Triple Negative Breast Cancer

RosaPink
RosaPink Member Posts: 2
edited May 2019 in Newly diagnosed

Hello,

I am a
healthy (I thought) 69 year old woman and I feel as if I could live forever… I enjoy
my life, am reasonably fit and very active – I swim, go on really pleasant
bush walks with my partner, ride my bike occasionally, love to potter in the
garden…. I also eat well and am conscientious about my diet but not fanatical.
I must admit I maybe indulge in a little too much wine. Life is good!

But
suddenly, out of the blue comes a diagnosis. Triple Negative Breast Cancer,
Grade 3, but luckily found early. Those of you reading this will know what a
mind-numbing shock this is.

And with
this comes the beginning of huge decision making.

So, I have
read as much about my cancer as I can..I learn it is a particularly aggressive
little nasty (but, as I said earlier…luckily for me caught early), only 15 to
20% of people with breast cancer actually get this type… the amount of research
is also less than for the more common hormone adaptive cancer and  metastasis tend to occur sooner rather than
later.

I am also
reading as much as I can about how to strengthen my immune system eg diet,
supplements, food regimes etc. There is a lot of information out there, and
often it is contradictory.

My initial
decision was for a lumpectomy, with radiation, as opposed to a mastectomy
without radiation. First hurdle jumped….clear margins around the tumor and 4
lymph nodes removed with no cancer. A good result!

But the
chemo question still looms. The pros and cons, the weighing up of my evidence
(biopsy, surgery etc), can I take the risk, the odds%% - it’s like a gamble –
there is so much speculation involved. Did some cancer cells escape before the
tumor was removed?….absolutely impossible to know.

I’d
appreciate hearing from someone who has faced this diagnosis and have a chance
to share the experience and hear how someone else tackled this situation.

Comments

  • jennyss
    jennyss Member Posts: 1,959
    Dear @RosaPink, other network members I am sure will jump in with information and experience with triple neg breast cancer. I was a 'positive' gal: at first I thought that 'positive' meant bad! Have a look at the great post and discussion on page 2, '8 year clearance this week after triple neg recurrance'.
    Best wishes for your decisions and treatment


  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    hi Rosapink, 
    I am now nearly 7 yrs out from diagnosis and doing well. no evidence of disease. 

    if you  use facebook here is a link  of https://www.facebook.com/groups/1166665270079659/  there is a great TNBC group on there which I am part  the ladies are all lovely and we are a closed group. 
  • kmakm
    kmakm Member Posts: 7,974
    Hi @RosaPink. Welcome to the forum. I hope you find it to be as warm and helpful as I have.

    I had ER+ BC, and my diagnosis didn't automatically warrant chemotherapy. However for a variety of reasons (read my bio) it was on the table. My doctors suggested I do a genomic test. That's where they look at the specifics of your cancer to assess the likelihood of recurrence/spread. The one that is used in triple neg is called MammaPrint. These tests are not on Medicare or covered by private health insurance and so cost several thousand dollars. If you can manage the price, perhaps you coukd ask your oncologist if they think it would be useful.

    To chemo or not is a question that comes up a lot here. Find out what chemotherapy regime you'd be having, and make yourself aware of the risk factors and side effects. If you do a genomic test you'll be clear if it's warranted and the decision is a no brainer. But if you don't, then for me it comes down to the clincher question: if I don't have chemo and my cancer comes back, will I be tortured by the knowledge that I chose not to have chemo?

    There is no right or wrong. It's a perfectly legitimate decision to not have chemo. It's all about knowing yourself and what your tolerances for the road not taken are. No regrets, either way.

    All the very best, and please continue to throw out the questions and ponderings. This is a great hive mind! Big hug, K xox
  • kitkatb
    kitkatb Member Posts: 442
    Hi @RosaPink  So sorry you have to be on this forum but welcome and as others have said it is full of warm people who just get what you are going through.
    I was also diagnosed grade 3  TNBC last year ( although after saying that I was actually found hormone positive by just 1 % so still classified as Triple Negative ) 
    It isn't an easy question you ask as to whether you have chemo or not. ( It is a question bought up a fair bit on this forum though) But really only you can answer that question guided by your medical teams expertise and your own beliefs and whether you have any other ongoing health issues.  There is no right or wrong answer but I guess ultimately we have to live with the decisions we make and although we don't like to think of recurrence that little sucker is always there in the periphery. 
    I was not given the option really as they said grade 3 TNBC was an automatic chemo for me.  Everyone is different but because of the higher risk of recurrence I was prepared to throw the kitchen sink at it with no regrets and to be honest if I was given the choice it would have worried me about whether any stray cells would have escaped. ( I think I would have had nightmares about What If !!  )
    Good luck with your decision and if you have any questions or just need to vent we are all here.  Big hugs  xo
  • Giovanna_BCNA
    Giovanna_BCNA Member Posts: 1,839
    Jen029Jen029 MelbourneMember Posts: 17 ✭
    I had a triple negative diagnosis in November 2018. Had a lumpectomy then 4 lots of TC chemo and 25 radiation treatments. I was similar to you with clear margins and 3 lymph nodes with no cancer, I didn't want to take any chances with not doing chemo as I really wanted to throw everything at it. I think it is a personal decision for everyone in this crappy situation.
  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283
    Hi RosaPink.
    sorry to see you here, but you have come to the right place.
    I have also been diagnosed with TNBC in October 2018.
    Had a partial mastectomy and two sentinel nodes removed in December  clear margins and nodes, tumour was 2.5 cms Grade 3.
    Commenced dose dense A/C every fortnight for 8 weeks in February of this year, currently on week 8 of 12 Pactlitaxel
    I wanted to throw everything at this nasty disease and leave no stone un turned as I wanted no regrets down the track. Yes those nasty cells can escape as I found out personally even after
    the all clear. After an unplanned CT scan when admitted into hospital they noticed a swollen lymph node under my left armpit, which after investigation they found some cancer cells, fortunately some had already died from the chemotherapy.
    So my treatment of chemotherapy hasn’t changed, once I have finished the round of Pactlitaxel I will then be having more surgery for a full, auxiliary clearance. Once healed my next step is Radiotherapy.

