Decision time: chemo or not?

Hi this is my first ever post,
Four weeks ago I had surgery to remove a 12mm tumor which was ER+ and node negative. I was initially led to believe that it was so small that I wouldn’t be much of a problem and I would probably get away with chemo altogether.
When I went to see the oncologist on Monday he informed me that further tests had revealed I was also HER2 postive.
He recommends chemo (FEC) followed by radiotherapy, followed by herceptin every three weeks for a year. I can only have herceptin if I opt for the chemo.

If it wasn’t for the HER2 positive thing, chemo would give me an extra 7.5% chance of the cancer not coming back.
But I really dont’ know what HER2+ means in terms of increasing the chances of recurrence.

Obviously the thought of chemotherapy really frightens me!
I know the decision is mine, but I would really appreciate any comments.
Thanksx

Hiya Lorna,

I am so sorry you’ve had to join us but ‘welcome’ to this most awesome site. I too am Er+ and HER 2 +. I was diagnosed in March, age 34 and had a right mastectomy and total axillary clearance a week after diagnosis.

I have recently finished my chemo, which I started in May. I was on E-CMF which is basically what you would be having if you decide to go for it, except yours doesn’t include the ‘M’.

Chemo was tough but very very doable. There were many low days but far far more good days. It honestly wasn’t as tough as I had allowed myself to imagine it would be. I got off very lightly side-effect wise, as do many people. To be honest though, if I can get through it then I’m sure anyone can!

Next its rads for me, then a years worth of Herceptin. The value of Herceptin for a HER 2+ person is immeasurable I believe. The benefits are enormous. Personally, I want everything that they can give me!

Obviously the decision is totally yours but I would say ‘go for it’. Anything that you can do/have to try to prevent a reccurrence has got to a good thing. As I said before, chemo really IS very doable, and having it will allow you to have Herceptin.

I wish you well as you continue your journey,

Take care and let us know what you decide,

Kelly
-x-

Thanks Kelly,
It is really so good to hear from you. I forgot to say I am 41. Glad to hear that you have the chemo behind you now. Were you able to go to work or do much while you were having it?
Sorry to be dim, but what exactly does total auxillary clearance mean? Not sure if it means the nodes were clear or not.
I will keep you posted.
LornaX

Hi Lorna
Welcome to the site - so sorry you had to join us though. HER2+ used to be bad, bad news before we got herceptin and now our chances are vastly improved. I would recommend reading up as much as you can on this site and on cancerbackup so that you understand the treatments offered to you. it sounds as if they’re throwing everything at the cancer and that’s been my (positive) experience of my own care. I’m waiting to see the onc about whether I’ll get herceptin or not. My attitude throughout this has been to take whatever is available that will reduce the risk of recurrence. i still have a lot of living to do!
Total auxilliary clearance means removal of all the lymph nodes in your armpit - all 20-30 of them. the purpose of removing them is diagnostic - the doctors use the number of lymph nodes involved to “stage” your disease and to work out further treatment. i think your node negative result must mean that you had some or all of the nodes removed and there were no nodes involved which is very good news. Again there’s lots on this site about all this and you can call the helpline - which is exactly what it says on the tin - loads of help!
Hope this helps. i look forward to talking with you again.
Sarah
XXX

Lorna very rarely would I tell anybody what to do as it is not pc and fashionable but if her2+ take everything that is offered to you. hope this is not taken wrong sure I’ll get me hands slapped for not being airy fairy and saying things like it’s your descision your body etc. Her2+ aggressive hit it wi’ all you got girl love Eileen

Lorna I agree with all Eileen has said I Had a local recurrence after 5yrs I had to have chemotherapy again so I could have the Herceptin.as it was not available in 2001 Take care Linda

Thanks for your comments Sarah, Eileen and Linda,
I do know I had four lymph nodes removed which were all clear. I feel very lucky to have been offered Herceptin. I know I have to go for it really - it’s just very scary.
So basically, it seems that HER2+ (before Herceptin) meant there was more chance of the cancer coming back, because it is more aggressive. Is that it?
Speak to you all soon.
LornaX

Hi Lorna

pants, just spent an hour writing a reply and hit the wrong button, lost it all. Try again.

I too am 41. Was diagnosed in March and had surgery to remove a 15mm lump which was successful, he got a wide clear margin and my four nodes were also clear. I am HER2 + and Er+. The Oncologist suggested chemotherapy, followed by radiotherapy, followed by herceptin and then tamoxifen.

