Do I or do I not have Chemo

I have recently been diagonosed with breast cancer. Have had it removed and had 7 lymph nodes taken out. Margin round cancer was free but they found a trace in one of the lumph nodes. My oncol has offered me chemo but has said this would only be a 3 percent advantage. I now have to make the decision by next Tuesday as to whether I put myself through chemo for this small advantage. My question is do I go ahead or just have radiotherapy and Hormone tablets? Has anyone else been through this dieliema?

Hi Edith22,

I’m sorry you’ve found yourself here. i know from previous posts on here other women have faced the same dilema so i’m confident they’ll come on and give you their opinions (sometimes its a bit quiet at weekends ) I think the thing to remember is that people can only tell you “their opinion or their views” - its one of these crappy times when ultimately “its up to you” People who have had chemo will generally tell you “its doable” and may ask you to think about how you’d feel if it came back and you hadn’t taken the chemo" - not that chemo’s a guarantee. Lots of women will say “i wanted to throw everything at it” Ultimately the decision is your - you didn’t say if your oncologist had a strong view one way or the other? sometimes that makes a difference. You could always discuss it further with him / her explaining how difficult you are finding it to make the decision.

For me - i didn’t really feel i was given the choice. The % benefit quoted for me was 4%. Had you asked me beforehand,i’d have been dead keen to avoid chemo but i got swept along in the momentum from the oncologist who took it as a “given” I also wonder if the fact that he suggested i have 4 cycles, not 6 or 8 made a difference.

Not sure i’m helping but i do wish you well in your decision making. Keep talking.

Lynn
x.

Hi edith22, sorry you had to join us here, it’s a tricky decision to make, like Lynn said, everyone will have an opinion but ultimately, you have to be confident you made the right choice for your future. Personally, I did not want chemo, the short&long term side effects did worry me a lot, however, my percentage gain was higher than yours and after much discussion with my husband, I went ahead partly because I wanted to do all I could at the time to reduce my risk of future recurrence and partly because I did not want to go against medical advice given by the onc and surgeon. I hope you can work it out, maybe you could access your BCN to discuss it further. Good luck. Tina

Hi Edith22

I was faced with a similar decision in March. My onc gave me a week to think about it and % benefit for me was 2.5. I decided to have chemo, my thoughts were that I would do everything they offered me. I know personally I would have driven myself crazy thinking “what if” if I hadn’t decided to have chemo. I finished chemo in July and am now almost at the end of radiotherapy, just one session to go. Chemo and the side effects are not easy but you’ll come through it and there will be lots of people on here to give you support along the way.

By the way I did ask my Onc what she would have done if I couldn’t come to a decision, and she said she would have tried to persuade me to have it.

Good luck with whatever you decide.

Beverley xx

Hi Edith22

I wasn’t given the choice, I was told I would be having it. However, I would do it again if I had to. I truly beieve you need to chuck everything at it. Mine was grade 3 and in one lymph node.

Julia xx

I think its that ‘trace’ in one lymph node’ that would decide me to go for chemo in your position.No,chemo isnt pleasant,sometimes its bl***y horrible but it does pass and afterwards you know you have done all you can to prevent further spread or recurrence.However,as everyone has said it’s your decision and ultimately your life.I’d want that extra 3% chance if it were me.
Good Luck
Valxx

Hi there
I was in the same position 9 months ago.
I was advised to have chemo following the discovery of a 4cm lump and one lymph node infected. For me the benefit was 12%.
At the time, i did not want chemo and was eventually talked into it by family and friends.
Chemo is not pleasant, but do-able and does not last forever.

Ultimatly it is your choice and if the benefits outweigh the risks, then it is probablY a good idea to go for it.

All the best .
NASREEN X

HI Edith

Not here to offer advice, just give you my case-study! I was given less than 1% benefit from chemotherapy. I didn’t take it. There was no sign of it in the lymph nodes and tumour was only 7mm.

