Is ovary removal & Arimidex better than Tamoxifen

Hi, I’m on the brink of starting Tamoxifen, as recommended by onc, (age 39), but wondering if ovary removal and Armidex is better option? So many issues - survival rates, lifestyle, side affect problems (sex life, etc) to consider, dont know what to think. Have heard about increased risk of womb cancer on Tamoxifen and this really scares me. Yet to discuss with onc, but would be grateful to hear if anyone chose this option when premenopausal.

Thanks

Janice

Hi Janice

I asked my Onc the same question as I was put on tamoxifen after starting herceptin and apparently a lot of posts were reporting that they didn’t like each other. My Onc is very straight and very blunt, her reply was, that if I wanted to be chemically castrated then so be it, but it carried far more side effects and unknowns and she strongly was against it. Personally I know its not all on costs as she got me taxotere chemo and herceptin 6 months prior to NICE approval from a HA that was being taken to court by loads of women.

As you say you are still to go through it with your Onc, I have seen my Onc so many times that I really have put all my trust in her, I would rally recommend you list all worries and talk them through with your Onc.

Debbie X

Hi Janice,

I have read that the best option is Tamoxifen for two or three years, followed by Arimidex for the balance of five years. For that you would need to be menopausal by the start of the Arimidex. This is what my onc is planning for me. I have just started Tamoxifen, but am a bit older than you, at 45, and am therefore hoping to be properly menopausal in two or three years time. The chemotherapy knocked out my periods so I’m hoping they don’t come back.

Hi Janice

I am faced with the same dilemma. My periods have come back after 20 months !! I am 44 and they stopped after chemo but came back last week. I am off to see onc this afternoon as I want my ovaries out but having spoken to him on phone he said its far too drastic and tamoxifen will do the job anyway.

I am worried though because mine was highly oestrogen positive and I dont like the idea of all that oestrogen comig back… I cant believe they are back after so long. I had a pelvic scan lst week and all was fine but I was told I am not menopausal despite having every symptom going!!

I will let you know what onc says this afternnon.

Love Alise

hi all
i’ve been reading these comments with interest… i will face this decision after i have i have rads in the new year. i had this initial instinct that i should go for ovary removal and arimidex straightaway. however, one of very nice and impressive oncs at my hospital said she thought that this was very hard road - hard on the body when it has been so through so much anyway. she seemed to be suggesting the route roadrunner is going to take. and because i rcan see her point and really like and respect her this has made me think a bit differently about it. i have a meeting arranged with the lead oncologist after rads to make a final decision…alise, hope your meeting goes well and will be really interested to see what your onc says…
jo
xxx

Hmmm. So, how do we know whether we are ‘really’ menopausal, or just suffering menopausal symptoms because of the drugs? I thought that taking tamoxifen pushed the body over into the real menopause, but am I misunderstanding things here? I’m nearly 43, and think perhaps I need to know this …

Cheers. Stockbeck

Stockbeck
talk to your doctors about this - there are well established blood tests which they use to determine how menopausal you are.
Jo
xx

I’m in the same position, pre-menopausal, Her2+, and 8/8 for both hormones. I think it is the later that makes my Onc want the ovaries out. Her Senior Reg was very defensive of Tamoxifen and its track record and didn’t see it as a poorer alternative for the Her2+s. Maybe they’ll do the op and put me back on tamoxifen for a couple of years?
(I should be asking the Onc tomorrow, but as the b…y hospital didn’t book a follow up ECG, I’ve cancelled the appointment until I’ve had it.)

I think there are alot of us on here asking the same questions as they come up time and time again.
I dont feel that i ever get any clear and definate answers from my oncologist, and i dont honestly think they know what is best for us.
At the beginning of tamoxifen July 2006, after chemo she said it was drastic to have my ovaries removed and tamoxifen would work fine.
I havent had a period since Feb 2006 after second chemo but i am still not classed as menopausal. I am 46. I have asked for a blood test which Jo mentions and its been refused as apparently tamoxifen can give a ‘false’ reading.

I saw a gyneoclogist last week about ovary removal as my oncologist suddenly said it would be seen as part of my over all treatment to have this done and then i could go on arimidex which is suppose to be better than tamoxifen. This is different advice than she gave last July.

