Refusing chemo and herceptin

[pesteringpixie]

Jane

I am sorry you are giving yourself such a hard time. BC is rotten enough without the added negative pressure you seem to be helpless in piling on yourself.

Perhaps your BC unit has access to a counsellor? They would be able to help you with some relaxation and visualization techniques.

On this journey, it does help if we can see our glasses as half full rather than half empty:)

You are not alone jane, there are thousands of us walking this journey and most of us are scared out of our wits a lot of the time. If I have a low moment, I get a pen and paper and write a gratitude list. By the time I have done, the low spirits have lifted somewhat.

God bless.

[ChoccieMuffin]

Jane, I know someone at my unit who has an ongoing prescription for Tamazepam (or similar) which she takes before she goes into the unit. She finds that helps a great deal to get her there, without knocking her out completely. You might want to have a chat with your GP and see if he/she can let you have a couple of tablets. It's worth a try, and the occasional tab isn't going to be addictive.

As for the low feelings, that's totally understandable, I'm sure we've all had them at one time or another. If they go on for longer than a couple of weeks though, you may be suffering from a touch of depression. Depression is fairly common among people diagnosed with BC. Whether it's as a result of treatment or as a result of the shock of diagnosis, it's definitely real - I've heard figures of between 25% and 50%! I am currently using anti-depressants and they certainly seem to be helping me get through my days. That's another thing that you might want to have a chat with your GP about.

This blasted disease throws things at us from all directions, and it's not a sign of weakness that we buckle under the load sometimes, more a sign of strength that we ask for help. So be strong and ask for help.

Love and hugs,

CM
x

[Guest user]

thankyou djoo7 i just wish i could be positive and get on with the appoinments and do as they ask me too. wednesdays appointment is rolling round now im terrified if he says its spread. i had a speed awareness test yesterday which lasted four hours and after an hour with sitting my knees and back were aching.they dont ache unless i sit for long periods, everyone else there didnt fidget as i was.all i do is worry and i never think positive just negative all the time. my daughter was getting ready for school yesterday and her dad didnt give her clean underwear and i said she must have clean underwear everday like im saying it like i wont be here..... this is how my thoughts run all the time in so many different situations if thats not negative i dont know what is. jane xxx

[DJ007]

Hi Janeypaney

My understanding is that tamoxifen doesn't kill cancer as such - it starves it of the oestrogen it needs to grow instead. Chemo drugs actively kill stray cancer cells..

Good luck everyone with your decisions - you have to come to the ones that you personally can live with, no matter what the outcome.

Dx

[Guest user]

hi jcj i found your post very interesting although i couldnt make out if you are refusing chemo or not. i like you are er+ and her2- i have lobular grade 3 and tumour was 9cm after my mx was done.ive had a ct scan but didnt attend bone scan as i had a melt down. what does it mean when your onc used the word overkill. would tamoxifen be enough to kill the cancer without chemo. it said on my report after chemo and rads that i would have tabs for five years. im struggling what to do.i havnt had ct results back yet but my bc nurse said its my decision if i opted for rads and hormone therapy. i would so appreciate your input on what you think thankyou so much jane xxx

[JCJ]

Thanks pesteringpixie. Tumour over 20mm and grade 3 both mean I'm automatically OFFERED chemo but as ER+ve and HER-ve it makes it my decision rather than cut-and-dried. Herceptin not an issue for me as mine HER-2 -ve.

I'm going to be on Tamoxifen as although NOT under 50 (52 in April!)I am still pre-menopausal and that is what they go on. The tamoxifen blocks the oestrogen receptors on the cancer cells and stops them developing - so even if they have gone elsewhere in my bloodstream that should be enough?

