should I give up on hormone therapy?

Another difficult decision and I’m wondering what other ladies think? I had a grade 2 relatively small tumour with no tested nodes affected but which had invaded blood vessels. It was 8/8 oestrogen positive and 8/8 progesterone +ve. I had a mastectomy, chemotherapy but no radiotherapy.

I started Tamoxifen 4 months ago but in those 4 months I’ve really struggled with rashes on my hands, neck and face. At night or if my hands/neck were hot they would swell and itch intensely, so I haven’t had much sleep. It wasn’t releived with antihistamines and my GP and Consultant have advised me to stop taking the Tamoxifen as this appears to be an allergic sensitivity to Tamoxifen.

I’m just 50 and was having periods, but they stopped during chemotherapy. The consultant says he needs 2 clear years of no periods before I could try Anastrozole as an alternative to Tamoxifen and so I would need Zoladex injections into my stomach once a month for two years to shut down my ovaries, then I could use Anastrosole while this was happening.

He’s explained what the side effects are likely to be; severe menopausal symptoms, aches in joints and a risk of osteoporosis…oh and possibly more rashes!

I’m really tiny so the osteoporosis risk worries me. I had a really dreadful time with chemotherapy…severe sickness which was so bad they had to stop the last cycle of it.

I feel that these systemic treatments swamp my system…I only weigh 7 and a half stone but the dose of 20mg Tamoxifen is given to all women despite their size.

Since coming off Tamoxifen 3 weeks ago, the rash has faded, I can sleep and I’m feeling wonderful for the first time in months.

What are your thoughts? I have to make a decision about further treatment and I don’t know what to do. If anyone has been in a similar dilemma or has an opinion I’d be greatful to hear.

Hi Hearty

 

I’m so sorry you are having to make this decision. I have been on Tamoxifen for 5 months and although I have suffered side effects, they are nothing compared to what you seem to be going through.

 

It is such a personal decision with so many things to take into account. My main advice would be to make sure that you are comfortable with whatever you decide and that YOU make the decision, don’t be pushed into something.

 

Much love and hugs xx

Hi Hearty

Along with seeking support here please feel free to call our helpliners to talk your options over, lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000

Take care
Lucy BCC

Hi

I have a similar problem. I can’t take tamoxifen due to a previous blood clot. If it were just tablets I would give them a try. Some people get the side effects some don’t but I worry about the injections. It’s in your system for 28 days.  

 

So I too would appreciate hearing from others on this treatment. My surgeon gave the impression that sometimes for some people the costs outway the benefit.  

 

But we have to live with the decisions we make.

 

good luck

 

keeks

 

Hi

I have a similar problem. I can’t take tamoxifen due to a previous blood clot. If it were just tablets I would give them a try. Some people get the side effects some don’t but I worry about the injections. It’s in your system for 28 days.  

 

So I too would appreciate hearing from others on this treatment. My surgeon gave the impression that sometimes for some people the costs outway the benefit.  

 

But we have to live with the decisions we make.

 

good luck

 

keeks

 

I have to decide on the 4th.

it’s not easy.

let me know what info you find

 

Keeks

 

It could also be worth asking your oncologist to use the Predict tool to work out your percentage risk with and without tamoxifen - this may help.

 

I suffered from terrible aching joints, mainly wrists and knees, on the wockhardt brand but by chance my chemist got Teva in and these have been MUCH better so hoping to have these from now on - it’s deinitely worth a try.

 

Lu x

Hi

 

My menopausal status was uncertain when they were deciding whether to put me onto Tamoxifen or Letrozole at the age of 47.  I hadn’t had periods for some years as I’d had a contraceptive implant.  My periods didn’t return when the implant was removed when I was diagnosed but that was still not conclusive because chemo mucks up your system anyway.

 

My oncologist assumed I was pre-menopausal purely based on my age and prescribed Tamoxifen.  I insisted on a blood test to determine FSH level.  This was a simple way of finding out the answer.  Lo and behold FSH levels showed that AI was more appropriate so that’s what I was prescribed.

 

Good luck to you Hearty, whatever you decide.  Just might be asking if a FSH blood test might be useful in your circumstances. 

Thanks skinnyminx…yes oncologist is sending me for a hormone test and a bone density scan. Plenty to churn over before decision day on April 3rd.

Very interested to hear Hearty’s comments on dosage of hormone therapy.  

I too am small, 4ft 11ins tall, weighing 8st.  

When I asked one of the many doctors I have seen (no continuity of treatment) why have this one size fits all approach? he replied, in a ‘we know best’ tone that the drug researchers have found the lowest dosage to get the required result.  Lowest dose for who?  a post-menopausal woman weighing 12st and 5ft 6in tall with high levels of female hormones still in her system?

I reduced my dosage by half for a week as I was feeling so bad on Anastrozole; the doctor laughed and said he doubted that half a dose would do anything.   It may have been just right for me, the unpleasant side effects were lessening.

There should be a FSH test carried out to determine what is still residual.  For all I know I may be using a sledge hammer to crack a peanut.  My body is certainly not happy with the Letrozole I’m using. Nor was it happy on Anastrozole.

I’m all for titulation of the required dose to suit the individual.

Thankyou all for your concern. The biopsy luckily showed no cancer cells in the new lump. The longer this goes on , the less inclined I feel to take any more drugs as I can feel my body feeling like its old self again and it is blissful to be sleeping and eating so well again. It takes ages to get the different appointments to sort out the hormone therapy quandry and bone problems and as time goes on I’m glad to be this removed from it all. It makes me beleive I can at last try to move on

Very apt for me today as I’m contemplating the same…

I was diagnosed Grade three, 1.6cm , stage 2 BC in 2007, surgery chemo radio, the whole shebang.  Had a clot when I was on Chemo so no Tamoxifen for me!!!  Was on Arimidex and Zoladex for 5 years (was 38 at diagnosis). Didn’t have any real side effects. 

