The Right to Refuse Tamoxifen

I was prescribed Tamoxifen.  After a year of taking Anastrazole (on and off). I do have osteoporosis diagnosed after dexa scan prior to starting Anastrozole.  In September I had a stress fracture in my tibia....while walking!  So I stopped taking Anastrozole....which the Oncologist accepted. A couple of days later he called me back to say he had prescribed me Tamoxifen.....better for your bones...really?

I tried to discuss my concerns with BCN, she advised me to chat with my GP, a concept which is laughable....I've tried!!! So I just don't take it....I  am 72 and have enough aches and pains. It is a personal choice, and if you have had cancer once, I think you will always have a concern it will come back.  Good luck to all x

This is very interesting. Thank you for sharing. I understand your frustration. I am on Tamoxifen. I have just been put on a break.The first few months have been difficult. The Junior Oncologist i saw said her boss would likely offer an AI & ovarian suppression instead (I am in my 30's), I remarked 'isn't that much worse then Tamoxifen?' and she said 'they're all horrible drugs'. I appreciated her candour at least. but i'm going to try and trial & error the Tamoxifen to make it work better. It is an important tool in my arsenal when i look at my own position.

I understand your feeling given how little value it adds to your chances. I felt the same with Kadcyla. I was put on it unexpectedly last Christmas. When i started getting major issues and reading up on it, i found out there was a 90% chance that would always have been my plan after surgery - i think the oncologist should have prepared me for that. After surgery i was just expecting Herceptin, and had told work id come back and the kids we'd go to Disneyland. But then this so called 'easy chemo' Kadcyla totally destroyed me. The oncologist wouldn't talk to me for 5 months, every appointment got thrown on her nurse, who could not answer my questions about how much better kadcyla was for me then Herceptin... when i did talk to the oncologist she just parroted the 12% line, which is the absolute maximum it is for anyone. I fired her and got a new oncoologist who did the maths quickly and said it was less then 2 percent better for me. So all the damage had been for very litle. I later met a lady in a wheelchair from neuropathy, who said hers was only 1 per cent better but she was still doing it for that extra 1%. So we're all different in what we prioritise. But im glad you advocated for yourself, and made your own informed choice. I really think the communication is woefully lacking.

At the end of March I had a mastectomy for what turned out to be 10mm stage one invasive ductal cancer with 65mm DCIS. Two weeks after the mastectomy I was doing 5 mile walks on the local hills. 6 weeks after the op, mid May, I was walking the Lakeland Fells and feeling great.

However at the end end of the April I had been prescribed Letrozole. By mid June I was starting to struggle to cope with the side effects. By mid August my feet were hurting so much, some days I couldn't stand. I felt as though I had aged over 20 years. In fact my 90 year old mother was fitter than me.

I hadn't seen or spoken to my consultant since the end of April! At the end of August the BCN said that I could have a 4 week holiday from Letrozole. Within days I felt so much better.

The oncologist has since said that I receive a "fairly small" benefit from the Letrozole. He finally agreed that I could stop taking it. Despite asking for my stats, haven't been given any numbers.

All in all, I feel so much better without the tablets and without the stress caused by the thought  of taking them for the next 10 years. I'm 67 and want to be as active as I can in the future instead of being crippled by the tablets.

I have been taking tamoxifen for three years. After a couple of weeks all side effects were gone. I do notice them flaring up with one or two particular brands, but I’m happy to take a pill if there is just the smallest change of a better outlook because of it, 

I know that's true. Life is harder with them but better than getting a recurrence. It's about being able to have an open discussion. They don't seem to be fully conversant of all the many side effects. Maybe it's because they are over worked and dealing with cancer patients all the time is hard. My first Oncologist said don't get hung up on brands. I wonder if they get perks from drug companies? I worked in health all my life and Gps used to get all kinds of freebies from reps. 

Glad you are feeling better.  Can I ask why 10 years of aromatase inhibitors.  There is a test called the breast cancer index that you can get after 5 years of taking either tamoxifen or AI’s and it lets you know if you benefit from the extra time in the drugs.  
I wonder why he didn’t offer you another AI to try.  
Well you are living a healthy lifestyle and that certainly is a plus snd wish you a long active life.  I just turned 75 and am an avid cyclist and can’t sit still for long.  I take Anastrazole and do pretty well on it so am thankful.  5 years for me and I have been on it 1 1/2 years.  
All our bodies react differently snd if the misery and lack of a good quality of life is too much then time to reassess.

Barbara

Hopeful Barb. Thank goodness for your reply! I've been really worried about anastrozole which I'm about to be prescribed.

You have given me some hope that I could be fairly OK while taking it. 

I also worry because of my family history where my parents suffered with some serious health issues as they became older.

I am 70 early next year.

PMR

Hello PMR,  I know what you mean about being concerned about Anastrazole.  I felt the same as it seems all you hear are all the bad things.  I tried to be positive and for me the worst issue is dry mouth at night for which I use xyli melts and use a prescription fluoride toothpaste.  The Doctors always mention the muscle and joint issues but other than occasional discomfort in my thighs I am good.  I cycle anyway and do believe exercise really helps.  Another thing the Doctors don’t bring up much are the loss of libido and vaginal dryness.  I use a vaginal suppository of hyaluronic acid every 3 days for the dryness and it really helps.  That loss of estrogen is not easy but has been doable. I heard that sea buckthorn oil is suppose to help moisturize the vaginal tissues but don’t know too much about the supplement so need to review before I start taking it and check with my medical oncologist.  Good luck and for me taking the Anastrazole is hopefully the end of my breast cancer saga.  Whoopie!!

Barbara

Thankyou!

Up to now I've taken a copy report from hospital to the doctor's but have heard nothing else. The report also requested they arrange a bone scan.

Not sure when I'll get the prescription. I've got an initial appointment about radiotherapy at the end of December.

I don't think I have a named health worker up to now if I run into probs. I need to read through the pack they've given me though.

Best Wishes. Good to hear people do cope! 

Hi angrylady ,

I totally agree that it is your right to refuse a treatment and I am shocked at how you were treated when you stated your decision to not take Tamoxifen. It is definitely not right ever to bully someone else, especially not in a medical context.

However, I don't agree with some of the statements and scare-mongering in your post.

For the sake of other ladies here who are starting a Tamoxifen treatment, I would like to mention that Tamoxifen has been around since the 1970s and has been shown to significantly reduce the risk of recurrence in certain types of breast cancer. Yes, there are some side effects but each patient is evaluated to see if the risks outweigh the benefits. The treatment is proposed only where the benefits are greater than the risks. Interpreting the statistics is complicated. It is best to discuss the statistics with your doctor and to get help with any side effects if necessary.

Your statement that "No proper research has been done into the side effects of the hormone blockers and whether they really are worth taking as a result. " is quite simply not true. There are many years of research that prove that the risk of recurrence is lowered when the treatment is followed.

The "woman in Oncology" who told you that women often discontinue their treatment is sadly right. After a while we feel much better, maybe forget a tablet or two and then start thinking, hey maybe I don't need this anymore. People just don't like being dependent on medication especially long term medication whether it's for cancer, diabetes or even cardiac problems. But this doesn't mean that it is in our best interest to refuse or discontinue treatment.

I finished 10 years of Tamoxifen last year. I am now 12 years post breast cancer diagnosis. I had two tumours and four lymph nodes that were massively impacted. The prognosis was not good for me but I am still here and healthy. Ten years of hot flushes was no fun but I'd happily take it for another ten years if I had to. Chemotherapy was much, much worse.

I wish you well and hope your recovery post surgery continues to go well.

Miranda