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Have decided against chemo- did you too?!

26 REPLIES 26
tors
Member

Re: Have decided against chemo- did you too?!

Hi I was dx with grade 3 idc in march 2010 , 17mm, no evidence of node involvement or lvi. From the second they said I had breast cancer I told them to throw everything at me as even a 1% benefit was worth it to me as my sons were aged just 2and 4. I had a lumpectomy, chemo and rads. They will have insisted you have radiotherapy if you had a lumpectomy as a lumpectomy only offers the same survival protection as a mastectomy if radiotherapy is also given, ie. Lumpectomy plus radiotherapy = a mastectomy in terms of survival.

My chemo offered a 5% benefit which they explained meant that out of 100 women with my diagnosis, an extra 5 would be alive after 10 years purely because they had had chemo. I put that in the context of my own diagnosis and prognosis which was 85% survival rate if I only had the surgery, so actually the 5% chemo benefit actually meant that a third of the women with my diagnosis would survive just because of the chemo ( ie. 15 would die if they only had surgery, only ten would die if they'd had chemo too). My tumour was only weakly ER+ so tamoxifen would be some benefit but not as beneficial as for someone more strongly ER +.

It terrified me that 15 women my age, with a grade 3 cancer and no evidence of nodal involvement would still get secondary cancer within the initial ten year period and die. The survival figures don't tell you how many are left at year ten who already are battling secondary cancer either, so to me that reduces my odds to as the results only tell you how many have already died.

Chemo was hard but I am very pleased I did it. It also isn't a one decision and you are stuck with it option. You can chose to have it and see how you get on. You can chose to stop it at any point. There's been talk that the first three cycles are most important. Many people don't do too badly on chemo. I did a positive stories even when on chemo thread which people posted on and I will try to find it somewhere.

That said, I have lost my fertility through chemo and would have reassessed the cost benefit in this context if I wasn't already fortunate enough to have two lovely boys. If my cancer had been more hormone driven so I could have depended more on tamoxifen it would have affected my reasoning. If I wasn't 36 it might have been a different story. Plus, the oncologist knew what my attitude would be even before the pathology results from the op were back and I know that patients views and attitudes are discussed at MDT meetings so he'd have known my attitude and would probably have been a little scared of the arrange he'd have hit had he suggested "no chemo"!

I know you had asked for info about people who had refused chemo, and that I didnt, but I just wanted to add my experience and reasoning to the discussion. I couldn't have coped NOT having chemo as I'd have been too scared it would all come crashing round me and it would be my fault, so I agree that personality plays a massive part in the decision, and you can only chose what's right for yourself.

I wish you all the very best, there are no easy answers with cancer, it all just bl**dy sucks.

Vickie
X

gaybar1969
Member

Re: Have decided against chemo- did you too?!

hi i was dx 2 years ago age 40, stage and grade 1. i turned dowm cemo 3% benefit. i had rads, and on tamoxifen and zoladex. i too know ladies what had everything and it came back and also led healthy lives. if your going to get cancer or it returns i just think thats the life you have been delt with. all the best with what ever comes your way. gaynor

oldandlumpy
Member

Re: Have decided against chemo- did you too?!

hi,

i am only grade 2 IDC, high grade DCIS and high grade LCIS along with an intracystic papillary carcenoma and they found a radial scar. (the whole thing was 3.75cm) I go along for my post treatment sign off today and so obvously the thought of recurrence has popped up into my mind.

There seemed to be so many different types of cancer there, and the invasive tumors were not visible on the ultrasound, so it does cross my mind that there could be other invasive tumors in my breasts that we dont know about yet.

But after reading this thread I am re-assured, If those of you with grade three tumors were choosing to just have lumpectomy radiation and hormones then that same treatment must be more than enough for my grade 2. Thankyou..

As to what the doctor advises. I think it is how much they feel they have to stick to the current guidelines and how much they are comfortable with offering personal opinions. I once had a difficult decision on treatment for my son. I asked the doctor what she would do if it were her son. she said " As a doctor i have to advise you to give the injections, but if it were my son I would not give them". He did not have the injections and is now a strapping 30 year old with no problems.

lolly73
Member

Re: Have decided against chemo- did you too?!

Shonny, sorry to hear that its returned, but if it came back after zoladex and tamoxfen, you can bet it would still have come back even if ud had chemo. all the best x

Shonny
Member

Re: Have decided against chemo- did you too?!

