Making decisions on chemo

Have had my lump removed. Grade 2. One breast node involved but no underarm nodes. Will be going to see oncologist soon to discuss chemo. It’ll be my decision but just can’t decide. Obviously I will take oncologists advice but am having a think about it in advance (understatement of the year). Has anyone been in a smilar situation?

I AM SAME AS YOU HAVE ONCOLOGIST ON TUES , BEEN TOLD I NEED CHEMO RADIO AND HERCEPTION 3 FOR THEM TO WORK . ALISON C

Hello Maire & Alicam57.
Im butting in from the starting chemo in October thread, hope you dont mind!
I was DX with 2 x hormone fed, stage 3 tumours on 13th July & had mastectomy of right breast at end of July with 20 lymph nodes removed & 0 affected! Although i was told chemo was ‘questionable’, due to my age (39), i was advised to have further treatment. So 6 x FEC chemo followed by 15 x radiotherapy. i must admit i did contemplate not having further treatment but then i thought to myself ‘ive been so lucky so far, wot if in 12 months it comes back? at least if ive done everything possible to prevent that, i will never have the ‘wot if’ thoughts’.
Chemo is not pleasant (im day 12 of my 2nd session) but, as our thread have said many many times, is it DO-ABLE. And for the sake of 4-6 months out of your life, the pros def outweigh the cons. Obviously i dont know your personal situation but im just turned 40, single mum to 2 kids (aged 8 & 19) & so am doing everything i can for them & for the rest of my family & friends. Please discuss the pros & cons with your oncologist, BCN & family but please dont make your decision on the fear of what chemo will do to you… Hope everything goes ok. Take care x

Maire, I was i a simliar boat,lumpectomy IDC grade 2 2.5cm no nodes, HER2- ER/PR+. I was advised that statistically 3 out of 100 hundred women in my situation would benefit from chemo and for the other 97 it would not be necessary - unfortuantely there is no way of knowing which group you fall into. I was not prepared to risk being one of those 3 and having regrets later so welcomed the chemo. I am 52 and have 2 teenagers, I really felt and still feel that I needed to do everything in my power to fight this disease.
I have had my third FEC, its not fun but it is absolutely DOABLE and as Ribby says, it is only a few months. If you do go that route, you will get so much support from others on these forums which has helped me so much as we are not alone in this. Of course, you will make your own decision and it will be right for you but peace of mind that I had left no stone unturned was the decider for me and my Oncologist clearly agreed with the decision although he was very careful not to sway me one way or the other in advance.
Good luck and let us know what you decided xxxx

Thanks for replies. I’m 49 with 3 kids. I work with pre school children and hate the idea of stopping working (loss of salary/time to dwell etc). I must admit if I can avoid chemo I will, but also don’t want to be sitting here in 2 years time thinking-I wish I’d gone down the chemo route.
My sister’s been through it and ended up with a hysterectomy due to effects of chemo on muscles etc. But she needed chemo as lymph nodes were affected.
Seems like an impossible choice at the moment.

It is a really tough decision Maire, and luckily I can continue to work as i can work from home, much harder when working with kids because of the risks of infection etc. I make sure I go out every day, even if only a quick stroll, and have had the chance to catch up with friends for a coffee which I wouldn’t be able to do if working at the office. It is important to still have a life even if a little less energetic. I had my 3rd chemo on Thursday and I cooking the family roast in between posting, I have been for a slow stroll today as yes, I am more tired this time but still being Mum and doing the normal Mum stuff and running around after them as the kids feel better when I am ‘normal’ :slight_smile:
I think it really boils down to whether you can live with the risk, as Libby also said, dont let the chemo itself sway you too much as it is over quickly, only a few months out of your life.
I really feel for you as I was in the same boat but I made my mind up quickly for the reasons I have already said and I can only say that I have no regrets whatsoever now I am on the chemo route.