I can't chop and change when I work, as school needs to pay supply cover, and insurance covers this provided I'm off long term. And anyway, I've been told that I can't be around the kids due to risk of infection! I know I'm very lucky to get 6 months full paid sick leave (but then up to now, I've NEVER had more than 5 days off sick in a row and NONE at all in last 6 years!!) If have chemo, by the end of this though, I will be on half pay. 😞

It's not so much the actual process of chemo: I'm sure I'd get through it, just like the operation, seroma and everything else(clexane injections freaked me out when I read about them, after all, and they weren't so bad! :)) - it's more the need to put this behind me as soon as possible and get 'me' back.

I certainly wouldn't even consider refusing chemo if I didn't believe that it was just 'overkill' - the oncologist even used that word herself!!

The more I talk about it the more unsure I become! 5 more days of this 'limbo-land' (love your phrase!)I've been there so much this year already!

Take care.

[pesteringpixie]

JCJ

I can empathise with your feelings of distress and shock - I have just had 8 days of it - whether to do the chemo or not. I found the ladies on here an enormous help to me.

My limited understanding is that at grade 3, you would automatically be offered chemo as the grading determines how quickly the cancer cells divide.

My oncologist explained to me that although I am stage 1, (small tumour) , grade 2 with negative nodes, there is still the chance that some cells could have gone to other parts of my body via the bloodstream. Chemo will zap them.

I was also very concerned about the 'months of hell' - he chuckled and said that wasn't his original plan for me but if I want hell, he can see what he can do. He reassured me that I will be given very effective anti-nausea medication and that provided I adjust my schedule and get plenty of rest, I will be okay. My intention is to still do some work - the 3rd week of each cycle.

I didn't want to face the future wondering if it came back and knowing I hadn't taken every opportunity offered to me to get and stay well.

One thing that gave me a real perspective was visiting the american forums and seeing ladies who couldn't have what I am having (chemo and herceptin) because they didn't have enough medical insurance. It made me feel very grateful for the NHS and very humble - I am being offered all this support and treatment and excellent care for free.

If you are having Tamoxifen, it sounds like you are under 50.

I am having FEC too starting mid April - if you go ahead we could be FEC buddies.

I really do hope you can reach your decision - the limbo land is a truly horrid place to be,

Smiles

PP

[JCJ]

Originally posted this on "undergoing chemotherapy" but was directed here: (Although Herceptin is not an issue for me as HER-2 Negative.)

Help!! I've seen the oncologist today and been offered 6 months of chemo (FEC)following a WLE and SNB. The biopsy came back showing no lymph involvement. Tumour was 28mm (originally told it was 'very small - only 11mm')and Grade 3. ER+ Her-2 Negative.
This was a massive shock. At my biospy results appointment 2 weeks ago, surgeon told me my "cancer has gone" and he'd make an appointment for me to see oncologist about whether chemo would be necessary - (he said they were still waiting for a test result) - and plan radiotherapy.
I have been told that I will definitely need tamoxifen and that this should greatly reduce the chance of recurrence and that chemo will only reduce that risk by a further 5%. I'm thinking this is not enough benefit to be worth putting my body through 6 months of hell.

I started this process with the thought "I'll do what I have to do, and then put it all behind me and get on with my life." Now I've been told it's my decision whether to have the chemo or not. I lost both parents, at relatively young ages (51 & 72), to heart conditions, so I can't help thinking I'd rather not waste 6 months making myself ill for possibly very little benefit, when I could die next year of something else entirely!

Sorry to go on so long, but I'd greatly appreciate thoughts from anyone else in the same situation! Thanks.

[vercors]

CM, can you not ask your hospital to have Herceptin at home? I did the first time around, actually they strongly recommended I did. Yesterday I was told my bisphosphonate was switched to the oral version and I could resume having herceptin at home. For the NHS the cost is the same as in a hospital, with added advantage that it frees up a bed, and I save on petrol.

Pesteringpixie,
Glad to hear that you have made up your mind and feel good about.
We are all here to support you through chemo as well.
take care.

[pesteringpixie]

Hello all you lovely ladies

I feel 100% better after seeing the oncologist. He was so reassuring and explained things very carefully.

