Through the rabbit hole but not sure there is closure

Mags44

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

Dory65

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.

Mags44

Thanks @Dory65, sounds similar. Definitely have that tightness too. Maybe I need to do more stretching too. 

Cheers for that. 

primek

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/

CatLady

I had a similar pain around the lower rib cage and found myself shallow breathing and living on endone for the pain.  My GP couldn't figure out what the pain was from.  I did some research myself and found out that the muscles between the ribs can contract from the radiotherapy and restrict movement and cause pain.  I found a cancer specialized physiotherapist who even after one session helped to teach me specific rib stretching exercises and how to breath again.  The pain subsided completely after about 5 sessions and I was able to ditch the pain meds altogether.  Google  'PINC and STEEL cancer rehabilitation' for one nearest you.near you.  Hope this helps.

arpie

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

Mags44

Thanks @primek, @CatLady and @arpie for your supportive suggestions. Such a great network!  I think partly it may be the discomfort which I will follow up with a specialist physio too (as finished radiation in July) but also the mental game. I have returned back to work full time and I guess I am not quite what I once was and never got quite the closure that  they have removed it all and your in remission (which sounds silly I guess because they can’t guarantee that). So with these aches I have a slight lingering fear which surprises me as I thought I was pretty resilient to now. 

Anyway will follow-up all the advice and really appreciate the support as there are things I admit on this network that I find it difficult to say out loud with family and friends - possibly because I don’t want to worry anyone. 

Cheers 

kmakm

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

Sister

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.

Mags44

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. 

Caz1

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

Mags44

Thanks @Caz1, you have had quite the journey and challenges too.  Thanks very much for the advice, it does all help.

Caz1

@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

Blossom1961

"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

Caz1

@Blossom1961 hahaha BC IS SOOOOOOO GLAMOROUS 

Mags44

Thanks @Caz1 love your explanation. I think there is some things I need to be more  proactive with. Thanks again,