The choice - to have or not to have chemo? Any advice?

Hi,

I was diagnosed on 25 June and have just completed two rounds of surgery with WLE and re-excision and SNB. Grade 2 lobular, nodes clear, ER+, HER-, lump 16mm with clear margins. I have been recommended to have radiotherapy (pretty stupid not to take that one) but am then given a choice between the other adjuvant therapies. Tamoxifen is pretty much a given as my cancer is highly ER+ve, but I have been also offered chemo and the choice is up to me.

Has anyone else seen or used the adjuvant online programme? My consultant showed me the various benefits of the treatments which give various percentages of life expectancy depending on what treatment I opt for. As it stands after surgery and radio I have a 74% chance of being here in 10 years. Tamixofen alone gives me an added benefit of 9%, chemo alone is 11% and the use of both chemo and tamoxifen is 16% added to my existing 74% likelihood of still being here in 10 years time. I think because I am 43 I am hoping to be here a lot more than 1 years so they give me the choice of whether to take the chemo with all its side effects for the 7% benefit over tamoxifen, or not.

I know we are all individual when we are allocated our treatment and no-one can compare exactly to me but I wondered if anyone else had been through this situation and if so, how on earth did you make the decision?

I am not especially concerned about the short term effects of chemo - it’s unpleasant but it is finite and will end at some point. I am, however, concerned with the long term life changing effects of it - I would hate to go through it and then find life wasn’t worth living and I might as well have died of the cancer in the first place!

The doctors won’t advise me one way or the other - if the % was below 2% they say don’t bother, and if it’s over 10% they say go for it - but I am slap bang in the middle so the choice is mine - what a choice to make!

Any advice or words of wisdom out there? I know I am fortunate to have the choice, but in a lot of respects it makes it harder!

Good luck to anyone heading on out there with chemo about to start. I’m thinking this journey is going to get a lot worse before it gets better - I’m feeling fine at the moment.

cheers

Helen.

Hi Helen, it’s a difficult choice and something that only you can decide , I was in a similar position to you in March.

I has a WLE and SNB , invasive ductal,15mm,clear margins,grade 2 , no node involvement,ER and PR 100%,I was 44.

My stats gave me over 90% with surgery and rads, tamoxifen was another 5% and chemo offered an extra 3% over the 10 yrs, the final 2% was taken up by other non cancer illness or accident.

I was told that I was borderline but that was due to my age, if someone older with same results chemo wouldnt have been mentioned.Would have been far easier just to get told to get on with it. However, for surgery I got offered choice of WLE or mastectomy,good to have the choice but does make it difficult.I took the view that if I really needed a mastectomy wouldnt have been given the choice and likewise with chemo.
Im rubbish at being ill and with needles so didn’t relish the thought of that but also of the long term side effects,and for me 3% over 10 years the risks outweighed the benefits ,especially now with all this swine flu about, dont really fancy a compromised immune system.

Some people need to feel that they are doing absolutely everything they can to give them the best poss chance, however having chemo is no guarantee that the cancer won’t come back,but the flip side is if it does come back and you don’t have chemo can you live with that?

Sorry, havn’t really got the answer,I just know that I’m happy with the choices I made for me,it is a totally individual thing.

Good luck and keep us posted on what you decide to do, plenty of info and help and support on here whichever way you jump.

Sandra x

out of interest, what is the cut off age for offering chemo ? (I have similar results to you Sandra but am 50) - is it because younger women are reckoned to have more aggressive tumours ?

Did your consultant suggest ovarian suppression, such as Zoladex? There was a study a couple of years ago that argued that two years of it had similar benefits to CMF chemotherapy if you have ER+ cancer.

If I had one piece of advice, it would be that you don’t feel rushed into making a decision. Like you, I was borderline for chemotherapy and my oncologist felt that there was no urgency in making the decision and so I started on Tamoxifen and Zoladex and eventually came to decision not to have chemotherapy. I can’t say I love the monthly injections, or the side-effects, but I’d still make the same decision.

