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Thinking of refusing hormone therapy due to side effects

17 REPLIES 17
maude
Member

Re: Thinking of refusing hormone therapy due to side effects

Thanks everyone for taking the time to answer my post. It has really helped to read about your experiences and opinions and I am so grateful to you all.

I am going back to the hospital in June and you have given me lots to think about before I go back and discuss it with the consultant.

Good luck to everyone.
Maude xx

Jackson2
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi Maude
At first I hesitated to add my opinion to this post because I would hate to scare anyone into thinking they may develop secondaries. But you know what they say, that hindsight is a wonderful thing, and if I could turn the clock back I would take any drug available to try to prevent any further risk. Side effects from drugs can often get better with time or can be controlled with some other medication.

I stopped taking Tamoxifen after four and a half years after a bad car accident. At the time I was thrilled that my oncologist thought I should stop. I now have secondaries and I wonder if staying on Tamoxifen longer could have prevented them. Probably not, but who really knows? But my personal opinion is that any side-effects of taking a hormone therapy drug are better than being dx with secondaries.

I have also switched from Arimidex to Exemestane as I was getting terrible problems with my joints. After a couple of months everything settled down and I would now say that I don't feel I have any side effects from Exemestane. Sometimes we need to give our bodies time to adjust to different hormone levels. I do think it is worth waiting a few months to see if symptoms settle down and also worth remembering that there are different hormone therapy drugs to try if you react badly to one.

smiler11
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi everyone, I'm on tamoxifen at moment, eventhough recent blood test showed I'm postmenapausal. Onc says cos of my age, 44, and all treatment we'll start with tamox and poss change in a couple of years. Zippy I'm interested that you say arimidex wasn't working for you anymore cos I'm keen to know if tamoxifen is working for me eventhough I'm postmenopause,if you dont mind me askin how did they know arimidex wasnt working for you?
have a good weekend
Smiler
x

misha
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi Maude,

I do feel for you not getting the support and information you need from your medical team. Just to add my experience...

I had a grade 2 tumour and DCIS in one breast and DCIS is the other. No lymph involvement. After a lot of soul searching I decided to have bilateral mastectomies and immediate recon with implants. I'm a year down the road now and just had second attempt at the recon.

I well remember my appointment 2 weeks after the surgery to get pathology results. The consultant (not the best of communicators in my opinion!) said he had good news for me -I was very lucky and did not need radio of chemo but should "take a tablet". The tablet of course was tamoxifen. I had already read some info and was alarmed by the side effects so I was outraged he would say it was just a tablet. I started asking questions and he looked annoyed that I was questioning him and suggested I have an appointment with the oncology team. I felt I was being fobbed off and left feeling really down when infact the results had been better than I could have hoped.

Anyway, the oncologist gave me stats for 5 year survival. Because I had had bilateral mastectomies and the grade of my tumour my score was 90%. Tamoxifen would increase it by 3-4%. I really didn't think the benefit was worthwhile even if side effects were nil - I felt there were other psychological aspects to this. Taking medication every day for 5 years felt like a long sentence. - every day to be reminded of the cancer. On the other hand some people find taking the medication reassuring in the knowledge they are doing all they can to prevent reoccurence. The oncologist persuaded me to try tamoxifen for a month and then make a decision.

I did get side effects - nausea, skin rash (like eczema) and an overwhelming tiredness and lethargy. I had no motivation to do anything and couldn't face 5 years like that. I was 44 and it made me feel like 94 - I just wasn't ready for that low quality of life.
On the other side – many people find the side effects lessen over time ast the body gets used to the drug.

So, I came off the drug and over a few months got back to reasonable energy levels. I don't regret my decision at all - I felt in a way I was getting back control after being in the hands of the surgeon. I tried to think about how I would feel if I get a reoccurence. It's a diffcult one. For me there is a 6% chance of reoccurence even if I was on tamoxifen.

Doctors are sometimes reluctant to give stats unless you ask them and as others have said they may not be reliable and don't tell you what will happen to you but just the chance. Still, the stats for your situation may help you make a decision.

As others have said the important thing is to make the right decision for you - what you will be able to live with.