He said my situation is unusual as although I am HER2+, my cancer is stage 1, Node neg, ER+ and grade 2. He explained most HER2+ are grade 3.

So, the outcome is, starting mid April I am to have 4 cycles of FEC followed by 12 months of Herceptin.

So will start a new thread 'Accepting chemo and herceptin' 🙂

So many smiles to all who have helped me this last week. Real girl power eh?

PPxx

[ChoccieMuffin]

PP, we are all happy to help you bounce things around. Even if you'd decided not to go for it, you would not be judged but supported in YOUR decision.

Good luck, and I hope having a decision you're comfortable with gives you a peaceful night's sleep. Once things get going you'll be very busy, and while it won't be easy, you will have lots of support on here.

Herceptin seems to go on and on (I started chemo March last year and don't finish herceptin until July this year) but the biggest nuisance about H for me is having to trot off to the hospital every 3 weeks.

[Guest user]

Thinking of you. Not an easy day for you, though I am sure you will hear others say this as well 'once the plan for treatment is known, agreed and moving forward then you feel a little bit more in control'.

Take care and keep posting - I found it really helpful even just to sneak into a few without even posting!

Jayne. 🙂

[pesteringpixie]

Hello

I am so encouraged by your responses - am still a newbie to BC - so far have had surgery but the rest lies ahead. It is good for me to hear from those of you who have been living with this for some time and have learned the ropes, so to speak.

Oncologist appointment at 3.30pm today - and am pretty sure that I will do the chemo and herceptin even without a CT and bone scan. A big part of this is 'peace of mind' - if I don't have it, am I going to spend the rest of my life worrying if the bogey man is going to stretch his legs again.

Thank you to all those who are generous enough to help me bounce this one around.

PPixie

[Guest user]

Hi again pesteringpixie

So glad to see this thread still going and pleased to have Lemongrove and Lulu here. They know so much more and are able to provide a balanced approach to the question whether to have or not to have treatment. However, they do appear to be re-iterating in a more succinct way what I said before. It would not be offered (and paid for) if it was not seen as providing the best medical way forward to minimise the risk of recurrence. As I said, chemo and Herceptin doable, with so many variances of side effects, it is so individual and can't be predicted. Take care and I am sure you will make the right informed choice for you. Best wishes to all. Jayne.

[Guest user]

I had an ER+ grade 2 tumour with one node involvement. All margins were clear after a WLE. The oncologist had said prior to surgery that he would be surprised if I needed chemo. Hospital had started a trial on an additional test on breast tumours-think it does get used on other forms of cancer. Believe it's a K65/75 (so many numbers to juggle that's one that slipped past me). Got a high medium on this test-was told this was unusual given the tumour I had. Opted for the chemo as the mark had been lowered somewhat by 4 months of neo-adjuvant letrozole.
Won't say chemo is a total breeze but -as others have said- it is do-able. And I live on my own.

[Guest user]

Information on how to get in touch & order the Oncotype, your medical team needs to cooperate to get the tumour sample correctly prepared. http://www.oncotypedx.com/en-US/Breast/HealthcareProfessional/OrderingOncotypeDX.aspx
I am also doing 6 monthly Zometa off label to protect bones, this is done privately. You could also ask for a PET/CT to check for any early spread.

[pesteringpixie]

Hi

Thank for advice horsie - I have asked about CT and bone scan but they are not offered. I suggested I can pay for these privately but told there is no benefit as they can only pick up tumours not micromestasis.

Have also read about Oncotype DX but again not sure of access in UK.

be gald when tomorrow is over and decision made!

have a gentle day everyone:)

[horsie5050]

Haya, Lulu and Lemongrove are making very good points, both ladies are very knowledgable. I had NO node involvement. BUT a CT and Bone scan the day before surgery showed a tumour in my liver and hip bone. My treatment plan was then changed to accomodate the liver tumour.