Hi Jayne - fancy seeing you on here!! lol x
Maire - everything i said before & everything Jayne has said on top!!
I understand being off work is inconvenient & worrying - I lost my job in February & had interviews lined up when i was diagnosed so have had no option but to not work. As regards dwelling - dont look as it as time to dwell, look at it as time to fight! also the amount of appointments & things to be doing inbetween sessions (ie. complimentary therapy, support groups, making the most of the good days & generally resting) means it soon passes…
At the end of the day, you can only decide wot is best for you but you do have to look at the bigger picture.
Also, if you do decide to do chemo, then def get on a forum. Us ‘October Pumpkins’ (Jayne included!) are amazing & the support, advice & general chitchat is a huge help.
Good luck with whatever you decide to do… xxx

Thanks again for the replies and I do understand that no matter what the odds, to refuse chemo seems like a bit of a gamble.
Is there anyone out there who decided against chemo and lived to tell the tale??

Hi Marie,
I have just made my decision to have chemo, I am 48 grade 3, stage 1, er/pr pos, no nodes, 15mm lump with insitu also. Need to have a mastectomy also. I truly sympathise with you on this one, it took me four weeks to decide. it caused me great distress. My initial decision was a no, my initial meeting with the oncologist wasn,t a good one given percentages and that was it. Looking back i think this is what i have struggled with , I have been very stressed out. There is a old thread that helped called optional chemo which summons it up a little. For me it was what i felt more comfortable to live with in the long run, I am in no rush to die from cancer and i do not want it coming back, I will feel a lot more confident about the future and be able to move on more without constantly thinking i should of taken chemo . It is a difficult one long term side effects and actually doing chemo scares me thats why i resisted it so much!. Surprisingly once I made my decision I actually felt calm about it thats after going through stomach churning stress about it, I start my treatment tomorrow. I wish you luck and will give you a hug also.

Let me know how you get on with treatment. You seem to be going through exactly the emotions I’m experiencing.
I just can’t stand the thought of chemo and what it does to the whole body. Having said that i’m not keen on tamoxifen either. I’m a pretty anti pill kind of person. Never take any medication if I can avoid it (apart from a wee wine, purely for relaxation of course!)

Hi
I just posted a reply but it’s ended up in cyberspace somewhere.
I’m nearly 5 years out from dx. Initially I was told that it was grade 2 with no lymph nodes involved. No chemo necessary. After surgery it was grade 3 and 3 lymph nodes involved. Chemo was a certainty.
I remember sitting waiting for the first chemo and thinking, ‘I just want to run away’. I didn’t and am so glad I stayed.
Chemo isn’t pleasant but it is ‘doable’. Just mark the dates off on the calendar and it will soon be done.
Chemo is your friend, in the long run. It’s a small price to pay to get your life back.
I worked all through chemo, and to be honest, I wasn’t fit. I loved my job and didn’t want to lose it, but priorities change, and I was glad to walk away.
Nearly 5 years on and I feel fine, maybe even better than before. Can’t help but think of my friend who refused chemo. She was too scared and refused chemo & she died 18 months after dx.
Do what you have to do.
xx

Hi
I just posted a reply but it’s ended up in cyberspace somewhere.
I’m nearly 5 years out from dx. Initially I was told that it was grade 2 with no lymph nodes involved. No chemo necessary. After surgery it was grade 3 and 3 lymph nodes involved. Chemo was a certainty.
I remember sitting waiting for the first chemo and thinking, ‘I just want to run away’. I didn’t and am so glad I stayed.
Chemo isn’t pleasant but it is ‘doable’. Just mark the dates off on the calendar and it will soon be done.
Chemo is your friend, in the long run. It’s a small price to pay to get your life back.
I worked all through chemo, and to be honest, I wasn’t fit. I loved my job and didn’t want to lose it, but priorities change, and I was glad to walk away.
Nearly 5 years on and I feel fine, maybe even better than before. Can’t help but think of my friend who refused chemo. She was too scared and refused chemo & she died 18 months after dx.
Do what you have to do.
xx

Maire, if it helps at all: There are quite a few of us that have had to make that ****y decision.