Best Wishes

Misha

heatheruk
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi Zippy thats a really interesting post, I am taking Arimedex and I am feeling so angry all the time. I dont do angry but since I have been taking it I feel so agitated. I thought it might be because I have got this infection that is getting me down a bit, but your post makes more sence to me. Would have to go to my breast consultant to get it changed or can my GP change it ? I would love to feel like me again. I am going wig shopping tomorrow, I hope I dont get the anger feeling there I will be trampling all over the wigs lol
Anyway thanks for tha advice

Love Heather

Zippy
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi

I have just switched from arimedex to exemestane and after a year and half on arimedex - exemestane is amazing! i know this is not to do with tamoxifen but wanted to just say that perhaps you should try switchin hormone drug - i had to switch as arimedex stopped workin for me, but ive been on exemestane for 3 weeks now and woohooo i feel back like myself! i have no depression, no anxiety and am sooooo happy even tho i shouldnt be as i have spread to my liver and bones and lungs! but hey ho, at least the hormone drug is amazingly better and i can enjoy my life!!!! 🙂 so perhaps you should could consider changin hormone drug rather than stoppin it???

hope things work out for you xx

Marilynleah
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi,

I gave up on Femara after taking it for 2 weeks. The side effects were immediate and horrendous. I couldn't have existed for 5 years feeling like I did. That was in April 2007. So far I am still NED. It was not a decision taken lightly, but I prefer to take my chance.

Good luck whatever you decide

Marilyn x

leadie
Member

Re: Thinking of refusing hormone therapy due to side effects

Dear Maude, I've read that 37% of women come off tamoxifen because they cannot stand the side effects. I suggest you do your own research and then make an informed choice. my oncologist plucked her statistics out of thin air and you will read on these threads, many many different stats that oncologists tell their patients!!
Don't be pushed into anything because of fear!!
Best wishes Leadie

maude
Member

Re: Thinking of refusing hormone therapy due to side effects

Sorry Sherbert - I called you Sherbet twice!

Maude xx

maude
Member

Re: Thinking of refusing hormone therapy due to side effects

Thanks Anne and Sherbet.

Sherbet, what you said about anxiety being a symptom of the menopause therefore it is reasonable to think that if Tamoxifen brings on menopausal symptoms one of them could be anxiety makes sense and is exactly what I was thinking. The registrar didn't seem to get this and just dismissed it by saying "anxiety isn't a side effect of Tamoxifen".

I didn't take any complementary tablets for the symptoms I was getting on the Tamoxifen because I was not sure what is safe to take. When I started going through the menopause I changed my diet quite drastically to include phyto-oestrogens and I took Menopace which contains soy isoflavones. My symptoms were relieved quite considerably however I have stopped having phyto-oestrogens and taking the Menopace because I read that they "mimic the effect of oestrogen" so I am not sure if they act like oestrogen in a negative way - ie influence the growth of tumours.

The anxiety I was suffering was very debilitating - so bad it made my usually normal blood pressure soar! My gp said he thought I was extremely anxious, not my normal self and advised me to come off the Tamoxifen.

Thanks everyone for letting me "let off steam". It does help, and I value your support.

Love
Maude

sherbert
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi Maude

I'm sorry to hear you had such a negative appointment. When I have gone to follow up appointments the oncologists have always been open minded about side effects and recognize that we all respond slightly differently for me its mainly tiredness and my moods tend to be up and down.
I went to one of the breast cancer cares information days a few months ago which was really informative. There was a doctor from a menopause clinic and she said anxiety is a side effect of the menopause. It therefore makes sense that the meds can have this effect on some of us.
My doctor said that anti- depresants can help some people with the side effects(I haven't tried yet so can't comment but I might go down this route when I increase my hours at work.) Have you tried anything like starflower oil? I think there mainly to help with hot flushes but I'm sure I feel generally better since taking them. I would go to you GP or oncologist and ask what they recommend.
Good luck
Sherbert

