I’m 45 years old and have had WLE for 2cm Grade 2 Invasive Ductal Carcinoma. All Lymph nodes removed and last week was given good news that all were clear, and cancer was homone receptive and HER2 neg, so my surgeon was v pleased and explained I would prob only need Radiotherapy and Tamoxifen tho final decison would be made by the oncologist.
I met with my oncologist this week and was surprised to be told I am borderline for Chemo and I am to decide if I want to go ahead. I was given stats for 10 years life expectancy and with rad and tamoxifen it was 94% but with both of these and chemo it is 96.4%.
How can I make this decision? Have any of you ladies been in the same suituation, any comments would be gratefully received!!
Hi, I had grade 3 tumour and after research cos I was 46 and pre menopausal, I decided to have chemo first, I had 4 EC and 4 Tax, then have had lumpectomy and just had a second op for wider margins and full lymph clearence. Results back on Thurs. Just out of hospital last night.
So I was different to you but my friend was in similar position, she had lumps and some nodes removed from both breasts then they took few more nodes, as some of the nodes both sides were affected, they said she could have ovarys removed and no Chemo. She decided that even though it was a small survival percentage difference she decided to go for chemo and she had 4 AC. ( I think it was AC)
She spoke to quite a few people for info and support before making the decision. I think it was a odd decision to have to make, but she decided although she knew it would make her feel rough and its facing unknown side effects, but she decided she wanted maximum % of survival rate as poss. Hope this helps a bit
I would like to help you with ideas that helped me during chemo ,if you decide to go for it.
Let us know what you decide
Take care
Dawn X
Hi Alison
I was dx in December 05. I was 42. I had a 1.4 cm lump, no nodes, clear margins and grade 3. Surgeon said I wouldn’t need chemo. Went to see onc who printed off stats and with chemo my 10 yr survival was 98% and withuot it was 88% . Ten percent was a lot so I had it. I can’t deny it was awful BUT what you have to think is will it not always worry you if you don’t have it thinking that you should??
I would say go for it and be prepared to lose 6 months of your life but you will gain as much peace of mind as possible.
Love Alise
Also ALison I forgot I was oestrogen positive and HER negative like you.
This is a hard decision and there are no right answers. We each view risk in different ways. A few people do get permanent side efects from chemotherapy…for example long term chronic fatigue syndrome…so this is something else to bear in mind.
A good question to ask your onc is what s/he would recommend for their partner/sister/mother.
You have very good stats whichever way and another key question is how you would feel if you didn’t have chemo and the cancer recurred?
I’ve not been in your situaton as I’ve had a lot of chemo for aggressive bc, but do believe that choosing not to have chemo can sometimes be the right decision…
good luck whatever you decide.
Jane
Jane, what an excellent question to ask the onc, well done.
My stats were wider though I still questioned long and hard whether I wanted to go through the potential difficulty of chemo. Ultimately my kids needed to be sure I had taken everything science could offer me. I was given a choice of which chemo regime, shorter and more aggressive, or a longer course with possibly fewer side-effects. I chose the latter, only started last week, and lucky so far, though it’s early days.
You do have very good stats and I hope you can come to a decision you are happy with, and get plenty of support, though ultimately the decision has to be your own. Very best of luck whatever you choose. Lyn xx
Hi
I was not offered chemo but very similar to yours Alison. 19mm invasive grade 2 lobular Er+ no node involvement. Stats after surgery and rads 88% 10 years, Tamoxifen added another 2% and chemo 3% on top of that. Well that latter was never offered or discussed. I think had I been given the option I may well have taken it. I can only hope it doesn’t come back. Not that helpful to you really and there are risks having chemo… good luck Alice
Hi
Again similar. Mine is (was) 1.7cm invasive lobular grade 1 ER+ with one node affected. I elected to have a mastectomy. My oncologist said my treatment was the surgery and then 5 years Tamoxifen and chemo would add another 2-3 % on after that. Im 44 with 2 children. He even said he thought it would be over treating me. But Ive decided to have it. Its a very personal choice. If I didnt have the one node involved I probably wouldnt have bothered.
Lyn x
I would have pushed had I had node involvement
Yes youre right. I wanted radiotherapy as well. But he said no. But I have been asked to be part of trial where I might be offered radiotherapy called supremo trial. So I may yet get it. Depends on whether computer says NO! or yes. Find out in June. I’ll have anything at the moment the way my mind has been.
Lyn x
Hi
my oncologist recommended anyone with more than a 3% gain in terms of 10 yr survival (could be more but they only track up to 10)
to have chemotherapy. I had 1 node involved grade 2 so I had it but if I was in your position with no node involvement I dont think it would have been discussed and I would have tried to avoid it at all costs. Its a personal choice. A friend of my sisters chose to have chemo and not rads. Having been through I however I can say it wast as bad as I had feared but I still wouldnt go through it if not recommended.
