Has anyone refused radiotherapy and tamoxifen?

Hello JB50. Your post resonated with me .I was diagnosed with grade 2 lobular cancer 72mm in July. I had a mastectomy and the whole thing was removed with no lymph nodes affected .

I have had 5 days radiotherapy but they have now prescribed anastrozole for 10 years! I have been positive all thru this and really don't want hormone blockers because of long term effects.

I see my oncologist in January and am going to request genome sequencing to see if I would really benefit from hormone blockers. My feeling is,I am very healthy otherwise and surely a yearly mammogram would be enough.

Thank you. It's just nice to speak to someone who understands (although it sounds like you've had a far rougher time than me). It feels confusing as the oncologist even said that the benefits of the hormone therapy are not significant enough to suffer bad side effects for. I tried the predict website and it said that with radiotherapy and tamoxifen I would only have a 0.4% better chance of long term survival than with no further treatment!

Please let me know what you decide to do. I'll be thinking of you x

Hello,  I can understand how you feel as my personal decision to have radiation therapy to both breasts was a difficult one.  I had a stage 1 grade 2 3mm tumor in left breast and  DCIS in the right.  I am small breasted too.  34A.  
I decided to have radiation because of the size of my breasts.  My tumor was small so could have opted out but wanted to give myself the best chance of not having a reoccurrence. If a reoccurrence I would  have needed a mastectomy because not enough breast tissue for another lumpectomy.  Did well with radiation and had 16 treatments to each breast and a boost of 5 to the right side as margin was less than 2mm and that is what they like for DCIS.  However the question of margins is different in different studies. 
If I had been larger breasted I would have opted out of radiation and if I got BC again would have had another lumpectomy and then radiation that time. 
well that is my thoughts.  There is a test you can have done to if you have DCIS called oncotype dx breast DCIS but I didn’t do it as margins were too close.  I don’t know of a test for invasive ductal though.  So the best thing is to discuss everything with your surgical oncologist and then decide.

Take care and Happy Holidays .  Sorry I went on and on.  

Hello hope you’re well, yes I did refuse to take the tamoxifen because of the side effects. But I did do the radiation treatment I had 9 sessions. The tamoxifen scared me the most especially with the risks of it so I decided not too. But the fear of the cancer coming back scares me and am I more at Risk for not taking the pills ? I guess u have to out way the risks I wish you good health xx 

Thank you. It's a real cost benefit analysis where you'll never really be sure whether you've made the right choice. I'm a bit calmer today. Thank you for sharing your experiences.

Thank you for sharing your experiences. I'm feeling calmer today

Hi JB50 , it’s such a difficult question. Good that you’ve asked it here as with different responses and viewpoints you can make the most informed choice for you. I had less of a dilemma than you as I knew already that I’d take everything offered, possibly because my mum died at 53 from breast cancer and I wanted to do all I could not to follow in her footsteps. Having said that, I was older when diagnosed (59) so not a direct comparison anyway. So I had similar op to you, went on Anastrozole 6 weeks later, and had 3 weeks of radiotherapy. I’ve had some side effects from both but I feel I’d do the same again if I have a recurrence and these were the recommended treatments. There’s also a lady here who I’m sure wouldn’t mind if I share her username so that you can click her name to read her story. Leolady56  (hope you don’t mind but I feel confident you won’t!) had DCIS, had op but turned down radiotherapy. She then had invasive cancer 2 years later, which required more extensive treatment.. I think that’s right but check to read the full explanation.
The whole thing is a minefield and I really feel for you. I can only share my own story and those here that I know of. There will I’m sure be others around who refused further treatments and are fine. It’s not an exact science (hopefully some day it will be more personalised, it’s already progressed hugely since my mum’s day). Sending love and a big virtual hug, HFxx

PS - just a thought re the tamoxifen - to consider trying it and seeing how it goes. Nobody can make you keep taking it if you find it intolerable. I know that doesn’t help with the radiotherapy as it’s a yes or no…

Hi JB50

I was offered tamoxifen but when I thought about it I said no. I had a successful mastectomy with lymph node removal and was told I'm clear. I will have my 6 month post surgery check up in Feb with mammogram etc so I'll revisit the conversation then. But I'm still inclined to say no. Of course each decision is personal, I'm sorry you are struggling it does feel hard at times to know what to do. 

Janet 

Hi JB50

Good to hear you are feeling calmer today. Whether to have any treatment is always a personal choice and I would never try to convince anyone one either way. I would say, however, that side effects are not guaranteed. Although there are lots of posts about negative side effects which can be frightening, people can have radiotherapy and take tamoxifen with no problems at all. I hope you are able to make a decision which you are at ease with and is the right one for you. x 

Also if you research tamoxifen it has saved more breast cancer lives than anything else.  I was post menopausal so on anastrazole.  Tamoxifen saved over 500,000 lives.  I know there are potential side effects to taking any medication but breast cancer can be relentless so important to do a deep dive and then decide for yourself.  I am a little over 2 1/2 years into anastrazole and doing pretty good.  Not much to complain about but have change times I take it snd deal with hot flashes but all in all doing great.  
Happy Holidays to all of you and may we have a great year.