I was diagnosed February 2012, then aged 51. WLE, SNB on Feb 22nd. Nodes clear, margins clear, Er+ Her2- BUT tumour was grade 3 and 2.8cm and therefore stage 2. I was TOLD I’d need surgery, radiotherapy and hormone therapy and was extremely shocked when I met the onc to be offered chemo. I was exactly borderline with 2 out of 4 chemo criteria ticked. (3 and I’d be TOLD to have it, 1: it wouldn’t have been offered!)
My onc started the chemo conversation with “some therapies have a very high price to pay, in terms of long-term health, for the benefits they give.” She stressed that both radio therapy and Tamoxifen were quite low on long-term risks, but laid it on the line about the risks of chemo. She said if it was her she’d probably have it though.

I spent the worst week of my life, almost constantly crying and in a permanent one-man-debate with myself. In the end, the fact that my cancer was hormone +ve and that chemo WOULD NOT GUARANTEE the cancer would never return - so if I declined it and it came back I will tell myself IT COULD HAVE DONE ANYWAY, and I’ve saved myself 6 more months of stress and being unable to work. (I work with kids too; in a school!) My onc showed me the survival statistics and having chemo would only raise my chances by 5% from 80% to still be here in 10 years. Bearing in mind both my parents died (aged 51 and 73) from heart conditions,.I decided I wanted ‘quality not quantity’ and wanted to get on with what’s left of my life.

Once I’d made the decision that was right FOR ME, I felt suddenly much calmer and happier. My onc was quite happy with it and then offered me Zoladex injections to stop oestrogen being produced - this has, statistically increased my survival chance by 3% - so nett loss by avoiding chem = 2% (but they’re only numbers based on previous patients who started treatments at least 10 years ago - and treatments are improving all the time!)

It’s early days yet, but I have not looked back and do not regret the decision. The injections are every 3 months. I have mine done by my GP. Others have said they were offered this when they declined chemo (but not before!!), and some have the injections monthly. Apart from hot flushes and some other menopausal issues (which would have arrived sooner or later anyway, as I must have been near menopause!) I’ve not had any SEs… yet!! I am back at work, following a phased return at the end of the summer term and nearly back ‘to myself’ - still get more tired than I used to.

However, you must listen to the advice from your medical team. If your tumour was her2+ you will greatly benefit from Herceptin - and you can’t have that without chemo first. Also, if your tumour was not ER+, Zoladex and Tamoxifen are not available to you to fight this b****** disease!!

In the end, you have to be happy with your decision and unfortunately, only you can make it.

PM me if you want someone to discuss this with further - but I won’t be trying to persuade you either way!! I found talking to the lovely people on the BCC and Macmillan helplines really helped me to organise my thoughts and feelings. They were truly wonderful. One suggested I write down all my arguments for and against chemo and keep coming back to it to add or cross out things that no longer seemed important. I found this a very useful technique.
I wish you all the very best whatever you decide. Remember you are not alone - even though it is a very lonely decision!! xx

Dear Maire
My heart goes out to you. I found that making a decision as whether to have chemo or not was the worst thing in the whole process. I have grade 2 ductal carcinoma measuring 4mm. Had to have two operations as margins were not clear first time round but lymphs were clear. Surgeons thought that chemo would be beneficial but Oncologist was not as forthcoming and would not offer any advice. I was told that I had to make my own mind up. It was the worst week and the only time I have been really, really upset. One minute I decided to have it and the next not have it. Eventually I went back to my gp and got copies of all the hospital letters and then spoke to an oncology nurse and to a lovely person at Breast Cancer Care. I was told that without chemo I had a 65% chance of surviving for 10 years and with chemo a 69% chance but 4% is 4% extra life. I came to the conclusion that if I did not have chemo and the cancer came back (as it did with my mother) I would kick myself and six months of treatment, however hard, was a small price to pay. Once I had made my decision I felt a weight had been lifted and am now trying to go with the flow! Having second FEC chemo tomorrow, lost my hair but trying to go one day at a time. I do hope that everything works out and that you make a decision that is right for you.
Sue

