Forum Discussion

Colleen63's avatar
Colleen63
Member
14 years ago

Hello from Brisbane

Hello and I am another who was diagnosed with a Phyllodes Tumour which was removed in July of this year.  Thanks Katie for forming this group as I think it might be good to communicate with others with this diagnosis and recovery.  I had reconstruction done at the same time as the surgical removal of my very large tumour which was the size of a guinea pig!  The wound itself has healed well but the reconstruction is slow and still very tender.  For weeks I suffered broken sleep with an inability to get comfortable in bed and this is less now but still woken if I lay too heavily on my side.  I was 63 when diagnosed and since turned 64 yrs of age.  Tiredness has been a big frustration for me as I am used to having very full and busy days and still try to do this and find I even wake up tired some days!  I would like to meet up with anyone in this group in the Brisbane and surrounding areas. 

 

 

 

10 Replies

  • katie76's avatar
    katie76
    Member
    14 years ago
    True time is precious!!!! Will let you know the outcome of my check up. Have a nice time at morning tea.
  • katie76's avatar
    katie76
    Member
    14 years ago
    True time is precious!!!! Will let you know the outcome of my check up. Have a nice time at morning tea.
  • katie76's avatar
    katie76
    Member
    14 years ago
    True time is precious!!!! Will let you know the outcome of my check up. Have a nice time at morning tea.
  • Colleen63's avatar
    Colleen63
    Member
    14 years ago

    Thanks Katie and fingers crossed that all will be well for you on the 12 month check up and that you continue to progress after your surgical roundabout.

    Will consider the Sarcoma test but I was surprised at Ung's attitude so evidentally if it is not relevant to us in as much that it will help us he is not interested?!  The next generation is not his concern and to have discussed it means precious clock ticking time so they are not going to do it.

    Let us know your outcome.

    Cheers

    Colleen

     

     

  • katie76's avatar
    katie76
    Member
    14 years ago
    Hi Colleen, the gene test is actually a patient driven research project to find a cause and maybe even find appropriate treatments for sarcoma (they need at least 1000 people with a sarcoma diagnosis and phyllodes is a sarcoma). It is all in the name of research - the only way to find things out for some of these rare conditions is to research the people that actually have or have had the disease - surely a professor can appreciate this! It won' t probably help us but it may help someone in the future could be my children or grandchildren you justnever know. The bonus of the tests is that you also get to find out little bits of information about your gene profile - which is interesting if nothing else :). However I can also understand that research is not something everyone is keen on - I think my health professional background however makes me interested in this kind of thing. Anyway all good here - I have an ultrasound for my 12 month checkup post mastectomy in a bit over a week so lets hope all is good. Hope everyone is well and enjoyed their christmas and new years with family and friends. Best wishes. Katie.
  • Colleen63's avatar
    Colleen63
    Member
    14 years ago

    Hello Katie

    Good to know there are two of you here in Brisbane, would be happy to meet you both.  Tiredness has been one of my biggest frustrations. 

    I fell asleep the other day late afternoon thinking I would snatch a few minutes just to lay on the bed before dinner time.  I awoke with my husband bent over me and I said 'what day is it and are you off to work?'  He laughed and said he had just returned home and it was now 7pm!  Wife of the year award I dont think so  but some of you might identify with this.  Just overdoing things and forever in catch up mode lately.

    Nice to hear from you and Lynn I will make contact again, appreciate your contact too.  This week has been extra busy and I have a Christmas Lunch tomorrow, will try and phone you again.

  • Colleen63's avatar
    Colleen63
    Member
    14 years ago

    Hello Katie

    Good to know there are two of you here in Brisbane, would be happy to meet you both.  Tiredness has been one of my biggest frustrations. 

    I fell asleep the other day late afternoon thinking I would snatch a few minutes just to lay on the bed before dinner time.  I awoke with my husband bent over me and I said 'what day is it and are you off to work?'  He laughed and said he had just returned home and it was now 7pm!  Wife of the year award I dont think so  but some of you might identify with this.  Just overdoing things and forever in catch up mode lately.

    Nice to hear from you and Lynn I will make contact again, appreciate your contact too.  This week has been extra busy and I have a Christmas Lunch tomorrow, will try and phone you again.

  • katie76's avatar
    katie76
    Member
    14 years ago

    Hi Colleen, I am in Brisbane and so is Hellen. Hellen and myself met and walked in the mothers day classic in May of this year.  It would lovely to meet up with you. Where did you have your surgery? I hope that things settle for you soon and you get your energy back - it is a very tiring process. Please keep in touch. Katie x

  • Colleen63's avatar
    Colleen63
    Member
    14 years ago

    Thanks Lynne, noted your details this week and read article in the Beacon, will contact you.

  • Lyn11's avatar
    Lyn11
    Member
    14 years ago

    Hi Colleen63, We aren't anything to do with Phyllodes but we are a support group in North Brisbane and you would be very welcome to come to our get togethers any time. Our group is called Strathpine Coffee and Chat so look us up and if you are interested contact me and we will make arrangements to meet.

    regards,

    Lynne