Home Now what? The highs and lows of survivorship



Through the rabbit hole but not sure there is closure

Hello network,

So I have gone through chemo, port infection, two surgeries (double mastectomy and auxiliary clearance) and radiation, and started Tamoxifen in August 2019. I have been reading other posts and I also was diagnosed with Osteopenia and had some swelling in my left arm (early lymphedema. I have been managing the side effects of Tamoxifen better but I feel slightly unresolved by the discomfort still in my rib cage. It’s not sharp pains but just feels like bruising / a slight tenderness when I touch it. Is that normal? When I had my follow-up with my surgeon and he said that it is from radiation. He then said that it’s when I get sharp pains (that keep you up at night) I need to be more concerned (as it could be a sign cancer has come back and crept into bones).  It feels like a fine line based on feeling. He also said he is a minimalist and doesn’t believe in scans for sake of scans which I can understand too. 

All in all, I am kind of wondering how do you monitor what’s going on in your body without going over the top. Is tenderness on rib cage normal still after 5 months and does it just continue?

Would value hearing from anyone that has gone through something similar.

Thank you for your support
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Comments

  • Dory65Dory65 Member Posts: 291
    Hi @Mags44,
    I did have some lingering (for months) tenderness/discomfort in my collar bone and the ribs underneath it, which I presumed was from a combination of the surgery (lots of digging around for the sentinel node) and the radiotherapy. I had a lumpectomy, then a second surgery for margins. I get tight through that area if I don't exercise and stretch.
  • Mags44Mags44 Member Posts: 37
    Thanks @Dory65, sounds similar. Definitely have that tightness too. Maybe I need to do more stretching too. 

    Cheers for that. 
  • primekprimek Broken HillMember Posts: 5,406
    You might find this interesting to read. Of course if things persist or worsen keep telling your Dr. Sometimes a scan can elevate the stress related to pains at least.

    https://therapy-a.com/pain-after-breast-cancer-costocondritis/

  • arpiearpie Mid North Coast, NSWMember Posts: 4,480
    Hi @Mags44 -  Keep dated notes of any lingering pain/concerns that you have - you may see a pattern emerge? 

    When do you see your Rad Onc next?  It might be an idea to ask if you can see them sooner than later, to discuss your concerns.  I have found my Rad Onc to be the most understanding & helpful of all my team.

    In the mean time, check out these '‘tick sheets'’ to help you put your questions together for your medical team - they cover your mental well being, as well as your physical & has one page for tracking all your appointments.  Make sure you click on the documents at the bottom of the post, & NOT click the pics (as they are just samples.)
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

    Where abouts are you?  You can add your town/city in your Profile - then other members nearby may be able to point you to specific services that are available to you xx

    All the best xx
  • kmakmkmakm MelbourneMember Posts: 7,955
    I didn't have radiotherapy but I have a permanently tender ribcage, especially on the left (I had a BMX). No one has been able to tell me why...

    I think sometimes our bodies are just a mystery! K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,817
    I have a very tender spot on my rib where the drain was.  I came out of the anaesthetic in agony from it and 3 years on from surgery it is still noticeably tender particularly if something is pressing against it (like a tight bra) for a long time.  I'm guessing it is nerve damage.
  • Mags44Mags44 Member Posts: 37
    Thanks @kmakm and @Sister for sharing that. I have had bra discomfort for sure too. I am going to discuss it with my physio and oncologist in a couple of weeks. 
  • Caz1Caz1 Bayside , Melbourne Member Posts: 329
    Hi @Mags44 I have been poisoned burnt and cut over the last 18 months.  Also had a terrible Seroma and a cellulitis caused by rads. 
    Took me months and months  to get comfortable wearing bras as I was so tender and swollen , and even now I prefer a soft crop top. I went and got fitted by a breastcare nurse.  Made a huge difference to feel comfy again.
    Also saw a specialist physio who deals with lymphadenopathy who has given me some stretches that I do everyday. I make sure I do them every day at bedtime and they feel so niiiiice to do.
    My onco and surgeon both recommended I do this. Can strongly recommend.
    I have been easing myself back into swimming which also really helps loosen up the area. It feels so lovely to be back doing it :)

    hope some of  this helps
    Caz xx



  • Mags44Mags44 Member Posts: 37
    Thanks @Caz1, you have had quite the journey and challenges too.  Thanks very much for the advice, it does all help.
  • Caz1Caz1 Bayside , Melbourne Member Posts: 329
    @Mags44, come to think of it, my physio said the pain on the rib just under my Mx scar area was due to swelling which was a mild Lymphodenopathy symptom and was caused by the radiation.
    I had to massage it, and at night I wore this bumpy foam strip thing she gave me inside a hospital boob tuby thing for a few weeks. Weird? Yes!
    But it solved that problem!

    Caz x
  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,795
    "I had to massage it, and at night I wore this bumpy foam strip thing she gave me inside a hospital boob tuby thing for a few weeks". 
    Love it @Caz1
  • Mags44Mags44 Member Posts: 37
    Thanks @Caz1 love your explanation. I think there is some things I need to be more  proactive with. Thanks again,
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