DCIS & Radiotherapy or not

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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

  • Hello 412,  Sorry you are dealing with this decision.  Always hard.  I will write you more about my story but gotta do some house work first.  However there is a genomic test that can be done to see if you will benefit from radiation and wanted to get you the link so you could review.  
    Here it is

    https://www.google.com/url?q=https://www.breastcancer.org/podcast/genomic-test-dcis-radiation-benefits%23:~:text%3DThe%2520Oncotype%2520DX%2520Breast%2520DCIS,offer%2520more%2520benefits%2520than%2520risks.%26text%3DAt%2520the%25202023%2520San%2520Antonio%2520Breast%2520Cancer%2520Symposium%252C%2520Dr.&sa=U&sqi=2&ved=2ahUKEwimmpT8v9aGAxXQSzABHcUeBG4QFnoECBIQBQ&usg=AOvVaw3v0TahlQbzZcgAsF_z_yId

    Hope you can listen.  Take care . Later.

    Barbara 

  • Thanks so much Barb. The Macmillan nurse alerted me to the fact I had replied yesterday via email, but not to the conversation thread! Doh! 

    I wasn't aware of this test so thank you for sending this info. I presume I need to ask to see the consultant again to discuss and use this. I'm really undecided and leaning more to not having the RT but scared I will increase my chances of reoccurrence if I don't have the treatment now. 

  • Oh it is a difficult decision but will share what I did back in 2022.  Was diagnosed with DCIS in right breast in 9/2021 and plan was lumpectomy, radiation and hormone blockers.  Then after further tests and a surgical biopsy it was found I had a stage 1 grade 2 3mm breast cancer in left breast. They were not able to do the MRI biopsy as breasts are small.  Surgeon got it all and clear margins so that was that.  But I was left with a dilemma as I didn’t know if I wanted double nipple sparing mastectomies with implants or do the other lumpectomy and face radiation to both breasts.  That was a dreadful time for me.  I was diagnosed at 71 and in really good health so I wanted to do the right thing for me at that time.  Surgeon was wonderful and patient with me as it took me some time to decide.  After everything was said and done I had the bilateral lumpectomies, radiation to both breasts and am on hormone blockers.  There were so many hurdles and if you read my bio you will get it.  Also had to have a boost of 5 extra radiation sessions to the right breast which had DCIS because one of my margins was 1mm but no ink on tumor.  They did not want to operate on me as cosmetically I didn’t have enough tissue  to spare.  
    So my reasoning was to have the radiation as I am small breasted and if I didn’t have it and got a recurrence I would need a mastectomy anyway and wanted to give myself the best chance of it not coming back.  My surgeon was glad that I made that decision.  I did really well and feel good.  I think if I had larger breasts I may have taken the chance with skipping the radiation and if I had recurrence I could have another lumpectomy and then radiation at that time.  I know I rambled on but just wanted you to know.  I could have had the mamma print test done but with margin issue it didn’t make sense.  
    Hugs to you.

    Barbara 

  • Thank you so much for sharing your story, sounds like you've been through an horrendous time. I really appreciate you taking the time to reply so comprehensively. I have spent the day researching and speaking to various cancer related organisations plus the radiologist. My case is borderline and the answers, ie the pros n cons of having radiotherapy or not, seem unclear. I am leaning towards not having treatment and keeping the option for future treatment open.

    Thank you again. Gentle hugs to you too.

  • https://www.google.com/url?q=https://www.health.harvard.edu/blog/when-can-women-with-early-stage-breast-cancer-skip-radiation-after-lumpectomy-202209152816%23:~:text%3DGenerally%252C%2520this%2520option%2520is%2520offered,estrogen%2520to%2520grow%2520and%2520spread.&sa=U&ved=2ahUKEwiD2orw4NmGAxUCQzABHcXwCWYQudELegQIFRAC&usg=AOvVaw0PQhjt87ltV0b8-uTxmo40

    excellent article.  Actually my Breast cancer journey was one thing after another but the whole picture really wasn’t that bad now that I look back. I don’t like a lot of things being changed and that was difficult for me.  I feel blessed and know that I am doing all that I can to stay healthy.  Can’t do more than that.  The hospital I had my surgery at is currently doing clinical trial on woman over 70 and the 2 arms of the study are lumpectomy with radiation and the other arm is lumpectomy alone.  Be interesting to see the results.  Very important to take the aromatase inhibitors and my radiation oncologist said that is a reason for radiation as so many women don’t complete the 5 years.  
    Take care and your decision will be the right one for you .  You are doing your homework.  Hugs to you and you can ask me anything and if I can help you I will.

    Barbara 

  • I'm 60.  Diagnosed in 2015 with 10mm of  intermediate grade DCIS at biopsy.  After surgery 11mm high grade was final diagnosis.  I then had 15 sessions of RT.  I was told by surgeon who gave original biopsy results that some thought it was over treatment but she had found best results with surgery & RT.  I didn't require hormone therapy,  I'm back on 3 year screening now.  Last one , 2021, they recalled me to check stability of calcifications first picked up in 2015.  

  • Thank you. I hadn't heard of aromatase inhibitors, so another valuable tip - off to research! Sounds like a useful clinical trial. I think for me, it's learning to live with whatever decision I make, knowing there is now definite right or wrong.

  • Thanks Grogg. Hope all screening is clear for you now. 2021 sounds like a heart sink moment. 

  • Aromatase inhibitors (Anastrazole, letrozole or exemestane) are given if your cancer was estrogen positive. Usually taken for 5 years but some are advised up to 10 years..  This drug is for post menopausal women only.  Tamoxifen is given to pre menopausal women 

    This is just the basics.  

    Barbara 

  • I was 51 at time of diagnosis so I took all on offer.  There is another option on offer I didn't know about.  Radiotherapy at time of surgery.  I'll tag   as she had this treatment.