2.5 years ago was diagnosed with grade 2, stage one, 100% Er and Pr, 1cm, Her2 neg, Isolated tumour cells in one SN (had aux clearance which were clear. I had just turned 35. I was offered chemo,but it wasn't insisted on. Tx wise I had Zoladex, tamox, Radio over 5 weeks incl base boosts to tumour site.
I knew from my stats and highly hormonal status, plus being a single mum working throughout, that I would decline chemo with those stats.

July this year - the cancer recurred. Locally.
Do I regret my first decision? Not for a moment.
I changed surgeons who advised that the recurrence was due to surgical failure.
I've had both breast removed (DIEP - 7 weeks ago), and am waiting on OnchotypeDX results before deciding if I have chemo this time. Based on my current stats, node neg, grade 2, 6mm, er & pr 100% pos, her2 neg - I will choose not to have it again.
But I will investigate ovary shut down and switching to an AI

It's a hard decision and I am sure family muttered behind my back that it came back because I didn't have chemo. They wouldn't dare tell me to my face. LOL. But it is us that have to live with our decisions and I am at peace with mine and I won't let anyone guilt me otherwise x

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Re: Have decided against chemo- did you too?!

Hi I just want to say I had everything given to me but mine returned a yr later I know plp who have had it returned when on chemo so I think it's just a case of if it's gona come back it will no mater what u do

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Re: Have decided against chemo- did you too?!

A fertility registrar said pretty much the same thing to me with regard to sometimes chemotherapy being offered for peace of mind as much as anything else.

I think that answer last night didn't really answer your question - I'll try to do better tonight. It may be my personality - I'm so not a risk taker in general - so I came to terms with it slowly. In reality, I worried a lot for the first year but with every year it did become easier (and probably the only reason why I'm haunting the forum is that I've just had the 4th anniversary session with my oncologist)- every year that passes without recurrence is good. I also know that there are lots of different breast cancers - the only unifying factors is where they occur.

I also did lots of reading about now that there are effective hormonal treatments, doctors are increasingly focusing on tackling over-treatment. It helped that I had huge faith in my medical team (I researched them carefully and got various second opinions) - their job is essentially to beat the odds (which given the nature of survival statistics are 5-10 years out of date) and I felt mine were not about to spoil their percentages by letting me make a stupid decision about my treatment(and feel that is borne out by the fact that my oncologist is VERY unwilling to let me stop Tamoxifen early).

It helped that I also had a close friend who was diagnosed with hormone sensitive early breast cancer shortly afterwards and she didn't have chemo either and is fine. I always knew that if there had been any evidence of involvement with my lymph nodes or it wasn't hormone sensitive, I would have had chemotherapy like a shot.

I suppose ultimately, I've had to learn to be a patient. I feel I made the best decision I could in the circumstances (I'm also freelance and had to consider how it would impact my work) and live with it. It's a fact that you can do everything and cancer will return, but you can also do nothing and be fine. I think that oncologists can have a hunch about you but only by being patient and waiting to see how the treatment pans out will you know if your personal solution was the right one. Does that make any sense? Have just had an alcohol-fueled night out with work colleagues. Life has pretty much returned to normal but I may not be making much sense!

lolly73
Member

Re: Have decided against chemo- did you too?!

JacquiD your post has reminded me of my oncs words. He told me to have the chemo if i am the sort of person who will be worrying all the time if i dont have it. It was more for my own fears than something i needed. He was happy that rads, tamox and zoladex was enough for me.

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Re: Have decided against chemo- did you too?!

As you said Poddle, like you, my oncologist clearly didn't think it was essential treatment otherwise she would have insisted that I have it - like she is with the radiotherapy and tamoxifen. The chemo was definitely seen as more optional - and it did seem to depend on how bad my levels of anxiety/fear were. I have been very shaken by the whole experience of being diagnosed but do want to think as rationally as possible about choosing the best treatment...

I understand people's wish to throw everything at it but I am worried about the cost of chemo - Elltiks, I'm not so much worried about the 1% mortality rate as a consequence of chemo, although that is something to be mindful of. What really concerns me is that it only offers 3.7% which seems like such a low rate of protection to me for 6 months of potentially hideous treatment...which still doesn't offer any guarentees!

Ginge23
Member

Re: Have decided against chemo- did you too?!

Hi
I think we should throw everything at it and give it the big elbow. I might be that 3.75% that it helps. If your hoping to plan for a baby I know the options must be totally grim. I assume your Onc have discussed egg freezing. My girls are IVF - It's a hard one for one so young. There will always be the what if's and only's.
Good luck in your decision -
Wish you all the best
Ginge x

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Re: Have decided against chemo- did you too?!

