Forum Discussion

Klio's avatar
Klio
Member
3 months ago

Radiation Therapy Omission

Hello, 

I have been informed by a radiation oncologist that I am at a increased risk of developing radiation-induced fibrosis (RIF) from radiation therapy (RT) due to my having a connective tissue disorder. Following research around this I am currently weighing-up the risks and examining my options. I find the decision-making around this challenging and would like to invite members to share their experiences with:

  1. Decision-making around RT omission
  2. Experiences with RT omission
  3. Experiences with RIF e.g. immediate and late-onset effects

Please include as much detail as possible. All comments are appreciated.

Thank you,

🌷Klio

treatment decisions

6 Replies

  • Hopeday's avatar
    Hopeday
    Member
    2 months ago

    Hi Kilo,

    I am new person to joining this group chat. Have had surgery on 14th August. My surgery went well with all the tumor successfully removed. However, my Oncologist recommended highly that I have RT and a bone density scan. I recently just completed CT scan as well. Prep for RT. After RT I will be put on Hormone blocking tablets for 5 years. I am so concerned that with so much scans, radiation are passing through my body over short period of time, so rapidly as well, will probably cause so much more damage to my cells that I can't see. Is that healthy process?

    I know I haven't felt my normal self since breast cancer diagnosis and post surgery. My wounds is still raw and my breast still hurting. But the nurse at the ICON tell me that there is a window of 4-6 weeks that RT must be done. My worry is that if the cancer is completely removed,  it would make sense to skip RT and go on Hormone blocking tablets.😔 I now understand from reading your comments you need to be over 70 years of age to be allowed that. I am in my 50's.

    • Klio's avatar
      Klio
      Member
      2 months ago

      Hi Hopeday,

      Thank you for responding and welcome to the group chat. I am happy to hear that your surgery went well with the tumour successfully removed.

      I understand your concerns regarding the amount of scans required to ensure that the consultants are in the best position to diagnose; plan for and recommend the most suitable treatments for your case. While I am not medically trained, I understand that the CT scan used for the RT planning in my specific case was low dose and the DEXA scan dose was less than that of an Xray. I was informed that in the context of the routine scans they need to weigh-up the benefits against any risks. The best person to speak to about radiation risks from scanning procedures for your specific case is the radiation oncologist who are best placed to explain these risks.

      I hope that with each passing day your surgical wound improves and your pain subsides. I am glad to hear that the nurse is checking the healing. The nurse is absolutely there to listen and respond to any concerns that you may have around wound healing in preparation for RT. Alternatively McGrath Foundation nurses are available to contact for clinical, psychosocial and emotional support at no cost if you feel you would benefit from additional support.

      As I understand it, omitting RT is not standard practice.  Decisions around the suitability for omitting RT are complex and best made in consultation with your radiation oncologist. The comment you are referring to - that you need  to be over 70 years of age to omit RT - was not made by me but by Maxis (see below). I myself am not aware of this. I am aware however that some research trials are exploring omitting RT for those patients who meet strict eligibility criteria. Various age restrictions apply. For clarity it may help to reply to Maxis.

      It may be most helpful however to request an appointment with your radiation oncologist to answer any questions you might have in regard to RT and to discuss your concerns. They are best placed to provide you with the most uptodate information in the context of your particular case. 

      Hopeday thank you kindly for sharing your experience. Sending you positive healing energy.

      Klio 🌷

      • Hopeday's avatar
        Hopeday
        Member
        2 months ago

        Hi Klio,

        Thanks for your advice. I did chat and sorted my problem out for the time being. My Oncologist postponing my RT for 4 weeks to end of October so my wound can heal. He too agree not the right time to proceed with RT with raw wound. I have also completed the Dexa bone scan and that was the most easiest procedure ever. The Dexa operator was really friendly and that helped a lot.

        Recently I go diagnosed with vertigo so I have been feeling great. Hence did not respond to your message. Special exercise and tablets with this treatment too.😞

        Thanks

        Hopeday

  • maxis's avatar
    maxis
    Member
    2 months ago

    Hi Kilo 

    I weighed up RT omission for a different reason and chose not to go ahead with it. I had early breast cancer it was a slow growing 5mm mass and calcifications. My surgeon got good clearance with both after a lumpectomy. My oncologist recommended I take Anastrazole for 5 years and I am doing that. My Radiation technician told me I had 90 % chance of no return without radiotherapy and 96% chance of no return with radiotherapy. He also said there was a study done on early stage, low risk, oestrogen positive, slow growing cancers which says you can omit radiotherapy in patients over 65 in the USA and UK I think, I was in this category but, In Australia you must be over 70 from memory. I was already concerned about possible side effects of RT on my heart and lung. So having that information I felt comfortable choosing no radiotherapy. My surgeon said I made a reasonable decision.

    Do talk to your specialists again and see what they recommend, they are all there for you to get your best outcome. I hope all goes well.

    • Klio's avatar
      Klio
      Member
      2 months ago

      Hi Maxis,

      Appreciate you sharing your experience around RT omission. Thank you for providing the details of your case including some of the additional elements that informed your decision-making. 

      I value the expertise of the specialists. I am in the process of gathering as much information as possible and hope to connect with them again soon in regard to my next steps.

      Thank you again Maxis for the information and kind words.

      Wishing you all the very best.

      Klio🌷