Newly Diagnosed

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  • kmakmkmakm MelbourneMember Posts: 7,592
    And you too @SamJgS, how's radiation going? I hope you're allowing yourself to have all the emotions and not worrying too much about being The Good Patient...
  • shannshann Member Posts: 68
    Same old same old.  The took me off the pico pumps last Tuesday as all looked good and asked to come back next Friday.  I was back at the hospital today as the right had tripled in size again and the left had got bigger and deeper.  My surgeon came and his response  was "Oh  Sh.." and said I have no answer.  Back on with the pic pumps again.  I have now done some more research and going to my GP on Monday and get some blood tests into auto immune diseases and then then a referral to a specialist to do with this and Infectious Diseases Specialist Physician, Microbiology that has been recommended to me by someone who has had the same problem last year.
    The hospital said see you in 7 days and I just laughed ....
    Thank you for asking @kmakm. x

  • kmakmkmakm MelbourneMember Posts: 7,592
    Fingers crossed for you @shann.
  • JSNJSN BrisbaneMember Posts: 34
    Two radiation treatments done.  The planing and first treatment had me feeling overwhelmed but the second treatment was fine.  I think it was just the new experience thing.  Another new experience to process. 
    I have a counseling appointment lined up, been seeing a chiro and had a massage.  I think I have also found a new hairdresser.  I have white/grey peach fuzz and is is growing longer on the sides so I think I will need a haircut very soon!
  • kmakmkmakm MelbourneMember Posts: 7,592
    @SamJgS Progress on all fronts! Huzzah! I have a massage booked for Thursday. SO looking forward to it.
  • JSNJSN BrisbaneMember Posts: 34
    Yes lots of progress. It feels slow because its all spaced out.  I think I am just very impatient!  When I had a massage I had to lay a certain way where the port on the left and the port on the scar on the right where comfortable! What is your story if you don't mind sharing? Where are you along in the process/journey?
  • JSNJSN BrisbaneMember Posts: 34
    Yes progress on all fronts but it feels really slow. I am just impatient! When I had my massage I had to be careful of the port on the left and scar on the right! I just read your story @kmakm.  Sounds like you have alot to process and do, I hope there is good support around you. And of course the chatty chats on here!
  • kmakmkmakm MelbourneMember Posts: 7,592
    @SamJgS Yes, I am very frustrated by the halt it has caused in my life. I had a lot of plans for this year but they're all out the window now.

    Thanks for reading my story. It's a bit of a saga... I put it up front otherwise I find myself retelling a lot. I didn't see your initial question as you didn't use the @! It took me a while to get the hang of this site.

    It's been difficult for me to accept help. I am the one who normally helps everyone else! But it was the first lesson that my own BC taught me. Accept it when offered. Every medical person I saw urged me to, and then my friends. So I have. I won't pretend it's been easy though. Nothing about BC is easy. I have a good counsellor, a lovely GP, an incredibly kind breast surgeon and my oncologist seems on the ball. It's only my plastic surgeon who lacks in bedside manner. He has all the charm of a plastic bag. But I don't need him to be my bff, I need him to make me the best fake boobs possible, and I am assured that he is technically brilliant and the best there is. That'll do! And we'll see... K xox
  • JSNJSN BrisbaneMember Posts: 34
    Sounds like you are doing the best you can with what you have been dealt with-like us all.  BC caught me totally by surprise.  My grandmother died of BC but other than that no significant history. I lost my father to bowel cancer at 51 so maybe there is a link there.  None of it really matters I guess now that I am 'in' the situation. I also had lots of plans just before being diagnosed-house renos, travelling.  The surgeon told me it would be a year out of normal life. Diagnosed late July and then surgery, chemo and radiation (just started).  One thing that is now really annoying me is no eyelashes or eyebrows.  I think I would manage bald/semi bald better if I had eyelashes and eyebrows! Very impatient to have some hair, or at least hair that looks like real hair.  Right now I have this soft white fuzz, thicker on the sides and thin on top.  I guess I could aim for a comb over?! Sometimes I think I shouldn't complain and then I think check in with reality and put it into context.  Yes get the best fake boobs you can!  My next step is genetic counselling to assist me in making that decision.
    Take care..
  • kmakmkmakm MelbourneMember Posts: 7,592
    @SamJgS I found genetic counselling to be interesting. I spoke to a geneticist at Peter MacCallum who had all my sister's tests in front of her. They were only done three years ago and as no new tests had been developed since then, they didn't worry about testing me. We had a long chat and she sent me some very clear and informative information. It included advice for my remaining sister, and my daughter and niece. Thorough!

    Bowel cancer in my family too ☹ When this is over I'll have to get a colonoscopy...
  • SisterSister Adelaide Hills, SAMember Posts: 4,405
    I'm about to go the genetic counselling route as well ( not sure exactly when) and not sure what they're going to be able to tell me.  My only sibling died got bc at 32 and died at 45 but other than that, cancer is further afield that I know of.  Due to the generations being totally screwed up in my family, I don't know what the primary causes of many of the ailments were.  Eg. I know my auntie was addicted to medicinal morphine but why?
  • JSNJSN BrisbaneMember Posts: 34
    So far my oncologist has advised that genetic counselling only comes back positive in 5-10% of cases.  She stated that a big consieration is the implications for relatives in terms of insurance (i have two teenage daughters)-income protection, life insurance and rather than a bilateral mastectomy having ovaries removed.  So I will be asking the geneticist about all of the above!!! 
  • annsanannsan Member Posts: 46
    Hi @SamJgS I am newly diagnosed TN BC.  I am to be tested for the BRCA gene and my Oncologist said the same as what yours did about genetic testing.  I read that you had a massage.  I have been wondering if it is ok to have a massage whilst undergoing chemotherapy and if so is there a particular type of massage that is better under the circumstances? I will be commencing chemotherapy shortly and will have a port -a-cath.  I live in Brisbane on the north side.  Thank you and I have found your posts to be interesting and helpful along with @kmakm
  • JSNJSN BrisbaneMember Posts: 34
    Hi @annsan the massage I had was just a relaxation not remedial or deep tissue.  Very gentle.  My oncologist suggested finding a oncology massage therapist.  I did have to find a position that was comfortable due to the port and scar.  I had the massage when chemo finished and before radiation started which I am now 5 / 20 fractions through.  The massage was so nice.  During treatment-sitting alot and not doing any activity my posture became so bad from tension and stress related to it all.
    Maybe ask your oncologist.  I have worked out this a well trodden path and there are many services and support.  There are a few places around Brisbane that offer a kind of 'BC treatment recovery' service with access to multiple services such as physio, nutrition advice, counselling etc.   I hope the beginning of treatment goes well.  xxxooo
  • kmakmkmakm MelbourneMember Posts: 7,592
    Thank you @annsan. I asked my breast care nurse for a masseur recommendation. She did some careful research and found a wonderful woman who I now see regularly. It's very gentle but somehow miraculous! I walk out feeling very different from when I arrived. She says she's waking up and resetting my nervous system. Go for it, but definitely get a recommendation from one of your team.
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