Refusing chemo and herceptin

the only factor that would increase your risk for herceptin is that its a grade 2 as the other risk factors for getting it are under age 35, tumour over 2cm, hormone neg, or node positive.

here is the algorithm for treatment with herceptin…

there was a research trial going on within the last few years about giving herceptin without chemo, im not sure if its still ongoing but will see if i can find out for you.

lulu x

I just want to say a huge thank you to everyone who is taking the time to share their experience strength and hope with me.

I am praying that at some point, the intuitive right decision will come to me… but at the moment it’s stuck on the ring road!

Smiles and warm wishes to you all.

Pixie I had a thought… I know your tumour is a grade 2 within this grade there are two levels it will be a 6 or a 7… 7 is nearer to grade 3 and 6 is closer to grade 1… If its nearer to grade 3 I think it’s probably fairly beneficial to have it.

You could also ask if there is a shorter chemo regime you could have… They may be able to do just 4 cycles instead of 6.

Lulu x

I think the thing is that there are no guarantees,no-one can predict an individual case and you will I’m afraid just have to find what feels right for you - not at all scientific I know!

I had a small low grade tumour when dx in 1999 but to rthe surprise of my surgeon had spread to my some of my lymph nodes. I wasn’t given a choice even though they thought my prognosis was good they threw the lot at me, CMF & doxurubicine and rads, followed by tamoxifen. I later decided to have my ovaries removed as a kind of added insurance policy!

Despite all that in May 2010 just when I’d allowed myself to believe I’d defeated it, I was dx with bone mets! So did the chemo not work because I have secondaries, or did the chemo work and keep the cells at bay for 10 years? Who knows?! All I do know is that if I had to make the choice again I personally would still opt for the treatment as I’d want to feel that I had done everything that I could…But that’s me.

I wish you the very best of luck whatever you decide and I hope that some kind of intuitive omen will help you make the right decision for yourself.


hi ladies very intersting reading im jane dx 11th jan 2012 lobular grade 3 tumour 9cm and 5 out of 15 nodes involved with capsular spread and vascular negative er+ her2-. i had mx on the 3rd feb. i have taken a look at the graphs suggested and it seems with chemo or without chemo the results arnt much different 83 out of a 100 at 5 years. im awaiting ct scan resuilts at the moment and because i am so terrified of the chemo im concidering rads and hormone therapthy.
i so admire the ladies who are doing the chemo but me im a person who doesnt cope well ive suffered anxiety for years now and i really dont think im strong enough at all. are there any ladies who are in the same position as me with type and grade who could advise me.
thankyou for reading love to all jane xxx

Hi Jane,
My diagnosis is similar to yours but no nodes affected. Chemo only gives me a 5% add-on but I took it without question because of all the success stories I’ve known personally. I am also an anxious person but when side effects have hit me it has helped to talk with women on these forums and find out what is normal and what solution there are.
Your oncologist can give you sound advice, but you have to make the decision that’s right for you. I jumped at the chance of adding to my prospects of surviving even by a small amount. It’s all a gamble. I may have wasted 18 weeks of my life enduring a loss of normality but I would have been too anxious to do otherwise. Take all the advice you can get but then sit down calmly and listen to yourself.
I wish you all the best in making this tough decision.
Love, Kathleen


Jayneypaney - one of the things that is probably swaying me (a very anxious lady) towards the chemo is I have been looking at recurrence statistics - these are markedly different from survival ones.

The survival ones don’t indicate how many of those women still alive are being treated for recurrences.

In my case, the chemo and herceptin give me just 2% better survival.

However, when I got the recurrence statistics, herceptin and chemo gives me a 16% better chance of not having any recurrence.

So am anxious and dreading it but am 99% sure I will now do it.

My GP was great - got up the adjuvant stuff and helped me a lot.

I have had 3 kids so endure 120 weeks of being pregnant and I loathed that as was an icky sicky bunny - if I can do that- endure 3 long labours, well I can do 18 weeks chemo and the follow up herceptin.

I am not that special - if all these wonderful women on here can do it, well so can I.

Another thing I have found helpful is my BCN telling me how much the chemo and particularly herceptin costs. She said if they didn’t believe it would give oyu a significant advantage, it wouldn’t be offered.

So am gradually getting to my decision and know that you will do too.

Smiles - even if they are wobbly ones.

Pixie, although there are assorted threads on here that discuss how ghastly people are feeling, do remember that a forum such as this is always going to be biased towards those who ARE having problems versus those who get through relatively easily. For every person posting about side-effects, there are many more who don’t have that particular one, and even if you go get some, the chemo units are very good at doing everything they can to minimise them. I had chemo and while it wasn’t pleasant and I was knackered, I managed to get through it. One year on, still having Herceptin, and the chemo weeks have become a dull dark shadow in the past - the human mind is very good at healing. I’m not finding any noticeable side-effects from Herceptin (other than a rather drippy nose, and that’s fixed with frequent applications of tissues!) so other than the inconvenience of having to go to the hospital every three weeks, it’s very do-able.