    No one can make your mind up what you should or shouldn’t do.
    I didn’t even think for one second that I wouldn’t have chemo or Radiotherapy, as I didn’t want any regrets .
    This is a horrible disease, but WE CAN BEAT THIS. There are quite a few people here that are 7 years cancer free from TNBC.
    If you ever want to talk more I’m happy to send you a private message.

    Sending cyber hugs 😘


  • RosaPink
    RosaPink Member Posts: 2
    Thanks Shellshocked2018,
    Thanks for your response. Since posting l have decided to go ahead with the chemo and start tomorrow...part of the difficulty with these decisions is the speed with which everything happens. This time last month l was going into surgery and a week before that l was receiving my diagnosis. It's been a whirlwind.
    I have also been to see a Medical Herbalist who is willing to support me through this process. Me being me, l feel l need to be contributing to my healing so think this will be a good way to 'have some control'... even if it is psychological.
    My chemo is to be administered intravenously, 4 lots 3 weeks apart, then radiation. The chemo part sounds quite different to yours. It also sounds as if regular body checks for more cancer is the go after reading your experience of recurrence.
    I appreciate the contact... feel the need to talk to others in similar circumstances. How do we make contact privately? Just exchange email addresses?
    Your online name speaks volumes. Very appropriate under the circumstances... would like to hear back from you. Thanks.   

  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    edited June 2019
    RosaPink to have a private chat you can click on Shellshocked2018 above then click on message when it opens and begin chatting IF you need further help to do that let me know 
    https://onlinenetwork.bcna.org.au/messages/add/Shellshocked2018_ hopefully this link would also take you straight to a message box to inbox her. 

    Soldiercrab
  • kitkatb
    kitkatb Member Posts: 442
    Hi @RosaPink My chemo was the same as yours for TNBC   I was TC chemo for 4 lots and 3 weeks apart as well.     I understand your feeling about a herbalist but just be careful as from what has been mentioned quite a few times on this forum as well as my own Onc some herbs can counteract the benefit of the chemo drugs.  We even have to be careful after treatment has finished.  Please just ask your Onc and advise what herb supplements you intend to take.
    Hopefully someone will be on shortly to clarify.  xo
  • smokie08
    smokie08 Member Posts: 157
    Hi @RosaPink I am also TNBC I finished active treatment in Jan 2018 after being diagnosed in April 2017. My treatment was dose dense AC every 2 weeks then pactlitaxel with carboplatin for 12 weeks then surgery and radio therapy.  My diagnosis was 2b grade 3 as at least 1-2 nodes were involved. The chemo was tough but doable as I looked at it as getting rid of any nasties that may have escaped. As @Shellshocked2018_said if you ever want to chat please feel free to PM . I hope your treatment is sorted out soon so you can get it over with and get on with life (that's what my oncologist told me to do when he discharged me) I now have check ups every 6 months with the surgeon and hopefully will continue to do so with no mishaps (fingers crossed). Take care 😉
  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283
    Hi RosaPink, have just sent you a private message
  • Kellee
    Kellee Member Posts: 73
    Hi @RosaPink I was diagnosed with TNBC 12 months ago at age 51. Stage 1 Grade 3. Very first mammogram. After a lumpectomy and node removal I had 6 rounds of chemo (FEC-D) and 16 rounds of radiation. I am currently in remission. I highly recommend the Facebook site Triple Negative Breast Cancer Australian and New Zealand Sisters, @SoldierCrab shared the link in a previous message. I found a lot of information didn’t apply to me being TN and it’s been nice finding a group of women going through something very similar. I have also found the BCNA site and all the lovely woman wonderful. Try to be careful with googling TNBC it can be very dismal and often shows the worst case scenario. In fact after googling I’d return to these wonderful forums to get back some perspective as the information I’d stumble upon could be very upsetting.
  • rozbanno
    rozbanno Member Posts: 1 New Member
    Hi everyone l am new to this group and am lucky enough to be in remission after having a mastectomy in 2017. I chose not to have chemotherapy as my lymph nodes were clear. 
    Does anyone know if this type of cancer is high risk for daughters? And also whether my daughters should be having mammgrams and / or scans if they are under 40. Thanks  
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    Hello   @rozbanno I had TNBC in 2012... I was told my daughters/granddaughters should be checking their breasts monthly for changes and at Least begin Mammograms by 40 if nothing else has cropped up prior to 40.