Changes after lumpectomy & radiation - unexpected.
It’s now been 6 months since I finished radiation after lumpectomy for IDC With one node showing cancer. I coped easily with the 6 weeks of radiation and MANAGED with the burns etc after, BUT was totally unaware of the changes that kept happening so long after finishing treatment. As I’ve said before I did my cancer journey so far through the private medical sector with top Medibank Private cover incl extras. The o p e are another topic I’ve already talked about so will leave that for now.
Because I was in private system I had NO breast care nurse and had no follow ups scheduled with surgeon, oncologist, radiation oncologist for any check ups other than the cancer count consult with oncologist.
So as my affected breast began changing I PRESUMED all was supposedly changes due to radiation :- nipple inverted, change of colour of nipple yo yellows-green, some v minor discharge, thickening around nipple area, a weird look like black heads in hair follicles, but when this finest thing appeared when I lifted my breast I sent photos up breast surgeon who replied come in if you feel
SICK. (Cancer counts were gr8 by oncologist and scan etc). So later I saw him who referred me back to his physio whom I saw ONCE in hospital day after surgery
I followed the exercises set for the time suggested so I was very annoyed when the physio asked me if I’d been elevating my arm and massaging my breast each twice a day. No never been told. She asked if I’d been doing exercises to stop the lymphodema or the cording I’d developed (Axillary Web Syndrome). No never been told to!
So another $100 later o p e for consult & new sleeve I head home feeling angry and very disillusioned with this private health system who no not follow up or provide support or info to patients.
I’m now elevating my arm twice s day for 30 mins and massaging my breast, under arm, ribs, side and whole area where I have noticed tightening in this cording (due to lymph nodes being removed the drain tubes dry up and shrink causing pain & burning when moving at times. I just wish I’d been told to do this as the lymphodrma & cording is preventable by elevating arm and massage. But damage not able to be undone if you didn’t know it could happen
So please massage your breast and elevate your arm every day in order to prevent having to wear these hot sleeves every day for the rest of your life AND prevent the cording happening.
I know I should perhaps be grateful for surviving. And only having a lumpectomy & being able to have treatment and the money to pay for OPE’s etc but I’m not happy about not being told by expensive PROFESSIONALS what to watch out for and what to do.
Because I was in private system I had NO breast care nurse and had no follow ups scheduled with surgeon, oncologist, radiation oncologist for any check ups other than the cancer count consult with oncologist.
So as my affected breast began changing I PRESUMED all was supposedly changes due to radiation :- nipple inverted, change of colour of nipple yo yellows-green, some v minor discharge, thickening around nipple area, a weird look like black heads in hair follicles, but when this finest thing appeared when I lifted my breast I sent photos up breast surgeon who replied come in if you feel
SICK. (Cancer counts were gr8 by oncologist and scan etc). So later I saw him who referred me back to his physio whom I saw ONCE in hospital day after surgery
I followed the exercises set for the time suggested so I was very annoyed when the physio asked me if I’d been elevating my arm and massaging my breast each twice a day. No never been told. She asked if I’d been doing exercises to stop the lymphodema or the cording I’d developed (Axillary Web Syndrome). No never been told to!
So another $100 later o p e for consult & new sleeve I head home feeling angry and very disillusioned with this private health system who no not follow up or provide support or info to patients.
I’m now elevating my arm twice s day for 30 mins and massaging my breast, under arm, ribs, side and whole area where I have noticed tightening in this cording (due to lymph nodes being removed the drain tubes dry up and shrink causing pain & burning when moving at times. I just wish I’d been told to do this as the lymphodrma & cording is preventable by elevating arm and massage. But damage not able to be undone if you didn’t know it could happen
So please massage your breast and elevate your arm every day in order to prevent having to wear these hot sleeves every day for the rest of your life AND prevent the cording happening.
I know I should perhaps be grateful for surviving. And only having a lumpectomy & being able to have treatment and the money to pay for OPE’s etc but I’m not happy about not being told by expensive PROFESSIONALS what to watch out for and what to do.