I started FEC in May, finished in August. I was in a terrible state, not knowing whether to or not but when I asked the oncologist, how serious would it be if it came back (my feelings at the time, were, let’s get on with life and if it comes back, then I’d have the chemo) and her replying it is incurable (but treatable with many people), that put it in perspective!

I was scared too, I think it’s more from what is protrayed on t.v. and in the newspapers etc but having been through it, it is ok. It’s not nice but like everyone else says, it’s ‘doable’. There will be worse days than others but the side effects are temporary and the benefits long term. Hints - If the cyclophosphamide hurts when they inject it (I have very sensitive veins), ask for it to be given in drip form for the remaining treatments. I was completely unaware of it going in after this. Something else I found useful - ask the nurse to warm your hand up in a bucket of warm water before they insert the cannula, this will dilate the blood vessels and soften the skin making it much easier. I also used the cold cap and kept my hair (it thinned but no one could tell). If you have this, make sure they wet the hair well and comb the conditioner through it. I also put a piece of gauze between the forehead and cap as the cold does hurt against the skin, made it more bearable.

Radiotherapy - easy peasey. I did have a sore nipple, which is much less now and the skin is still slightly pink but not sore. I did not get tired, I joined a gym and worked out for two hours before each session.

Herceptin - started that last Friday. I know statistically the benefits are extremely high and as Eileen says, being HER2+ means the cancer is aggessive. My feelings towards herceptin are - as I’ve subjected my body to chemotherapy (and for a small measure of benefit), I might as well accept anything else they can give me, particularly herceptin with it’s known benefits for early stage cancer. If you ring Roche, the makers of herceptin on 0800 3281629, they’ll send you an information booklet with a diary in the back for your treatments and they should be able to answer any questions you have. I know you have to have four chemotherapy treatments before the government will fund your herceptin. Thank god we don’t have to fund treatment ourselves (herceptin alone costs £27,000)!

I know it is a scary time and there doesn’t seem much time to digest the news of being diagnosed with cancer before everything starts. I have found talking to a Macmillian counsellor has helped but you may have to book early as there is usually a long waiting list.

The best of luck. It sounds from your last post you have decided to receive both the chemo and herceptin - is that right?. I think most people suffer very few side effects from the herceptin and can carry on with life, it’s just extending the whole cancer thing by another year that gets me and having another 18 or so needles stuck in me that doesn’t help but I keep telling myself, at 41, I may not even be half way through my life yet and a year or two out of it is a small price to pay.

This is a great place to get support, especially when you get ‘real’ answers to your questions.

Best of luck.

Poppy x
(not going to risk previewing and losing this again, so please excuse any incorrect grammer or spelling!)

Hi Poppy,
It is a great support to get your message. Sorry you had to write it twice, but it was well worth it!

It sounds like you were in a very similar situation to me. I didn’t have a lump as such. I went with another lump which turned out to be clear. The radiologist found the cancer with ultrasound (it didn’t show up on the mammagram). No one was very concerned about it but in the end they decided to do a biopsy controlled by ultrasound just to be 100% sure. It came back positive but the consultant said it was very small and I might not have to have chemo. Turns out I’ll be having the full works.
Did you think you’d have to have chemo from the start?
With the FEC did you have six sessions three weeks apart? I’m not sure whether you get all three drugs at each session or whether you get one at a time. I know I can check this with the oncologist on Monday.

Not sure about the cold cap. I’ll find out more about it. I seems to have worked for you. Was it worth it do you think?

Sorry about all the questions. Speak to you soon.
Lorna X

Hi Lorna

No one mentioned chemotherapy at the beginning. A cousin of mine who was a specialist nurse said she felt they were leading me ‘gently’ down the path to chemotherapy. This upset me immensely because no one had mentioned the word and I felt she was being very unprofessional by telling me this and all the subsequent worry it caused me. The morning after my surgery, I told the breast care nurse what my cousin had said and she said, “well, I think you need to prepare yourself for the possibility of it”. At that point, I knew my cousin was right.

I did have 6 sessions of FEC and yes they were 3 weeks apart. I had 8 syringes of drugs altogether - they work out the quantity on your height and weight (I’m 5’ 6" and 9.5 stone). The first few are anti-emetics to help you stop feeling sick. They started with Epirubicin, followed by either Cyclophosphamide or the Fluorouracil or sometimes alternating the C & F due to the discomfort (that was before I had the C & F in drip form).

