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Newly diagnosed - Triple Negative Treatment

MishcatMishcat Member Posts: 4
edited May 21 in Newly diagnosed
Hi everyone,
I was diagnosed with Grade 3 IDC - TNBC 3 weeks ago and had surgery to remove it last week.  I have been worried about the TNBC part of my diagnosis. I would like to believe that I have been extremely lucky to have caught it very early and found the 12mm tumour quickly.  Some of my results from surgery came back today and my surgeon confirmed that the margins were clear and the two sentinel nodes they removed were also clear.  Even though it hasn't been said to me, I figure (??) that this might mean it is at Stage 1?
The surgeon said that he will send me to a consulting oncologist to discuss these options but made a comment that perhaps chemo would be something to consider.
 I feel like I should celebrate but I am also conscious that there are next steps in my treatment and wanted to ask has there been any other ladies out there that have been in my position and what treatment was offered to them.

 I haven't had any gene testing but since all this happened some stories have come out of the woodwork about my mothers aunty's having had breast cancer on both her mother and fathers side and my mother was diagnosed with ovarian cancer 6 years ago at very early stages when they took out her ovary and fallopian tubes and found it incidentally. lucky break! 

Sorry for the long post..just this stuff has been doing mind miles in my head! 

thank you in advance for any time you give to my question

Comments

  • Dory65Dory65 Member Posts: 228
    Hi Mishcat,
    My diagnosis was different from yours, but the following suggestions apply to all newly diagnosed with BC, in my opinion.

    Staging has to do with the tumor size, grade and speed of cell division, amongst other things. You need to understand your pathology report(s). My surgeon was very good at explaining it to me. I hope yours is too. I encourage you to be your own advocate. No one else is going to co-ordinate or cross-check information. You will be in the hands of three different departments. Surgery, oncology and radiotherapy. I am very glad I followed advice to get copies of ALL test results and pathology results and my GP later gave me copies of the letters from the surgeon, medical oncologist and radiation oncologist. These contain concise summaries of the diagnosis. I went entirely through the public system and have been very well looked after. However, one medical oncology intern made a serious mistake which I was only able to pick up because I knew my own pathology results. Anyway, I take my folder with me to every appointment now, just in case. Doing research and organising my data helped me calm my racing mind. Just keep to reputable sources and medical journals. I read Breast Cancer: Taking Control and DCIS: Taking Control by Professor John Boyages. Others have recommended The Complete Guide to Breast Cancer, How to Feel Empowered and Take Control by Trisha Greenhalgh, Dr Liz O'Riordan. Also see http://liz.oriordan.co.uk/ blog by Liz O Riordan, who is a UK based breast surgeon with breast cancer. Professor Boyages is based in Sydney. His books are excellent.

    Best of luck.x

  • YellowRobinYellowRobin Northern Rivers NSWMember Posts: 47
    Hi @Mishcat We have very similar diagnosis. I’m stage 1b grade 3 IDC TNBC. I had my op in February, clear margins and nodes all good. I’ve just had round 4/6 chemo to be followed by radiation. Your surgeon should give you a copy of the diagnostic report. Mine is 3 pages. First page is a summary but on the last page it has a line “prognostic stage” which has my staging. It’s easy to miss. I’m happy to answer any questions or just listen if you want to PM me. I haven’t stopped questioning and researching myself because I really want to be informed. 💕🌸
    Have you joined the TNBC Aust and NZ Facebook group?
  • MishcatMishcat Member Posts: 4
    edited May 20
    Hi YellowRobin, 
    Yes I am the same, lots of questions my brain is like a buzzing behive.  I don't even know who my oncologist is yet. I meet with my breast surgeon tomorrow for post surgery discussion.  I have joined some TNBC facebook groups but I don't know if they are Aust and NZ.  I have also just found out that my family has a history of BC in most if not all of my mothers aunty's and my mother had ovarian cancer 6 years ago which they found incidentally when they removed her ovaries and fallopian tubes.  So I am thinking that genetic testing might be wise as well.  When I first went to the surgeon he said that it was just 'ordinary breast cancer' and that it was 'imminently fixable'...I'll put that down to his warped sense of humour lol 
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 281
    Hi Mishcat, welcome to this very informative forum.
    I was diagnosed in October 2018 with Triple Negative BC, grade 3, my tumour was 25mm from pathology report after surgery.
    I had a partial mastectomy with clear margins and clear sentinel nodes.
    Looks like they caught it very early which is fantastic news.
    I received 4 doses every fortnight of dose dense AC, then 12 weeks of Paclitaxel , then 30 rounds of radiation. Finished treatment October 2019.
    First yearly mammogram after diagnosis and treatment in December 2019 All Clear....., just had my next 6 month check up after mammogram, all good.
    You have got this....