In the meantime I had moved to another part of the country where the docs, in their wisdom, decided that I could have tamoxifen…and promptly got a DVT (which was misdiagnosed for 3 weeks…don’t get me started on that!!).  Anyway, was then put back onto Arimidex and Zoladex for a further 5 years.  I’ve not been happy with the whole process, but to make matters worse I have now started losing my hair…big clumps (have always had thick blonde hair, was my pride and joy),  I have also swung back into weight gain, muscle pains, hot sweats, day and night, moody, flaking nails…the list goes on!

So this morning I have been seriously pondering how much benefit I am gaining from being on these drugs for another 4 years…against my quality of life which to me is being eroded by these SE’s.

Anyone else been here?  The hair loss is really p******g me off (sorry for the language but I think I’ve reached my final straw).  i  know I should be grateful I’m still here and I am, but sometimes the “gift that just keeps on giving” is just too much.

Hi Hearty

 

when I went to my oncology appointment on 4th April I was still very undecided. But I didn’t get the oncologist I got the registrar.  He was very thorough but my partner said it sounded like he was reading a book in his head. We covered my rads then I launched in with my questions and concerns about hormone treatment, poor thing I think I freaked him out a little.

 

Any how I got him to run all my numbers and show me the stats for my cancer with and without hormone treatment. It was all very fast and in the end he had to bring in the oncologist who said fine to delay the decision until rads finishec and walked out.

 

now I can’t understand my notes and have forgotten what my abbreviations even mean. So I’m still not sure if I’m going to take them. He said I was still young (51 he looked about 12) and had years ahead of me and I said I refuse to live the next five years in misery. 

 

So I am still no closer to a decision either, ask for the figures it might help you decide.

 

take care

 

Keeks

Thank you very much for your post Tink

 

I’m very sorry to hear your news. 

 

You’re right we have all failed the percentage test once or twice already. There are no easy decisions in this.

 

Take care

 

Keeks

No Tink you didn’t upset me.

 

Every percent in all the figures is a real woman. 

 

It’s not just a number.

 

I want to be reminded of that . I am sorry you were that one percent.

 

Take care

 

Keeks

This is still unresolved for me but there are such long gaps between getting appointments with gp or consultants, they keep cancelling them. If I ask any other professional thet just say"you need to discuss this with your consultant"
Friends and relatives don’t want to listen to my dilemma any more as I appear totally well now.I feel on my own with this as I realise there is no right answer and no firm facts. I feel I may as well flip a coin
I feel for all the lovely ladies who have shared their thoughts.
I have a final appointment on may 22nd when I’ll probably not want to start the anastrozole because of my fear of side effects and not wanting the side effects of biophosphonates either. I hate feeling swamped by drugs.
But really I just don’t know.

I’m feeling the same, I’m totally alone making this decision but that’s how it should be I suppose,  it’s my life.

 

I have delayed starting until my rads are finished, then Im taking it one SE at a time.  One friend of mine had almost no SE so I know it’s possible. 

 

We have to live with the decisions we make without worrying about it. It’s not easy.

 

take care all

 

Keeks

Hiya, me again,

 

Thoughts and hugs go out to all those who have posted on this thread (and elsewhere now you come to mention it :smileyembarrassed:)

 

Just thought I’d put an update on about my decision, which is for now to carry on with the arimidex.  I’m 7 years post diagnosis now and up til now and the murderous thoughts and more worryingly the hair thinning I’ve done quite well…limited bone pains, hot flushes etc.

 

I guess I’ve got away quite lightly compared to some so, even though I’d not been able to contact my BC nurse or my consultant, I’ve decided I will carry on with the little pills of poison for another couple of years.

 

Another couple of years “safety net” and I might be brave enough to stop, but for now I’ll deal with the hair loss (found a shampoo that says it will help !!) and wax the moustache thats growing…keep hitting the gym and WW to keep the fat at bay and just try and cope with the homicidal tendencies lol!!

 

Hugs

Wendy

As of Easter I have stopped taking the Aromatase Inhibitors. The side effects were so debilitating they were making normal life very difficult.

Letrozole was giving me muscle weakness in my upper arms; so bad that I couldn’t knit more than two rows before having to stop.  I love knitting so that was very distressing. I also sing with a big band and found that holding the microphone was becoming more and more difficult. It weighed a ton!  Just a couple of the delightful side effects, there were many others even on half a tablet.

Having weighed up the pros & cons with my oncologist I’ve decided that quality of life is more important.  So for now I’m trying to get the stuff out of my system. Apparently it can take four to six weeks to get rid of it.

Might try again on half a tablet but I suspect it will be the same story.

 

The oncologist did sympathise with the dosage problem i.e. why a small eight stone woman gets the same dose as a large twelve stone one.  He didn’t think I was crazy to try half a tablet especially as there were still side effects so something must have been happening!

I’ve only been on Arimidex since being diagnosed on Tuesday and the leaflet’s list of side effects sounded grim. I’ve been put on it because my consultant said an ongoing study seemed to point to it being helpful although it would take another 5 years to reach firm conclusions. I’m waiting for an MRI scan and will have my op on 15th June, when they should be able to say whether my bc is hormone influenced.

 

Having read this thread it obviously has been very grim for some of you. So sorry to read that and hope when you’ve made decisions your bodies will feel much better for that.

 

I was also told I may have to go on biphosphonates as well soon because of bone thinning effects of the arimidex. I took fosamax for 5 years without problems because of osteoporosis and came off then as that was the advice at that time.

 

Thanks for all your posts - not easy reading, but very helpful to know what may lie ahead for me - I believe in being prepared! Take care of yourselves everyone.