Radiotherapy after Chemotherapy

Hello..i just found this group and hope its active :-)  I was diagnosed with DLBCL NHL with a primary mediastinal mass of 10.5cm this January(2014). I have finished 6 cycles of RCHOP though the disease was at stage 1AE (bcoz of its size,i was given 6cycles) and ended chemo mid-may 2014. The tumour has completely gone and no cancer activities with my PET negative. Now came a real challenge to me in terms of radiotherapy.

Though RT is a standard method for non-hodgkins lymphoma after chemotherapy, in my case, as the tumour itself has gone and everything clean..i have been told to decide on whether to have radiation..which is external beam radiotherapy on my chest area to cover that 10cm area of original site. i am bit inconclusive as no doctor has told yes or no to radiotherapy but they just say merits of both n side effects..

i am just wondering if radiotherapy these days have improved and i shoudnt worry too much about getting this three weeks radiation on my chest (close to heart) to cause any long term side effects related to heart/lung etc., did anyone have a similar situation here?? pls share your experiences/thoughts.

  • Hi

    Just wanted to reassure you that the forum is active (albet it in the process of a few changes) \and to offer a welcome.  I do not have any personal experience to offer advice/support but hope others will be along soon who have undergone this type of treatment.  Alternatively if you are in the UK you can ring the specialist nurses on this site mon to fri 9-5 and I am sure they will be able to talk things through with you.  Great news that your treatment has gone so well so far. All the very best.Jules54

  • Hello Vinoth,

    I am one of the enquiry nurses and Lucie our moderator asked if we could add anything to your thread.

    Radiotherapy techniques have advanced and treatment can be directed with increasingly more precision, but unfortunately this doesn¿t mean that the potential for side effects has been eliminated. We have some general information about radiotherapy side effects on our website at this link,  but I am not sure how useful this will because it isn¿t tailored to your circumstances.  I think your best source of information about radiotherapy side effects will be your specialist team who know your details so do talk this over with them again. 

    If you are struggling to decide what to do, you might want to think about getting an opinion from another specialist (second opinion), but they may say the same thing.

    There may be some community members on other forums who could share their experiences if no one here can. Perhaps it might be worth posting on the forum of the Lymphoma Association .

    If you want to talk to us please call on 0808 800 4040 . We are here from 9am to 5pm, from Monday to Friday.

    Best wishes,

    Julia

  • Thanks Jules & Julia :-)

    Hi Julia, yes i am bit confused as to what kind of side effects and how imminent are these late/long term side effects when the radiation is on chest area just above heart. i had a mediastinal mass of 10x7x8.5cm.

    what kind of issues might arise during radiation and after radiation...what % of people get such late effects? what kind of changes are you talking about in radiation procedure..i know earlier 10-20years ago..it was full body radiation..now its more targeted...though its not IMRT or any other advanced system out here in London as far as i know..i was told the radiation technique that they might use is external beam radiation of 30 grays for 15 fractions(15days) and everytime for <= 5mins or so. so i am more interested to know about this external beam radiotherapy data.. stats..etc., and how easy its to handle these side effects for eg,. coronary diseases or fibrosis....hope to get through this soon..

  • Hi,

    I was given the link to this post by Lucie as I have dlbcl stage 4 the size of a small watermelon no less in my chest! I have completed 6x R-CHOP and am too looking at radiotheraphy-there is shrinkage but it's still got a home in me!

    I just wanted to say if you would like to discuss further please do not hesitate to contact me that is what I am on here for :)

    Rachael x