    Speak to your surgeon with all the new information you have of cancer in the family, they may suggest gene testing. 
    I live here in SA, not sure what state you are in. I’m happy for you to pm me privately anytime if you want to talk or discuss anything.
    I have been through the journey that you are about to start, and I found it comforting to talk to others that have been there and can give you some information that could be helpful and comforting.

    Im here if you need , sending hugs xx
  • MishcatMishcat Member Posts: 4
    Thank you Shellshocked2018!
    Yes I gather it will be a big journey in front of me but I'm doing ok.  I figure it is a drop in the ocean of my life. 
    Can I ask, did you work during any of your treatment.  Of course I suspect working through chemo wasn't on the board. 
    Thank you for your positive message :)
  • AfraserAfraser MelbourneMember Posts: 3,190
    Hi @Mishcat

    Forgive my jumping in but a number of us on this network worked through chemo. It’s certainly possible but unfortunately you have no real way of knowing till you start chemo. Reactions vary immensely - some are really made ill by chemo and can do very little except hoard their limited energy for what matters most to them. Others have very few side effects and live pretty normally (I was in that category). The majority are somewhere in between. I took a week off for surgery, then worked through chemo (public events), no radiation and was able to do so with little disruption. It’s a lottery. Best wishes. 
  • MishcatMishcat Member Posts: 4
    Thank you Afraser,
    I understand that everyone experiences it differently and your right there is no real way of knowing until I start.  I think I will just play it as it comes and see what I'm up to in the moment. I think that is the best I can do. 
    x
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 281
    Hi Mishcat, I didn’t work through any of my treatment.
    I was fortunate enough to be at home.
    I couldn’t have worked through my chemotherapy treatment, but I could have worked through radiotherapy if I needed to. 
    With radiotherapy you can arrange to have your treatment before work or arrange it to be done on your way home after work, they are quite flexible with their hours.
    If you request for certain times they try their best to make that happen for you.
    I hope you treatment goes well for you . Xx
  • WeenWeen Member Posts: 19
    Mishcat
    I was diagnosed with Grade 3 TNBC mine was 14mm with 2 lymph nodes with cancer cells present. It is really overwhelming when you first get told. My Doctor also ordered a Pet scan just to check the rest of my body. Hopefully by now you would have seen your Oncologist and have news of your next step in your treatment. I’ve had intense Chemo every three weeks for four rounds. Now into my second round of Paclitaxel. I will have this for twelve weeks. I was advised to have Genetic testing so am expecting the results in the next week. Please make sure you take someone with you each time you go to the Doctors. I have a friend who writes everything down, it was incredible how much went over the top of my head. Hopefully you will have lots of support just take one step at a time. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,288
    hi Ladies this is a group that I help Admin on facebook for TNBC 
    https://www.facebook.com/groups/1166665270079659/
  • AhnnAhnn Member Posts: 42
    Best of luck @Mishcat with all your appointments.  Certainly consider genetic counseling and testing and provide as much information as possible from both male and female family members.  In females the mutation presents as both breast or ovarian cancer, in males it is linked with prostate cancer. Despite a high number of relatives on my mother's side with these cancers, I was just unlucky to get it. Some peace of mind for my children. 
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