Hi,
I don’t know anyone who has refused it. I felt like refusing it but after reading how many recur I went back and asked for it. I do have a friend though who wishes she could turn back the clock and have chemo. Four years ago she had the tiniest tumour and had it removed and they said no problem and then she had to face secondaries just 4 years later.A primary diagnosis is a very different place to secondaries and you only stand at this decision point once. I am pro-chemo and although it is scarey to think about it, the reality was not as bad. I was never sick or even felt sick and no mouth ulcers. Other things yes but after the first couple you get into a pattern of knowing when to take it easy and you really do make the most of feeling fine days. Why not start it and see how you go. Even a couple will improve your chances and they adjust doses if it does not suit people and have tons of cures for every symptom.
Good luck and if it has already escaped to the lymphs then a good dose of poison down the veins will give it a good kick up the backside.
We all understand. Hugs
Lily x
Dear Naz
you may not think we have much in common - (apart from BC ) but maybe a little of what I felt may resonate with you & maybe it might help you.
My prognosis was worse than yours but I am probably a lot older than you. A year ago I was in your situation and feeling shell-shocked. I was considering going against medical advice and to have just rads rather than chemo as well.
I was so fed-up (and angry) at how BC had suddenly appeared & totally disrupted my happy, healthy life; after 2 lots of surgery, infection and bad results I thought I would just take my chances, opt out of further treatment and just maybe, I’d be one of the ‘lucky ones’ .
I didn’t want to have more months taken over by treatment & hospital visits; I didn’t want to lose my hair; I didn’t want to have to cope with all the side effects of chemo and I didn’t want to end up feeling a lot worse than I did before I was diagnosed.! I thought I had come to an entirely logical, worked-through position having attended all too many funerals of friends with cancer, including my closest friend.with BC.
I thought I was being ‘realistic’ (though the oncologist called it ‘cynical" ! ) After talking to him at some length and having my pathology report & the stats spelled out to me (again) I realized that it was just ME that I was thinking about, rather than the other people who love me.
There was another major factor as well; my younger daughter had been dx with BC at 32 and had already gone thro’ all of this and more.
I realized that for me, it was morally unacceptable to turn down the treatment that was being offered in good faith …and in MY best interests. After all there is no shortage of patients - the oncologists are not exactly touting for business are they? Maybe I have been lucky with my onc- he put no pressure on me at all- just gave me the stats and left me to think it over- he (rightly) assumed that I would get over my hang-ups and do the right thing.
Everything that I had NOT wanted did come to pass- but I am now 18 months on from dx and feeling fine. I shall never feel quite like the person I was in May 2008 but I am grateful for the chance I have had to continue to live a full and happy life and to be able to smell the daisies - and my lovely grandchildren!
Hi Naz
yes, I know of someone who refused both chemo and tamoxifen after a lumpectomy and radiotherapy. I am not sure of the reason why, but I am sure she had good reason and so long as she can live with that decision then good for her. I know her stats were low at 3% for chemo.
I was also given the choice, at age 43, 16mm lump, grade 2, no nodes involved. My stats were additional benefit of 3% mortality and 7% recurrence which I didn’t think were too significant. I took 6 weeks to make a decision and still am unsure that I made the right one, but having made it I’m not going back. It was possibly the hardest decision I have ever had to make. I took it because everyone seemed to think I should and I am very scared of the side-effects of tamoxifen, so that if I find I can’t tolerate tamoxifen then I will at least have the chemo to back me up.
I am halfway through 3xFEC and struggling with the side effects but will probably continue to the end. It’s not the end of the world, although it is possibly one of the most horrible things I have done. At your age and with your stats I would recommend you do the chemo. If you have any doubt, just read through the ‘living with secondaries and in memorium’ forum and think that the chemo will help you avoid joining the truly unfortunate women who also have secondaries - I met a woman of just 28 already with secondaries on her liver a few weeks ago and it made me realise just how fortunate I am to have the choice.
Whichever you choose - and it must be a decision that is right for you, I wish you all the best. I read a quote on here once which I thought was so good. It was from a consultant to a patient and said ’ give me 9 months and I will give you back your life.’ I hope that puts it in perspective.
good luck
Helen.
p.s It’s 6xFEC, and I am just about to go for my fourth cycle.
