Anyone refused hormone therapy?

Had Grade 1 invasive DCIS which was successfully operated on in February, with 5 lymph nodes removed, all clear. Met with Oncologist who is pleased with results and will probably have 3 weeks of radiotherapy. I’m ER/PR+. He has given me a prescription for Tamoxifen even though he has told me it will only improve my life expectancy by 0.9% over 10 years. Having read all the side effects I’m wondering whether to take it.

No breast cancer in family, however all medical problems are mainly joints, arthritis, clinical depression and death from thrombosis. Which seems to sum up the list of side effects!

I’m about 2 stone overweight put on since I reached my 50s, I’m now 54. We discussed oestrogen in the fat cells and he agreed that it would be a good idea to lose the weight.

Has anyone else with a lower graded cancer just concentrated on improving their diet and lifestyle without taking the medication recommended?

Hi lulu, dx in nov 08 grade 2 ductal, no lymph node involvement or vascular involvement. had a lumpectomy in dec and just finished 15 rads. took tamoxifen for a month and had bad side effects,including lower abdominal pain, blinding headaches,and palpitations, Have already got an enlarged uterus and fibroids which have not caused any problems so far. did research on tamoxifen and decided that I didn’t want further gyne problems and as my prognosis is excellent anyway, came off the tamoxifen. Am taking the bristol cancer suggestions for supplements and their recommendations for dietary changes. Have always been into holistic therapies anyway and have decided to take my chances and do what I can to make changes. It is a personal choice of course, and you will see on this site that many people have little or few side effects with taking tamoxofen.
One of the problems I find is the medical profession often don’t give us informed choices. I was told that I was going on tamoxifen…no discussions or risks etc… I found on researching the drug, that 37% of women stop taking the drug because of severe side effects.
If you want to pm me, I’d be happy to talk more
Best wishes
Leadie

thanks leadie sending you a PM

Hi lulu
Similar to Leadie in terms of dx and reasons for not taking tamoxifen. Dx a year earlier in Nov 07 grade 2 lobular, no lymph node involvement, tried tamoxifen for 12 days and gave up. In my case the benefit would be 2.4% and for me personally I didn’t think it was worth it.
Again happy to talk futher if you wish to in a pm.
M x

Hi Lulu, yes I refused hormone therapy and radiotherapy after researching them because of the side effects and the permanent damage they both do.

Tamoxifen has been around for over 25 years and yet its use is still very much debated. Two studies done, a 5 year one in UK (1992) and a 9 year one in Italy (1998) showed no difference in cancer incidence between a placebo or the real thing. Yes in some woman it may slow the rate of recurrence for a few years but in the long term it does more harm than good - Blood clots, hot flushes, night sweats, damaged eye sight and of course uterine cancer to name a few.

Radiotherapy reduces death from breast cancer by 13.2% but increases death from other causes, mostly radiation induced heart disease by 21.2% so you need to think about that treatment also.

If you dig deep enough (like I have and continue to do) you will find just how the figures are manipulated to justify these drugs being on the market - shocking stuff but the truth is its better to be seen doing something for the patient rather than nothing - even if all us lovely ladies suffer permanent damage along the way.

Leadie and Magsi- I know you are with me on this - thanks for your support!

Clarabelle

“Radiotherapy reduces death from breast cancer by 13.2% but increases death from other causes, mostly radiation induced heart disease by 21.2% so you need to think about that treatment also.”

clarabelle - where did you find this piece of information ? Its not something I have ever heard.

Catherine

Catherine - The British Medical Journal - The Lancet - paste my comments into Google for more info…
Clarabelle

I too have never heard this.Everyone is different and we all make our own decision .But for myself I put my trust in my oncologist prof Yarnold of the marsden in sutton.whatever he advises I do lol.I never question him as far as I am concerned he is the expert and is doing everything he can to keep the cancer away.

best wishes mell

If there was a high risk of potential long term damage from rads, would they not warn of it on the consent form? The risks on my form only mentioned skin soreness and fatigue!! As with any medication, even a paracetamol, there is always possible side effects or permanent damage, but I suppose you have to decide whether what you gain from it outweighs this. I have not heard of anyone having suffered heart disease through rads, but I suppose there will always be the odd unlucky one that will slip through the net.

