New and just diagnosed with TNBC

This discussion was created from comments split from: Triple Negative.
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  • Heathy78Heathy78 Member Posts: 5
    Hello - I’m new to this forum and was just been diagnosed with Triple Negative Breast Cancer in early November. I’ve had a lumpectomy just over a week ago which removed the lump (18mm) and six nodes which were all clear. All other bone and CT scans and full bloods were clear too. The oncologist has now recommended chemo starts in just over a week. 
    I’m interested in how people came to decide whether to do chemo or not. It’s obviously the most effective treatment the medical professionals have at the moment, but it also has some long term side effects. I’m told that without chemo, I have a one in five chance of reoccurrence, and with chemo it only reduces to one in ten. This seems like a small improvement for potential quality of life impacts. 
    Is there any one out there with a TNBC diagnosis who didn’t have treatment? Any questions that people asked that helped them to decide? I’m struggling to weight up the risks! 
    Thank you!
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,149


    Welcome @Heathy78 ; sorry you have need to join us. I had TNBC and have bilateral mastectomy and chemo and rads. I am now over 6yrs and NO evidence of disease I chose that knowing there could be side effects. 



    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

     

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html


  • Heathy78Heathy78 Member Posts: 5
    Thank you @SoldierCrab

  • AfraserAfraser MelbourneMember Posts: 2,227
    Hi @Heathy78
    if I read your post correctly,  chemo will reduce your chance of recurrence from 1:5 to 1:10? That seems quite a bit to me. We always think of being in the bigger number - if 80% don't get a recurrence, what am I worrying about? But what if you are in the 20%? I didn't have TNBC, and had a mastectomy so circumstances are different. Yes, you can have long term side effects - I have one definitely attributable to chemo and one partially. Neither affects my life to any great degree. Yes, it would be nice to be without them and no, I don't know if chemo will keep me clear of a recurrence but 6 years on, I have no regrets. I have done everything I can to keep myself free of cancer and I can manage the side effects without altering my life. Ultimately it's your decision so a) be happy with what you choose and b) recognise that living with risk is a part of life, none of us  knows what the future may bring. It may of course be very good and that's what we should focus on. Best wishes.
  • kmakmkmakm MelbourneMember Posts: 6,840
    Hi @Heathy78, and welcome to the forum. I'm sorry you've had to join us.

    Like @Afraser, I think those numbers you've been given, chemo improving the odds of a recurrence, are substantial. Have you been told what sort of chemotherapy you'd be given?

    I underwent a genomic test on my tumour to see whether chemotherapy would have a curative effect based on my chances of a recurrence. Have your doctors talked to you about whether this is an option for you? They are expensive and sometimes doctors hesitate to raise them because of that.

    For me what it boiled down to was could I live with the regret, the 'if only', if I chose not to have chemo, and had a recurrence. I knew I couldn't so I threw the kitchen sink at my cancer. If it comes back (it did for my sister), it comes back, but I know there's no more I could have done, and that gives me some peace of mind.

    Good luck with your decision, and do let us know what you decide. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 3,865
    It sounds like quite a difference to me as well.  And do remember that while you would never describe chemo as fun, for most people it is nowhere near as bad as what they expected.  While some do have a hard time, others are able to get on with their lives throughout.  A lot of us fall somewhere in the middle, with good days and bad but we do get through.  Having been one of those in the middle, I'm glad it's over but I'm glad I did it.  Whatever happens, I won't be looking back and saying, "What if I'd done it?"  Our @allyjay posted this a while ago and I have referred to it a few times as I think it puts things so well:

    "Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer.  We were all told to have such and such surgery, which  we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were  allowed to leave the room  and go next door  for a celebratory cup of tea and slice of cake....considered cured  (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I  forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the  others". If, perchance I was one  of the 100 left behind to the future of stage four, would I  wish that I might  have been one of the other 70, or would I go "Que Sera  Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if  the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. Having started chemo, you can always stop. But it doesn't work the other way."

    Whatever way you go, it is your decision.  Good luck.
  • Heathy78Heathy78 Member Posts: 5
    Thank you everyone for your thoughts and comments, it certainly does help to hear from others. 

    I’m not too concerned about the short term side effects of the chemo - I’ve been recommended four doses of AC and four doses of Taxol with two week intervals - it will be fairly intense but I know I can get through that with support. That would be followed by 20 radiation sessions. I have an awesome support network around me.

    I’m mostly worried about the long term side effects of increased cancers - I’m only 40 and if I live the rest of my expected years to 86, that’s a lot of years to worry about new cancer (or as they say - post-chemo cancer)! 

    I’m super healthy, fit and strong. Maybe that is giving me a false sense of confidence that I will be okay!!! It certainly didn’t stop me from getting the lottery of TNBC in the first place! I will be getting the genetic tests done early next week too - so that might give me a better sense. 

    Lots to absorb - I’m meeting with my breast care nurse this morning - so will ask about the other test mentioned above which might help me decide. Also meeting with an oncology naturopath tomorrow. Waiting to get an appointment to see my psychologist this week too. 

    Thanks - any further comments are most welcome! You are all so amazing with your journeys and for sharing your wisdom. 
  • arpiearpie Mid North Coast, NSWMember Posts: 2,510
    Great news that your nodes were clear @Heathy78 .... always a good start.  

    As the girls have already said ... you’ve just gotta throw the whole lot at it and then you know you’ve done your best.  