It is a very personal and difficult decision Helen . I was diagnosed last Aug . Invasive Ductal Cancer ER + , HER - , 6mm ,Grade 2 with clear margins , but sentinal node infected.Unfortunate with such a small tumour !! So had axillary clearance…all the rest clear , thank goodness.
I was 60 at the time , but because of the SLN involvement, was offered Chemo…but it was my choice again…

I weighed up all the pros and cons and decided that as I had a friend in the terminal stage of this horrid disease , I had to give it all I could. So I opted for the Chemo…I had 4x accelerated Epirubicin and 4 x Xeloda ( I was offered a place on the Tact 2 Trial , arm 4 ) .

The Chemo was manageable…I was very, very tired,but not physically sick.My taste buds changed ,I went off tea , coffee, chocolate , and spicy food etc . I lost all my hair , even that on my body, which was bit of a bonus…LOL , but it is growing back now…with curls !!!

At least I know now that, if this awful disease comes back , I have done all that I can do, including Radiotherapy and Hormone Therapy, and I have no regrets. Having seen friends die fron BC I felt I owed it to myself to do what I could to prolong my life.

Good luck with your own personal decision…

Hugs,
Jill

Hi

As Poddle said, I was also told that having zoladex and tamoxifen would do the same the same for me as chemo. Although I know that some oncs dont offer zoladex. I was 8/8 for ER and PR, 2.1cm lump, 0/9 nodes, grade 3.

It is a very personal choice but sometimes the benefit from chemo is just not worth it.

Hi Helen. Like you, I had lobular bc, 15mm, grade 2, 0/4 nodes, ER+ 7/8, PR+ 8/8, dx Dec 08. I was told by my onc that chemo would improve my survival chances by 2.5% and they don’t recommend it if it’s below 3%, as the risks outweigh the benefits.

One thing I would say is, don’t assume (like I did) that tamoxifen will be a walk in the park. I’m having major SEs with it and after I see my onc on Thursday, I don’t think I’ll be taking it any more. I had a break from it for a couple of weeks and I’m trying a different brand now, which is better, but I still feel lousy. You may be lucky, as many are, and have no major SEs, but it is a factor to consider. Good luck.

Sal x

It’s just such a personal decision, but I decided not to have chemo. It only gave me a 3% extra chance and as I am 65 (64 when decision was made) I decided against. I had a 8mm with no lymph node involvement and clear margins. Did have 5 weeks of rads though. I have a friend who has permanent ongoing side effects from chemo which has virtually destroyed her immune system. I don’t want to worry you by saying that as obviously most people eventually get over all the problems they encounter, but there are long term side effects for some.As you say being given the choice is very difficult, but I’m happy with what I decided and so was my onc.

you can also input chance of recurrence into the adjuvant online programme and that may also be something to consider as i think we all fear it coming back to get us one day.

my first cancer was ER pos 100% grade 1 no nodes but but was given tamoxifen for 5 years which improves my life expectancy of only 1% where as combined chemo was just under 2%. in terms of recurrence tamoxifen improves rate by 6.8 although if had it combined with chemo it would improve it by 12.8…

there are also different regimens of chemo with differing results.

my second cancer in other breast 3 years later was triple negative grade 3 with no nodes but as i couldnt have tamox or anything hormonal the only option is chemo… and the chemo i am getting only improves life expectancy by 7% like you… but as i am triple negative i dont have any alternatives except a more aggressive chemo which improves life expectancy by 8.8%

but in terms of recurrence the G2 chemo im getting reduces risk of recurrence by 13.5% where as the G3 one im not getting reduces my risk of recurrence by 16.5% which more would half my risk of recurrence.

hope you manage to make a decision that you feel comfortable with.

I was 62 at dx no lymph nodes or vascular invasion,grade2 and 2cm IDC.I was offered and accepted chemo because I am triple negative and chemo was all there was.I had 4xFEC and 4xtax and it was awful.Chemo and rads added 10% to my 10 year survival stats.I have no regrets at the moment[now 65].