What I am trying to say is that get a CT and Bone scan first, then with more knowlegde you can make a decision.. As for diet - you need to do what will make you feel good about yourself. There is nothing wrong with the Penny Brohn approach, we could all do with a bit of advice about healthy eating and how it helps different parts of our bodies, BUT don't rely on just food alone to cure you - it just isn't going to happen. Me? -I'm a everything in moderation kind of gal, love raw veg salads, lean meat, fresh fruit and bake all my family's food from scratch, but also adore cadburys chocolate and wine...

As for refusing PROVEN treatment because of worry about bone density loss - ask your onc to give you Zometa or some other bone stregnthening drugs, and get your heart healthy, if it isn't already.. Good old fashioned walking everyday will stregnthen bones and exercise your heart muscle to make both stronger...

Good Luck with everything..xx

[Lulu34]

I pretty much agree with everything Lemongrove has posted... It is our decision PP but the certainly wouldn't be offering treatment unless it was felt to be beneficial... If you wish to refuse treatment you are entirely entitled to do that.

The issue with regards the long term effects of treatment... There may well be a risk of heart degeneration or bone loss with herceptin but there may well be an even higher risk of cancer and death with out it.... But only really you can decided but do speak to your onc and weigh it up yourself.

Lulu

[Lemongrove]

Pesteringpixie, yes of course there are side-effects, but then any treatment is a trade off between cost and benefit. As you say you, you require more information about the long term benefits for those with stage 1 ER+ BC, so I have provided a link below that might help in this respect.
With regard to your final point, I doubt you are being offered this treatment just to conform to Government policy. The NHS don't spend thousands of pounds on treatment for a patient unless they think it is necessary. Even if they are just following policy - policy is guided by medical opinion. Also, given the Govts propensity to save money, I doubt they would fund such expensive treatment if it was not absolutely necessary.
Link to study:
http://www.breastcancer.org/treatment/targeted_therapies/new_research/20110301.jsp

[pesteringpixie]

Lemongrove and blondebutbrainy

Thank you for your participation. I think some of the things (amongst a zillion) that concern me are
1) there are no long terms studies for outcomes of herceptin with stage 1 ER+ cancers
2) the increased risk of cardiac degeneration and bone loss - I have family histories of both (parents and grandparents)

So I will be guided by the consultant Onc but need to feel comfortable about risk benefits.

I am aware of the cost of treatment but also aware of the government mandate that it has to be offered unilaterally to all women who test HER2 +

Life was a lot easier before BC started to flounce her stuff 😞

[BrainyBlonde]

Hi, Just to add to the confusion, I was diagnosed with Grade 3 no node involvement but not given a choice of whether or not to have Chemo or not, just whether to have it prior to surgery or after surgery. Because the tumours were large I made the decision to have chemo prior. I'm glad I didn't have to make a decision of whether or not to have it at all though!

A no node involvement result cannot always be relied upon either. My sister, who sadly died of breast cancer with secondaries last July, was tested after her initial diagnosis and was told there was no node involvement. She had chemo too but was HER2 negative so did not have Herceptin.

Jan
x

[Lemongrove]

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.

[pesteringpixie]

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

[CanonJane]

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

[ChoccieMuffin]

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.

[Guest user]

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 everything.my 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

[CanonJane]

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

[Zeppa]

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.

Margaret

[Guest user]

Jane,

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?

[poppyD]

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

[Guest user]

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

[filosofie]

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.

[tommyticklemou]

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.

TTM

[ChoccieMuffin]

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

CM
x

[pesteringpixie]

Hi

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.

[Guest user]

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

[Guest user]

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

[JulieD]

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.

Julie

[Lulu34]

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

[pesteringpixie]

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.