Hiya…I’ve read all the posts on this thread and just want to add my twopennorth worth…I didn’t have to have chemo if I didn’t want it but…and everyone is different… I opted for it when offered…my tumour was ER+ Pr+ HER- so no herceptin for me…no rads either as only 2 nodes were affected with micromets…after a long discussion with myself…I decided it was a no brainer really…if it comes back at least I have chucked every bit of ammo at it that I could get my hands on…this is what’s best for me and I wish you all the luck with your decision…

Thanks for all the advice it has been really helpful in many ways. Have now seen oncologist and that wasn’t at all as I expected. I was given lots of info. Thought I was borderline for chemo but found out I have the her-thingy and so have been offered chemo, herceptin, tamoxifen. Think I’m getting radiotherapy after all that but that wasn’t mentioned (was mentioned earlier by surgeon though)
I need to ask for a detailed pathology because I don’t really understand the herceptin thing. Seems like they had to retest to make sure those proteins (?) were present. That was a shocker.
Anyway, turns out it didn’t feel like there was any doubt that all these drugs were appropriate.
I can live with the hair loss. Sure I’ll have a wee cry when it happens but I’m much more worried about some of the other side effects-like sepsis and heart failure-and recurrance-gulp!
The worst thing is facing up to mortality- I want to be around for grandchildren (not for a while though!) I thought I was pretty low risk but now I’m not so sure.

Hi.
I am 48 and was diagnosed mid-September with lobular cancer Grade 2 (where lump was 20mm, no nodes involved, and ER+). I am now in the midst of trying to decide between chemo or no chemo but I am truly struggling with this decision.
In addition to the NHS Predict prognosis which was in the low 90% range, I did the US OncoType DX Test (a genetic test using my actual lump). This put me in a low recurrence risk group and gave me a distance recurrence rate of 13 which translates to 8%. I have been told that I will definitely need Radio and Tamoxifen, and that chemo could offer me a potential 0-2% benefit. Oncologist suggested FEC 75 rather than 100 if I was to go for it.
Now, my big question is whether or not the potential small benefit would outweigh the risks? I am also very worried that I might spend the rest of my days regretting it if I don’t go for chemo. Is there anyone out there who has decided not to go for Chemo and just to do the radio/hormone treatment? If so, how did you feel once you made this decision? And how are you getting along?

Marie,
The fact that you are HER2+ makes it a no brainer. You need to have Herceptin and to have Herceptin you have to have it with chemo. Not having the Herceptin is asking for a recurrence. Sorry to be so blunt, but Herceptin is a wonder drug and it has worked for so many women. A 12 month course costs over £32,000 so if it wasn’t worth it they sure as hell wouldn’t be suggesting it.
Basically HER2+ tumours are more likely for recurrence and are more aggressive than not so the Herceptin wipes that out and gives you the same survival chance as non HER2+.
Yes, chemo is tough, but it is at most 6 months out of your life and then at least you will know that you have done everything you can.
Two years ago I had chemo, surgery, rads and 12 months of Herceptin. I went back to work a month after rads and fit the Herceptin appointments in every 3 weeks and by then it was fine. I had a bit of a dip with the heart thing, but medication sorted that.
Once the decision is sorted and the treatment is underway you will just go through the motions and get on with it and time will pass.
Sam

Supersusan - see my post on this thread #14. Also this thread:

Search Results | Breast Cancer Now

Hopefully, someone else who is furhter along the road from dx will be along soon.

Thanks. I didn’t know about the her2 thing until the onc told me. Up until that point I only knew about the oestrogen. It was a bit of a surprise. Can anyone tell me what the + means. I know I sound daft but I don’t have all the lingo yet.