Anyone out there in the TNBC gang who has refused 'mop up' chemotherapy and radiotherapy??

Hi Lexy,

Sorry to hear you have TNBC, bit frightening isnt it? I was diagnosed with grade 3 TNBC in February, with 1 lymph node affected, had the surgery (MX) and did give it a lot of thought regarding to have or not to have the chemo.

Read lots of info on the internet, chatted to Onc, and decided to go ahead with the chemo, I have had 5 now, but my 6th one has been delayed a week because of infection/neutrolpenia, so will have the final one next week instead.

My Oncologist said if it wasnt for the lymph node, the chemo may not have been necessary, but because of that blasted lymph node, was advised to have the chemo, so went ahead with it.

Do you have any lymph nodes affected? that may help you make the decision? I would like to live longer and perhaps the chemo may let me, who knows? TNBC is an aggressive form of BC, so in many cases Ive heard about, it does delay recurrance, but who knows? I owe it to my children to at least try and see if it works, was my final decision.

Only you can make the decision, and no one else.

Best wishes

Wendy x

Hi Lexy

Sorry that you have had to join this club, I think we are all very reluctant members.  You don't say why you are questioning the chemo and rads treatment.  Or whether you have already had surgery - I am assuming you have, since you use the term "mop up".  But I would advise that you get your oncologist to discuss with you, the % gains in recovery chances you get if you accept the treatment.

TNBC is an aggressive form - which I am sure you know.  Mine is also metaplastic (ie can change in cell type - mine were mixed types).  So I figured that any % improvement in chances should be taken.  I had chemo before surgery (had SNLB first and no nodes involved), 2 x EC and then 2 x docetaxel but it did not shrink the tumour, although the path report after mastectomy showed significant damage inside it, so we are hopeful of systemic benefit too.  Had mastectomy in March, and rads as "belt and braces" to prevent local recurrence in May.  My decisions were simply to try to improve the odds.  

The chemo was horrid but I was never nauseous, kept enough hair not to frighten myself in the mirror (used a cold cap), and was able to minimise use of steroids.  I have recovered well.  Rads were really easy, and my skin is fine - I was swimming every day within a week of finishing.  And currently I am feeling fine - have had holiday in Greece, enjoyed being at the Olympics and soon will be at Paralympics.  It's wonderful to have my life back, albeit with BC in the background.  And I have now begun the process towards reconstruction, and see the plastic surgeon in October (have to wait at least 6 months after rads before surgery).

I hope that this helps - but it's best to speak to your oncologist and breast cancer care nurse.  Ask to see them again if you need to - don't wait, and don't try to decide things on your own.  Good luck with making the right decision for you.  Hugs!

Hi Lexy

My advice to you would be go for everything.  I had Triple negative with no lymph involvement in Jan 2011 and went on to have wide excision, 6 x FEC chemotherpay and radiotherpay.  I was assured that this was belt and braces and the best treatment I could have, but here I am some 15 months later with secondary breast cancer in my lungs (terminal), just diagnosed last week after a few weeks of a cough and breathlessness. I am now on Docetaxel chemo again simply to shrink the lung tumours and give me more time.  It is beyond hideous.  Cover yourself with as much protection as you possibly can.  The research is so far behind on us TN people and so much has (rightly) gone to the majority who are hormone respondent that you need to do everything you can to protect yourself and the mop-up chemo might just swing the balance in your favour.  I thought I had crossed every bridge and done everything to protect myself, healthy diet, exercise, even went to see private breast specialists to see if odds improved with double massectomy etc and was told no - I had done everything I could! Turns out it was still not enough.  I found the FEC chemo and the radiotherapy not too bad and recovered quite well so my advice would be - go for everything 110% and good luck.

Any advice from anyone in my position would be appreciated - especially with side effects of Docetaxel and how you coped with the secondary news? Thanks.

S x

Hi,

Does Triple Negative Cancer always recur no matter what the treatment plan?

I don't know where you got that idea!  There are lots of 10 and 20 year survivors of TNBC to demonstrate that recovery is possible.

The % risk of recurrence is higher than other forms of BC, but still is a minority outcome.

With TNBC, recurrence is most likely before 3 years from diagnosis.  If it hasn't come back then, it's more likely than with any other BC, that it never will.

Stay positive, take exercise and avoid being overweight - these three factors are known positives for a good outcome.

Hello Sandra and everyone else,

Thank you so much for your replies.