[Lulu34]

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....

http://www.herceptin.com/hcp/treatment/adjuvant/dosing.html

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

[countrygirl]

Hi, in August 2008 at age 57 I had Mx and clearance, nodes were clear and my diagnosis was Multi focal IDC, strongly ER+ PR+ and HER2+++. I was given the choice of chemo and Herceptin before starting hormone therapy. I agonised over the decision and did everything I could to get my onc. to give me a clue about what she would do herself, or what she would recommend to a family member.... she would only say "It's entirely up to you, think about how you would feel if you don't have the treatment and the cancer came back, and also think about how you would feel if you go through the treatment with any attendant side effects and it still came back". I had 24 hours to decide, so I went to the bc lounge and looked at Dr Susan Love's Breast Book, and sat quietly and thought, probably even prayed in a vague sort of way. I realized that for me personally I would always view the chemo as a poisonous treatment that I would feel completely negatively about, and the thought of seeing it going into my arm was just not something I could see as possible. I decided against chemo and felt calmer although a little frightened, next day I phoned the onc and told her and she said "that's fine, if the benefit had been over 10% I would have tried to persuade you" (for me the benefit would have been 6.3%).

Sorry for the long post but I know how hard the decision is, I am very healthy and happy with my decision, it was the right one for me, it really is the case that gut feelings can help.... you will take the right decision for yourself.

Very best wishes, Jane x

[Esha_Ness]

Hi
It is so true that you must be happy with any descision that you make. There is no right or wrong answer and the Doctors can advise,based on statistics and trials, but do not have the dream cure answer to this terrible disease.

I had my primary diagnosis in 2000. Grade 2, 6mm lobular that did not show up on a mammagram. I was told I had a good prognosis, caught early, no lymph spread and had 3 opinions . I also had a grade 3, 1cm ductal.
I was treated with bilateral mastectomies,zoladex and hormone treatment.
I had a healthy vegetarian diet, no alcohol,and high exercise routinefo 10 years following my primary diagnosis.

In 2010 I was diagnosed with secondary spread to my bones. This is everyones worst fear.The spread has been from the 6mm grade 2 lobular tumour.
I think back and do think that if I had had chemo this may not have happened ? I am nearly half way through chemo and apart from loosing my hair have not had any side effects and look and feel well.

[Guest user]

Hi lostinfrance

I absolutely agree that it is an individual choice. I can't imagine how you must have felt having your daughter also diagnosed...... I have two daughters and that was a real concern for me about them being at an increased risk. I agree about the Herceptin. I had it described to me as a drug which could switch the HER2 switch to off as opposed to on (simplistic I know), however it made sense to me.

I wish everyone well in their personal journey and I hope you are continuing to do well. J.

[Guest user]

Jaynek you had exactly the same age at diag and treatment as me for exactly the same 1.9 tumour....dunno if you had node involvement but i had microbits in one node...I also threw the book at it! My daughter had exactly same but no nodes and 1cm and decided to have the chemo even though it only gave an extra 1% so she could have herceptin....herceptin is an amazing drug and cannot be used without chemo 😕
However everyones choice is different and p-pixie what ever choice you make WILL be the right one for you x

[Guest user]

worked it out now so pm will be on its way. J.

[Guest user]

Hi there (me again!)

I worked out how to pm you (I think) but you don't seem to be on the list though neither am I. A bit strange....... Is there anyone can help us with this please?

Thanks, J.

[Guest user]

Hi there persteringpixie

I would be more than happy to share with you through pm. Would you mind contacting me through pm - I am not sure how to do it!!

Hope to catch up with you there soon, J.

[pesteringpixie]

Jaynek:

Thank you for your clarity and objectivity. I will certainly listen to my oncologists recommendations.

Yesterday I saw the oncology registrar - he told me that taking the chemo and herceptin increases my survival by 2% at 10 years. Much lower than the statistic you were given - so shall wait to see the head honcho on Wednesday. What grade are you?

Would you be able to share your experience of the chemo and herceptin with me? The effect it had on you and your lifestyle? If you feel that is okay, please pm me.

many thanks and a wobbly smile.