TNBC & question re chemo

ScaredycatScaredycat Member Posts: 46
edited April 1 in Newly diagnosed
Hi, I was recently diagnosed with tnbc on 7th march. I’ve since had a lumpectomy & a few lymph nodes removed for biopsy. My tnbc was 12 mm, the lymph nodes clear but I think the margin behind the tumour was only .6 of a mm.
At my post surgery appointment, it was suggested that I may not need chemo & the doctor thought that I may need further surgery to test more tissue or go straight to radiation. His decision isn’t final as the medical team will be discussing my case late next week.
 I’m a little confused as I thought that chemo was pretty much mandatory for tnbc. Has anyone ever heard or had any experience of tnbc not being treated with chemo? 

Comments

  • kitkatbkitkatb Member Posts: 441
    Hi @Scaredycat   Welcome to the forum but so sorry you have to be here.  I was TNBC and right from the beginning I was told chemo was a no brainer    ( I'm sure someone will jump in presently with some advice )  I know treatment is so individualised now and it might be a good question to ask your breast care nurse or surgeon. Ask as many questions you need to to get a full understanding of your situation.  ( no question is too silly ) and definitely take some one with you as a support system as our brain or at least mine was on overload with so much information at the time.     Also I thought the international guidelines for margins was 2 mm.  My initial surgery had a margin of 1 mm on one side only and even though my surgeon was okay with this he got out voted at the team meeting and I had to go in for a re excision to go over the 2 mm.   As it turned out they found high grade DCIS so I ended up with Mastectomy.  But you might just want to clarify that as well.
    The waiting just sucks but try to keep yourself occupied. ( Yep I know easier said than done )    Hope you are recovering well and getting pampered rotten.   I wish you all the luck.  Let us know how you go with the results.  Big Hugs . xo
  • kmakmkmakm MelbourneMember Posts: 7,664
    Re margins, for what it's worth, my BS said a margin is a margin, be it as little as one cell. He said that 2mm was accepted as the standard but that in the USA they mostly work on a 1mm basis. I queried all of this because he kept saying "small but clear margin" about my re-excision. K xox
  • kitkatbkitkatb Member Posts: 441
    Yeah its a strange one isn't it @kmakm  as mentioned my surgeon was quite happy to go with the 1 mm ,  I think he was quite put out with the decision as he commented on it  again to me he would have still been happy with the lesser amount.
    Its hard to fathom the measurements they talk about isn't it especially as you mentioned even one cell between is a difference.
    have an awesome day.everyone.   Am heading to work to do my 4 hours this morning. feels really strange.   xo
  • ScaredycatScaredycat Member Posts: 46
    Thank you both for your information & experience. I didn’t know that there was an international standard. The team meeting will be interesting this coming Friday.p but I won’t know the outcome until Thursday next week. The waiting is the hardest part.
     I’m going to see my GP today to have a chat about it as well as getting another script for thyroxine & possibly a blood test as my hair has been moulting again lol  ....... I had a total thyroidectomy a few years ago. 
    I’ve also found a painless lump in my upper arm on the opposite side of the tnbc. I’m hoping it’s just a lipoma & nothing serious. I’ll show it to the hospital on Thursday week as well as my GP today. I’m actually weirdly calm about everything even though I do suffer from anxiety/depression. 
    I hope everyone has a great day today.
  • kmakmkmakm MelbourneMember Posts: 7,664
    You too @kitkatb and @Scaredycat
  • ScaredycatScaredycat Member Posts: 46
    Update, I saw the chemo oncologist last Thursday who wants to go overkill as he said we only have one shot at it. I also have an appointment on Tuesday with the radiation oncologist & then the post surgery appointment on Thursday ..... ahhhhh. 
    The multidiscipliary meeting was Friday but I don’t know the outcome yet. 
    The waiting & the unknown is painful but can’t be helped. I feel like I’m in limbo. I guess we all feel like that at times with this journey.
    They can’t tell what the lump is in my arm from the scan but the chemo oncologist said they would repeat the scan in a few months as well as my lungs as I have a couple of small nodes. 

  • kmakmkmakm MelbourneMember Posts: 7,664
    Go hard or go home eh! I threw the kitchen sink at my cancer SCat. Trust your team and let them have at it. They know what they're doing. Keep your eyes on the prize, a cancer free life. We've got you. Big hug, K xox
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