Radiotherapy Fears

Hi BeesKnees 

There have been recent clinical trials on this demonstrating no real benefit for radiotherapy in situations like your mother’s - provided she commits to taking the hormone blocking tablets for 5 years. I guess the tricky thing is knowing how she will get on with the tablets assuming she has only just started them. I can’t give any views on hormone blockers as my cancer isn’t hormone driven. I found radiotherapy ok although I did have tiredness afterwards plus burning and peeling about 6 weeks later. 

Hi, can’t thank you enough for your response. You raise a good point, my mum has only been on the medication a few weeks and so far feeling okay, time will tell. 
We’re hoping to discuss with someone tomorrow, so would like to be armed with as much knowledge/questions as possible before making a decision. But to be honest, I can’t fault her reasoning and don’t want her to suffer any more anxiety.
She is particularly anxious about how radiation may affect her longer term regarding her heart, lung, bone health given she already suffers atrial fibrillation, shortness of breath and has a thyroid condition. I think she’s also trying to be pragmatic regarding her age - she feels at 70 she’ll feel very lucky to have more years free of pain or any other side effects that may occur. 
Thank you again for replying and giving some insight as to your experience. Sending love x

Hi there,

I was faced with this dilemma two years ago. At my oncology appointment I was given the choice as to go ahead with radiotherapy or not. I was informed about the Prime ii clinical study. I met the criteria:  I was 71, had a tumour less than 3cms. had undergone lumpectomy, had clear margins and was node negative. I was ER positive both at the highest (8) and was prepared to take Letrozole for five years. I was told I had a 9.5 chance of local recurrence in the next ten years if I didn't have radiotherapy and 0.9% chance if I did. He went through all the potential risks of radiotherapy including cardiac as mine was left-sided. I asked the oncologist what he would do in my circumstances and he said he honestly didn't know. It had to be my decision. It was a hard one, but I decided against. I have had no side effects of note from the Letrozole (fingers crossed) and I travel hopefully. I have just had my second annual mammagram and so far so good.. .

(I think the oncologist also takes into account the actual pathology of the tumour and there is something to do with the Nottingham Prognostic Index as well, although I'm not fully clued up on that in relation to treatment options.)

I wish your mum the very best. x. 

Hello,  glad that your Mum is doing well.  I don’t want to bore you but my situation was similar in some ways.  I was diagnosed in 9/2021 with DCIS in right breast and a small 3mm breast tumor in left breast.  I was 71 and very healthy .  Both breasts were ER and PR positive.  I did not want radiation so was hopeful but had a fly in the soup so to speak.  Had bilateral lumpectomy with clear margins to left breast.  Right breast margin was clear but not the 2mm that surgeon wanted.  No more surgery as I am small breasted and cosmetically would not look good.  My option was 16 days whole breast radiation with a boost of 5 more treatments to tumor bed on right side and whole breast radiation to left breast for 16 treatments.  Well I did well but I was hard to convince. So far so good and thankful for that.  I am also on estrogen blockers and have 1 more year.  Will be glad to be off those as side effects can be a real issue now and again.  I took Anastrazole for 3 -/2 years but side effects were building up so switched to letrozole and doing ok.  There were no final results of studies so surgeon gave me his best advice as well as radiologist at that time.  Study results can change what is needed and I think your Mum is doing a great job weighing all the options and since she already has some cardiac issues the estrogen blockers should be enough.  
For me being small breasted I knew that if I had a recurrence it would mean mastectomy whether radiation or not.  That is why I said yes as I wanted to give myself all the evidence based treatments at that time.  
As far as I know the benefit of the radiation is not for extended life but for recurrence.  
How large was your Mum’s tumor? Stage and grade and also Ki-67 are probably things the Doctors reviewed too.  Usually slower growing when you are older too so that is a plus for us older gals.  Take care snd so great you are helping your Mom.  ️

All relevant to me. Im 77 and after two lumpectomies, a mastectomy revealed a grade 3, hormone positive, tumour with a 127mm microspread with clear margins. My oncologist said he would not recommend radiotherapy but hormone treatment and abemociclib would be important. I agreed and we never discussed stats. He then left very suddenly and I’m getting the impression from nurses that no other oncologist will agree to that plan. It’s been a real blow to me. Ive looked at ghe NICE research papers on my own and can see that RT would be recommended but also that life expectancy wouldnt be affected. The research seems to exclude newer therapies available, too. Not sure who to trust!

So sorry that you have been through so much..  Were the lumpectomies and mastectomy on one breast?  I agree about the meds but why no radiation I don’t understand.  Since you were stage 3 I thought RT would be a benefit.  Can you go for another opinion as sounds like you have questions that need to be addressed?  I wish you the best and there are a couple of YouTube channels that I really love.  One is Menopause and Cancer and the other is Dr Liz O’Riordan.  Excellent and such valuable information.  I live in Florida but these are my favorite shows.  Hugs to you. 

Thanks, Barbara. Will check out those channels. I think I’ll get another opinion from new oncologist when I see them… I’m not sure I’ll like it!

Your response has been immeasurably helpful, thank you so much. We called the oncologist’s office yesterday together and have arranged a further discussion for Monday morning. You’ve given us some more food for thought and further reading which is great. 
Although I feel like my mum is young at 69, she explained that she will feel lucky to have some more years with her grandchildren in her current state of health and mobility. As much as I find it daunting, I totally understand her (and your) decision to forego radiotherapy. I think you’re all so brave. Wishing you all the best too x

Hi Barbara, my mum and I can’t thank you enough for sharing your story. I’m sorry to hear you’ve been through such a hard time. 
Unfortunately I lack a lot of knowledge and terminology as I thankfully haven’t had much experience of cancer, other than with my grandparents at which point I was too young to fully understand. I have a ten month old who is teething and doing his best to walk (swing from every piece of furniture in the house) so I have my hands full but am doing my best to support my mum any way I can. From what I can remember from her surgery results, a 5mm stage one tumour was removed with clear margins. Lymph nodes negative. The surgeon actually said at the time that if she found tamoxifen too harsh she would be comfortable with her ceasing medication use after her radiotherapy treatment. Now the treatment oncologist has said the opposite so it’s hard to know what may be the best path forward. However, as mentioned above, I totally understand my mum’s logic to forego the radiotherapy given her age and health conditions. It’s not a decision I would wish on anyone and I marvel at the courage she and others such as yourself have. 
I really wish you all the best and thank you again for being so kind. 
Kirsty x

Hi Theresa, I’m sorry to hear that the plan you were comfortable with may not be agreed. Can you ask for a further opinion? 
I commend you for doing your own research, I must admit that I’ve found the whole diagnosis and following process quite daunting and confusing and I’m not the person at the centre of it. I hope you have some support from family/friends. 
Could you give me any more info you might have found regarding ‘newer therapies’? I’d be keen to read more but often don’t know where to start. 
Sending love x