Considering refusing chemo

[springydaffs]

Triple-X BC. Lymph nodes clear; clear (huge) margin. Post-surgery i am 95% sorted according to my oncologist. Chemo/radio (only available treatment for triple-neg BC) to generally mop up what may be lurking elsewhere. Or may not.

Mangled breast following lumpectomy. The NHS approach feels to me to be a brutal approach. Is an extremely toxic treatment regime really necessary to increase my survival by a very small percentage? [78.5% survival after 5 years without chemo; 85.2% with chemo). It feels all wrong to me.

[YeOldTrout]

It's really a 10% increase on your chances of 5 yr survival, most people wouldn't find that a very small increase. I think any choice is valid, only you can decide how to balance quality with length of life. Good luck.

[paxtecum]

I agree with you.
Can you work at ways of strengthening your immune system?
Avoid having household chemicals.
Do you have a budget to be able to eat organic foods?

There was a recent report about the safe levels of chemicals may be very wrong, as the chemicals have been tested one at a time, but when tested in combinations the safe levels are much lower.
We are bombarded with cocktails of chemicals every day, from anti bacterial hand wash to pesticides in our food.

Good luck whatever you choose.

[malteserzz]

I had chemo and whilst it was horrid it was doable and I feel like at least I've done everything possible to give me a good chance of life. Totally your decision though

[springydaffs]

10%? Not according to the data given to me (reluctantly!) by my oncologist = 6.7%. Very similar percentage to survival with eg exercise, diet etc. Different stats wherever you look

This has certainly been a wake-up call for me -as it is for everyone I imagine. I know precisely why I probably got this - and I'm on it. It makes perfect sense. That may sound arrogant, I appreciate ppl just do get cancer for no particular reason. Just that there were a few things in my life that were seriously out of kilter.

[springydaffs]

In not concerned so much about having the actual treatment [i lie: of course I'm concerned], it just makes no sense to me to have my body repeatedly poisoned to within an inch of my life (and, crucially, the long term consequences of that) to knock out something that may not even be there 'just in case'. Risking organ failure and any number of complications. Knocking out my immune system - which is what caused all this in the first place.

[Allalonenow]

No advice, but just wishing you all the very best springy

[YeOldTrout]

May I ask (curiosity) what caused your cancer?

6.7 is 8.5% of 78.5 (I rounded to get 10%), so that's almost 10% improvement over where you could be without the treatment.

would be nice if there were better options than half killing all of you, problem is that half-killing is the most effective treatment so the best one the NHS can justify funding. One day we can hope to have better medicine. Sorry you have to make such tough decisions.

[MrsNuckyThompson]

I'm sorry that you're in this position. Congratulations on having had what sounds like a really positive prognosis!

But I have to say that without hesitation I would do it to increase my chances even a little bit, especially now that I am a mother. Although it can be brutal at the time, are there likely to be lasting effects for you of chemo over no chemo?

However, you are of course NBU because this is your choice, your body, your life.

[Lilymaid]

Come and chat to us on the Tamoxigang thread! Lots of us there undergoing various treatments, most of us having had chemo.
Sensible advice - not Woo!

[tkband3]

My friend had a mastectomy 5 years ago (I think) and has subsequently refused all conventional medical treatment. She did an enormous amount of research into chemo and its impact on the human body, the likelihood of it 'curing' her cancer and the probability of the cancer recurring or resurfacing in another part of her body.

She completely changed her lifestyle and diet and underwent some alternative cancer treatments - obviously none of these were on the NHS so the cost is quite high.

Here's a link to her blog which is worth a read if you're seriously considering this. She recommends other reading and I'm sure would be happy to 'chat' to you through her blog if you'd like more information.

She is an incredibly inspirational person and I admire her immensely.

[Oxfordblue]

My MIl was told having chemo would offer a better chance, very similar odds.

She didn't take chemo & at the 2 year check they found secondaries. She then had 2-3 rounds of chemo & radiotherapy. She died a year after this diagnosis.

I feel she would still be here, had she accepted the chemo.

[springydaffs]

Oxford, did your mil change her lifestyle?

I don't intend to do NOTHING. Either I have chemo etc or I address life changes eg exercise, diet etc. I won't be crossing my fingers and hoping for the best. I'm not burying my head in the sand here.

Thank you for that tk.

[blendedfamilygrinch]

Another one curious as to why you think you developed it?

I have 50% likelihood of having brca2 mutation which means 80% chance of developing bc. Am considering preventative double masectomy as see that as preferred option to ticking timebomb of masectomy + chemo.

It all sounds drastic but I have young dc & want to be around for them so am in the bring it on camp. 6.7% could be the difference for you - it doesn't prevent whatever lifestyle choices you think may help too does it? You may be able to tolerate it fairly well.