I remember saying to my oncologist that if I'd been given the choice, it was probably because she felt I almost certainly didn't need it. She smiled and we never talked about chemotherapy again. But all cases are different and preserving my fertility was an issue with me. At the time I made my decision, there was a study that suggested that for early stage ER positive tumours chemotherapy's benefit was that it disrupted oestrogen and actually, zoladex did that more effectively and with fewer side effects - it might be worth asking your oncologist... Four years on I don't regret my decision...

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Re: Have decided against chemo- did you too?!

Just bear in mind, se's don't last forever and there is a lot of help available. It's doable.
Maybe 1% die from chemo, many more from cancer.

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Re: Have decided against chemo- did you too?!

Its really helpful hearing such a wide variety of views and experiences - thanks everyone for your thoughts. It reaffirms my belief that this isn't a black and white decision with 1 right or wrong answer.

In a way it feels to me as if you are damned if you do and damned if you don't - and whatever you choose, there are never any guarentees. Perhaps if the percentage had been higher and the risk of awful SE's lower I might have opted to also go for the chemo, but as it stands, it doesn't seem worth it to me...

CheshireCheese
Member

Re: Have decided against chemo- did you too?!

I decided against chemo since the small percentage benefit didn't outweigh the side effects, in my opinion. However, I think my view was probably also influenced by having seen both my Mum and her mum have BC, have the surgery, take the Tamoxifen, and no further problems. I'm hoping I'm in the same category.
So far I'm happy with my decision not to have chemo, but it's only early days for me, 16 months after Dx. Who knows, I may regret it one day, but I'm back at work doing a useful job and enjoying my home life.

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Re: Have decided against chemo- did you too?!

Well said El Kat.
I did chemo, and it was okay. Tax was a bit rubbish and the se's were hard. I was hospitalised once for three days.
Sadly my tumour didn't curl up and die and threw a few cells out of the pram and had a bit of a spread, but nothing i'm going to worry about now. I'm on tamox now, which I might add i'm having a bit of a rough time with and i'm going for rads planning this week.
If I could do chemo again and increase my chances of living to retirement age, i'd be there like a shot!

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Re: Have decided against chemo- did you too?!

I've asked myself what I'd do if I was given such a small percentage as you have.

My gut reaction would have been that I wouldn't want it, we've all seen what it can do to people and I had never seen anyone who had chemo who didn't look like a ghost.

But guess what? Noone talks about having a fine time on it, it's rare. So we all just see the horror stories, perhaps have seen people towards end of life who are not themselves, my Mum was one of them.

There are actually quite a lot of people with Primary Cancer who don't have horrific experiences. And theres the difference.

I wasn't one of them, I had some very very bad SEs, never hospitalised but I was miserable as sin for the last few.

I'd do it all again though if it means potentially not having it back OR living longer if I do.

I think personally I'd have given it a shot and see what happened, quite a lot of people manage to carry on working (I couldn't have done but I know a lot who do) If it's horredous then stop.

My BCN said not to worry about what COULD happen as it may not,deal with it if it does happen. If you think about it too much then you can work yourself into a state. Which is a fair point.

xxx

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Re: Have decided against chemo- did you too?!

It's true about 1% of chemo patients dying from se's- usually infections. My onc told me+ it was in tge paperwork I signed. But it includes very late stage patients in the stats + they tend to be the ones who have more se's on chemo...
Jacqui best of luck it sounds like you've given all this alot of thought. We are all different + must remember that even with chemo there are no guarantees. I'm sure if there was a sig benefit of chemo, ur onc would have encouraged you to have it.
All the best x

lolly73
Member

Re: Have decided against chemo- did you too?!

I have just been changed to aromasin after 3.5 years tamox, as it has better results than full 5 years tamox for post meno women (ovaries removed 2.5 years ago)

21210
Member

Re: Have decided against chemo- did you too?!

Have to agree about the "room" situation Horace but as you say a personal decision & yes lolly as you say different Onc's different post codes & conflicting advice as seen/heard on a daily basis although am confused about Tamoxifen working on stray cells as i was under the impression that it prevents estrogen from binding to the cancer cells & does not kill cancer cells, but it keeps them from reproducing, are you coming up to the 5th year of the Tamoxifen ? I wish i had been able to continue taking it but had to stop after 3 months because of a blood clot so am new to the Zoladex/Letrazole combo & have heard good & bad so am fingers crossed for the possible se's at the mo as only had injection last week.

