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scarf_lady's avatar
scarf_lady
Member
11 years ago

getting my head around TNBC

Hi Girls, I'm so pleased to have found this TNBC group, as I'm still trying to get my head around my revised diagnosis to TN. Having had such a hard time with chemo I have not had the brain power or energy to read up about it until now. Hadn't even 'seen' the group until today :) 

I was diagnosed in mid July and due to agressive growth was operated on within 5 days ( left mastectomy) with no time to think about it other than gratitude for wonderful surgeon and hospital staff & breast care nurse who still contacts me each week via email and phone.  

I have just begun RT (day 4) and so far a walk in the park compared to chemo. so pleased not to have things stuck in me although I do have to have my port flushed soon!! 

I have no family history of breast cancer so will be having genetic testing for my daughter as she is very concerned. I would be grateful for any information about genetic testing as I have not gone into it but believe it is exy! 

Thank you for any thoughts you might like to share and best positive wishes to you all :)  xx

Ricki  (aka Scarf lady)

 

8 Replies

  • scarf_lady's avatar
    scarf_lady
    Member
    11 years ago

    Good luck Anne. I will be interested to hear if you do any trials too.

    hugs.

    Ricki xoxo

  • scarf_lady's avatar
    scarf_lady
    Member
    11 years ago

    Hi Gert, so sorry to hear of your latest finds. I do hope you can be treated soon & without too much discomfort. Good luck with the trials if you go ahead and look forward to 'walking ahead' with you. Ricki xx

  • ashelvo's avatar
    ashelvo
    Member
    11 years ago
    Hi Gert I'm sorry to hear your latest news. I too had pain behind my right shoulder blade. Had CT, MRI and bone scan which showed nothing. Then had a PET scan which showed the nodes in my neck, shoulder blade, sternum and some into my right lung are involved. Doc also did a needle biopsy of an enlarged node in my neck. Maybe ask for a PET scan as it can detect cancer at much smaller sizes. I am back having chemo again but its no where near as bad as my first lot. I'm interested in doing trials too but not sure how to go about it. Let me know if you find out any info. Take care Anne xxoo
  • Gert's avatar
    Gert
    Member
    11 years ago
    Hi girls, have just had my 2 year checkup brought forward because of pain in my shoulder. Mammogram and ultrasound good but full body scan showed something in the t12. Have had more tests and looks like it is in the spine and lung. Biopsy yet to be taken. Dr asked if I would be interested in trials . Anyone else doing this would like some imput thanks. Gert
  • scarf_lady's avatar
    scarf_lady
    Member
    11 years ago

    Hi Gert, thanks for the salt bath hint and the laugh about being a grease pole ;) we can always do with a laugh :)  The RT nurse stressed cream cream and more cream on my first day so I have been following her advice and used up a tube after my first 5 days....so understand your comment :) 

    Friends from Encore group have prepared me for the ongoing fatigue....you take care now. Thanks for your helpful reply and best wishes ahead ???

    Ricki

  • Gert's avatar
    Gert
    Member
    11 years ago
    Hi Ricki congratulations on passing the worst part I too found rads a piece if cake after Chemo. Was given advice of having a cool bath with Butchers salt added every couple of days. Don't know if it was this or the cream I used to the point of being a grease pole but never had any burning, this might help. Still having trouble with fatigue and forgetfulness but getting better. Hope all goes well for you. Gert x
  • scarf_lady's avatar
    scarf_lady
    Member
    11 years ago

    Thanks for your reply Michelle. I will checkout your blog ytomorrow when I'm more awake!! 

    Have been piling on the cream already, friend from Encore group gave me great advice about the cream, cream and more cream!! 

    Talk again soon.

    R ?

  • Michelle_R's avatar
    Michelle_R
    Member
    11 years ago

    There are quite a few of us here in the TNBC group - so glad you have found us.

    You have passed all the biggest milestones - surgery, chemo, and now rads -  so congratulations on how far you have come!  RT is a breeze after the others, but keep up the cream as the effects are cumulative.  I also had 28 rads after surgery and chemo, then followed up with a hysterectomy (preventative).  Feel free to read my blog posts if you want to.

    It has now been just over 2 1/2 years since my surgery, and I have made a point of keeping fit and eating as healthily as possible to stay recurrence-free.  The Fit & Healthy Group is another good one to join.

    Stay in touch and let us know how you are going.  Rads will be over before you know it.  xx  Michelle