Forum Discussion

Maree72's avatar
Maree72
Member
3 years ago

Radiotherapy side effects apart from tiredness ? Any one experienced them?

Hello everyone, I'm sorry if this question has already been asked, I've been reading many information from here as well as in other places etc,
I've now had my surgery on the 27th Jan 2023, it was a lumpectomy, and it all went well, for that I'm very grateful to my surgical team, my surgeon is a fantastic woman along with her team of dr's under her, I would highly recommend them to anyone here in Brisbane.
My margins were clear, along with the lymph nodes they also removed, 

I'm now facing this radiotherapy and have had my 1st appointment with the oncology doctor who went through everything, 
But these side effects are just not sitting well with me at all,
I'm not to worried about the tiredness, everyone has spoken about this, and I'm still suffering with long covid as well, plus possibly post surgery recovery,
I've started back with exercising, yoga and swimming. the wounds have healed nicely, and the post surgery infection and fluid build up has gone after a brief stay back in hospital 6 days later from the original surgery of the removal of the tuma & lymph nodes.

Its the damage (possible) as I'm told to my ribs. the lungs and maybe the heart.
and these permeant dots you get branded with like I'm live stock not a human. this has me truly upset and very stressed and concerned for my on going health, as this can and will effect my bones, and organs, 

Has any one has side effects to their ribs where they are sore after this treatment, or developed scaring on the lungs (that I'm also told is a possibility) 
My Dr (radiology oncology) did say I could get sore around the rib area, 
they say I need 3 weeks and 1 day's worth of this treatment,  at 5 days a weeks so 16 sessions all up, 
Has anyone had a shorter time as I've read it can range from 2-5 weeks?
Has anyone seek a second opinion or tried alternative measures? 
I'm extremely worried, stressed , and concerned for my health in the long run with bring subject to this now I have all these facts on what the side effects are,

As I have clear margins and nodes and  it seems a bit much to me.
seeking your thoughts please, I'm a little fragile and extremely overwhelmed , this cancer journey sux - and like ( I would think all of us,) "I / we just want my/ our life back"   as this is a nightmare that is screwing up my household and my life


Thanks for reading my babble 
:smile:


 
lumpectomy
radiation
radiotherapy
research
side-effects
  • Julez1958's avatar
    Julez1958
    Member
    3 years ago
    Hi @Maree72
    I had 38 sessions of radiotherapy at Genesis in Sydney 2 years ago and no longer term side effects.
    My radiation oncologist is very experienced and said she had to go through all the potential side effects ( like possible damage to heart and lung) to cover all bases even though those were extremely remote.
    In my case as it was my left breast I had to do a special type of breathing holding my breath with a device like a snorkel and that was to minimise any possible impact on my lung.
    I did get a bit tired towards the end and for a couple of weeks after .
    My skin went a bit pink at the end but I used strata xrt cream ( had to send away gir it) and that really helped.
    Most places use mepitel to minimise skin damage - I couldn’t use it as I had a weird skin fold.
    Like all these things the specialist doctors have weighed up the pros and cons before recommending a course of action so to dine extent you just have to trust them and not ocercthink it.

  • arpie's avatar
    arpie
    Member
    3 years ago
    I was 'lucky' & had my treatment on the right boob - so the heart bit wasn't an issue - but they know what they are doing .... and apart from redness & one 'small bit of skin' that broke down - I didn't really have any extreme side effects - not even the tiredness, really.    The tattoo dots are miniscule & shouldn't really bother you - they just look like a freckle.  ;)

    I had 4 weeks plus 2 boosters .... so 22 sessions .... it is to hopefully mop up any randoms that may have been outside the surgery site .... 

    Try not to get ahead of yourself & work yourself up to a 'worry' - as @Julez1958 says, try not to overthink it.

    Many of us believe radiation to be the 'easiest' of the treatment options.   

    Also, as Julez mentioned, ask if you should have the Mepitel as well .... it can reduce the pink/redness .... 

    I treated myself to a week's holiday after I'd finished my rads, so it gave me something to 'look forward to' - as it was the end of my 'active treatment' before going on to AIs .....  