Cally x
Hi Alison
I can see that you have received valuable advice and comments from your fellow forum users, you may also find it useful to call our confidential helpline for a chat with one of our specialist nurses to help clarify your thoughts and concerns about this difficult decision regarding your treatment options. The number is 0808 800 6000 and the line is open Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
It’s very difficult for you, I am similar with grade 2, ductal, ER+ and PR+ but HER-, 2.5 cm but one node involvement. My case is a bit unusual in that during the SNB the tracer went to an area called the mammary lymph nodes, and further surgery showed that there was cancer in one node there too. Apparently it’s very unusual for cancer to go there, but my lump was high in my breast. It’s below the collar bone area. What scared me was had I had all the armpit nodes out without the sampling done in a SNB the other node would not have been discovered, and I may have turned down chemo. I’m having chemo at the moment and they said 10% increase to me. I don’t know what I would have done given your 2.4% better chances, it’s very difficult to know. The thought of chemo petrified me, but I’m halfway now and doing well on third cycle. I suppose it’s peace of mind. I’ll prob have rads too to that mammary area. Good luck, go with your gut instinct.
Liz x
I was in a similar situation but my choice was whether I should have radiotherapy or not. The oncologist gave me all the facts and told me I needed to chose. I did ask him if I was his mother (he was very young, bless him) what would he recommend, but he wouldn’t give away a thing. I think because he was a registrar possibly less confident that an experienced consultant who would put his neck on the block. I was in a real dilemma because I didn’t know what to do. However, I looked at hundreds of research papers, some good, some not so good and eventually looked on the NHS library site where they have systematic reviews where some boffin has gathered together all the exising information and arrived at an informed conclusion. I found the answer I was looking for and went ahead with the radiotherapy. It is difficult when you are borderline. I have put the link to the NHS library for you.
library.nhs.uk/Default.aspx
Hi Alison
Chemo was offered to me as I was told I was relatively young (43) and it gave me an extra 5%. I am strongly hormone psitive, Her-. I chose the chemo, it was hard but I have no regrets, especially as I had horrible side effects with the hormone treatment, and have decided not to continue with it.
Bests wishes with your decision.
Love Deborah x
Hi everyone,
First of all thank you to you all for taking the time to share your thoughts and experiences with me, it really helps to have the support of people in simlar positions. I’m still trying to get my head around it all and doing as much research as possible and have also arranged for the breast cancer nurse to see me tomorrow. I will let you know what I decide but just wanted to say thanks for all your help.
Dawn, good luck for your results tomorrow.
Love Alison xxx
Hi Alison
Just come across this post. I was in a similar position to you I was DX in Dec had WLE tumour removed clear margins, SNB and 10 lymph glands removed one was positive and that was not what I wanted to hear or expected as originally the lump was small I think microscopic was how it was described and I was only having RADS. They offered me CHEMO I cried for what seemed like ever. I saw the ONC and she was brill I had loads of time with her I took a friend and we asked loads of questions and was given all stats etc mine was 6% with chemo. I then went away for a week and thought about it more tears and I wrote loads more questions which I then took to ONC who went throught each one, after that I did decide to have it and have had 3 so far. No one can really decide except for you and I did not ask any one what they thought only my friend said there is really no decision you have to take any chance of incresing your survival rates and in my case 6% was 6%. I thought well they don’t offer these things lightly and it costs a lot of money, they don’t really want you to suffer. I then thought ok where are those bits of that tumour now? How would Ifeel if it came back and I had not had the CHEMO it could be an IF ONLY…
I was worried about the hair loss who isn’t but I thought well the hair will grow back but if it infects my liver or else where you only have one of those don’t you?
Don’t know if this helps it is a hard decision to make but good luck with what ever YOU decide.
Love Sarah x
Hi Alison,
I had my surgery in November . no lymph or vascular invasion . Grade 3 though and a 35mm tumor. I was put on Arimidex. When the onc studied my stats the outcome said 2% advantage with a mild chemo and 4% with a more agressive one.
All concerned decided it wasn’t worth doing… HOWEVER!
I read about a test called ONCOTYPE DX I decided to go for it and those stats ( pertaining to me) indicated that I was in a High Risk for a return but if I had chemo my advantage was increased by 20%.
So here I am.!
I must stress that I was so against Chemo Its only through reading all the brave and wonderful comments on here that I have plucked up the courage to proceed.
I thank you all most sincerely
Coleen xxx
Hi everyone
I went back to the hospital yesterday after making the difficult decison to go ahead with the chemo to give my self the best chance of survival and peace of mind. However, when I went last week and was given this decision to make it was by the registrar not the consultant, so I asked my bcn if I could see the consultant before giving my final decision to see what his opinion was (the registrar just gave me the facts and wouldn’t give opinion or guidance either way)
I saw the consultant yesterday and he felt that for such small % gain he didn’t feel these were high enough to go through chemo taking into account the side effects and risks involved. He would usually only recommend it over 4% (mine was 2.4%) although if I really wanted to go ahead, I could. He spent a long time going through all the options, side effects etc and answered my many, many questions one of which was what would he recommend for his wife (Thanks Jane for that excellent question). He said that he felt it would be overtreating to give chemo and would recommend just the rads and tamoxefen. (What I didn’t ask what if he liked his wife ha ha)!!
It appears that like Cathy the registrar was less confident than the consultant and she was being over cautious. I am comfortable with the decision I made to have the rads and tam and not the chemo.
I just wanted to say thank you all for your comments and advice, it really helped me at a time when I needed it. This web site and the support offered in the forums is fantastic.
Thank you all so much
Love Alison