Sarah.x

horace
Member

Re: Have decided against chemo- did you too?!

You are the only one who can decide for you.In my case I am triple negative so chemo was my only option post op.However if I was one of 100 women in a room with breast cancer and chemo would give me 3.7 chances of being one of the survivors then I'd not hesitate.
Vx

lolly73
Member

Re: Have decided against chemo- did you too?!

Yes i had 15 rads plus 5 booster rads. I was 100% + for er and pr and so i was told tamox and zoladex together were the best treatment for this as node negative. My bcn told me that tamox works on any stray cells. I dont know about lymphoma, my onc just said that 1% die from chemo induced probs. As ive said before, all postcodes and all oncs have different treatment ideas.

21210
Member

Re: Have decided against chemo- did you too?!

Hi,

I was Grade 3, 9 mm no nodes or VI & chemo offered 3%, I did take the chemo based on the fact that it is the one thing that can kill stray cells.

Lolly am guessing that you are referring to risk of Lymphoma from chemo which is a very slight risk, actually lower than 1% & very rare where as reocurrence presents a higher risk.

At the end of the day, everyone's decision is a personal one with many different contributing factors & as statistically many of us shouldn't have Bc in the 1st place, i personally don't place to much weight on numbers.

Any decision made has to be the right one for you & your families, i also had Rads & am on Zoladex/Letrazole as had to be taken off Tamoxifen, for me chemo was the right decision but i certainly do not assume that it will be the right one for everyone & it was a decision that was left up to me to make & was extremely hard at the time as i felt very alone, one Onc said it was quite possibly "overtreating" the other Onc did the if you were my sister thing i would advise you to do it, so i was totally confused with 2 totally different opinions.

Brilliant on the 4 years lolly & best of luck with the rest of your treatment Jacqui.

Sarah.x

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Re: Have decided against chemo- did you too?!

That's really helpful to hear lolly73. I am a little concerned about having regrets about my decision in the future so its good to hear that you decided against chemo for similar reasons and 4 years down the line, have no regrets. Hoping to get there myself soon...

Just wondering - did you also receive radiotherapy or were the tamoxifen and zoladex considered sufficient?

lolly73
Member

Re: Have decided against chemo- did you too?!

I have no regrets at not taking the chemo option. My onc told me that it would benefit me 3% but that 1% of people die from the actual chemo too. He told me if it were his wife he would advise her not to have the chemo in my situation. I was able to have tamoxifen and zoladex together which for me were just as effective. My dx was almost 4 years ago. Grade 3 IDC 21mm no nodes.

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Re: Have decided against chemo- did you too?!

I'm not sure what your situation was Elttiks in terms of size of tumour and what the benefits of chemo were for you etc. The question for me and my oncologist was is 3.75% valuable treatment or unneccessary treatment and at what cost to me and my family?

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Re: Have decided against chemo- did you too?!

My family swayed my decision.
I'd have never been able to look them in the face knowing that i'd turned down valuable treatment.

Guest user
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Have decided against chemo- did you too?!

Hi everyone,

In between recovering from this awful post op infection I have, I have had a couple of meetings with my surgeon and my oncologist to discuss what treatment comes next, post surgery.

I had a WLE and SNB - which confirmed a 12mm, grade 3 IDC with no node involvement. As it is highly horomone positive I will definitely have hormone therapy and radiotherapy. There has been a question mark over chemo though as the tumour was small, with no sign of spread - but a grade 3.

When I met with the oncologist, we discussed the pros and cons of chemo - and she said that it would offer about an additonal 3.7% protection against mortality. After much discussion we agreed that it wasn't worth such a small benefit for such considerable risks and side effects and I have decided against chemo. She agreed to do a bone scan as one of my 'presenting symptoms' was pain in my ribs and breast bone - even though there is no evidence of vascular involvement - just to put my mind at rest.

I have read lots of women on here saying that any benefit was worth it for them and that they therefore wanted to throw everything they could at the cancer which I understand. I guess for me I really wanted to avoid going through 6 months of such harrowing treatment...especially as a freelancing single mum - with such little added protection.

Its hard to feel entirely happy with my decision - the yes/no to chemo question feels nigh on impossible to make - but I guess that I just have to make the best decision I can now with the information I now have.

How did other people come to terms with the decision to have/not have chemo?

Jacqui