Help, I'm in pain thanks to fluid build up after radiation treatment finished.

Maree72

Hello lovelies,
I have just completed my 6 weeks worth of radiation, on Friday 5th July, hip hip horary.

However I have just developed yesterday and today its worse,  a pocket of fluid at the back of my arm pit area, where the radiation beams went through, during my treatment. 

The fact I don't have any lymph nodes to drain that fluid away, makes it worse, as they took those due to the cancer.
I'm seeing my radiation nurse tomorrow morning as I called her this morning to ask about this, and if allowed after I have seen her,  have booked in for a lymphatic drainage massage to help move this mass. 

Has this happened to any of you out there?
How did you cope?
Advice?

Right now even driving the car was painful for turning the steering wheel, moving the arm up and down at certain angels.
Had to take pain killers to try and sleep last night, as that's when it started to play up, quite possibly will have to do the same tonight.


It so so very sore.
Thank you  

GinGin

Hi @Maree72,
congrats on finally over and done with the active treatments! 

I am no expert but it sounds like you may have lymphedema + restricted arm movement caused by radiation.These are both side effects that I am still managing. I completed radiation some where around end of Mar. And my arm become extremely restrictive ( I got slacked with my physio exercises)  2 months post rads. And I also have what’s called clinical lymphedema. This was identified through the SOZO machine. I was ‘measured’ before my surgery so they know what is my base measurement, and I was ‘measured’at  various stages of my treatment (before chemo, after chemo, before rads and after rads). Were you at any stage of your journey been checked using SOZO?

I am seeing a BC physiotherapist (actually been seeing her after my surgery last year- it’s very expensive to be diagnosed with BC!) and I am wearing compression sleeves (your therapist will measure and order this for you if you do need them) as my lymphedema is around my arms. So I suspect your radiation nurse will refer you to a physiotherapist as well. The therapist will also do the lymphatic massage (+ teaching you how to do them at home ). My therapist also started massaging  my radiated breast ( after 2 months post rads) as it was expected to be very tight. 

Keep me posted on what your rads nurse say as I am curious. 

P.s. couldn’t agree more that it was very very sore initially but it does get better (very slowly unfortunately).

p.s. I don’t have any lymph nodes as well- all removed 😏!

Maree72

Gosh I hope not for Lymphedema,

I have been pushing and pushing and pushing to see my physio I saw prior to surgery back in November of 2023, I'm under the public system. 
Once before I stared Chemo in the early dec, think that was the 6th dec, as chemo started on the 8th.
I saw her once again after the surgery once on chemo over the Jan/ feb time frame, then nothing since at all.
I never was put back on the sozo machine again at the hospital as I never saw her in the physio dep, the only time I saw here again was when I was as sick as a dog up in oncology getting more chemo. and was unable to go down to physio, 
She did tell me to come and see her again on such a day, and when I did she wasn't there, Like ummmm 
hello ........................

Once I started radiation and got my new medical team after that uproar of everything going tits up, I was given the most amazing rad nurse,

After one of the Sozo reading were to high in the arm that had the picc line and the blood clots, not the arm that was being cooked by radiation and no nodes - she emailed the physio back at my hospital as the radiation centre and the public hospital I'm under work together, just at 2 different sites.
I too called the physio dep back at the hospital, plus my breast care burse who all tried to get in touch with physio, no no avail. nothing, no call, no email, nothing but ghosted.

I put in a complaint to the hospital as well, since putting in this complaint I have now learnt that this hospital has 1 therapist for lymphedema, to all of us breast cancer patients, to when speaking with my breast care nurse, she tells me they aprox get any where from 250 - 300 breast cancer patients going through  in a year,
Shame on the hospital for letting this even be such an outrageous situation. But also what about my care! So I'm very frustrated to say the least. 

and now have to pay for a private physio etc,
its just another unnecessary fight I seem to have to battle in my care for myself.

on my last day I was back on the Sozo machine at the radiation centre, my readings were normal then, phew.

But its my worst nightmare coming true if its lymphedema, 
Ill keep you posted.
Thank you for your reply though oh the ongoing joys hey 

arpie

I am so sorry to hear you are having fluid buildup issues @Maree72 ... 
 
Well done on contacting the Rads Nurse - I hope she'll be able to point you in the right directions for getting it drained & hopefully you'll be able to do massage (or similar) to prevent a future buildup.

@GinGin has given you some excellent info .... 

take care & I hope you have a better sleep tonight xx

Maree72

Just got back from seeing my rad nurse 

The update @GinGin

Its all normal, that the swelling is the body's way of trying to heal itself and protect the tissues that are trying to recover from all this radiation.
Apparently I have now peeked for the worst part of this treatment, and it all should now improve over time.
Now dug out my old breast care pillow I was given for after surgery to keep the arm off the under arm pit area.

Check up next week. she did take measurements and photos as a point of reference.
Pain killers come at me 
She didn't think it was the start of Lymphedema, so fingers crossed it stays that way.

GinGin

@Maree72, that’s fabulous news!
one less thing to worry😅!

just keep both eyes on your arm, as early detection with lymphedema is a reversible condition.

🎊🎊🎊