Forum Discussion

M0nP's avatar
M0nP
Member
1 month ago

Radiation post DIEP

Hello all,

I am exactly 4 weeks post double mastectomy and DIEP (including complete node clearance) which I had after 6 months of neo-adjuvant chemotherapy. I had TNBC in my right breast with 3 nodes involved on the same side. My pathology report said I had clear margins and a complete pathological response 🙏 

I have now been given the option of skipping radiation if I want to. A new study (B-51 study) published last year found that patients with complete pathological response to chemotherapy and a double mastectomy don’t benefit from radiation therapy.

My question is has anyone skipped radiation or was given the opportunity to skip it and chose not to?

Also, has anyone with a double mastectomy and DIEP done radiation and what were the side effects on the breast? 

Lastly, has anyone received radiation in the neck region and what were the side effects like? Difficulty swallowing?

My radiation specialist suggested if I choose to go ahead with radiation she would recommend the sub-clavicle nodes in the neck (along with breast and armpit) as they’re the only nodes I have not checked surgically. 

Would be keen to hear anyone’s opinion or lived experience. 

Thanks 😊

chemotherapy
diep
double mastectomy
side-effects

7 Replies

  • Jane123's avatar
    Jane123
    Member
    1 month ago

    Great you are doing so well with your treatment. 

    Just food for thought. I had a mastectomy and DIEP reconstruction with no radiotherapy. Cancer did return in the skin of the reconstruction 6 years later. (Very low risk apparently). Not sure if radiotherapy would have prevented that but ended up losing my reconstruction and have now had radiotherapy. 

    You just have to weigh up what is best for you and be guided by doctors advice. 

    Best wishes with your continued healing. 

    • M0nP's avatar
      M0nP
      Member
      12 days ago

      Thanks Jane123​ it sucks the cancer came back in the skin of the recon :( and I hope you are doing much better now. My oncologist preferred that I don't skip radiation so I have decided to proceed with it after all.

      • Jane123's avatar
        Jane123
        Member
        10 days ago

        Hi MOnP

        Doing well now thankyou one year down the track. 

        Look after yourself and rest. Radiotherapy can be quite tiring. A good tip I was given was to put a good amount of sorbelene cream on after the radiotherapy and then a hankie over it under your bra. Will really help reduce skin irritation. 

  • arpie's avatar
    arpie
    Member
    1 month ago

    Hi M0nP​ ... welcome to the club you never thought you'd be joining!   
    That is great that you've had clear margins and a complete pathological response ..... 

    Re skipping Rads - My Onc also said I could ... but I just liked the fact that it may mop up any micro bits that the other treatment may have missed, so went ahead with it.  Mine was nowhere near my neck tho.

    Being Triple Negative, you might like to join the Triple Negative Private Group here, where you can chat with others with similar stories.
    Group: Triple Negative Breast Cancer (TNBC) | BCNA Online Network

    I hope you are recovering well from your surgery ..... give a yell if you have any queries on anything - I am sure someone will jump on & reply xx 

    You could also ring our helpline too, on 1800 500 258 (Mon-Fri 9-5) if you'd like a private chat!

    take care

    • M0nP's avatar
      M0nP
      Member
      12 days ago

      Thanks arpie​ I have decided to go ahead with radiation including the neck (eek :( ) I really do not want to as radiation scares me more than chemo did. I will however put on my big girl pants and deal with it.

      • arpie's avatar
        arpie
        Member
        12 days ago

        Good on you, M0nP​ ..... I am sure that you'll be fine xx.  The nurses are all very caring & lovely.  My Rad Onc dropped in on one treatment ....   

        If you notice anything that concerns you, tell your Rads Nurse before the next treatment starts. 

        Ask about the use of Mepitel film to protect your skin too - it suits some more than others, depending on the surgery & position of the area being 'done'.  Many swear by Strata XRT gel too as an alternative 'skin' to prevent burning ... ask them about that too. 

        For lotions & potions - ask which ones they suggest - I just used Moogoo & sorbethane. I lathered up after each treatment & again at night.  I had about 30 rads, including boosters at the end.

        I found it the easiest of all my treatment/surgery - but I was lucky I didn't need chemo.  

        Make sure you don't 'overdo' stuff whilst having the treatment ... if working and/or doing 'normal stuff' you may find it very tiring.

        Take care & all the best xx