    Being fit and healthy definitely helps with coping with the treatment .... just keep yourself busy doing what you love doing, even thru the treatment if you can.  It will help keep you sane!  ;)

    I was like you ... false sense of security, no BC in the family history ..... I’ve kick started it!  :(

    Both my sisters in law’s Mums had it 30 years+ ago and they are still kicking ..... we just have to do what we can to do the same.  ;) 

    all the best best for your next meetings xx
  • DeanneDeanne Sunshine Coast QldMember Posts: 2,078
    Hi @Heathy78
    I am so sorry that you are facing these types of choices. As the other ladies have said, Chemo can make a significant difference to your chance of recurrence and you have the numbers for your particular situation.

    What might be helpful is to consider this alongside the statistics for the chance of a second (chemo or radiation caused) cancer sometime in the future. Ask your doctors for this info.

     As I understand it, the chance of this is very small. My oncologist explained to me that I was in far more danger of a recurrence from the cancer I already had than treatment causing another cancer sometime in the future.

    I was 47 at diagnosis, had a mastectomy, chemo and radiation. Almost 6 years later, no recurrence or any sign of a treatment caused cancer. I am very fit, strong and healthy but know that while it gives me a good quality of life (and helps minimise side effects of treatment), it was not enough to stop me getting cancer in the first place. Having the treatment my doctors recommended gives me the best chance of staying cancer-free. 

    Ask for the statistics on treatment caused cancers. You need all the info before you can make the best choice for you. Take care. Deanne xxx
  • Jen029Jen029 MelbourneMember Posts: 15
    I have also been diagnosed with TNBC recently, have had a lumpectomy and sentinel node biopsy. The nodes were clear as well as all the other scans. I will be starting 3 months of chemotherapy next week which will be followed by 5 weeks radiation therapy. I just feel that although there will be the side effects to deal with, it will give me some peace of mind that everything has been done to reduce the risk of a recurrence.
  • TeePeeTeePee PerthMember Posts: 30
    I'm sorry you had to join this group.

    I was diagnosed with multifocal ductal invasive carcinoma Triple Neg in August, just over 3 months ago.  The biopsy found it was also in my nodes, and ct scan and bone scan shown it had no spread anywhere else. I had a single mastectomy and lymph node removal fairly quickly

    I am a single Mum with 3 kids who depend on me so chemo for me was a no brainer - I'm prepared to do everything and anything that is offered so I survive this.

    I've ve just had my 4th and final AC fortnightly chemo dose yesterday. I am one of the lucky ones, I've had very little side effects - no nausea, just a few issues with my bowels, a bit of reflux and fatigue. Generally I rest for 2 days after chemo (self informed as I have a tendency to over do things) then I'm back at it.  

    In in two weeks I start my next round of paclitaxel every week for 12 weeks and carboplatin every 3 weeks.  Following that I'll have a 3 week break then 5 weeks of radiotherapy....then I'm done.

    When I first met my oncologist she said with surgery the cancer was all removed and essentially I was cured of cancer. Chemo buys you 'insurance' to kill any strays that might be floating around and to help protect against it coming back. I found this reassuring, and when my hair fell out and when I had some annoying side effects I took this as signs that thepdrugs were working and doing what they were meant to.

    I willingly agreed to all of this as there are lots of new awesome drugs out there for hormone positive cancers, but of course none of those work for Triple Negative, so I felt these were my only treatment options.

    One of my best friends was diagnosed with Triple Negative during her pregnancy and had similar treatment to me, and she's fighting fit with no reoccurrence 7 years later. She is my insoriation that I can beat this, and really I haven't really given any thought to the fact that I won't.

     I've had the genetic testing an waiting for the results but lots of interesting discussion was had. I learnt that while Triple Negative in the short term is not great, the long term prognosis is excellent and the risk of reoccurrence and other cancers are lower.

    Good luck with your decision.
  • CaccalCaccal Member Posts: 12
    Thank you ladies. This thread is really helpful ro me too xx
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 116
    Hi Heathy 78, I’m with TeePee, I’ve also been diagnosed with triple negative and I’m with her.
    Ive spoken with a few ladies that have also had triple negative BC who are now 6 years plus cancer free. 
    The choice is yours but I know I will be doing what ever it takes to give me the best chance to be another one cancer free.
    We are all here for each other ❤️
  • Heathy78Heathy78 Member Posts: 5
    Thanks everyone! 

    I’ve had a really positive meeting with an oncology naturopath. She has written me up a treatment plan to compliment the chemotherapy and radiation and to try to limit the side effects but also the long term impact on my immune system. 

    I think if I reframe the treatment from ‘just’ being the chemotherapy which doctors prescribe, to a more comprehensive plan that includes chemo as one of the many options, then I feel more comfortable. I’ve also weighed up the odds, and it looks like the long term side effects have lower odds in some cases than the general population! e.g. a 1% chance of getting lung cancer as a result of radiation but the general population has a one in six chance of getting cancer. 

    The good thing is that the naturopath can work to specifically lower inflammation through diet and herbal remedies. I’m also doing Yin Yoga and meditation, as well as a reduced strength and conditioning program in the gym (which I normally do). 

    I’m feeling more comfortable as the days go by!!! 
  • kitkatbkitkatb Member Posts: 349
    Hi @Heathy78 ; Good luck with everything. Sounds like you have a plan of attack which is great.  Just  keep in mind you have to be flexible to everything once chemo starts, even some foods you are used to eating you might find you can't tolerate anymore.  Everyone is so different to their reactions to treatment whereas some continue to work and others like myself where incapable of working. Just let your medical oncologist know exactly what your naturopath has prescribed to you as I know I was advised that some alternate remedies are not compatible with some of the chemo drugs as they reduce the effectiveness.   I found meditation and gentle exercise great on my good days. Let us know how you go and be kind to yourself. Hugs  xox
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