New and just diagnosed with TNBC

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.

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

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

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. 

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.

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

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.

Thank you @SoldierCrab

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!