When I accepted I would have to have chemotherapy, I thought I would not bother with the cold cap and have fun with wigs and scaves but when it came to the crunch I opted for it. I’m glad I did use it. There were days when I felt quite low (my husband works away and I didn’t hear from my or my husband’s family (except for two members) during chemo or radio so felt at times, unsupported). I know during those times, that if I had looked in the mirror without hair and be faced with visual signs of cancer it might have been too much for me. I have been lucky because I have looked very fit and healthy through the whole thing, no one would guess I am being treated for cancer unless I tell them. Another reason I decided to try to keep my hair - very vain this - I tried on short style wigs and decided I prefer my hair the shoulder length it is. I didn’t want to go through the ‘growing’ out stage. I know the cold cap adds time to the treatment but it was only about 2 1/2 hours in total, a small price to pay for the benefits.

I did find the Macmillian, ‘Look good, feel good’ workshop great fun and highly recommend it. You are given a bag of cosmetics (perhaps one day they will include products without the parabens!) and shown how to use them. Psychologically, it really helped because it gave me the incentive to spend time on myself and the results made me look good and therefore feel good - certainly recommend it, if you haven’t already taken part.

Don’t apologise about the number of questions, I was helped and still am, by others on here and if I can do the same for others, it makes going through this experience a bit easier. Looking back over the past few months, looking at what was to come, it seemed daunting and long. During the treatments, you are busy organising life around a time table and now I’m on the other side, looking back it seems to have passed quickly. With the Herceptin, I’m at the front of it and a years worth of treatments looks daunting but I dare say, once it has all finished, it will have seemed not so bad.

What I found really helped and still do, is organising treats and things to look forward to - I was out shopping in Plymouth yesterday, which is why I didn’t return your post until today. I have caught up with friends and made new friends via the various support groups I have found locally. Your breast care nurse should be able to put yourself in touch with some. I have found one for younger ‘members’, which has been great. Which county do you live in?

Anyway, must go. I’m helping another support group and women’s institute with a fashion show next week, so have to try on some clothes today.

Poppy x

Hi Lorna,

I was 44 at dx in February. When I had my mastectomy in March a BC nurse warned me that whatever the results of the surgery I should be prepared to get chemo & rads due to my age - the younger you are the more they like to throw at you. As it turned out I had a gade three tumour with 3/16 nodes affected, ER+ and HER2 borderline, so I needed everything anyway. My onc dithered about herceptin for a while but finally decided I should have it - again because of my age.

I worked through chemo - taking off the chemo day plus two or three others each cycle. I work part time and I have a desk job - it would have been different if I was on my feet all day.

XX

Hi Lorna,

sorry its taken me ages to reply to you! Total axillary clearacne just means that I had all my lymph nodes removed at the same time as my mastectomy.

I have not worked at all since I was diagnosed in March, although I am planning to return part-time in the new year. I was very lucky as I did not have to work during chemo as I remain on full pay. Personally I just wanted to get through the chemo without a hitch, and as I work with loads of people who are always getting bugs, I though it best to steer well clear! It worked mind you, and I got through chemo with no probs at all.

I hope all goes well with the onc on Monday, be sure to let us know how you get on. I started a thread titled ’ top tips getting through chemo’ on the ‘undergoing treatment - chemotherapy’ page. Loads of people have added to it and hopefully you will find it really useful,

Take care,

Kelly
-x-

Hi Lorna,

Unfortunately I developed breast cancer before HER2 or herceptin were around. I had 3 recurrences (or new primary tumours) and i really feel that had herceptin been available then i would not have gone through all that - who knows. But I had considerable involvement 5 years ago with nodes in my neck, chest area and collarbone on which no chemo seemed to be working - it kept coming back. (I also have bone mets). They then checked back and found I was HER2 +++ and I was put on herceptin 4 years ago and have had no more problems. Go for it :slight_smile:

dawnhc

Sorry I took my time in getting back to this discussion. I had a really bad experience with anti-depressants as they made me feel severely depressed and anxious. Anyway, I have stopped taking them now and I feel perfectly fine (just normal levels of anxiety!)

Thanks so much again for all of your comments. Thanks Roadrunner. I always like to hear people say they worked through chemo as it makes me feel more confident about having it.
I saw the oncologist on Monday and, of course, accepted his kind offer of the full works. 6xFEC plus rads plus a year of herceptin (and tamoxifen - not sure when that fits in but will deal with it at the time!)

