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Refusing treatment!

Community Champion

Re: Refusing treatment!

Ladies I was not in such a fortunate (sounds odd in the context of having cancer at all, but hopefully you know what I mean) position as many of you & got the short straw with a grade 3, HER+ve tumour, which they threw the book at treatment wise.  My instinct on radiotherapy was to run a mile, but I ignored my intuition & forced myself to get on that table. I still feel that I did the wrong thing & wish I had not had it, despite not burning or really having much of a reaction to it at the time.  You must make up your own minds, obviously, but I think in the eye of the storm we are like rabbits in the headlights not knowing what to do for the best.  I had spent the whole time focusing on getting through chemo & didn't really think about the radio until the weekend before.  I wish I had spent more time researching it & thinking calmly. Good luck with your deliberations. xx

Member

Re: Refusing treatment!

Jane,

I always thought that it was a bit odd that diagnosis like us - ie clear margins & no node involvement were treated the same as mastectomy + chemotherapy (radiotherapy wise). Felt a bit of a fraud as, hopefully, we are rather fortunate if you see what I mean. My Oncologist was lovely & great at explaining everything. When I said that I thought 15 was rather excessive - she said that it used to be 25!!. There are ongoing studies about reducing sessions but nothing concrete as yet. Mine was on my left side also which concerned me greatly re future problems re heart & lungs. P!us, met a lovely elderly lady in the waiting room one day at my pre op assessment who was there for her annual mammogram. She had told no one about her diagnosis until her treatment was finished & then said that her son - who is a scientist & sees everything in back and white - was absolutely livid re the Radiotherapy. He said that there are no proven benefits to Radiotherapy whatsoever. When I decided to decline mine, my husband said that he would support me 100% whatever I decided but he was so pleased that I decided not to have it. He thinks ( me also) that in 30 or 40 years time - "they" will say who thought that was a good idea?

 

I'm sorry that I've rabbited on a bit & I'm also sorry if anyone has taken offence at my stance. Obviously tho, if I had needed mastectomy etc then I would have had a different view but, fortunately, I didn't and so one size doesn't fit all xxx wishing you all the best whatever you decide x

Member

Re: Refusing treatment!

Hi Carol. Well, I'm so glad I'm not the only one! I feel the same as you about the low percentage benefit. Your Oncologist sounds lovely and helpful, I only wish mine had been even a little bit like that. My Oncologist said the improvemnet would be 50%, I thought wow, amazing, until my husband pointed out that meant that it was half of 6% ie the 4-6% that you were also quoted, if you see what I mean. She said the only alternative was a mastectomy. When I finally plucked up the courage to say I wanted to put a hold on things until I had thought it through she said I would need to speak to my surgeon about arranging a mastectomy! Ho hum. I'm doing loads of research and so far I still think I will pass on the radiotherapy, but still haven't decided about the tamoxifen yet. xx

Jane

 

Member

Re: Refusing treatment!

Hi Jobey, thanks for replying. I absolutely agree with you and respect everyones individual decision and it's true, refusing treatment isn't necessarily the way to go for everyone. If I had been a lot younger then I think my 'Predict' score would have been a lot different, and if my cancer had been a higher grade, and spread etc then I would have grasped everything with both hands. My difficulty is with the small margin of benfit that treatment would bring. I'm so glad that you didn't have any ill effects and the tablets are suiting you. xx

Jane

Community Champion

Re: Refusing treatment!

Hi, 

I had a 4mm grade 1 tubular cancer , clear margins and nodes, advised was highly unlikely to reacure but they recommended 15 seasons of Radiotheraphy and 5 years of tamoxifen as highly ER + , I gladly took it all as I wanted to know I'd given myself the very best chance of it never coming back, Tamoxifen also helps against another ER receptive cancer developing , I'm 18 months on now with no ill effects and fine on the tablets, I was 46 on diagnosis and want to be here when I'm 96!! I totally respect everyone's decisions but refusing treatment wasn't an option for me Xx 

Member

Re: Refusing treatment!

Angelrainbow,

Hi there - I had the exact same dilemma back in May. I'm 58 & a 0.7 lump was discovered at screening. I had lump removed with clear margins & no lymph node involvement. I was then told that I would need 15 sessions of Radiotherapy + 5 years on Tamoxifen. More or less accepted that but when I met with Oncologist & she explained 1-2% chance of recurrence with Rads + 4-6% without. Doesn't really seem that much of a difference to my unmedical mind.  She also said that it was very unlikely that the cancer would bother me again. She gave me 2 weeks to think about it & said come back with your decision or any further questions. To cut a long story shorter - I went back 2 weeks later and declined the offer of Radiotherapy. To me, 15 sessions seemed rather excessive - if it had been 4 or 5, I might have considered it. One size does not fit all, I think. Oncologist said she would write to my surgeon re my decision and that she was happy about it & advised me to take the Tamoxifen for 5 years which I am quite happy?? to do. 

 

I really think that you have to do your own research + speak again to your Oncologist. Maybe then you can come to a decision that you'll be happy with. Whatever you decide, I wish you all the best + take care, Carol x

Member

Refusing treatment!

Not wishing to upset anyone, but I could really do with some advice as I'm in a real quandry as to what to do. I realise we are all different as are the cancers.

Has anyone decided to forego either radiotherapy or tamoxifen - or even both of them?
My lovely surgeon has recommended tamoxifen and radiotherapy. So here is my dilemma…. When my surgeon put my details in to NHS Predict (I am 65), the advantages of tamoxifen was 3.5% less chance of reoccurring compared with 7% without tamoxifen, therefore a benefit of 3.5% overall with tamoxifen.

Similarly the advantages of radiotherapy was 1% chance of reoccurring compared with 4% without radiotherapy, and therefore a benefit of 3% overall with radiotherapy

My 8mm cancer was found in a scan of my left breast. After biopsy it was found to be stage 1, grade 1, slow growing, ER positive and HER2 negative. I had a lumpectomy and SNB. My margins were found to be clear and also the nodes were clear, so cause for big relief.

If the cancer had been higher grade, larger and faster growing and spread then it would be a different story, I wouldn't need to ask about this as the percentages would likely be higher for having tamoxifen and radiotherapy.

My worries are about all the long term side affects, particularly surrounding radiotherapy, compared with the fairly low reoccurrence percentage decrease that I would receive from radiotherapy with tamoxifen. I'm not sure the risks outweigh the benefits, in my particular case is it a case of a sledgehammer to crack a nut!

I would love to hear if anyone else has had this dilema with low percetages?