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.

cording

radiation

lrb_03
Member
8 years ago
Thanks @sandramj. That will be helpful for someone. I'm actually a couple of years down the track. In fact, 2 years today since I finished active treatment. I'm in a custom made sleeve and full glove, unfortunately, to get a good fit, so I pay close to $500 for each set, and also wear a lighter gauntlet over the top for another $90. My private insurance refunds 60% of 2 garments per year, so I'm very particular about how I'm billed, as the glove is the expensive item, so I want to claim those.
Each state has a different program for providing rebates for compression garments. Where I am, in the ACT, if you have a health care card, you get rebates on 2 complete sets of garments per year, but otherwise nothing. However, you have to be able to pay for them up front to get the rebate, and most people on health care cards would struggle with that.
Do to tenosinovitis in both my thumbs, I have been unable to do self massage for most of the last year without making that worse. Surprisingly, my lymphoedema has remained stable.
I am going to have a look at that website ☺
Afraser
Member
8 years ago
I was advised about the risk of lymphoedema, did my exercises religiously and still got it. No breast to massage, but I suspect the seroma didn't help!! One of the really nasty things about lymphoedema is that it can occur up to fifteen years post surgery. That requires deep devotion to elevating and massaging.
sandramj
Member
8 years ago
@lrb_03. I can help perhaps with a supplier of the sleeves at $52:80 post free in lieu of $79 for the breast surgeons physio.
Watch out for cording in case you haven’t been told. Good luck with treatment and healing
lrb_03
Member
8 years ago
I had my surgery as a private patient in Sydney, and all other treatment as a public patient locally. I had chemo before surgery, and self referred to local breast care nurses. If I hadn't really pushed, I think I'd still be waitng for a response! On the flip side, when I had my surgery at a private hospital, I saw a breast care nurse every day. When I went home, I had regular phone calls for over 12 months post op.
My follow up was clearly mapped out for me as to what should happen. My surgeon has always been availble for an extra appointment if I had questions or concerns, as has my medical oncologist. I haven't required extra with the radiation oncologist, so I'm not sure about her, but she has always been informative and approachable.
Whilst I was aware my risk of lymphoedema (I had an axillary clearance - painful nodes my only symptom) I didn't expect it to develop so early - 6 weeks post op, went in to my 1st sleeve the day I started radiotherapy. Now that has been a financial shock!
kezmusc
Member
8 years ago
Seems to be a common thing with a lot of people I have spoken with. Most of the women I have spoken to who went private, apart from the huge out of pocket expenses, have had very poor follow up. I guess it depends which hospital you go to as far as public goes. I had no issues at all (the hospital is a teaching hospital as well). I was able to select from four surgeons who operate both public and private. I had a private room, as did the other three ladies that were there for breast cancer surgery at the same time. There were two breast care nurses available that divided their time between the ward and outpatient clinics. Mine, came with me to every appointment. before and for two of the follow up apts. She also arranged for me to be accepted as a public patient in a private hospital so I was able to use their scalp cooler and I also did my radiation there as well. I could not have asked for any better treatment. Everyone from the breast care nurses, to the surgeon to the registrars, residents and nurses were all brilliant at both hospitals. The private hospital pharmacy even gave me my take home medications. Zero out of pockets.
June1952
Member
8 years ago
I would only do that if the public hospital is not a teaching hospital as I would still want my surgeon and a private room and neither are certain if one goes that way. Also, one still gets all the out of pocket expenses as if one was fully private.
Cannot win either way.
Like @sandramj I have paid top hospital cover since 1974 as well as paying taxes but I'd like to be treated by the medico I had selected. We pay $4,000 pa and my husband was recently treated as an absolute ''feral'' in the public system (when the private hospital was on ambulance by-pass).
That is so distressing, @sandramj. Last time I looked the McGrath website had a list of their nurses and contact numbers but maybe not now. I try never to leave messages and I would speak with the hospital social work department for details if necessary.
Romla
Member
8 years ago
@sandramj I agree with you and will be doing same if there is a next time
sandramj
Member
8 years ago
@Romla I’ve phone emailed and left messages with the local hospital and McGrath foundation but NEVER even had a reply. Very disappointing after paying private health insurance for 52 yrs @ $420 currently per month. I’ve decided if there is a next time I’m going private IN PUBLIC so the public hospital gets the money healthcare funds pay to private hospitals. I would take up a bed in a public hospital cos I’ve paid the equivalent of $250,000 in medical insurance over the 52 years and as a taxpayer for most of those years, deserve to be treated as well as any public patient. And I’d like the health insurance company to give funds to the public hospital. Another way I can give back. Just my feelings right now. May change tomorrow. Lol
Romla
Member
8 years ago
I did not know what a McGrath nurse was and still don’t really.I am grateful for the help the Cancer Council. this blog and a local support group supplied but just wonder where I would be if I didn’t find them myself.
Romla
Member
8 years ago
Whilst I have a wonderful surgeon and was treated with great kindness during treatment once radiotherapy finished I felt somewhat cut adrift .I went in the private system as we had paid a fortune for top private health cover for many years and I did not want to take a bed from a public patient.However Ihave learnt subsequently from others of the after care they had received in the public system. I did not know what a breast care nurse was apart from a woman on the day of surgery who gave me a bagful of literature to read and a too big free bra which I did not need as I had purchased post op bras from Target.TBH at one point I was in real trouble and lost.I would have appreciated the support others have had in the public system as I had to find it for myself.