Chemo or Not?

I was diagnosed with bc in sept 07 . Since then I have had a lumpectomy + a mastectomy+ now a nipple removal because some pre can. cells were lurking there.

No cancer in blood stream or lymphs.
I’m 64 I’m on Arimidex . Alls well. surgeon suggests no chemo/radio .

I’m going to oncologist soon. and told they may well suggest chemo / rad.

Any suggestions? Will the benefits outweight the effects??

Anyone with similar dilema?

Hi Coleen

Welcome to the forums, I am sure your fellow forum users will along shortly with support and the information you need. In addition, please feel free to call our confidential helpline on 0808 800 6000 which is open Mon-Fri 9am-5pm and Sat 9am-2pm, the helpliners are able to offer you support, information and a ‘listening ear’ if you have any queries or concerns that you would like to talk through.

The following links will take you to a couple of Breast Cancer Care publications about treatments which you may find helpful to read:

breastcancercare.org.uk/docs/chemotherapy_07_web_0.pdf
breastcancercare.org.uk/docs/radiotherapy_mar_06_0.pdf

Best wishes
Lucy

Hi Coleen

I can’t advise you sorry - I wasn’t given any choice over chemo/radiotherapy - was just told I was having it!

All I can say is that if they suggest further treatment that you ask them why… ie ask them to tell you why they are advising it and what the benefits of the treatment will be, compared to the potential side effect etc, then you will be able to weigh up pros and cons and make a considered choice.

Sorry I couldn’t be more help
Hope you get on ok

Margaret x

Like Margaret, I didn’t feel I had any choice whether to have chemo and rads, particularly as the cancer had spread to the lymph nodes. The Oncologist should talk you through having chemo and/or rads and I would be guided by him/her. As your cancer has not spread outside the breast, it could well be he/her will prescribe rads only. I am coming up to 5 yrs now since dx, and am happy with my decision to have had both chemo and rads. I have had no recurrence.
Good luck.
Liz.

I have been on a roller coaster ride since being diagnosed in Sept 07. 3rd operation was a week ago .Now I have an infection + feel grotty. I’m terrified by the thought of chemo / rads. The lumpectomy mastectomy + reconstruction + then nipple removal I would repeat if I could avoid them. I have been so impressed by the wonderful support you all give to each other through this forum. Like a dripping tap the word ‘do able’ comes through again+again. I’m still scared but find comfort reading your comments. Thanks to all of you. merry Christmas. Coleen

When I had my lumpectomy four years ago (at the age of fifty-one) I was told that I was borderline and that I could choose whether or not to have chemotherapy (although they were recommending that I did). My tumour was just over 2 cm and nothing in the lymph nodes. My first response was “I’ll have anything you’re offering” but I became less certain when they described the possible side effects. In the end I chose to have the chemo because I wanted to feel I had done everything possible to prevent the cancer coming back. I found it very difficult to be left to make the decision myself - it is so much easier if someone else tells you what is good for you! It is also easy to be wise after the event. I had a really bad time on chemo including having some quite dangerous side effects and I am not sure if I would make the same decision again knowing what I know now (although I suspect that I might). But I also know some people have very few side effects and that I was just unlucky. Radiotherapy was easy compared to the chemo, despite the drag of having to go into the hospital every day. My decision was very personal to me and I know other people in the same situation who decided differently. Again I am sorry that this is probably not much help to you and you, as I did, will have to weigh things up and come to your own decision, but it is mainly to say that I know how difficult this will be. Whatever you decide I wish you the best of luck. Gwyn

Coleen
Hi.
My personal opinion is that if you are offered it you may well want to take it, they wont offer it to you if they feel it wont do anything. My cancer was jnode negative and just over 2 cm and just came back after 5 years…it is desperately disappointing, BUT it is a comfort to me to know that I did everything possible to keep it away the first time, and I dont have any regrets about choices made at that time.

best wishes
Cathy

Hi - I wasn’t given any choice either. Here (Australia) they sat down with us and put all of my cancer details into a computer program and then put in the type of treatment I was having and came up with the % chance of secondaries, being alive in 5 years all clear and being alive and well in 10 years all clear. They then showed me the percentages without chemo and rads.

