at the gynae appt but yes, I agree, there needs to be more information about the effect on libido when undergoing treatment.

I’m pretty certain I’m going down the oophorectomy route - I just need more info on the pros and cons of a hysterectomy which I hope I’ll get at the gynae appt.

(Looks like I’ll be investing in shares in Ann Summers to get my mojo started again!!! Hey, wonder if us similarily affected girls could get a discount? Would be good publicity for them!!!)

Thanks again for your words of wisdom - I knew I could rely on you.

Valkyrie xx