DCIS & Radiotherapy or not

412 16 days ago

16 replies
262 subscribers
675 views

Hello everyone

I have been diagnosed with DCIS, non-invasive, intermediate grade, and had a 12 mm lump removed with clear margins. I am 66 and in good health. I have been offered radiotherapy (RT). However, my understanding from the consultant was this was a definite. However, after speaking with the radiologist, it seem this is not clear cut. She apologized for muddying the waters but it seems current thinking is sometimes DCIS is overtreated. Apparently RT at this stage only increases my overall chances of survival by 1%. And as most of you will know, I will not be able to have radiotherapy on the same breast if it reoccurs. Considering the potential side effects of RT and what appear to be minimal benefits I am unsure what to do.

I have a friend with similar diagnosis who had RT and the cancer returned. I also have a friend who did not have the RT and has remained clear 15 years. I have read the NICE guidelines and tried to follow a research paper but it doesn't seem to help me!!

Does anyone have similar experience of making the decision to have RT, or not? And what helped?

Any ideas/thoughts much appreciated.

Many thanks

412 13 days ago in reply to Grogg

Thanks for sharing this Grogg. It sounds like a massive shock, and the speed of diagnosis and treatment - whoah!!!! Glad you are well one year on and can well imagine there's a bit of a down time as you relive events.

Take care

WhatHappened 12 days ago in reply to Grogg

Hello 412 and Grogg

I don't think I'm much help as 412 has already had her operation.

My treatment was lumpectomy operation plus combined radiotherapy - it is called Targit IORT (I will shout this treatment from the rooftops if it helps just one person get this treatment).

https://www.targit.org.uk/intrabeam-targit-iort-information

This NHS website might help - it's called PREDICT Breast Cancer .....

"Predict is an online tool that helps patients and clinicians see how different treatments for early invasive breast cancer might improve survival rates after surgery"

Have a look, it might help..... (this is an updated version, you can always click back to look at the older version).

https://breast.v3.predict.cam

I hope this helps - sending love and hugs xx

I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x

Dulcibella 11 days ago in reply to Hopeful Barb

So difficult to decide isn't it? I saw the oncologist last Wednesday and he gave me all the statistics and would not give me a recommendation one way or the other. I am 71, lobular cancer diagnosed in January. For my particular clinical picture there was no difference in overall survival at 5 or 10 years, but the chance of recurrence was predicted at 9.5% within the next 10 years without RT. He said that I needed to weigh up the risks of RT vs. the likelihood of recurrence. Mine is on the left side and we talked about the cardiac risks as well as other possible side effects. I would need to stay on AI's for five years if I don't have RT. This option was only available to me because I met certain criteria. I tried to get him to give me any indication at all as to what I should do. He said that only I know what my priorities are, and I had to do what was right for me. I asked him what he would do in my situation. His reply was "I really don't know." and added, "I'm not 71." I'm not sure if this helps, but I send you my love and best wishes. xx

Dulcibella 11 days ago in reply to Dulcibella

(so sorry this should have been in reply to "412"

412 10 days ago in reply to Dulcibella

Thank you for all your replies. I was unaware of the targit-iort RT. That's probably passed me by now but I'll have a look.

Thank you Dulcibella, for sharing your experience, I was beginning to think it was only me that the clinicians were unable to give answers to! I was told again by the radiologist in a 2nd consultation, that the thinking now is that they have been overtreating DCIS largely due to a fear of litigation in the US but more in the UK because people are - naturally - scared of the word cancer and want everything possible thrown at this disease. She also said, even with all her knowledge and experience, she's not sure what she would do in my situation! Aaaargh! The answers are not clear. Love and best wishes to you to xxx

Hopeful Barb 4 days ago

Hi there, this link is really informative too and may be helpful.
https://www.google.com/url?q=https://nomograms.mskcc.org/breast/DuctalCarcinomaInSituRecurrencePage.aspx&sa=U&sqi=2&ved=2ahUKEwiixt_k6PSGAxWWSTABHR3MAvQQFnoECBoQAQ&usg=AOvVaw1Qh25O8tk4Tu3CMUNe82TH

It is from Memorial Sloan Kettering which is top notch facility here in US.

Bye for now.

Barbara

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