They said that some people don’t want to know the odds but we did and I am glad we found out. There was no decision to be made once we had seen the stats.

I also got a second opinion on everything (think that might be a bit easier to do here) it was very reassuring and certainly helped to ease some of my concerns.

Good Luck…just keep asking questions until you are satisfied you have all the answers. Do you take anyone with you to your appointments?

If you do have end up having Chemo and Rads you will be fine, it is completely crap but entirely doable.

Anne x

Hi Anne - Like you I’m here in Australia. Had WLE three weeks ago and know I’ll be having chemotherapy and radiotherapy. I’m seeing the oncologist next week. Interested to read about the computer readout! I’ve have heard this is what happens, and I definitely want to know just where I stand, and although I know it’s just a statistic I am pleased that I can obtain the information in such a clear and concise way. Wonder if it’s the same system in UK. Good luck for the future - best wishes Sarah x

I’m like Cathy (KatharineM) above - I did have chemo and rads despite being quite marginal for “needing” them, but the cancer came back 6 1/2 years later anyhow. BUT maybe it would have come back sooner without, and I did have a great 6 1/2 years…

The other thing is, it’s not an either/or decision. You could start either chemo or rads and give up partway through if you really hate the side-effects, and it seems likely to me (though you could check with your onc) that an incomplete course of either would be better than none. (I worked right through mine, leaving work every day at 3.30 to get the last rad appt of the day, and taking, IIRC, 2 days off for each chemo. Mind you, I was only 33 at the time.)

Hi Coleen

You need more information before you can take a decision. All cancers are different and in some cases chemotherapy makes not much difference to survival chances (e.g. There are two types of er+ and pr+ her2- cancers: luminal A and luminal B…in one sort tamoxfen and aramatose inhbitors like arimidex are effective and in the other sort they are not…and chemo is more effective.)

Ask your medical team for the statistics as they apply to you. Then weigh up what they mean to you. A tiny percentage might mean a lot to you or not…and it might depend on how high your survival chances are anyway. A key question to ask any oncologist is what they would advise their own mother, partner, sister or wife.

By the way most people find radiotherapy more tolerable in terms of side effects than chemotherapy. I don’t like chemotherapy one little bit (and I’ve done a lot) but for me its been not as bad as I imagined and a term often used is that its ‘doable’.

Good luck whatever you decide.

Jane

Hi Jane,

Some advice please about luminal A and B cancers. What are they and how do you know which type you’ve got? I was told that my previous tumour was er+ and HER2++ but noone mentioned the word luminal. The reason I’m asking is that I am awaiting test results for a possible recurrence and as I’ve been on Femara for 5 years will probably change medication so want to inform myself as much as possible about the choices.

Wendy x

Hello Coleen

I agree with the other comments - especially that you must get as much information as possible to help you make the decision. I always write down questions before an appointment so that I don’t forget what I want to ask.

My oncologist is excellent and went through all the statistics with me. In my case I had 2 positive nodes so chemo was recommended. However I was told that because I am over 60 it would give me only 3% or 4% more chance. I decided to have the chemo because I wanted to feel that I had done everything possible to prevent a recurrence. Chemo isn’t nice but is most definitely ‘doable’.
Good luck with your decision and let us know what happens.
Anthi x

Many thanks to everyone for all the sound advice. I will indeed let you know the outcome of my onc visit. In the meantime I have been reading an article n ONCOTYPE DX TEST. Anyone familiar with this ? Is it available here in the UK?. Once again Thanks to all , Merry Christmas

I believe it is for ER+ tumours and as far as I know, unavailable in the UK.