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Cynth6's avatar
Cynth6
Member
8 years ago

To do radiation or not

I saw the radiation oncologist today and she of course recommends I do radiotherapy. 
Now just 3 more rounds of chemo and in two weeks I'm finished. Surgery In 5 weeks which  be a mastectomy with immediate implants or expanders. 
I really don't want to do radiation as I know how bad it burns your skin and I have extremely sensitive skin. I have a long history of eczema and many years of using steroid creams that has really thinned my skin. 
Also I know that radiation can really muck up
my implants or expanders. 
My oncologist said I should have radiation as my mum passed away from BC, I have the brca1 gene and because I'm 30. But I really don't want to do it. 
Of course I want to prevent reoccurance but I thought cutting my boobs off would be enough but apparently it can come back to lypmhnodes in the chest area and near neck. Like what the F?!!! 

What to do

10 Replies

  • And @Cynth6 ask if your hospital use Mepitel film. Here is a thread about Mepitel film with some very helpful information - http://onlinenetwork.bcna.org.au/discussion/13948/radiotherapy-side-effects#latest.  Hope this helps. Xx 
  • Good idea if anything gives you a bit more chance go for it
  • Thank you so much ladies @TonyaM @Kat09 @HIT @HarleyB @melclarity @primek @Zoffiel
    i think I should just give it a go and go ahead with it. After reading all your experiences and advice it has made me feel better about it and I'm not so worried about how my skin would burn and possibly react. As everyone , I want to be alive for as long as I can so I should go with my doctors recommendations. 

    Thanks again ladies xoxo
  • With radiation,you can never tell who will burn and who won't. I'm fair and just ended up glowing like a hot plate but my skin never broke down.I'd had a lumpectomy and so radiation was a done deal- I didn't think much about.When cancer came back in the same spot 7 years later,I really questioned the radiation.I had to have a mastectomy and can't have implants because my skin is so tight from radiation.I also have upper lung scarring. Every bc treatment carries risks but then not doing it risks recurrence or worse still,metastasises.It's a balancing act .All you can do is gather the info and stats. Get a second opinion if needed and then go with a decision that feels right for you. 
  • I think when we are faced with every aspect of treatment for BC it is so overwhelming and tiring. I have had 6 months of chemo AC then Taxol, I have just finished 5 weeks of radiation therapy and have a mastectomy with aux clearance scheduled in September. Each step has had it's own worries and what if's but I wouldn't not have followed the treatment plan my specialists have advised. Radiation therapy is not the horror story some people believe it to be, yes my skin is pink and in some places especially over my collarbone it's red and angry looking but I know that it will heal. I have been really diligent with moisturising and as Mel said Solugel really helps in the areas that are a bit tender. I have no pain at all even though a week after treatment I am still very red in the treatment areas, I was told to expect that it could worsen for at least 10 days after treatment had finished. Fatigue didn't really hit me until this week, so I am resting and letting myself heal in time for the next bout.  For me I just want to do everything I can to make sure those microscopic "fkrs" are gone so that I can move on and heal. My skin and Lymph nodes were the main target of the radiation so the redness was what my Rad Onc was wanting that gives me peace of mind when I see how red it currently is. The part that annoyed me the most was the cost, that and not getting an eve tan across my chest ;) 
  • Yes this "gift" keeps on giving doesn't it!!!!  Definitely WTF....  Have you asked about the gauze stuff they can put on before radio?  They have had a bit on this site and it sounded liked it worked well.  I have forgotten the name.
  • Like the others my main issue with radiation was the inconvenience of daily treatment for 6 weeks. It was much much MUCH easier than chemotherapy. I know that fatigue is an issue for some people but my fatigue was from chemo and during radiation I felt better every week. 
    I have very sensitive fair skin with freckles. I always burn in the sun. My first 5 weeks were easy - just a little bit of redness. By my second last day I had a burnt area around my scar where they did the boost dose or whatever it was called. This burn got worse during the next week after I had finished which was a bit scary because you go from seeing therapists and nurses every day to NOTHING! I went to my GP (who was closer than the radiation clinic) and she thought it was ok and by the end of the week it was gone. The main problem was that I couldn't really see it properly to decide whether it was infected or what? All I needed was a bit of reassurance and to know that I was doing the right things.
    So for me 7 days with a bit of a burnt area was definitely worth the reduction in my recurrence risk. I wore a soft cotton crop top instead of a bra with a loose fitting cotton tshirt. Use the moisturisers that they recommend and check with the nurses if you are concerned about your skin. 
    Good luck.
  • @Cynth6 totally understand your apprehension, Im very fair skinned but not everyone fair skinned burns believe it or not. I know many who didn't. I unfortunately did in the last few weeks, particularly under my arm. Honestly though Marg is right, it took 2 weeks and alot of solugel to heal, but it heals super quick no problems, the fatigue was incredible, like Id been hit by a bus. I worked all the way through rads and a single parent of 2. It really isn't as bad as you anticipate and its an added insurance. I hear you about the Mastectomy...a year after treatment I finally did a single due to a recurrence...but pathology of the breast was perfect :/ then a subsequent visit to the Oncologist for him to say he's not worried about me getting breast cancer again but rather a secondary. Im like WTF!!!! then why bother with a mastectomy then?? So I think youre doing all the right things, and soon it will be in the past...I found in 6yrs rads was the easiest of the lot. :) big hugs Melinda xo
  • My friend was faired headed white skin lady who only ended up with slight pinkness. You could have your tissue expanders put in and inflated prior radiotherapy this would result in better outcomes. They honestly don't recommend treatment they don't believe you need. 
  • I think you may find that, yes, radiotherapy can cause burns, but that the overwhelming majority of people recover very quickly. It is not like sitting out in the sun; being fair skinned does not mean you will automatically get worse burns.

    It is tiring and time-consuming, particularly if you live in the country, but if the burns are your main concern it is possible that talking to a few more people who have done it may help.
    I had 30 rounds to my axilla and sub-clav nodes. I ended feeling like a BBQ chook for about two weeks then it was all over as far as the burns were concerned. Uncomfortable? Yes. But I'm not scarred and it was not at all like I had worried it would be.