Triple negative breast cancer

Just wanting to introduce myself.

Contemplating not having treatment for triple negative  I've posted about it in my profile and ask the Nurses.

Does any one know of someone or group for people diagnosed with triple negative breast cancer who have said no to treatment?  I would be interested in their lifestyle chances.  

 

I've been told decision is mine regarding treatment and no guarantees either way.

I'm not even sure of the statistics for triple negative survival rate with chemo or radiotherapy or without, I've done the NHS Predict - its a tool and that says survival for me  (women who had had surgery)

With Surgery / without treatment;

80% over 5 years  67% over 10 years , 56% over 15 years

If death from breast cancer were excluded, 74% would survive at least 15 years.

With Chemo treatment  (without bisphosphenates)  

85% over 5 years  73% over 10 years , 62% over 15 years

If death from breast cancer were excluded, 95% would survive at least 15 years.

 

With Chemo and bisphosphenate treatment  

87% over 5 years  76% over 10 years , 64% over 15 years

If death from breast cancer were excluded, 75% would survive at least 15 years.

 

I'm not sure on the statitstics for radiotherapy with triple negative.

 

Many thanks for reading my post

Very best wishes to everyone.

 

  • Hello, I've just come upon your post. Sorry if you've already said so on other threads but have you talked to your onco yet? 

    The thought of having breast cancer and opting for no treatments ( for me ) is unthinkable, of course we are all different....my sister told me in no circumstances should I have chemotherapy but I decided my oncologist was in a better position to advise me. I had surgery, chemo, rads, and now meds...but my tumour was her2 + , I am on a form where 3 ladies were triple negative, they all opted for full treatment.

     

    Are you looking into diet and alternative treatments? Personally I feel opting out of conventional treatments is asking for trouble but it's your body....I wish you luck on your quest...and hope you come to the right decision for you...xxx

  • Forgive me, I have just read your bio! You've had surgery....phew! That will teach me! Lol......you have c o p d....now I understand your dilemma.....bless you.....it really does sound like a caught between the devil and the blue sea scenario......I had 23 sessions of rads and I have defo noticed my breathing had altered...and my lungs are good.....

    im sorry you have all the added stress....xxxx

  • Thanks Marlyn

    Yes its a real dilemma, the breast care nurse wants me to talk with the consultant radiologist again before deciding against radiotherapy, I left a message on Wednesday, no reply, so I left another message today at 11.30 but I went out to get some shopping got back at 2pm, someone phoned from Southampton but when I ring the number it cuts off.

    Maybe I will try again on the other numbers I left a message previously.  I think one finishes at 3pm today.

    Did you have the whole breast radiation Marlyn?  Mine is the right side, I think I am finding the decision more difficult because of existing health issues becoming worse and my age.

    How are you doing now Marlyn?  Is your breast still tender?

    I only had surgery last month my breast is still very sore, I guess it takes time.

    thanks for your reply all good wishes to you  x x

  • Yes, whole right breast....I had radiation burns too....it bled...took 2 weeks to heal....all ok now though, the onco drew me a diagram to show me how it would affect my lung, it was about an inch....do you know how many sessions they are looking at? One of mine got cancelled due to a broken machine which meant I had to go in twice on the same day ( 6 hours between) the rads exhausted me but I also probably had fatigue from chemotherapy...it all adds up. 

    I don't envy you having to make the decision, if the numbers aren't outstandingly in your favour it makes you think doesn't it? Xxx

  • Hi Marlyn

    Poor you, the surgery alone is bad enough the chemo is a very aggressive treatment then you had the rads, no wonder you felt exhausted.

    I was told initially it would be 5 days a week for 3 weeks but at the consultation told possibly 4 days a week for 4 weeks as on one of the days the machine would have to be serviced.

    Well I still have not had contact by phone, so I shall try again Monday to get clearer on the risks and benefits and alternatives.  I don't think there are any alternatives though.

    Awful for you to experience radiation burs, so glad you are ok now.

    Yes very difficult.

     

    thanks again for communicating :) x x

  • Do you still manage to walk the dogs ok Marlyn?

    23 sessions of rads is a lot to cope with.

  • Morning, yes, we only have the one now ( sadly lost diva last year) I'm pretty ok now...except for fatigue!

     

    Can I ask if you're able to lay flat? My mum had c o p d and couldn't, her breathing really suffered in this position. During rads you have to lay flat for around 20 mins ( give or take)  just thought it was worth mentioning....xxx

  • Hi Marlyn

    So sorry you lost your Diva last year.  How long ago did you have your radiotherapy?

      Do you think your breathing, lung function has returned to normal now?

     

    I don't like laying flat, I usually sleep on 2 pillows plus a neck hook.  I'm not sure I would be able to lay flat for 20 mins, the back of my throat collapses.  I guess I could try it and see.

    Keep on feeling better.

    Best wishes

     

     

  • My last rad was end June, my breathing has improved but I don't think it will ever be back to how it was, I just have to pace myself...

     

    funnily enough ugh I can't lay down either, I have pretty severe positional vertigo, in bed I sleep almost sitting up with a pillow wedge and neck cushion, the rads people did their best to accommodate me but you do need to be pretty flat ( and still) halfway through my treatment ( around 10) I suffered constant vertigo, it was torture going in everyday......I'm only just getting back to normal now.

    I really wish you luck with this dilemma, and I'm hoping the rads team will have a good workable solution.....surely you would think this isn't the first time they had come across this situation???? Xx