Whatever your decision, it’s YOURS, so I hope you feel comfortable with whatever you do decide. It’s very tough being faced with a decision like this, but in a way it’s rather empowering because you do have a bit of control over your treatment options.

Good luck


hi pesteringpixie,

how did you get the recurrence statistics up, what do you have to look at, or did your gp show you.

can GP’s show you stuff like this then thought only onc would be able to?

hope you feel better about treatment.


Hi pesteringpixie

My Dx completely different from yours (v similar to Jane) but I do agree you need to look at recurrence stats as well as mortality. All studies and trials measure disease free survival as well as deaths but unfortunately all the online tools focus on survival figures. Your Onc should have the latest evidence available though. You are fortunate in that herceptin is available now as this has transformed the outlook for HER2 positive women. Personally I would be tempted to go for chemo just to get the herceptin and as someone else has suggested you will probably not have a very draining chemo regime. Definitely recommend cold cap too.

Jane I was Dx with lobular in May smaller tumour, stage & grade 2 but 8/14 nodes positive, otherwise identical to you. I had Letrozole + or - NSAID on a trial before Mx & ALNC in Oct and started chemo in Nov having rads then more Letrozole. Most of chemo has been fine except docetaxal which caused a lot pain and landed me in hospital for 2 weeks with an infection and in the end they didn’t give me the 3rd dose. BUT from the beginning I have been struggling with the stats. Our problem is that there are not enough lobular cases even in big trials to analyse whether any treatment is better for lobular. All we can go on is chemo is better for node + generally. Despite complaining to my Onc that the latest trial had not shown an advantage for docetaxal for people like us over FEC, I still found myself trying to argue I could cope with a 3rd dose. Mad, but that’s what trying to get your head round this stuff does. I’m glad I went for everything, but you do realise early on how crude BC treatment still is. Lobular has a tendency to recur after longer periods, so by throwing everything at it now at least you can hope something fantastic for us might be developed in time to stop that happening. All comes down to personal choice though.

hi girls thanyou for your replies i meant to ask in my post if anyone has had capsular spread and know if that spread is taken away during op also did anyone else have to have ct scans and bone scans. i have an appointment on the 28th of march to see my onc and are scared i will cancel again like i did the last time. i had a total melt down two weeks ago and just couldnt bring myself to come face to face with him.i know sticking my head in the sand isnt good at all but everytime i think about going im so scared of what he is going to say.i asked for my ct results by post but as ive had another appointment so perhaps there not sending them now. as lobular hides and mine was so big i wonder how long its been there years maybe i dont know. do you not think rads and hormone therapy would be good enough. my onc told me i was high risk not sure if she meant for reoccurance or spread. i wished i could be strong and focus i just want to keep running away.thankyou pestering pixie choc muffin katyb61

Dear Jane

You sound so frightened

I have a much lower grade cancer and I was borderline for chemo and had 2 opinions one of which told me that at age 52 with only a micro met he would advise chemo and there were clear benefits

I realised if I didnt have it i would not be able to move on as I would worry that I would get reccurence and would be very depreessed as the prospect is terrifying

So I guess I feel if you dont do it you will still be terrified. Ask them to help you they will

I guess I am saying not having chemo may not be the easy option so you need to make sure you make an informed deciscion

I know its a cliche I feel if i can then anyone can cos I am terrified

had my first and okay at present

Thinking of you lots of love Poppy xxxxx


It is understandable you are afraid of chemo - so was I! Just look at my screen name. All you ever see on telly is people on chemo with their head in the toilet and feeling very very sh*tty.

In my case, I never questioned if I WILL have chemo, I was just afraid of what it was like.

What are you afraid of? That the cancer has spread or the effects of chemo?

Actually, about the ‘head in the toilet’ fears, I do remember that with FEC I felt sick for a few days, but I never had the kind of nausea that I sometimes had years ago after eating or drinking too much or getting food poisoning. The only time I was ever actually sick was when I stupidly got on an exercise bike. I was immediately sick as I’d just had breakfast. But it was over at once and I felt great afterwards. I did not have that much energy so I would have hated to spend hours leaning over a bucket - don’t know if I could have faced it. Sorry to be so graphic, but I want to say that feeling mildly sick for a few days was tolerable although not pleasant. After about three days the feeling was gone. During those days, I took drops before every meal, presumably to keep it down, but when the nausea had stopped I noticed it immediately.
Under Docetaxol I didn’t feel sick at all, but weaker.

