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Cahu's avatar
Cahu
Member
9 years ago

Don't suffer in silience

hi all

I am 10 weeks post right simple mastectomy,1 of the lucky ones were the mammogram found the lump, stage 2 no nodes involved so only tomoxifan. Little worried that I have no scans or blood tests. Went private (very sorry I did), my surgeon has done a wonderful job but that's about all he did. I was going back 2 times a week after surgery to get Seromas drained from my chest wall and under my arm. At no stage did he offer advice just drained and billed me. At 1 stage I thought my breast was growing back. I had a breast care nurse but she was 1 person in a large private hospital so contact was minimal. I was sent home with very few instructions and no exercises and a lot of pretty pamphlets. Went back to full time work 2 weeks after surgery as that was the time frame surgeon gave me.

So you can see how much fun I have had, my poor GP  was pulling his hair out. Any bug that was going around I caught, I came out in a itchy red rash and my swelling was still causing major problems as well as restricted movement in my right arm and a really tight chest. My GP is a very special person and he went looking for things to help. He referred me to get the lump under my arm checked and drained and a PINC physiotherapist and my life changed dramatically for the better. I am getting lympthatic physio, have a heap of exercises and most importantly someone who knows what is happening to me physically and emotionally. Turns out I have trunk odema, cording and the start of lymphoma, which we are working on. My GP has got me 5 free visits under Medicare, apparently you can get 5 free visits to certain things each year after you have been diagnosed with cancer. So please don't do what I did and just think it's normal till you end up a blubbering mess, this is a new rehabilitation program, check out the web page www.pincandsteel.com (hope I'm allowed to put that here), has made a huge difference to me.

Cheryl

  • lrb_03's avatar
    lrb_03
    Member
    9 years ago

    Hi Cheryl. So sorry your experience has been  less than ideal. 

    I have had mixed experiences with breast care nurses. I self referred to my local one, but have never had voluntary contact from them, only if I initiate it. 

    I opted yo go to a private hospital in Sydney  for surgery. Surgeon wa s great. The breast care nurses tgere have been amazing. 7&1/2 monyhs after surgery, I'm still getting a phone call every 4-6 weeks to see how I'm going. 

    Look up th McGrath website and find your nearest breast care nurse and get in touch. They really are a yreat source of support  & information. 

    Take care, Lyn

  • socoda's avatar
    socoda
    Member
    9 years ago

    Hi Cheryl,

    Wow, talk about a rough trot!! Thank goodness you have a caring GP who is looking out for you. Is it possible for you to even get an email address from the McGrath foundation so you can have contact with a breast care nurse so you can ask questions and get answers or a phone contact. I hope that your treatment goes well and it certainly sounds as though you are progressing in a much better state and with more assistance than when you started. All the best. Xx Cath

  • rowdy's avatar
    rowdy
    Member
    9 years ago

    Hi great you live in a area where these programs run. I live in the west and the only one is in Essendon. I did start but as I work full time and have to get on the ring road to get there on a Friday night(, as this is the only time I could attend) I stopped as the traffic was terrible and after working all day it was too much. It is such a shame there is no other on this side of town, plenty on the other side. 

    When I had all my surgery as a private and patient and returning to work full time there wasn't much to offer. So happy it is working out for you