That was nearly 6 years ago and I am now having chemotherapy for a recurrence in my lymph nodes. This time I’ve been given a 10-15% benefit, depending on how many cycles and which drugs I have - taxanes seem to give a better advantage.

Having been both sides of the chemo-fence, if someone offered me 4% benefit and I wasn’t trying to preserve my fertility, I’d take it. The drugs are brutal, but statistics can be misleading. Saying that, I think it’s perfectly valid to say no thanks, especially if you’re planning to take treatments which reduce risks in other ways.

Good luck, it’s a difficult choice. xxxx Jane

My percentage benefit was 3%. I decided not to have chemo; and my onc said this was the right decision. Had I said that I wanted chemo anyway, she would have tried to dissaude me.

For the record, I was DCIS 11 mm Grade 1 with 1/15 nodes affected. I had 15 rads.

As others have said, only you can decide. For me, I know it was right not to have it. I was freaking out at the very thought so “3% you don’t need it” was like a gift from the gods!!!

Hello Edith22

My case is similar to yours too. I’m halfway through chemo and dreading Tuesday, the 4th treatment, but glad I’m doing it - feel as if I have some control and that it is “belt and braces” . Feel back to normal for the 3rd week of each cycle and pretty good on the second , so its only 6 weeks of not feeling 100% interspersed with good weeks. - if that gives me years free of recurrence of cancer - time well spent i think. Its easier for me than lots of ladies on here, as retired and no responsibilities at the moment. but whatever it takes, I reckon its worth doing - but all we can do is say how it is for us , and everyone is different. we all have different priorities - each at a different stage of life etc but if its improving the chances of cancer not coming back … needs serious consideration I think. Good luck . By the way I had similar decision about full clearance of lymph nodes, one expert said go for it , another said it wasnt needed in my case. I chose not to have the second op and not have it done. Its a nagging doubt now that i made the right decision but have to put the lid on it , to make life worth living. Best Wishes Kirsty

Hi Edith

As well as the support you are receiving from the other forum users you may find it helpful to talk things through with one of our trained members of staff on the BCC helpline. Here you can ask any questions you may have and share your concerns with somone who will offer you a listening ear as well as support and information. The number to call is 0808 800 6000 and the lines are open again on Tuesday at 9am.

I hope this helps.

Best wishes Sam, BCC Facilitator

hello edith22 better to be safe than sorry dont say no because you fear chemo everyone does its not pleasant but you can do it if you decide to go ahead take care xx

Hi Edith

I was diagnosed with breast cancer last year and was given two options by the onc. I could have a mascetomy or have a course of chemo. I opted to have the chemo. I found the first part of the chemo was ok (sorry forgotten name) where i was given intravenously 2 types of drugs, however once i started on the weekly chemo, which is also given intravenously, i ended up in hospital with chest & lung infection. The problem was resolved with them changing the drugs.

I still think i made the right choice in having the chemo even though i still have to have the mascetomy.

Hope this has helped and whatever you decide all the best.

lol1968 x

Hi Edith

I seriously considered not having chemo. mainly for the long term side-effects. My situation was that I was young and had pretty aggressive cancer, so was told that I just had to have it. Turns out that my cancer was immune to FEC and a lump grew during chemo. So I had three chemo cycles that wracked my body with nausea and damaged my liver all for nothing. I then went onto TAX and that was effective. The point is, 3% is not a huge amount and chemo is not a guarantee of a cure. The fear and guilt of ‘what if’, is not a good reason to put reason and risk aside.

While chemo is ‘do-able’ it is still horrendous. I think if I had had the option not doing chemo I would have taken that up and put my energies into diet and health.

You don’t put your age, which is a big factor in the decision.

