Newly Diagnosed - Radiation Side Effects?

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 870
Moderator moved @WhiteLight discussion from activity section to 'Newly Diagnosed'

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Comments

  • arpie
    arpie Member Posts: 7,567
    Sorry to see you join our select little group @WhiteLight  Hopefully we can help with info on rads & hopefully you won't need chemo.  Mine was invasive Lobular - I had a lumpectomy & sentinel node removal, then rads & tabs (I didn't have chemo.)

    I hope you are recovering well from your surgery - make sure you don't overdo anything ... often it is the 'reflex actions' that can cause pain ... like picking up a grand child, or reaching up (or down) into a cupboard ... so make sure you have buddies to do the washing etc for you xx. Make haste slowly.

    You'll probably see both a Rad Onc and Medical Onc - as invasive 'anything' may require further treatment, even after your surgery.

    Rads (I found) was the easiest of my procedures ..... if you DO have Rads - just make sure you keep the moisturiser up to the area being treated (you can do it 2-3 times a day after treatment, just not BEFORE your treatment.)  If you are really concerned about burning, you can ask about using Mepitel (a 'skin' they cover the area with to reduce the chance of burning.)   I didn't really have any fatigue - your whole day revolves the 15 mins of treatment! ;)   Tho there could be some long waits ..... my Rads Clinic had magazines & jigsaw puzzles to while away the time while I waited.

    Have you got your pathology back from the surgery yet?  It should tell you the 'grade' and 'stage' of your tumour.  They should also explain what future treatment you would expect to have.  Make sure you get copies of ALL the reports - they'll usually be sent to your GP as well.  Have you been assigned a Breast Care Nurse yet?  You can usually put any query past them too.

    All the best, take care
  • Afraser
    Afraser Member Posts: 4,370
    @WhiteLight

    Like @arpie, I hope chemo is not a recommended treatment but if it is, give it some careful thought. How people react, to even the same chemo regimen, can vary widely. I had a clearly defined tumour and one malignant lymph node so I wasn’t arguing but I recall my surgeon saying that even a few extra percentage points in favour of reducing recurrence chances is worth having. I had some side effects, but no nausea or fatigue and worked happily throughout chemo. 

    At a regular eye appointment today, conversation turned to the one in 10,000 chance of anything going wrong in a common eye operation. You always assume you’ll be in the 10,000 but someone has to be the one. And a few years ago, it was me. All rectified, but it’s a salutary tale about stats. 

    Best wishes for your results. 


  • Blossom1961
    Blossom1961 Member Posts: 2,374
    edited February 23
    I will be starting rads soon and have heard (via this forum) that strata xrt is the way to go to protect yourself from burning. After researching it, I have decided to give it a go. I am hesitant to use Mepitel as I am adhesive sensitive and not willing to risk having it infect. Most people love the Mepitel.
  • SueD
    SueD Member Posts: 22
    Hi Mez,
    Not sure when this was posted but I also have invasive ductal carcinoma. I had an oncotype test done and have avoided chemo. You could google search to see about this (it costs a lot though) - maybe talk to your oncologist about it. It gives you a score based on your likelihood of recurrence and if below 25 chemo is not required (that is lower is you are premenopausal). 
    I am going through radiation at the moment and I am three weeks done with one week to go. I was told by my team to use epicyn gel (it’s available online from Joya medical) twice a day and moo goo twice a day. I apply the epicyn one hour prior to treatment and then at night prior to bed and the moo goo during the day. I have very minimal pinkness atm. 
    I really wish they would hand us some treatments that do not have all these horrible side effects, but we have to do what we have to do. After this I am on to Anastrazole which can cause bone density loss (yay, just what we need). I think we need to all we can to overcome the side effects- creams, tapes, etc for radiation and strengthening exercises and Calcium and vit D for the Anastrazole. 
    You have had your surgery quickly and the first month or so is the scariest. Then we do what we can to fight this thing. The radiation really hasn’t been too bad. I cannot comment on chemo though. 
    All the best for your journey ahead. Be guided by your medical team. You’ve got this. 😊
  • arpie
    arpie Member Posts: 7,567
    I've not heard of epicyn gel before @SueD - 6 years ago we were just told to not put anything on before the Rads treatment - only afterwards.  Anyone else would definitely have to put the use of that to their Rads team ;) 

    Looks like it is a type of silicon gel - which I used (something similar) after my surgery to reduce the scarring around my nipple (it was removed to access the tumour & then sewn back on afterwards.)  It worked brilliantly. It is called 
    Kelo-Cote Gel.   