    Take care & all the best xx
  • Maree72's avatar
    Maree72
    Member
    3 years ago
    what is this Mepitel ?
    I’ve not heard of it at all 
    thanks 
  • arpie's avatar
    arpie
    Member
    3 years ago
    Mepitel is a 'dressing' that acts like a skin and (depending on your surgery scar whether it can be used on you) can further minimise 'burning' from the radiation. 

    Pretty well everyone goes pink (and warm) ... some go red (and warm) and some have some skin breakdown.  The Rads Nurses will usually check you out before treatment to make sure you have no 'open wounds) and you can also discuss any concerns you may have ...  Your Rad Onc will often check you out at some stage during your treatment too.

    The Rads Nurses will also recommend lotions & potions to use to minimise 'burning' .... and that 'warmth' may hang around for a couple of weeks after the treatment has finished, possibly longer .... it is nothing to worry about - but you shouldn't expose that area to the sun for a while (wear sun proof clothing) or just cover up in general ... 

    take care


  • Maree72's avatar
    Maree72
    Member
    3 years ago
    Thank you for the explanation @arpie
    As that was not spoken about at the meet the Dr appointment at radiology oncology last week, when I got information over load on what comes next ! 
    It’s my left breast 
    that will be target area 
    it’s very very overwhelming 
    and my head is spinning 
    😵‍💫 
    it’s getting all a bit to much to deal with 
    but thank you for your response 

  • Keeping_positiv's avatar
    Keeping_positiv
    Member
    3 years ago
    @Maree72 sometimes advise and suggestions coming from all directions can be overwhelming.  The rad team do know their "stuff' so be guided by them is what I would strongly suggest.  In my case the Rad nurse told me to use what my skin was used to, which was Sorbolene cream, and I was advised not to slather it on the skin;, but to apply as I normally would to my skin, and given a set number of times a day to apply the cream.  I never purchased the strata xrt cream, because they had a prescription cream prescribed for me, which worked a charm. I 

    Try not to get ahead of yourself, I also had both breasts radiated, 25 sessions on one breast and 30 on the other.  Also I was unable to do the holding by breath successfully, so they had another way around protected my left side.  This was back in late 2017, and I don't have any complaints, and thankful this was made available and was needed as a part of my treatment.  

    It is easy for us to say don't overthink things, but truly if you do, you will think the worst, which is not helpful for your mental health.  Sure there are risks with treatments, whether chemotherapy, surgery or radiation treatment, but I like to think the benefits outweigh the risks as far as trying to kick cancer to the kerb!  

    I am not suggesting you have a mastectomy, but sometimes women who chose the mastectomy can perhaps dodge the need to have radiation therapy.  If radiation therapy is causing you so much angst, could you see if there are other options?  

    Perhaps some other members have stories of how they avoided radiotherapy by having other treatments?  Or surgery?
  • Abbydog's avatar
    Abbydog
    Member
    3 years ago
    Trust that they know what they are doing.
    You need to be told of all the possible side effects, for informed consent.
    You may be lucky and have minimal side effects.
    I had 25 sessions RT over 5 weeks, after Mastectomy with axillary clearance, and 20 weeks Chemo in 2020
    I did not get very fatigued, except for having an appointment every week day, which I drove to.
    I did not burn at all. My hospital provided Mepitel, which worked well for me.
    I was able to take a 8 day short holiday with family, the day after I finished RT.
    So far I have not had any of the severe side effects I was warned about.
    The only impact RT has had, is that it impacted on my Breast reconstruction choices.
    I wish you all the best.
    Try not to think of the worst.

  • Julez1958's avatar
    Julez1958
    Member
    3 years ago
    Hi @Maree72
    As well as my own personal experience with radiotherapy , I have read a lot on this and other forums and if it is any comfort  radiotherapy is almost universally cited as way less problematic than chemotherapy and the great majority of patients get through it with nothing more than a bit of pinkness and fatigue.
  • Keeping_positiv's avatar
    Keeping_positiv
    Member
    3 years ago
    If I had a choice I would have chosen radiotherapy and not chemotherapy.  Unfortunately I needed both.  If it is any comfort to you @Maree72 I agree with @Julez1958 that radiotherapy is way less problematic than chemotherapy can be.  I hope some of us members have helped put your mind at ease so you can move forward with your treatment with less anxiety about the outcomes.  Take care and wishing you all the best.