In my mind, not having Radiotherapy does not gurantee that I won’t get heart disease or anything else which could occur in the future, but is hopefully zapping any dormant cancer cells left lurking around.

It’s all a very individual personal choice, for me I’ll stick with my Prof. who I have no doubt is doing everything he can to ensure I’m around for my kids as long as possible.

Thanks clarabelle. It hadn’t actually occurred to me not to have radiotherapy. I’ll find out tomorrow how many weeks it will be for but I should assume with my Grade 1 cancer, just over 1cm. that it will be for 3 weeks. I will also need to ask about the statistics for a longer life.

I think in my particular case, Tamoxifen isn’t going to make much of a difference to me. I’d prefer to concentrate on improving my diet and weight.

moonshine you should have been made aware of all and any possible side effects before any treatment was started but it seems to me that in a lot of cases the patient is the last to know unless they go out of their way to educate themselves. I for one dont accept any treatments or take any drugs without researching them first and then going back to my Oncologust with a list of questions I want answering - the best one is to ask him/her whether they would give their wife/husband the same treatment - that usually gets you an honest opinion!

As for not hearing about anyone who has suffered heart problems from rads, I had a family member diagnosed the same time as me who died during a Radiotherapy session she should never have been having as she had a heart condition already - the rads caused her to have a fatal heart attack.

lulu650 ask the question whether radiotherapy is vital in your case as I suspect it is not given that you were diagnosed with DCIS and not an invasive cancer.

Clarabelle

Hi Ladies

I was diagnosed with DCIS and pagets (nipple cancer) this time last year. I had a mastectomy and delayed recon. Nodes, of course were clear. My ER/PR results were neutral, but my surgeon said that she was willing to give me Tamoxifen if I wanted it - or to at least give it a try, because I was ‘young’ There is no bc history in my family - and indeed it was a shock to all of my sisters and Mother.

Therefore, I dont know what caused mine - probably never will.

I have been taking it since last July, and apart from watery heavy periods, Im ok. Havent gained much weight, and what I have gained is probably related to what I have been eating, and less exercise.

I wanted to maximise my chances… I dont know what caused it, but will try anything to stop it coming back.

Lisa

Lulu

To back to your original question regarding diet and exercise. I have and am taking all the treatment as advised. I am on Arimidex but understand I am only slightly hormonal. I am also having Herceptin but been told it only adds an extra 7%.

However I am just coming up to 57 dx Feb 08 with lobular Grade 2, with 6 lymph nodes. I had put on 4 stone since my mid 40s and feel that together with not having children this could well have been a contributory factor.

Just before dx I felt I was on borrowed time regarding weight and unhealthy eating.

Since dx I have lost half a stone which I am keeping off. I must be unique as everyone else seems to put on weight but on taxotere I experienced the awful taste in mouth and got that I couldnt be bothered to cook let alone eat. So I was on reduced eating for about 6 months. Since finishing rads which I thought gave far greater than 13% I have altered diet. Eating less fat, walking at least 30mins a day, drinking green and red bush tea for antioxidants, eating a square of 85% cocoa solid chocolate a day, eating 3 or 4 helpings of green vegetables a week and cutting down on cakes, sweets etc which were my downfall. Havent got back to gym yet. As I have developed lymphoedema and understand any loss in weight makes this easier to control I am trying to do everything I can. I have never smoked and rarely drank alcohol. Neither did I take the pill or HRT. So apart from the weight and lack of children I had no other risk factors. Only time will tell if this is of benefit but as I would also like a reconstruction I feel any reduction in size will be beneficial and help any future health issues.