Chemo's shit but it's what we've got....

[springydaffs]

Erm lily, I'm considering NOT having treatment - why would I want to be on a thread where ppl are discussing their treatment?

[springydaffs]

What 'caused'it was an agonising and longterm situation with my (adult) kids. Imo! I just wasnt at all surprised that it made me ill like this. The pain was literally killing me it turns out.. and that was NO surprise to me.

Ás a consequence of this huge wake-up call, I am changing the way I approach the agonising situation. I have already made fundamental changes to my approach; mentally, emotionally, practically. Now I know what's at stake I am shifting around the furniture of my life - they are adults is the bottom line. I didn't think I could ever let the pain go but if it's killing me then I will let it go.

I know a lot about nutrition and generally have a very good diet ...apart from the industrial quantities of self-medicating chocolate.. Not drugs or drink but chocolate. I knew this was way out of kilter, a real problem - and I knew why. No 12-step groups for choc/sugar addiction, sadly (though there is always OA). I am seeing a nutritionist/naturopath next week to address my digestive system (eg candida?) but have already made conclusive changes. As you do when faced with something like this.

Exercise had also significantly dropped off. I was marinading in the pain and I was going down - fast. I just wasnt surprised when I got the dx. Shocked, out of my pants. But not at all surprised. I do think it was a combination of all these things that made me ill.

Not that my kids will ever know I think that. And not that ppl don't just get cancer for no discernible reason. Ppl talk about chemicals - someone did upthread I think - but I know where the poison was in my life.

[malteserzz]

It's normal to be shocked when you are fit and healthy then receive a cancer diagnosis but the situation with your children won't have caused it. Lily suggested the tamoxifen thread as its for anyone with cancer, not everyone has had chemo. As for nutrition I've just been told to try and eat a healthy diet but not to stop eating anything
Have you tried ringing Macmillan to talk things over ?

[YeOldTrout]

Diet & activity levels are linked to development of cancers. No idea if that's why it happened to OP, there are so many causes. Very hard to ever know with individuals. Even Stone age people got tumours.

The thing is if you improve your diet/exercise AND have the chemo, then you will maximise all odds in your favour. It sucks, terrible decisions to have to take. I totally understand why you don't want the chemo. My until-that-moment very hale friend died in spite of all the alternative treatments she could get, so I see it alternative medicine as an expensive line of false hope although she had a good case for saying that at least it gave her an extra 6 months. I don't know what I would do, either. Best x.

[Lilymaid]

Erm lily, I'm considering NOT having treatment ...
Because there are a lot of us on the thread with experience of such decisions.

[JugglingFromHereToThere]

I can see it's a very difficult, finely balanced decision to have to make.
But the brutal facts are that you are 6.7% more likely to be here in 5 years time if you go through the chemo than if you don't.
Fortunately it's looking fairly good for you either way.

Looks to me like you are very understandably looking for some control in the situation .. looking for reasons why it happened to you ... thinking that with improved diet and exercise it won't come back. I guess these things can also improve your chances by a few percentage points.

I would just advise taking a purely scientific look at the facts and statistics.
Maybe try the alternative viewpoint that it is something that hit you randomly and it will randomly either come back or not come back but according to the odds you've been given.

Is it worth going through this challenging treatment for a 6.7% increased chance of survival? Only you can make that call.
I think on balance I would though.

Thinking of you springydaffs All the best x

[smee]

springy, Lily's right - lots of the women on the Tamoxifen thread have had v.similar thoughts to you. I'm so sorry to hear you've been hit. Cancer's beyond grim and it's totally up to you of course, but I thought I'd post as the more people who give you opinions the more you can mull it over.

So I had BC treatment 5 years ago. I wasn't triple negative, but it was in my lymph nodes; I had mastectomy, chemo, rads, but first like you I read a lot and thought a lot. In the end a couple of things made me accept chemo. First was trying to think how I'd feel if I didn't have it and it then came back. Would I be kicking myself? And looking at my then 5 year old, the answer was yes. Second was a neighbour who's a chemo nurse. Her advice was to 'chuck everything at it', as too many times she's seen women who've refused or who've had a good prognosis return with secondaries.

Since being diagnosed I'm met lots of women who've been through all of this. There are so many stories I could tell - lots positive, but of course lots not. One friend wasn't offered chemo as her prognosis was good so she was told she didn't need it - she had a lumpectomy and rads, but it came back in her lungs and she's Stage 4 now. Sadly I have lost count of the number of women who I've met who are no longer here, but equally there are a lot of us who've been through it all who are very much still here.

The thing is you you might know the cause of your cancer or you might not. I have always been fit, good diet, not overweight, not especially stressed and I still got it. I looked at my diet, read all the books, scoured the internet forensically, but in the end I decided all I could do was to trust my team and keep living as I had. So far (touch wood) it's worked and I'm still clear.