I have decided to leave it for 6 months by which time i will have been on tamoxifen for nearly 2 yrs and i did read something about studies that had been done which said 2 yrs tamoxifen then onto arimidex gives a better over all survival. If anyone has that article i would be very grateful for it.

Saying all this i have 2 friends one was pre-menopausal at DX the other one post and both had 5 years of tamoxifen and are still here 7ys and 8yrs on. Only hope we are as lucky.

I would be devastated if my periods came back blimey after these hot flushes surely they can’t!!

Rx

Sadly they can Ruth!!! I hot flushed for England for 20 months and then lo and behold they came back!!! Nightmare! I will see what onc says this afternoon.

Alise x

Alise,

Are you saying that we can go through the menopause twice? Bl**dy H*ll!

Liverbird,

There are lots of articles about Tamoxifen v Aromatase Inhibitors, but here’s a link to one of them:

natlbcc.org/bin/index.asp?strid=721&depid=9&btnid=2

RoadRunner
thanks for that link, its very easy to read and most informative. I definately am going to have my ovaries removed in 6 months and change to the aromatase Inhibitors if i am still clear of any secondaries. Obviously all these damn drugs have side affects and the Aroma ones are very much still in a trial period.
Rx

Hi All

Am back from onc! Basically he recommended that I do not have my ovaries removed but stick with tamoxifen. He said at my age 44 and given that I am supposedly low risk then it is totally unecessary as there is nothing to prove it is any better than tamoxifen and the side effects are apparently quite harsh. He mentioned problems with bone density etc etc.

He said he would only ever recommend it in women under 40 whom he considered at a high risk of a recurrence.

I went on to ask him if I should have zoladex but the answer was the same.

Apparently I have never been menopausal despite not having a period for 20 months - my ovaries were simply wiped out by the chemo but have come back. It happens in 30% of people my age apparently. He said that I am however perimenopausal and the tamoxifen is all I need.

I started going on about all the oestrogen going round but he said the tamoxifen sorts it out. The bottom line was I could have zoladex if I want but only for psychological reasons as in my own circumstances it would not offer any benefit over tamoxifen.

I came out no further forward really. I still worry about the oestrogen .

I may try the zoladex but dont want a whole load of side effects for no clinical gain.

The whole thnig just drives me mad. You’re damed if you do and damned if you don’t.

I’m off for some wine.

Love to all

Alise x

Hi Girls -brief history so you know where I am coming from - I am now 38, was originally diagnosed at 34 had WLE, 6 x FEC, rads, then tamoxifen for 2 years and am now on Exemastane for another 5 years. Originally in Apr 04 was put on Zoladex for 6 months - coped ok with that so had ovaries removed Oct 04 at age 35. This summer was rediagnosed with high grade DCIS and have just had mastectomy with immediate recon.

I was hormone positive first time round and had just suffered a miscarriage before diagnosis so was paranoid about hormones so asked for them to be removed. My periods didn’t stop through chemo - in fact it was the only time in my life I was regular. My onc agreed to this after 6 months of coping ok on Zoladex. Apparantly - but I don’t know where the original facts are on the internet - having ovaries removed in pre-menopausal women is as effective as chemo? I had no problems with ovaries gone - not one hot flush just a few headaches for a few weeks.

Anyway things were fine and then they switched me to Exemastane (bit like Arimadex) and since then the side effects have been different - joints a bit clicky and sex drive has plummeted and sex can be quite painful. I did have some bleeding down below which after a scan is cervical erosion due to lack of oestrogen.

Also my DCIS this summer is hormone negative. Apparantly it has not come back hormone positive due to all the anti hormone treatment I have had - it has mutated (my one brain cell left shut down at this stage and I felt like giving up trying to understand this disease)

I sometimes wonder if it was a knee jerk reaction having ovaries removed because I do have side effects and have to take stuff for my bones - Some days I feel like an old 38 now and am experiencing stuff I shouldn’t have to for 15 years - other days I am really glad they are gone as it takes a lot of the worry away.