Hi Poppy,
Thanks again for all the support. I live in Shropshire. I guess you live somewhere near Plymouth as you said you had been shopping there. Wonderful! I long to be by the sea, I find it so relaxing. We do seem to have a lot in common. I notice I am a couple of inches shorter and a couple of pounds heavier that you. I don’t have any children - we were just in the middle of trying. A last ditch attempt at my age really - I just don’t know where the time has gone.
I hope I cope with the chemo as well as you seemed to. I have decided not to bother trying to keep my hair. It is blonde and shoulder-length at the moment so I have decided to have it cut really short next Tuesday. I thought It might soften the blow when it does fall out.
I haven’t got a date for my first chemo but it will be in 2 or 3 weeks. I’ll probably be on to you again before long with more questions! XXX

Hello Kelly,
I have decided I will not be working through chemo as our office is a terrible place for bugs. They just go round and round at this time of year. Your Top Tips for Getting Through Chemo is brilliant! Invaluable! I will go through and make a shopping list over the next few days.
Did I read in one of your comments (somewhere) that you live in Shropshire. I wonder if you had treatment at the same place I am going to have mine. I live in Telford. XXX

Hi Dawn,
Good to hear the herceptin has worked for you. How long did you take it for, or are you still on it? XXX

Take care everyone,
Lorna x

Hi Lorna

Just read that you are in Shropshire - me too! Have had WLE and some lymph node removal. Saw Oncologist yesterday at RSH. They have not got results on HER2 yet. But he has said that if positive I will have to have chemo and Herceptin. That was a bit of a shock. I have CT scan on Monday and then 3 weeks of radiotherapy.

When are you at RSH next?

Love madeline

Hello Madeline,
Does that mean that if the HER2 results are negative you will just be having the radiotherapy and not chemo? Did he give you the results from the WLE and the lymph nodes? When did you have the operation?
When I got my results after the operation they were all really good news. They didn’t mention that they were still waiting for the results of the HER2 test. I’m glad they didn’t really because I would have just worried about it. The oncologist just informed me I was HER2+ when I went for the first meeting with him.
It sounds like you are going ahead and having the radiotherapy first anyway.
I will have the chemo first starting next week on Wednesday.
I’ll be at RSH tomorrow (TUES) to look at the wigs, and again on Wednesday morning.
Let me know how you get on.
Lorna X

I finished chemo over a year ago now and have been on herceptin for 16 months. As far as I’m concerned it really does seem to be free of side effects, which is particularly handy bearing in mind I’m on it ‘indefinitely’.
Chemo’s rough, but it’s only a few months and then you can get on with the rest of your life.
As a friend said, the great thing about the NHS is that they don’t offer you unnecessary treatments because they can put them on the bill. They only offer what’s really proved it’s worth doing.
Best of luck. Like most things, being treated for cancer isn’t as bad as the worrying that precedes it.
Lots of love,
Lynn

Hi Lorna, sorry I lost track of this thread so didn’t see your question earlier. I have been on herceptin since beginning of 2003 and will be for the foreseeable future. I have to take that and bisphosphonates (pamidronate) because I have extensive bone secondaries but they seem to be well under control. I felt very much like you do over losing hair and two of the chemo regimes I have been on were ones where you lose all your hair. I asked to have the cold cap during them as I really couldnt bear the thought of being bald. It worked for me, and I thought was well worth enduring the discomfort.

Dawnhc

Thanks Lynn, very wise and reassuring words. The bit about the worrying is so true.
Lorna X

Dawn - Thanks for coming back to the thread. I’ve got the date for my first chemo next week on Wednesday (FEC) so thought I would pop over to the ‘Ho hum it’s that time again’ thread soon and see how everyone is getting on with their treatment. I have decided not to do the cold cap. I have just had my hair cut really short and bought a short wig to match. I am quite pleased with it.
Lorna X

Hello everyone
i have just read all your comments and am at least more educated and a bit better informed for receiving my results from WLE and I had 5 lymph nodes removed last Monday. Results day next Monday, as you have pointed out the waiting is bloody awful. I am 46 and have three lovely children, 17, 6 and 4 and I think that I have already resigned myself to taking everything on offer and to being bald ( loosing eye lashes mind you…is a different matter of vanity all together!!!) This site is just so cuddly and I send you all my love and best wishes. xxxxxxxxxxxx
Kaz xxxxxxxxxxxxxx