Forum Discussion

heathfield's avatar
heathfield
Member
4 years ago

POST RADIATION PROBLEMS ANY IDEAS?

Hello Ladies.  

11 months ago I was diagnosed with invasive ductal carcinoma stage 3, grade 3 which was all a very big shock to me. But I got on with the treatment plan that my team of doctors put before me and worked through each treatment stage a day at a time. I first had to have chemotherapy first to shrink my tumor which was AC for three months every three weeks then taxol weekly for another twelve weeks, but due to developing peripheral neuropathy we stopped at 10. 


Good and bad days on chemo but got there in the end and for me I found the weekly sessions of Taxol actually worse than AC. I had a months break then had a double mastectomy which I had decided on even though cancer was only in the right breast.  I also had to have auxiliary lymph node removal as one node was positive.   I got through the recovery from surgery which takes some time and then moved on to the next stage of treatment which was radiation.


My treatment plan was 25 sessions of radiation over five weeks, I feared this the least of all my treatments and didn’t have many problems at all whilst having my daily treatments.  They used Mepitel on me which was to prevent the burning and is usually extremely successful. Unfortunately this was not the case with me I started burning after finishing treatment and developed quite severe burns with broken and weeping skin which continued for 2 -3 weeks.  My pain was extreme and my doctors were very surprised that I had this severe reaction.  


I finally healed and was looking forward to moving on with life feeling happy that I had finished 10 months of aggressive treatment. Unfortunately after the healing I have developed a lot of internal muscular problems with inability to move my right shoulder the way it’s meant to move I feel kind of stuck together and have this extreme pulling sensation right through my armpit across my chest to the other side when I lay down at night my body seems to go into some sort of tight spasm and it’s very hard to move when I wake and get up in the morning everything is tight and stuck together. I’m just wanting to know if any of you have had any problems of this nature at the end of your radiation.  I feel like I’m in a vice and it even hurts to breathe and when I pull my shoulder back it feels like I’m going to snap something.  I am 10 weeks now post radiation and the doctors tell me that sometimes the inflammation takes some time to heal I am fearing that this is permanent and my life is unbearable. They are currently treating me with Cortisone and. I’m seeing an oncology psychologist as well as on Endone anti-depressants all in order for me to cope with this new life that I hope will not be permanent.  I’m also seeing a BC Lymphedema Physio. 


I would appreciate hearing if any of you have had this type of issue after your radiation.  

10 Replies

  • noosa_blue150's avatar
    noosa_blue150
    Member
    4 years ago
    Hi heathfield - I’m lucky enough to live on Sunshine Coast Qld where Jen has her physio practice so I can see her in person as well. Her videos amazing source of info .my post radiation issues have resolved a lot since I’ve been doing the exercises from her clinic . hope you get better soon. 
  • heathfield's avatar
    heathfield
    Member
    4 years ago
    Thank you noosa_blue150 for your information regarding the Breast Cancer Physio.  I had discovered her on YouTube and it appears she has an answer to all the issues we girls experience.  It is such a complex recovery that we all go through .  I shall push forward using all the techniques on hand and just give it more time.   💐
  • heathfield's avatar
    heathfield
    Member
    4 years ago
    Thanks for your comments.  Well I’m trying everything else so that sounds like a good idea.  I’ll see if I can find a BC acupuncturist.  
    💐
  • Julez1958's avatar
    Julez1958
    Member
    4 years ago
    Hi there
    i had a few issues with radiotherapy but nothing as bad as you.
    I had a lot of pain after my mastectomy with insertion of tissue expander and was on Endone for over 6 weeks.
    I finally got off it and then when I started radiotherapy it stirred it up again .
    I had a few sessions of acupuncture with a woman who specialised  in breast cancer patients at the Kinghorn wellness centre in Sydney and it really helped with both the pain and range of movement.
    I also saw a physiotherapist there who helped with my recovery.
    Over 12 months on I still have slightly restricted movement on that side which I continue to work on.
    Acupuncture doesn’t work for everyone but I was glad I tried it.
    All the best.
  • noosa_blue150's avatar
    noosa_blue150
    Member
    4 years ago
    Hi-I’ve sent you a message with info relating to the breast cancer physio and YouTube videos which may be of interest ? 
  • heathfield's avatar
    heathfield
    Member
    4 years ago
    Thank you arpie.  I’m in Melbourne and we hv had a long lockdown of pools, gyms,etc. Thank goodness our pools have just opened up and I will be heading there tomorrow to get into the hydrotherapy pool and try and do some light swimming as well.   I’m sorry you have had shoulder complications for so long.  I’ll just keep doing what I’m told and try to remain positive but it’s hard when you think you have come to the end of your treatment then you get hit with more stuff you didn’t expect to have to deal with.  
  • arpie's avatar
    arpie
    Member
    4 years ago
    You've had a rough trot!!  I am So sorry to hear this, @heathfield - I hope you can get some answers and relief soon.  Shoulders are the most complicated set of bones, muscles & tendons in the whole body. :(  

    Do you have access to a heated hydro pool (as in hospital rehabilitation?) Some gentle floating exercises may help it, as the water will also help support it too ...  Where abouts are you?  Town/region? (You can add it to your Profile.)  Members may know of facilities that may be available to you.  Can you chat to your Breast Care Nurse?  An exercise physiologist may be 
    able to help as well.

    I've had 20 years of shoulder problems and know just how painful & uncomfortable they can be when they go 'wrong' ... 

    Take care & all the best xx
  • Cath62's avatar
    Cath62
    Member
    4 years ago
    Oh dear @heathfield how hard for you. I did not have your issues but I did experience some inflammation and swelling post radium and it does take time to settle. For me it seemed a few months. I found the lymphoedema physio really helpful. 

    You are doing all the right things and have enlisted the help of all the right professionals to help you get through this. You must be a very strong person to get this far. I wish you all the best going forward with your recovery.