AnneS
Member

Re: Thinking of refusing hormone therapy due to side effects

Just found this thread. It's very interesting. Don't feel guilty for moaning Maude. That's what we're all here for! Just wanted to add my experience for what it's worth!
I was put on Tamoxifen in Sep 2003 after my primary diagnosis in Dec 2002 following mastectomy and 6 rounds of FEC chemo. I was also desperate to start a family and 5 years of tamoxifen would have meant I would have been nearly 39 when I completed it so my onc. agreed for me to stay on tamoxifen for just 2 years and then to come off and start a family. I hated being on tamoxifen and had major mood swings,tearfulness and lots of anxiety and thought about coming off completely but I did the 2 years. I then failed to get pregnant and then after a year of trying for a baby I found a tiny lump on my scar and had a primary recurrence. I had a month of radiotherapy but they couldn't confirm they'd got all the tumour with my small op to remove the lump as it was burrowing into muscle so sadly I was diagnosed with secondaries a year last Feb after a routine CT scan with no symptoms. Now I will never know whether me coming off tamoxifen early caused my secondaries or not but now I feel that I should have done the 5 years to be on the safe side. After my radiotherapy for my recurrence the onc. was recommending Arimidex with zoladex injections and I was delaying making my mind up in the hope of still getting pregnant. When I was then diagnosed with secondaries I wanted whatever was recommended and although the arimidex does affect my every day I'd much rather be here with a bit of discomfort than not! Secondaries rather changes your perception! I'm not trying to scare anybody but I think I wasn't really aware of the whole picture. It might be worth asking your onc. about alternative hormonals such as arimidex or femara Maude.
Take care all,
Anne x

maude
Member

Re: Thinking of refusing hormone therapy due to side effects

I meant to put this in my last post.

When I got my results the consultant said "women have a 1 in 10 chance of getting bc - you have now got a 1 in 9 chance. If you take Tamoxifen your risk goes to 1 in 9 1/2". I didn't think it was worth feeling so ill on the Tamoxifen for such a small benefit (but statistics never were my strong point!). My gp agreed with my reasoning, but then again I have read that your gp is not always the best person to give you advice re bc.

Bye for now
Maude

maude
Member

Re: Thinking of refusing hormone therapy due to side effects

Thanks ladies, you have given me a few things to think about. I hadn't realised that having a mastectomy doesn't rule out the cancer returning. Also I didn't realise they could give me some anti anxiety medication. When I was starting to go through the menopause and suffering from anxiety I wasn't offered anything - it was a case of take hrt (which I didn't want to do) or go away and learn to live with it. I changed my diet to include soy isoflavones and started doing some relaxation. That seemed to help but now I am not sure if I should be having a diet high in soy isoflavones - it is all so confusing and you don't know what to do for the best!

I feel worse this week since my consultation at the hospital than I have ever felt since my diagnosis. I was coping really well with everything until now.

Can I just say that I know I was "lucky", the cancer was caught very early and I didn't need any more treatment (apart from hormonal) so I do respect what many of the other ladies who use this site have had to go through and I feel guilty for moaning!

Love
Maude

juliet66
Member

Re: Thinking of refusing hormone therapy due to side effects

Dear Maude,
I too am very sensitive to hormone fluctuations. Some people are.Anxiety and panic attacks are recognised side effects of the menopause. Therefore any drug that simulates menopause or interferes with oestrogen can do the same.

Not everyone experiences anxiety just as not everyone experiences pmt, morning sickness and post natal depression.
See your doctor about anti-anxiety medication and counselling rather than not take your treatment.

I got used to tamoxifen but had to take other medication. After 6 years I had to finish it and started on Zoladex and Femara.
This was horrendour for me. I had extreme panic and hallucinations.
After 3 months my onc took me of them as I was delusional.Again because of extreme sensitivity to hormone fluctuations. My onc had heard of it but not seen such an extreme case. I was having visions of cutting my wrists and abdomen.I also heard voices in my head.
I stopped and the symptoms went away.

However after a year without treatment, feeling psychologically well, I developed secondaries. A big choice.
I am now on the same treatment but with adjusted anti anxiety medication.I know what I had wished that I had done!!

Julie

Guest
Not applicable

Re: Thinking of refusing hormone therapy due to side effects

Hi Maude and heatheruk
Heather, that is so awfull the way your Gp treated you i hope you made a strong complaint about his attitude towards you, think i would proberly change my Gp , hope your doing ok now .
Maude,
Im sorry to hear that you have been suffering with severe anxiety, like heather says ,it could be more to the shock of what youve been through than the Tamoxifen, severe anxiety is not a know side effect of Tamoxifen , though i have heard of a few ladies mension mild anxiety attacks on here before, hopefully others will come along soon and tell you of there expierence.
Ive been on Tamoxifen for 18th mths and luckily have had few side effects thank goodness.
If your blood test comes back that your Post menapausal they will proberly offer you Arimadex or another of the post menopause hormone drugs ,so it would be worth trying these to see if things improve.
Some people do decide not to take Hormone therapy but it is a personal decision and only one you can make, Tamoxifen is the gold standard treatment in helping to prevent a reaccurance though, so please chat with your doctors about the benifits/risks before you make a final decision.
Haveing a Mastectomy does greatly reduce the risk of a reacurrance but unfortuneately doesnt gaurentee it, as its impossibe to remove all breast tissue ,as breast tissue extends to the clavical and underarm area also so while it would reduce your risk it wouldnt eliminate it completely.whereas Hormone therapy is a systemic therapy so acts on the whole body.
Im realy sorry your feeling so awfull , can you see your GP to see if he can offer you some more help/advice?
Hope you can get some answers soon
All the very best
Lindiloo x

