Refused. Chemotherapy

[Salty]

Hi Blobbie
I am HER2 + but also triple positive. I am 64 and like you had a great life. Totally opposed to chemo. I did masses if research and found a way forward if you are HER2+. If this is you then I might have some news. Have they done the predict test for you. This will let you know what % increase you have of living with each treatment. Beware of false statistics too.. A 30% increase in results is not the same as a 30% better chance of life!! If you have chemo it might increase your chance by say 5% if another drug in combination increases it to 7% they can claim a 30% increase....

[BizzyLizzy]

I too have refused Chemo
I also did not take the decision lightly, I read many threads on this forum and have spoken to 6 other women with Breast cancer.
I have ME and a weird neuropathy in my face.
The brutal nature of the Chemo and the affects on my quality if life for what was a small % benefit did not feel worth it to potentially feel so poorly.

[Optimissy64]

Hi Madge63

I have not had chemo, though I would have done so had it been recommended, but I support anyone's choice to either accept or refuse any treatment, provided they have full information as to the pros and cons. The key here is to be sure you are prepared for the consequences of whatever your decision is, and if there is a recurrance due to the high risk you mention in your post, that you are able to face that possibility with no regrets.

I certainly agree about needing to fuel the body properly, whether having treatment or not, and i certainly, post -active treatment, have a very healthy lifestyle and diet to help avoid a recurrance, but I was not deemed high risk, but still had lumpectomy, radiotherapy, and am taking a hormone tablet daily and know it could still recur. 

I don't think anyone can either support or not support your decision about chemo as it has to be your own decision and not influenced by other people one way or the other. I think we tend to look for other people to confirm our own thoughts (e.g. the smoker who doesn't want to give up who would rather focus on Uncle Joe who smoked 60 a day and lived to 100, than on the statistics about diseases caused by smoking). A random analogy, but you see what I mean. Think it's called cognitive bias.

Anyway, hopefully you will get some helpful responses on here and good luck with whatever you choose. x

[Madge62]

I was very interested in your post. I have also refused chemotherapy as I feel it can create other health problems in the longterm. I was dx as stage 1 grade 3 invasive ductal bc in December. I had lumpectomy in January, hormone therapy started and radiotherapy to commence in 2 weeks. I have received lots of comments from so called friends and colleagues about creating my bucket list and how sorry they are for me. My onco score was 38 and therefore potentially high risk of recurrence, however I still remain positive and belief my decision to refuse chemo is right for me. Has anyone else been in the same situation and can provide support my choice. I strongly believe your body can help itself if given the right fuel to do so.

[storminadcup]

There is a new test to show if chemo is needed - Oncotype DX. Hopefully this will help future generations. x

[Demi49]

My mum's cousin's daughter refused chemo about 10 years ago and instead has followed a very strict organic vegan diet, and she is still well.  I am going to start chemo in a couple of weeks and am very worried about it, but I know I would be petrified of IT coming back if I don't do it.  I can guess how you feel a bit, I absolutely didn't want an implant which I was offered, and opted instead for a reduction which is not a decision on your scale at all, but hope you can understand that I felt I was being very heavily steered in a direction that wasn't right for me.  Whatever path we choose, we all wish one another love and good luck xxxx

[poemsgalore]

Hi Blobbie, 

I'm not going to try and change your mind, and I respect the decision you made. But I thought you might be interested to hear the opposite point of view anyway.

I was 61 when DX with a 3cm Ductal Invasive Carcinoma, Grade 3, Stage 2B, one lymph node affected. I had mastectomy with lymph node biopsy (3 removed). Followed by FEC-T which I found very easy, just a few side effects that they gave me drugs to counteract. I was never sick, never even felt sick, so didn't use the anti sickness tablets they gave me. Apart from one week every cycle, when I felt super tired, I was fine. Surprising as I already had RA, Sjogren's Syndrome, Osteopenia and Bronchiectasis with Pseudomonas colonies in my lungs. I refused Radiotherapy for that reason. But I am taking Anastrazole. I don't have any ill effects from my treatment, 

I have developed Vasculitis, but that might have happened anyway as it is a complication of RA, and can be brought on by the cancer itself.  But I know a lot of people have problems with the treatments and can understand why they consider not having it, and do refuse it.