  • SueD
    SueD Member Posts: 22
    Hi Arpie, 

    Yes it is a silicone gel (it is recommended for scars). My radiation team swear by it. It dries to a film and helps prevent the skin burning. Like you say though I would definitely run it by your team, they all have their own ideas. Mine said that with the Mepitel it is difficult to cover the breast and the epicyn acts in a similar manner. They use the mepitel for mastectomies since it is a flat surface. Any advice you receive though is best put to your team - I certainly wasn’t suggesting you do this without asking. They are the professionals, I am just telling you about my experience. Hope it helps. 😊
  • Abbydog
    Abbydog Member Posts: 482
    I am wondering when this question was asked. It was moved this morning. Dear WhiteLight, I'm sorry for your recent diagnosis. Have you got results of your Histopathology? Treatment becomes clearer after those results. You will be told the Stage and Grade, and type of BC. I found Radiotherapy to be the easiest of all my treatments. The Public Hospital that I attended, provided and applied Mepitel. I did not burn at all. I had 25 sessions. I did have a Mastectomy, which means I had a flatter surface to have Mepitel applied.
    With regards to Chemotherapy. I did not find it very difficult. I was very lucky to have minimal side effects, compared to many others.  I found it nothing like it is portrayed in the movies. You really don't know how it will be for yourself until you have it. Be guided by your Medical team. I think that my treatment was clear, based on the size of cancer, Stage 2 and Grade 3, Ki67 score of 50. I am happy to have thrown everything at my BC that I could. My BC was a fast growing one. I hope that my future is good. I am 4 years from original diagnosis. 
    I hope your treatment plan is clear. And whatever it is, that you tolerate it well. 
  • Julez1958
    Julez1958 Member Posts: 1,114
    Hi @WhiteLight
    I had 28 rounds of radiotherapy and almost no skin changes
    I had a mastectomy and an unusual skin flap ( fixed in the subsequent reconstruction) that meant I was not able to use Mepitel ( which is the gold  standard for protecting the skin).
    My oncologist suggested strata xrt cream which I had to send away to the USA for and it was not cheap  but was effective.
    Also important to moisturize.
    I got a bit fatigued towards the end of my treatment but it wasn’t too bad at all .

  • WhiteLight
    WhiteLight Member Posts: 8
    Thank you all for your helpful replies. I have made a note of each suggestion to take to my appointment on Thursday next week. I will get my results then and be told the next steps. I think at the moment I'm just so scared of the unknown  :/
  • nicmaree
    nicmaree Member Posts: 25
    @WhiteLight
    I finished 3 weeks of rads a few weeks ago. I didn't really get any skin changing effects until the last week and then fatigue and rash really kicked in once rads had finished. My skin didn't burn at all but I'm still moisturising twice a day (and did it religiously throughout rads) and having a short nap on the weekends if I need it. I do still have some swelling though. Take care xx

  • GinGin
    GinGin Member Posts: 110
    @Julez1958, Hi!
    can you kindly share when (+ how often) you apply StrateXRT and when ( and how often )do you moisturize?

    I’ve purchased StrataXRT (as it was highly recommended by a volunteer nurse when I was having chemo. She used it when she had BC) but the nurses where I am having treatment isn’t familiar with exactly how to use StrataXRT. They said using MooGoo is good enough. But as I have already purchased StrataXRT, I would like to use it ( and moisturize as well). They have told me to follow the instructions included in the StrataXrT!
  • Julez1958
    Julez1958 Member Posts: 1,114
    Hi I applied the strata xrt an hour before radiation and then washed it off at night and moisturised
     had my radiation in the afternoon
    it takes a bit to get used to don’t over apply it or it won’t dry
    the nurses applied it for me the first time do I could see how to do it
    good luck !
    I used moo goo to moisturise 
  • GinGin
    GinGin Member Posts: 110
    Thank heaps for coming back so quickly! @Julez1958😘
  • cactusk
    cactusk Member Posts: 51
    Hi @GinGin
    I used Stata too and found it really good.
    About the size of a 10cent piece, applied it thinly all over the rads area (which for me included under arm, my collar bone and the centre of my chest), then let it dry for 6 - 8 minutes (luckily I live alone so I could wander around braless in the morning). It's pretty sticky and weird to wash off.
    I tried to use it in the evening as well but after a few days stuck with morning only and moisturised before bed.
    I had no skin reaction during rads - and now a week later have a very small patch of itchy skin that I'm applying aloe vera to and it's calming really quickly.
    Hope your skin stays good during rads too!
    K
  • GinGin
    GinGin Member Posts: 110
    Thank you @cactusk! I have the same areas being radiated! 
    I tried applying this evening and think I may have put too much as it still ‘shines’ even after 10 mins! So I used a tissue to wipe off gently.. hope it’ll still protect my skin 🙈

    I’ve read some ladies using Aloe Vera as well…. Thank you for sharing your tips 💝