Sandra I am so sorry to hear you have secondary in your lungs.  My thoughts, positivity and prayers are with you.

I had a lumpectomy in July, removal of 4cm Invasive papillary TNBC tumour. No lymph node involvement.  I was told that if I have the chemo it would increase my chance of survival by 10%.

My reasons to not have the chemo are mainly because I fear it will do more harm then good.  Have any of you read this:  http://www.thedoctorwithin.com/cancer/to-the-cancer-patient/

I am going to see Andrew Tutt next week who is meant to specialise in TNBC.  I am pretty sure he will tell me the same as my NHS ONC but i'd like to get a second opinion.

I'm drinking essiac tea everyday, supplements to help oxygenate my blood, alkaline and dairy free diet. Meditating, visualising and doing lots of running and yoga.

I think my issue is, is this: I just don't seem to be able to believe in the drugs.  I have met and spoken to women who have had mastectomies, chemo, rads....the lot and yet they still have had recurrences.  I have met woman who haven't had chemo and been fine and woman who have had chemo and been fine.

I just feel that I'd like to hold on to my immune system as I really think,right now, I need it most.  I am scared which is why i am considering having the treatment.  I just don't feel brave enough to detach myself from the wing of the NHS.

I am going to book myself a thermography scan, it's radiation free and much better than mammo and ultrasound.  You can have a full body scan and it can detect very early signs of cancer.  Has anyone ever had this scan??

Still can't make a decision.  So pleased I have you gals to chat it through with.

lexy xxx

Im a brca 2 carrier and had hormone pos BC and TN BC and a recurrence of the TNBC..... The survival rate for 10 years post diagnosis for hormone pos BC is almost 90% but for TNBC its around 75%... So its less than hormone pos hence the reason it gets called poor prognosis..... But if you compare all cancers to about 25 years ago they are all excellent prognosis as only around 45% surviving to 5 years of all breast cancer diagnosis.

The big improvement has been from early diagnosis and treatment..... If they are offering chemo then this means they think it would be beneficial, but nothing is guaranteed.

Generally speak regardless of being TN or not pretty much every grade 3 cancer will be offer chemo, this isnt just down to TN being aggressive but grade 3 being aggressive as well and lack of treatment for TNBC besides chemo. Have the women you have spoken to all had TNBC?

The thing is you do not need to have chemo if you dont want to have it.... However how do you think you might feel if you were to have a recurrence or secondaries later on? Having had a recurrence in my chest muscle event though i was node neg i still feel that i have done everything i could to help prevent it.... But just how i feel is not maybe how you would feel and you have to do whats right for you with no regrets.

Sorry to hear of your secs sandra.... There is a good tnbc secondaries thread on BC care forum, lots of positives and ladies been living with TNBC mets for years.

I had my annual Boob MRI yesterday (year to the day of the recurrence) and it was normal thankfully.... So hoping to have a year off hospitals for at least a year as had bc three times in the last 6 years!

Lulu xxx

Lexy did you end up not having chemo?You still ok?

Hi Lexy,

I had grade 3 TNBC, had a lumpectomy in Sept and nodes all clear. Originally offered just radiotherapy as the lump was very small but after seeing the surgeon he suggested chemo - I was shocked that I this had not been mentioned before. However on seeing the oncologist ( on 3 different visits) it turns out that I not only do I have the aggressive grade 3 & TN I also have basal cells which collectively is one of the worst breast cancer that you could have. Therefore she  suggested chemo incase there was any stray cells that travelled to my blood stream before the lumpectomy. Plus the high risk of recurrance and with this type of cancer it was more likely to come back in my brain or liver.

I have to say at first I said no because as far as I was concerned the cancer was cut out and not spread and I did not like the thought of putting chemcials into my body.  But after much soul searching I have now decided to take the chemo option and start my first treatment of 12 weeks next Tuesday. My logic is that at least I will know that I have done as much as I could to combat the high risk of recurrance and also I don't think I could live with the knowledge that in 2-5 years down the line it could came back worse.

I know having chemo there is no guarantee of recurrance and there may not be any stray cells but I think I am more frightened by what may happen if I don't have chemo than having the chemo.

Hope this helps as I admit I shruggled with making a decision and I have to say I do feel some relief now.

My husband posed a quention to me: if it was him what would you advise - I said, have the chemo and he said there's your answer. 

Lexy there is so much support out there you are not alone. I found this forum very helpful.

Cancer takes over your life but you have to control it and be the boss.

Chancer x