TNBC did anyone refuse chemo

Hi , firstly lots of sympathy for having to go through this at such a difficulty time and with young children:(

Everyone has individual benefits from all thr treatments,  but the tool used by doctors to calculate benefit is this one: https://breast.predict.nhs.uk

It is probably slightly out of date,  because the figures for women being treated now won't be there until 5/10/15 years time, but gives a reasonable idea.  It doesn't factor in LVI (lympho vascular invasion) which slightly increases the risk of recurrence,  but only about 20-25% of women have it,  and it would say on your results letter if you did. 

Anything under 3% gain is considered not appropriate for chemo due to the risks. 3-5% gain is of possible benefit (I was 4%!), and over 5% gain is where it is recommended.

In my case I convinced myself to have it for 2 reasons.  Firstly,  how would I feel if I had a recurrence after refusing chemo? Secondly,  with my details I had a 93% chance if being alive in 10 years if I never had breast cancer,  and with chemo I had a 87% chance of being alive.  That's 6% difference, or a 1/ 17 chance of dying from a recurrence. With no chemo I had a 9% chance of dying (I have ER+ BC, so the benefit of letrozole and Zoledronic acid increased slightly). That's a 1/11 chance of dying in 10 years.  Quite a difference! I know that I could still be that 1 person,  but it is less likely. 

I was actually really scared,  but it wasn't as bad as I thought. I felt ill for about 6 days (it if 21) in each EC cycle,  and with the weekly Paclitaxel I want sick at all,  but had a bit of an upset tummy,  and eventually stopped when i developed early peripheral neuropathy,  which is now better.  I cold capped, but the hospital had  2 machines and only over worked properly,  so lost hair when I had the not so cold one, but it grew back when on Paclitaxel, so I managed to avoid the dreaded wig!

On the main Breast cancer forum there's a chemo thread which is brilliant! There are tips on using mouthwash (so my mouth was never sore) and evonail, so my nails were fine. They also are a great support  and a place to moan or tell funny stories.  

Obviously the  choice is yours, but you are still young, and the 4-5 months pass really quickly. Let us know what you decide.  Xx

Hi Chocolatecat, thanks for sharing your story.

I'm sorry to hear your situation. It must be really difficult. Despite I also have TNBC, I'm sorry I can't help you more as I decided to go through chemotherapy despite the uncertainty of the covid.

What I can advise you is to ask all your questions to different people in order to gather as much information as you can to make an informed decision. Whatever your final decision is. 

I asked myself the same question if chemo will really help me or not and asked the oncologist too. Unfortunately, even she couldn't give me an answer and only said "we don't know. we can only see what happen in the next 5 years". What I can also say is to don't obsess too much on the number, percentage and data. In the end, we are all different, so what doesn't work on someone could work on you and vice-versa. 

I definitely advise you to call your breast cancer nurse and ask for more information about the treatment if you don't fully understand. It's important you understand what to expect and they are usually very helpful and clear, even if you have lot of questions. They should also be able to give you more information on how to deal with everyday life during the lockdown while undergoing your treatment.

Hope this can help you and good luck with the radiotherapy.

Isa

Hi

I had triple negative cancer in 2018 and refused chemo and radio.  I went mainly vegan and used CBD oil.  I am waiting for results to confirm the type of cancer (should be this week) but i definately have cancer in the tymph node well on tumour 47mm and in 2 other lymph nodes. I have had a ct scan and MRI too so should know if it is triple neg recurrence and if it's spread.

The breast care unit say thing have come a long way in the last two years with respect to targeted treatments for triple neg.

This time i will go with what they recommend.

I hope it helps. I have lived the decision and it hasn't worked out too well for me.

Wishing you well whatever you decide.

Maria

Hi

I was diagnosed 2nd March and told chemo, lumpectomy, radiotherapy. Chemo was to start 25th March and they rang me on 23rd said it wasnt safe to have it and I had to have surgery instead. Had a hysterectomy on 31st March.

I've refused chemo and radiotherapy because the % for me is 10%. I know some people think that good, I keep reading chemo is a no brainer for TNBC. But the oncologist says I have to socially distance from my husband for 20 weeks of chemo because he is a key worker in social care, and it's a new job so he cannot go off to look after me. My kids are 22 and 17 and both autistic. I cannot work out how I can do it. We are being asked to make split second decisions over the phone at the moment with no support ans I guess this is hard even when it's all face to face but right now for me my daughter is 18 in Septmeber, the cancer has been taken with my breast so I'm focusing on September right now and if I get her birthday I'll be grateful. And I just read your post Maria thank you, I will be glad of 2 years more that would be amazing.

Whatever you decide Chocolatecat lots of love to you xxx

Hi 

There is a higher % risk of recurrence or even scarier secondary cancer with TN breast cancer within 5 years - not saying this to put the frighteners on you but surgery, chemo and rads are the mainstay of standard treatment for TN as there are no long term follow on meds which can be taken for 5 or 10 years to reduce this risk as there are with other types of BC.

The thought of facing chemo now may seem overwhelming, but 5 months of chemo may save you from the even more worrying scenario if this was to come back in one form or another at some time.   There has been several ladies return here a few years post treatment some who weren't even offered chemo others who were 'borderline' and were too worried about all the possible side effects listed to go through with it :-/

The chances of catching Covid at a chemotherapy unit is very small they are by nature one of the safest areas, even the patients have been on lockdown and the staff have always worked in an aseptic regime way giving chemo to those with iv lines etc. As long as you can travel to and from your sessions in a safe way (car for example) chemotherapy is do'able. It can be a rocky road some days (but not all) and the prize of doing all you can to keep yourself cancer free for life has to be a risk worth grabbing with both hands.

Hope after reading your replies you can make a decision one way or the other with no regrets either way.

Hugs, G n' J

Hi chocolatecat,sorry to hear about your diagnosis and I cant make the decision for you just want to share my story.I am 42 I was diagnoses with TNBC 2,5 years ago.Had 7 cycles of chemo,lumpectomy and radiotherapy.

Well seems chemo didnt work for me well and my doctor should do mastectomy and not lumpectomy.I was silly I should choose meastectomy.Anyway I am back on chemo trying to fight for my life because my cancer came back last year and now is also in my lungs.I am responding well and I am trying to be positive but chemo doesnt quarantee anything.

Regarding radiotherapy I was off sick when I had chemo but for radiotherapy I have returned to work but only reduced hours.

Janet

Hi

Thank you for your kind words. I found out today that it hasn't spread, the releif is enormous. So they want me to have chemo and surgery but say i can do it the other way around, if i can i will.

You may be lucky as there are no guarantees with tnbc. Just remember even if there was recurrence you can still have chemo at that stage like me.

All the very best to you

Kindest regards 

Maria

Hi Janet

I've just read your post, i too have got recurrence following tnbc in March 2018. I didn't have chemo or radiotherapy but i did have a mastectomy thinking it would be fine but still have recurrence.

I wish you all the very best with your treatment

Kind regards

Maria

And also that a lot of people aren't so lucky with the recurrence, as it's often stage 4. Best treat it as much as possible now in the hope it's gone. 

Your right, to be honest i think i have been very lucky