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Treatment decisions-Triple negative

FeathersFeathers Member Posts: 16
edited June 2020 in Newly diagnosed
Hi everyone
I was diagnosed with triple negative, stage 3C breast cancer in October last year. Initially I had a lumpectomy with sentinel node removal. As there were no clear margins and cancer in the nodes I then had a mastectomy and nodal clearance. I had cancer in 14 out of the 31 nodes that were removed and locally advanced. 

I have finished my AC dose dense drugs and the Paclitaxel standard care treatments. In addition to this I opted to take Carboplatin with the taxel as it had the potential to have some benefits but due to low neutrophils I missed the last dose. I start my radiation therapy tomorrow. 

After radiation therapy I will have to decide whether to continue my chemo by taking another drug called Xeloda or Capecitabine. Again there is some potential to be of benefit but not clear cut and was told not to expect definitive advice on whether I should or shouldn’t take it. 

I am hoping to hear from others who are in the same situation and have had to make that decision themselves. 
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Comments

  • Blossom1961Blossom1961 Regional VictoriaMember Posts: 1,951
    Hi @Feathers I am no help as my BC was totally different. However, I wanted you to know I am sending hugs your way as you contemplate your next step. Hopefully someone will get on here soon who can help.
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 790
    Hi @Feathers, Also sending hugs your way.  I am still having AC dense drugs and will have paclitaxel after that so I am interested to hear what is suggested for you.  Wishing you well.  xxx
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    edited June 2020
    Hi @Feathers - sorry to see you here - but you are in the right spot for support and discussion on your treatment.

    I'll tag @Giovanna_BCNA to maybe add "Triple Negative" to the title, then those who've gone thru that treatment may jump on when they spot the title.

    All the best with your treatment decisions & ongoing treatment xx

    In the meantime, here's a discussion that is also on Triple Negative ....
    https://onlinenetwork.bcna.org.au/discussion/22477/triple-negative-breast-cancer#latest

  • FeathersFeathers Member Posts: 16
    Thanks for the link arpie.
    Doing some research but there’s not much out there. 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    Hi @Feathers
    If you click on this link .... it will take you to numerous TNC posts ... but remember that everyone’s case is ‘unique’ .... so try not to get too concerned, as yours may be different again.  
    https://onlinenetwork.bcna.org.au/search?Search=Triple+negative

    When you click on Discussions, there is a “search” area that you can put any words in to search for posts relating to those words. ;)

    Pall the best xx
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 283
    Hi Feathers, welcome to this amazing forum.
    I also was diagnosed with Triple Negative Breast Cancer back in October 2018.
    I had a partial mastectomy and sentinel nodes removed , pathology results were clear margins and clear sentinel nodes.

    Next step was dense dose AC every 2 weeks for 8 weeks, then 12 weekly pactlitaxel, 30 rounds of radiation.

    During my dense dose AC I was admitted to hospital with no white blood cells, during a routine chest X-ray they found under my left arm ( surgery side)  that I had a swollen lymph node, further investigation found that I had cancer cells in one of my lymph nodes.
    So once I finished all my chemotherapy I had a full auxiliary clearance under my arm, fortunately only the one node involved out of the 16 removed.

    After all my treatment I wasn’t offered any other treatment, so I’m interested in seeing what they offer you.

    I would like to tell you that I am post treatment 8 months and I’m all clear . Due for my two yearly mammogram in November 2020.
    I have spoken to a lot of other ladies that are cancer free after being diagnosed with Triple Negative BC, 2,4,6,8 years +.
    We have all got through it and we are now survivors.

    Sorry I can’t help you with your decision, as I was never offered the drugs.
    You can beat this......

    Stay positive, you’ve got this.

    Sending hugs xx
  • FeathersFeathers Member Posts: 16
    Well done you. 
    Mostly I am optimistic about my outcome but there are moments of doubt that creep in so it is really heartening and reassuring to hear about other people’s survival who have had a similar diagnosis.

    Thanks for posting.  
  • FeathersFeathers Member Posts: 16
    Hi arpie
    Thanks for the heads up about the search function, it will come in handy. 
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,995
    https://onlinenetwork.bcna.org.au/discussion/comment/187787#Comment_187787

    @Feathers
    the link above you may find helpful

    Take care and best wishes
  • arpiearpie Mid North Coast, NSWMember Posts: 6,096
    Awesome find, @iserbrown - that was the most uplifting post!! xx

  • FeathersFeathers Member Posts: 16
    Thanks @iserbrown so great to hear people’s positive stories. 

  • FeathersFeathers Member Posts: 16
     I have decided to go ahead with the Zeloda, I start tomorrow. 
    I am just hoping I don’t get many side effects but if I do, I will come off the drug but at least I can say I gave it a go. 
    I did get concerned when the pharmacist rang to organise anti nausea and diarrhoea medications. 🥺
  • JennimJennim Member Posts: 10
    Hi feathers,
    how did you go with Zeloda? 
    I had TNBC in 2013 and had 16 rounds chemo & 20 rads after lumpectomy.  I have just been diagnosed with TNBC & IPLC & DCIS in opposite breast 3 weeks ago and would love to know about any new treatments out there.
    thx
    jen
  • FeathersFeathers Member Posts: 16
    Hi Jen
    I am really sorry to hear about your new bout of cancer. Sounds nasty too. I can understand you wanting to find out all you can. You didn’t mention how they plan to treat your cancer?

     I started on the Zeloda but decided that 6 months was a long time to be on the drugs for an effect that was unknown. So I stopped it after 5 days. 

  • KellyG99KellyG99 Member Posts: 2
    Hello ladies. I thought I would just quickly post about my experience with Capecitabine/Zeloda. Oct 2019 I was diagnosed with small triple negative tumour in right breast, hadn't spread to nodes. I had chemo followed by lumpectomy followed by radiation instead of the mastectomy I wanted thanks to COVID in 2020, as Drs wanted to keep me out of hospital. In October 2020 my oncologist asked if I would be interested in taking 8 cycles of Capecitabine as there was a recent study indicating very good results with reducing the recurrence of triple negative breast cancer over a 5 year period.  The study, though, only included triple negative stage 3 that had spread to lymph nodes or beyond. So it wasn't definitive that the Capecitabine would do anything. My tumour was *mostly* dead after first lot of chemo but considered resistant. I'm just finishing up the Capecitabine tablets now, June and haven't had any terrible side effects or long term effects as far as can be seen. I have some liver damage from the first lot of chemo. I decided after some back and forth to take the Capecitabine as it might do some good with any cancerous cells that had not been dealt with by chemo and radiation and so long as it didn't seem to be doing any harm or causing harsh side effects. I didn't experience any nausea, there has been some fatigue, particularly getting to the end of the 8 cycles. If anyone with triple negative breast cancer who went on to mastectomy would like to comment or direct me to your post, that would be appreciated as that's the next thing I'm trying to decide. My surgeon considers its "probably" not necessary, more a peace of mind situation. 
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