You call the NHS treatment 'brutal' and yes it is. It's the same across the world, and the same if you go private too. They cut bits off, poison you, burn you.. it's primal and brutal because it has to be. It's great that you've had such clear margins, and you're right there might be absolutely no need or point in chemo as your cancer has already been taken. But what if there's one cell lurking somewhere round your body? It only takes one and that's the thing that the chemo might stop.

I hope I haven't said anything annoying - I do remember (will never forget!) how overwhelming and scary it all is. Ask anything you want if it helps, but good luck with whatever you decide.

[paxtecum]

Springy is correct.
It is a fact that stress can and does cause cancer.

www.medicalnewstoday.com/articles/265254.php

www.sciencedaily.com/releases/2013/08/130822194143.htm

[JugglingFromHereToThere]

I just thought of another way to think of the stats - which of course are difficult to make sense of in terms of making a decision. So I wondered if this might help ...

Thinking 6.7% is about 1 in 20 (slightly more - actually 5% is)

So imagine two groups of 20 women ... in one group 16 women survive and in the other group 17 women do.
That's the sort of ball park of decision you're looking at (except 6.7% is slightly more than 5%)

So I guess not going for the extra protection - and difficulties - of chemo is a very reasonable if somewhat risky thing to do.
Or you might decide it was worth suffering through after all.

[Liveonce]

So sorry you are in this situation. You write very well and I suspect you are in a position to make the best decisions for you. Good luck.

And I totally understand what you mean about chocolate. It is a poison which I also battle with. I also worry that it will cause cancer. Your post has made me give up chocolate from now on with the odd exception. I am really grateful to you and wish you all the luck in the world. Whatever you decide to do.

[springydaffs]

Closely working with Macmillan, malteserzz. They suggested I postpone, which I have done.

The oncologist arranged a consultation the next day and a breast care nurse was present.I felt I was in a court, intimidated by the science and expertise before me (my stuff). The oncologist is heavenly, a truly lovely man, but he is of course fully wedded to science and his discipline - of course he would be. I know they care and want the best for me.

The breast care nurse over-egged it I think. She said if I didn't take the next slot I could have to wait 4 weeks for the next slot to come round. I didn't believe her - I live in a large city with two oncology teaching hospitals. I don't believe I would lose a 'slot'. I didn't appreciate the open pressure.

I feel pressured by time and also my so far decision to not Google;therefore dependent on information given to me. I am googling more - tho very carefully -largely bcs I am getting one-track, vested advice. I hear my team have contacted my GP to check I don't have mh issues. Thankfully, my GP assured them there are no mh issues (I'd be sunk if there were..) and was very positive about me; but the implication is that if I don't roll over and submit wholeheartedly to their discipline I must be not quite right in the head.

I am meeting other women with BC through various support groups. I have two (new) friends with triple neg but both much more advanced at the outset and both with the Brca gene. They are understandably grabbing every treatment option with both hands - as I would be in their position. I am not down on the treatment for the sake of it, don't particularly have a need to 'control'; I am just not convinced this treatment is necessarily appropriate in my circs.

Voice in the wilderness, though! The isolation of that isn't helping.

[briteside]

Hi spring, I am sorry for your diagnosis - it really is a shock. I am guessing you have looked on the NHS Predict Tool?

Everyone's decision is personal to them and their situation, but I can only share my own experience...

I was diagnosed with Stage 3 Triple Negative BC last summer and had the usual poison, slash & burn (Chemo, then mastectomy & Rads). I have 2 young children and I was keen to 'go gung-ho' - throw everything at the cancer. Before my diagnosis I was fairly healthy - ate well, very active and not particularly stressed. I was concerned that if I had a fairly healthy lifestyle beforehand, making lifestyle changes may not necessarily prevent it from coming back.

Having Chemo first was interesting for me, as I could literally see the Chemo shrinking the tumors at each scan. I originally had 4 lymph nodes infected - by the end of Chemo there were only cancer cells present in my Sentinal Node. There is no doubt in my mind that as the Chemo worked on the existing tumors, it should have worked on the microscopic cancer cells that would have been in other parts of my body.

I do think that conventional & alternative medicines/lifestyle changes can work together - there is no need to choose one or the other. I may have had Chemo (TOUGH but doable) but I have also made other lifestyle changes!

And to echo smee - it isn't the NHS who drive the use of Chemo, radiation or brutal surgeries...I was treated at a private hospital and had exactly the same Chemo regime as offered on the NHS. My friend in the US was offered the same for her BC, another friend in Spain was offered Chemo for her Lymphoma...it is not ideal, it is not easy to endure and it is not (at all) easy on your body but it is the best they have to offer...