heatheruk
Member

Re: Thinking of refusing hormone therapy due to side effects

Hi Maude, sorry your feeling so weepy, do you think sometimes it is just the shock of what we have been through? I had simular experiance to you with a dcotor. What happened was I have an infection in my wound, I had a mastectomy and felt fine, it was after the drains came out the infection came up in my chest, and that was 4 weeks ago, and I am still on antibiotics, and the nurse has to come in every day. What happened to me was, the last back holiday I was on antibiotics, and the hospital told me if the infection hadn't gone down when I had finished my course, I was to go see my GP and get another course. Well I happened to run out at easter weekend, and also on the Saturday a discharge started to come out of my wound. So I rang the emergency dotors explained it to them, and I asked do I just need to get a perscription. So she said no I think you need to see a doctor, anyway off I went to my appointment and the doctor was really nasty to me. I went in he said what do you want, so I told him a bit of what was happening, and he shouted at me "YOU CANT KEEP HAVING ANTIBIOTICS JUST FOR AN INFECTION" so I told him what the hospital had said and about the discharge. The next thing he said let me look at it, so I pulled my top down, and he said of course you will have discharge what do you expect. Well by this time I was starting to get upset, so he barked at me "OK YOU CAN HAVE SOME MORE ANTIBIOTIS BUT YOUR ONLY GETTING THEM FOR 5 DAYS" with that I just picked my perscription and walked out, and when I got outside I just broke down, I cryed like I had never cryed before, hubbys parents where stayinmg for the weekend and she could beleive how much he had upset me. Anyway to cut a long story short I was rushed into hospital the following Tuesday and Had to have antibiotics andministered intravenously.
So Maude what I am trying to say is the docters and nurses dont take into account that we know our how bodys. I am also struggling with the HRT thing at the minute, I have been taking it 3months and I have put on 2 stone, and they say I have got to stay on it, I will be like an elephant next year lol
Anyway Maude try to keep your chin up, we are in this for the long haul so we will do it together.
Take care
Love Heather x

maude
Member

Thinking of refusing hormone therapy due to side effects

Hi everyone

Can any help me either with your own experience or just your opinion please?

Two years ago I started going through the menopause and suffered with severe anxiety. I was starting to feel better last year then after my first routine mammogram I was diagnosed with early breast cancer. I had a mastectomy, the cancer hadn't spread to my lymph nodes and I didn't have to have radiotherapy. They had found a small tumour starting to develop but were certain they had removed it.

I was given Tamoxifen because my cancer was oestrogen receptive. I started taking it last November and by February I had severe anxiety again - in fact I felt exactly as I had two years ago when I started with the menopause. My doctor told me to come off the Tamoxifen for a trial period. I did this 8 weeks ago and started to feel a lot better (still not back to normal but a lot better).

I went for my six month check at the hospital on Monday. I told the registrar about the Tamoxifen. He went off to chat with the consultant then he came back and said "anxiety isn't a side effect of Tamoxifen". That knocked me back a bit because I felt like they weren't taking me seriously. (It was only later I thought Tamoxifen gives you menopausal symptoms and a menopausal symptom for me IS anxiety.) He then said they wanted me to have a blood test to see where I am with the menopause and come back in a few weeks then they would consider a different medication to put me on - or they might put me back on the Tamoxifen! I didn't think it was worth discussing it any more at that appointment so I went for the blood test and I am going back in June.

My dilemma is during my life anything to do with hormones has caused me problems - pmt, post natal depression, the menopause - and I just know that taking any hormone therapy is going to make me feel awful. I feel that I want to refuse any hormone therapy but I am worried about going against their advice and how I would feel if the cancer recurred.

I feel so bad that I want to say that if the hormone therapy is to stop the cancer coming back in the other breast then I would rather have another mastectomy. Then I can be sure it won't come back!

Sorry to go on but I need some help. I have been so weepy and so sorry for myself since my appointment.

Love
Maude