So to finish, I just want to wish you all the best, and hope all goes well for you.

Poemsgalore xx

[Blobbie]

Hi Catchpole
I don't know about rads but I'm stage 2- I too have tried to live the healthy life. I guess it makes you wonder if it's worth it really. Hope all works out well for you. x

[Blobbie]

Thanks Mr Munch,God bless

[Jenny123]

Hi you are not only one and I did same thing here is my doctor letter Dec 2013 
" she does not accept a course of radiotherapy to the breast but neither does she wish to have a mastectomy. I have expained the breast conserving sugery which not followed by rediotherapy carries a very high risk of local recurrence ( 40%) whcih is reduced to 1% per annum if she has rediotherapy. She is adamant that she will not accept this and I have expained that we are unable to force her to have any treatments that she will not accept ......" here is my doctor letter this year 11 feb "she has been diagnosed with a left breast carcinoma  and had a wide excision and sentinel lymph node biopsy in Jan 2014. After consideration she decide against undergoing any radiotherapy or hormonal treatment. She feels well today with no new problems to report and her general well being is good. On examination there were no new clinical findings and a mammogram from December did not demonstrate any enw abnormalities." this letter is mean so much for me and I read again again.  
Before I had a BC and I already have clear mind and I know my quality life is important and I see some of my friends who did all the treatment, cancer still come back.  I trust my body and  I beleive the human healing power and my body can heal it self if you give body chance. I only have a small cancer I feel is very brutal for me if I lose my breast so I refused. Now I have everyting I want and a good qulity life and also cancer free. My treatment is exercise in the park every day and  cancer do not  like oxygen and stay postive and lots of dance and laugh. 

[catchpole]

Hi Bobbie,#

Ive been grappling with this since i discovered my lymph nodes clear i had a stage 2 stage 3 only cause aggresive but i found it quickly and in easy place. had lumpdectomy and feel fine.  Ive little family, only child, parents dead, my dad made it to 98,  two cousins i dont hear from much.  I do howver have some good friends one in particular who keeps getting upset cause i say i dont want chemo as she says she wants me around for a long time as she cares. which if no family is nice and other friends who only want best for me. My surgeon told me chemo would only give me a 5 per cent more chance of it not coming back, that didnt seem much m ore chance than if i just have rads and pills, Are you having that, and what was your kind of cancer, and stage.  Like you i am worried what chemo can do, having it is no certain way of it not coming back. i read the after effects on here and living alone,although i know my friends would help me, i dread how id feel.Apart from the cancer,for 67 i am very healthy, never smoked, never been overweight, walk for en gland, always eat healhily even more healthily now,planning more exercise classes and have stopped my long term HRT so im putting up my chances anyway.Do i need to put that poison in my body and wreck my immune system and live as a not well person,  Seeing oncologist wed, and will listen but i still feel i dont want chemo,june

[Lucy_BCC]

Hi Blobbie and welcome to the BCC forums

Along with the support you have here, please feel free to call our helpliners for further practical and emotional support on 0808 800 6000 and lines are open 9-5 weekdays and 10-2 Saturdays

Here's a link to further support ideas from BCC which you may find helpful:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

[MrMunch1]

Hi Blobbie,

You sound like a strong and desicive woman so good on you for making your decision.  

Lots of us have a difficult decision to make, and it is very personal, how can anybody not respect that decision?

I can't offer your support in the sense that you would like, as I did not refuse and it didn't even cross my mind, but would never try to change your mind and think that you have clearly given it a lot of thought.

Hugs for you.

Su

XX

[Blobbie]

I have refused chemotherapy - it is not a decision I reached lightly.I made an advanced decision a couple of years ago to the effect that I would never have it. The main reasons are that I don't want the possible horrific long term or even permanent side effects. I feel chemotherapy will impair the quality of my life so much and that's what I believe in the quality of life not the quantity. I'm prepared to take my chances. I have no family or friends and I've had a good life. I'm 58 now. I truly feel that chemotherapy is barbaric and inhumane. It beggars belief that all the money spent on research and there is still no decent treatment for cancer. I'd like to hear from anyone in a similar position and what there reasons are. What I DO NOT want is anyone posting trying to change my mind - it won't happen I've made my decision and it is final. Kindly respect that,thank you.