My advice girls is if you are not sure go for Zoladex for as long as you can - it has the same results just not permanent. I do think if you are hormone positive something needs to be done about hormone reduction just not sure what is best!!

Hope I haven’t confused anyone and this helps.

Take care

Sarah x x x

Hi everyone

I was 40 when first diagnosed and was on Tamoxifen for nearly 10 years. I went into early menopause at that time and when they switched me from Tamoxifen to Arimidex they checked to see whether I was properly menopausal and the answer was yes. Was on Arimidex for a year and then Exemestane.

It is hard to know what’s the best for you but I think it’s also listening to what your oncologist says as they have all your notes etc to see whether it’s worth having your ovaries removed or not.

Pinkdove
x

Thank you all so much for sharing your experiences, it does go to show how we get different information and still dont know what the answers are. I think I’m closest in diagnosis to you, Alloway and I’d really appreciate to hear what your onc says (you’ll be seeing yours before I see mine). I’ll post back end of November after I’ve gone through the options with onc, see what the latest guidance is and hope it may be of help to share on here.

Thanks again, makes such a difference to hear what its really like from the ones who know!!

Take Care

Janice x

i have come off tamoxifen and been put on zoladex, with my grandmother not going through the menopause till she was 58, and my mother dying at 54 but still having periods (cancer, and obviously hormone receptive!) i have insisted on not going through the menopause twice, i really do think its about time women were not treated as a statistic, and that family illness was taken into account, i recently found out that my estranged sister who is older than me had bc twice, three years apart, really makes me wonder if i’d have been offered different treatment had i known about that at the time of my dx

Alisonxx

Hi Janice,

I’m a bit older than you (47)!

The Breast nurse has to organise an ECG, so you may well see your Onc before I see mine. However I’ll be cross examining her when we do meet and I’ll take notes this time.

Really, I’ve had very little discussion with her about it because the first time she mentioned it she talked about the Gynaes and laparoscopic operations, looked me up and down and said “Hm… they do like you to be thin”.

I’m not thin, but I don’t carry the weight on my stomach - hips, thighs instead.She was reluctant to even refer me because she said she’d had many patients knocked back because of their BMI, in relation to this “elective” operation.

This, of course, made me mad, and I concentrated on getting the referral and not the actual consequences of the operation!

I saw the Gynae last week, very nice man, and he said that while I was on the heavier side, I didn’t carry the weight on my stomach, that the op would be fine and when was I thinking about?

YA, BOO, SUCKS to the ONC.

Obviously I haven’t seen her since then to put that cogent statement forward, but I will enjoy doing so.

(No I won’t, I’ll bottle it.)

So, I’ll be in touch when I have any news and will you do the same?

All the best,

Susanx

Hi all

I agree with Alisoncamera - I will not go through the menopause twice!

I was 35 when I first had hormone positive BC in 2004. Had masectomy, node clearance, 6xFEC rads and tamoxifen. The following year I had reconstruction and prophylactic masectomy on the other side just to be sure. I thought this would be enough to guard against BC ever coming back - oops silly me!

January this year it came back; a reccurrence on the same side under the arm on the bra line. Luckily it hadn’t spread but I still had 8xTaxotere and now Zolodex and Arimidex. I have requested ovary removal early next year as I can’t handle the possibilty of two menopauses; luckily my Onc is great and thinks its a wise move.

I think what Sarah35 says about staying on Zolodex if you’re not sure is good advice but I for me? Take them away. To be honest I’m sick and tired of it all and I want the get the inevitable out of the way asap.

Now I have to find a way to get my libido back…any suggestions??

Hi samb - you’ve obviously had a rubbish year - hope you are ok now? I’m not having much luck with the libido issue at the moment! - wine before can help!!

Do you mind if I ask you a question re prophylactic mastectomy? I am booked in for February 08 and like you thought that this would guard against BC ever coming back. Are you glad you had it done or not? Also this may seen really stupid but how did you know it was back inthe armpit - did you have a lump?

Good luck with the ovary removal next year - the op is simple compared with everything else you have been through - I was in and out in a day and just a bit sore for a week. I think when you have made your mind up yuo just want it done.

Take care

Sarah x x x