Hi Helen - seems a bit unfair to put you in this difficult situation. I am 52 and was dx with 18mm IDC ER+, HER2-, node negative and was not offered chemo, only rads and tamoxifen. I think it would be a very difficult choice to make, particularly when talking about very small percentages. I am glad I wasn’t offered the ‘choice’ as I would have agonised about it. I agree with the others, take time in making the decision.
alex

Hi All

thanks for all your comments - difficult one, isn’t it? I was told that as I am under 55 I would be automatically offered chemo - I think this is so that they don’t get criticised for not allowing us all opportunities to take everything available. I think maybe if I was over 55 I wouldn’t bother to take it and probably they wouldn’t recommend it. And as I lie between the 2% and 10% benefit they won’t recommend one way or the other - it’s up to me. If the % was 3% I would say no, if 9% I’d say yes, but I am at 7% so not very helpful.

I think I will wait till I’ve had a good chat with the oncologist and maybe a second opinion just to see where we are at. I have to say I am absolutely dreading tamoxifen and its side effects and at least if I had chemo and then failed with tamoxifen then I would feel I had given it my best shot. However, I’ve been told by my consultant that the chemo is likely to push me into early menopause in the same way that tamoxifen will, so will have similar side effects. It’s not good whichever way you look at it.

I’m off camping next week and a bit of relaxation so hopefully the decision will just appear in my brain one day without too much stressing!

thanks again for your thoughts

Helen.

under 55s automatically offfered chemo ? I’m very confused by all this…

I was 52 (DEC 2007) when dx with lobular grade 2 11mm, no lympth nodes ER postive. Not offered chemo, despite being under 55, but following a mastectomy offered rads due to close deep margins also tamoxifen.
Chose the the rads but not the tamoxifen which would only have given me a benefit of 2.4%.
Choices are so difficult and so individual - take your time Helen.
M x

Just wanted to say that I have been on zoladex AND tamoxifen for 16 months, and get no side effects apart from about 6 warm flushes a day. I also had nothing at all for the first 3 months I was on them.

Everyone reacts differently so dont be put off by reading about everyones side effects. My onc said that the majority of women on tamoxifen have no trouble at all.

am just adding that i have been on tamoxifen since 1st April and havent had as much as a hot flush! I know that some people do suffer with Tamoxifen but it’s not all doom and gloom. I’m still keeping my fingers crossed that the side effects will stay away. Good luck.

Sandra x

I was diagnosed at the age of 60 and because I had two positive nodes was offered chemo. The onc said it would add only three percent or four percent benefit because I was over 60, but I decided to accept it. I wanted to feel that I had done everything possible to stop the cancer from coming back.
The chemo wasn’t nice and I hated losing my hair, but it was ‘doable’ and my hair has come back beautifully.

Good luck with your decision.
Anthi x

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Hi,
I’m 35 grade 2 IDC 11mm, clear margins/lymphnodes ER+. I was given stats of 3% for chemo, but it was strongly recommended due to my age. The overriding factor for me has been my son who’s 11, as a single mum i felt i had to do everything possible to prevent this recurring for his sake. I think they would’nt offer us this expensive and aggressive treatment without reason, so have started chemo on the recommendation of the professionals. So far i have been lucky and not had it too bad after 1st cycle. I hope after the 6 months of chemo i can stop thinking that every ache and pain i get is something more sinister and get back to ‘normal’ life without that niggling doubt in my mind.
best of luck with your decision - it is such a personal choice.
xx

I am 48 and was given stats of 5%. I really did not want chemo and the oncologists would only say that they recommended it, although my surgeon believed that the benefits were marginal. I dithered for a bit but the macmillan nurse put it into perspective for me by saying ’ if you don’t do this what will be your first thought in the morning and your last thought at night?'. That helped to make my mind up and I am now approaching my 3rd cycle. Its no picnic but I feel that I am doing all I can to stop the BC returning.