In fact I do not feel enough help is given about diet at all. Despite Cancer Research saying that losing weight and taking more exercise can make a 50% difference to recurrence. When I was dx I asked the bcn if it would make any difference if I lost weight. She said no. And that was it. How can they as health professionals say that. It is so negative in every way. To lose weight has all sorts of benefits as we know and I think they should be positive and encouraging.

Clarabelle, I am so sorry you lost a family member in such an awful way. I certainly wasn’t aware of these types of risks. I don’t need to ask my Onc. what he would do if it were a family member of his. He is well aware I lost my lovely husband to cancer just over a year ago. He advised me to take everything going, and I have.

I agree more awareness needs to be made regarding these problems, however I do feel that for many these treatments (including hormonals) are life saving and for others can give many extra years.

Clarabelle, I can see why you have such strong views on radiotherapy now. Very sorry to hear about the death of your family member.

Just to make it clear, I had an invasive ductal carcinoma removed, of which there was some low grade DCIS beyond the invasive component. I have to say that’s why I’m keen to have radiotherapy, but I’m going to have a good read up on the link you sent.

Thanks for writing of your experience starfish. I think 7% is quite a high advantage for taking Herceptin. My consultant is quite clear that taking weight off is good for reducing the amount of oestrogen from fat cells. I tend to use the BCNs as support rather than a source of medical expertise, as lovely as they are.

Thanks very much for all the comments here. To think that 2 months ago I knew barely anything about Breast Cancer!!

Dear all on this thread. I took myself off tamoxifen after one month because of ghastly sied effects, as I said in another message.
Have been to see a medical herbalist today who is treating my hormone imbalance, I was very impressed with her knowledge and expertise.
Some of the herbs they use are very old and have been used for centuries to treat various ailments.
I came away with a concoction of herbs.She has been treating people with cancer for about 20 years and has a lot of success.
Just want to say there are other ways of treating cancer and anyone who is sceptical about conventional medicine, give herbalism a go!!
Best wishes
Leadie

my neice was diagnosed 17/18yrs ago with BC she was one of the first people to have the hickman line and went on to take tamoxifen for a few years she was only 31 with 4 children and she had wonderful treatment at the marsden she has just celebrated her 50th birthday so think long and hard about refusing hormone therapy. Sh was also a big girl that got a bit bigger due to tratment but she is alive and well big or not

I would echo what Marvelle says. I was first diagnosed in 1990 aged 51. Took Tamoxifen and unfortunately it came back 2 years ago. Am now on Arimidex. I do think hormonal treatment works.

Hello Everyone,

I was diagnosed with BC in January 2009 and had op 26/03/09. My onc gave me a prescription for Arimidex but never said anything to me about side effects (I live in Spain and his attitude was “You live in Spain, you speak Spanish”) so I wasn’t able to converse with him.

I have asked that I get a different onc and am still waiting for a reply. I have 1 packet of Arimidex in the bathroom cabinet and will not dream of taking it until I can speak with and completely understand what are the consequences of taking it or not taking it.

I am 60 years old and have arthritis, diabetis, spondylosislolythesis(lower back pain), bad circulation, few hot flushes, bad sleep pattern so I feel pretty lothed to take something which can cause side effects that would only make my present conditions worse.

Incidently I do speak spanish and am able to get by with day to day living, but sonmething as serious as post-op cancer treatment is a different thing. Other doctors that I have seen at the hospital have spoken to me in English and because I have understood what they wanted to know I have been able to answer them in Spanish. The onc that I was assigned is arrogant, when I told him that this was my first time in hospital he replied that “is was only a little operation” maybe to him it is an everyday occurrance but to me it was serious.

Still waiting for a new onc and still waiting for my rads to start, it is 7.5 weeks since the op, I am fed up of waiting. Sorry I have no patience!!
Regards to all
Margaret x