Good luck

Hi Edith
I was in a similar situation - my Onc was clear that the benefits of chemo were marginal (92% - 94% 10year survival stats) and thus they could not say I had to have it.
The BCN gave some valid advice - if I was going to worry myself sick not having it then I should take it!
My gut reaction was not to have the chemo but I took a few days to do some research and canvas my friends. At the end of the day I decided the downsides of chemo outweighted the benefit offered but, as in all medical decisions, it’s a calculated gamble and there are no guarantees.
All I can recommend is that you gather the facts and then make an informed decision on what is best for you. Good luck whatever you decide.

S
(Grade 3, 17mm, ER+ve, HER2-ve, no nodes)

Hi there i was also in this situation and given the choice to have chemo or not and although i didn’t want to go down the chemo road and have all the physical and emotional side effects that go with it i wanted to throw all that i could do at it to get rid of it and although there are no guarantees of it never returning if i had not taken the chemo and it returned i would have been engulfed with " what ifs". I wanted to make sure i got rid of every little last blighter although i had no nodes affected ,it was my "extra insurance policy " as my BC nurse put it and she said its 18 weeks of treatment out the rest of your life ,and although the benefits of having chemo were 3% it was a benefit worth having ., and now here iam at the end of treatment ( which has gone extremely quicker than 1st thought) and looking forward to " the rest of my life . it is an awful decision to make but i hope this helps and i have been fine on chemo ( FEC x 6) it is doable . PS i was absolutely petrified by even the word chemo and the night before i cried to my hubby and panicked and said i wasnt going to do it as i didnt have too, but now im through it im glad i did.It was only the fear of the chemo and loosing my hair that was persuading me not to have it deep down i knew i should. take care Julie xx ( age 48yrs 2.6mm stage 2 grade 3 ER +ve PR -ve Her2 -ve and 0 nodes affected)

Best not to get hung up on percentages in my opinion! Adjuvant online ( the calculator the oncologists use) is not very accurate, it rounds UP the figures to the nearest centimetre/3 lymph nodes ie a person with a 1.1cm tumour is given the same prognosis as a person with 2cm, rather than 1cm, which is not very clever. But if you make the calculations yourself by playing with the thing, you can work out your real percentage.

But at the end of the day no one knows what side of that prognosis / percentage you are on, chemo is no guarantee of anything, just works for some, not others. I’d say get all the info you can from your onc., but then go with your gut instinct on what is right for YOUR body, don’t let others decisions affect you as we are all so different, don’t let the Onc. rush you either I doubt a couple of weeks extra thinking time would make a difference. Most important thing is that you are confident about your final decision. Good luck! X

Thank you all very much for your comments regarding my dilema as to whether I should go ahead and have Chemo or not. I know at the end of the day it has to be my decision but it has been helpful hearing your thoughts and experiences. I am still undecided but my instinct is now turning towards going down the Chemo route as now I am in this battle I should give it all I can in order to win it.

Take care everyone and I will keep you informed of my decision.

Edith22

Hi,
for what it is worth I am in a centre of excellence and everyone under 50 has chemo. Also anyone where it has already escaped from the breast and I am afraid in the lymph nodes means it has already been on the move has a tougher regime still. There are always exceptions though as some tumours are 100% hormone receptive, then it depends the type and size of cancer, your age, current health, etc so difficult and possibly not helpful to compare too much. They would not give you the decision lightly. Have you asked what would you do, to the onc? Personally I am a ‘do everything’ person, looking in my childrens’ faces decided that one. I had chemo, with no nodes affected and I am really glad I made that decision so I would be encouraging you to have it and see how you go. Any doses will be helpful even if you don’t have the full quota.
Big hugs and so sorry you have this rotten disease and difficult decision.
Lily x

Hi Edith,

Sorry I didn’t have time to read the whole thread and someone else may have said this … but if you were to decide not to have chemotherapy and had a recurrence or was found to have secondaries at some point, how would you feel about it? I think that I would be really mad at myself for not doing everything possible the first time around. But I know we are all different and you may well feel that a 3% difference is not worth the 4-6 months of chemo. For me it was a 5% difference and I opted for the chemo.
Bear in mind that chemo isn’t always as bad as we fear.

Good luck,

Jacqui