It was helpful throughout chemo to go walking every day however often I had to have a rest. I only managed an hour or so, with pauses.

I was really surprised how tolerable chemo was for me. And everyone is terrified of it. If you have serious effects - a minority - you should get help for it.


regarding CT scan and bone scan - I had both, and were I am, I believe it’s routine just to make sure it’s not spread before they start… both very inoffensive and unscary My team wanted the results of those before they sat down at a multi-disciplinary meeting (onc, surgeon, radiogogists, BCNs etc) and decided what was the best course of action for me… Personally, took their advice, on the basis that I didn’t want to be back here in x year’s time wishing I’d taken every chance given to me… but it’s a very personal decision… God bless, Jane

thankyou again everyone xxx gijane what grade were you did u have capsular spread. i dont know if its my imagination but my lower back aches thats worrying me. im scared of all of it scared of chemo scared of my results scared of facing my onc just about boob is still huge from the op with the seroma and very hard.i smoke too much i drink too much but however hard i try i just cant give up its the only time i feel like me.i often wonder if i just left all alone and carried on ridiculous i know but it sounds wonderful.
im moving house soon and wish i could just get on with my life… dont we all eh.i admire so many girls here there strengh to face this and get on with what there given. sorry i just find it so hard xxx

Jane, I think every single one of us got a lot more aware of general aches and pains after surgery, and quite often held ourselves differently because of post-surgery discomfort, so ended up with achy this, that and the other. It is HIGHLY likely that your achy back is caused by the stress of what you’ve been through so far and holding yourself in an unnatural position.

I don’t think there’s anyone on here who hasn’t been scared. Of one thing or another, of of the whole flipping lot. But it’s not necessarily because of a spread, much more likely to be just the stress of it all.

Hope that helps.

Jane, I had grade 2 invasive cancer. I don’t know what capsular spread means, so I guess I didn’t have it! It’s tempting to think it’ll go away if we ignore it, but we know that isn’t the way it works… let us know how you get on tomorrow… Jane x

Those of you who asked about recurrence stats:

I found these on adjuvant, there is a little menu you can flip to recurrence or mortality.

Significant % difference for me between those alive and those disease free.

Jayney I can do scared. I can do pissed off and I can do Joan of Arc - all within the same 10 minutes!

I don’t fancy chemo and herceptin at all, but hey, summer is coming, olympics on telly and I have told them i need to be able to do some part-time work and have been resolute in saying I will not accept AC with herceptin.

Dr Susan Loves book is excellent - really helps me.

I hate having BC but will never be a cancer sufferer. BC is a pain in the arse and the pain is inevitable - suffering is an optional extra. By that I mean, I don’t give it more head space than it deserves.

Seeing my Onc on Wednesday and will be guided by him but am pursuing Oncotype DX and asking for a CT before submitting.

Jayney, if you cancel again, the fear will just build and build. As Susan jeffers says: “Feel the fear and do it anyway”. You really are not alone.

Smiles to one and all

Pesteringpixie, from what I can deduce from your posts, you feel that with a stage 1 tumour, without node involvement treatment that has been recommended by your medical team (chemotherapy and Herceptin), is not really necessary. You have looked at statistics, spoken to Penny Brohn and your friend (who is a senior radiologist), and they all support your reasoning.
Just a question, do you understand the difference between lymphatic and hematogeneous spread? If not I recommend researching these terms as it could help you to reach a decision. The sad fact is that even if you have no node involvement at all, you could still have cancerous cells circulating in your blood stream, waiting for the right opportunity to form secondary tumours. The idea that you can stop these cells from forming into secondaries by strengthening your immune system with diet/supplements/attitude is a mistake, because:
(1) If you have cancerous cells in your blood-stream, it means you have cancer cells which have already developed the ability to penetrate blood cells
(2) If you have cancerous cells in your bloodstream, these cells have already got past your immune system (no good closing the stable door after the horses have bolted and all that)
(3) The idea that the immune system is constantly fighting off cancerous cells floating round the bloodstream has been proven wrong by medical research. Although the immune system destroys damaged and faulty cells, it does not recognise breast cancer cells, because they are not foreign, and because cancer manipulates micro rna’s so that it can replicate itself.

Another thing that may help you to reach a decision is finding out the cost of chemotherapy and Herceptin. In fact the cost of these two treatments to the NHS is considerable (chemo for just six weeks is £3,500, and Herceptin for one year, is £21,000), so if your medical team offer it, you can be sure they think it’s necessary.
Finally by all means do what you think is right, but don’t base your decisions on what Penny Brohn, or your radiologist friend or statistics say. Penny Brohn are an organisation committed to a particular approach; your friend is not an Oncologist (and in any case doesn’t have access to your notes), and if you play the stats game you might just as well toss a coin, because you could either win or lose.

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