There is an excellent book called ‘coping with chemotherapy’ which I found in the library - not sure of the author but google it. It’s a small paperback and very current and if you like knowing what it is you are getting into in a technical but readable way then this is for you. It’s very easy to read and tells you all about the history of chemo (very interesting) plus all the drugs and side effects.
Hello Naz,
Like you, almost 4 years ago I had a big lump and also spread to some lymph nodes. Like you, I felt very dubious about chemotherapy. Actually I was even more scared of radiotherapy, considering the lung damage my Mum had suffered. But my Mum’s treatment was 15 years ago, and like others have already said here, treatments of all kinds have been refined and improved since then.
My advice, based on nothing but my own experience of course, is to do everything that conventional oncology dictates, but to also do ‘alternatives’ - you don’t have to choose one route over the other. They are not mutually exclusive. Soon after my diagnosis, and then again after surgery and pathology report, I spoke to a holistic doctor who often supports people in their choice to refuse chemo. In my case, given the size of tumour (5cm but flat not round) and the spread to 7 out of 12 lymph nodes, even this ‘alternative’ doctor advised me to do the chemo. But alongside it, I also took high doses of b vitamins and anti-oxidants, changed to a high-alkaline, non-dairy, low-sugar, non-alcohol diet, took Bach flower remedies, went to a spiritual/reiki healer once a week, took up meditation and visualisations, and learned breathing excercises to help me reduce anxiety by myself at any time. I lost my hair, lost weight, was sick as a sick dog could be, but the mental skills I learned, combined with healthier diet and supplements, did make me feel I had some control. And the 6 months/8 treatments went by very quickly. And my hair and weight came back just as quickly. It is astonishing to me how resilient the human body really is, and how amazingly adaptive it is, and how quickly it manages to heal after trauma.
My other advice is to not expect any support from oncologists about so-called ‘alternatives’ because they have no clue. That may be as shocking and disappointing to you as it was to me, but that’s just the way it is. They are bound by internationally agreed protocols and the economic, research and development advantages of pharmaceutical companies, which have no interest in ‘natural’ or ‘alternative’ approaches because they cannot patent them/make money from them. It’s infuriating that in this situation you have to do your own research, and most conventional doctors and nurses will try to put you off - out of ignorance, not knowledge.
When I was honest and gave a list to my first oncologist of everything I was taking, to most of it he said ‘What’s that?’ He dismissed all of it. One thing he did know about, though, was milk thistle, which I’d been taking since diagnosis to support my liver. He said I must stop taking it, and when I asked Why? he said it could flush the chemo drugs out of my body. So that made me more confident of the power of herbs, ‘superfoods’ and other supplements.
This particular oncologist is well-known and very disliked amongst both patients and staff for his appauling manner and thoughtless attitudes. I insisted on changing to a different oncologist. I then agreed with the holistic doctor which supplements to carry on taking during chemo, and which to put aside for the time being. I didn’t bother to tell the new oncologist or the nurses. Two weeks after chemo I went straight back onto my full supplement regime, and have stuck with it ever since. Sometimes I stray from my diet but mostly I stick to it, and have continued to limit my drinking to a lager or two once a week, max. Actually lately I have no desire for alcohol at all.
Having had no recurrence yet, of course I can’t help but think that everything I’ve done myself, and the conventional treatments, have combined to get rid of the cancer and keep it away. Time will tell.
Recently I met another oncologist, who is quite realistic and honest with patients about the limitations of chemo. Like someone else already said, oncologists do not want to give chemo to patients unless they really think it will be more beneficial than harmful. Sometimes it’s a hard decision for them. I feel sorry for the ones who’ve made the effort to consider all angles, and I wish there were more like them.
Basically I think you should throw everything at the cancer that you possibly can, be it conventional or unconventional, within your financial reach. If you can persuade yourself that you are doing everything you can to make the cancer stop, then you might feel less afraid. Fear itself is physiological, involving stress hormones. I read somewhere that when the immune system is busy manufacturing stress hormones, it is not paying as much attention to cancer cells- and everyone has cancer cells. A strong immune system deals with the cancer cells, a stressed immune system doesn’t, and that’s when cancer cells can proliferate/clump together.
So like the cliche says, perhaps there’s nothing to fear but fear itself? If you mention this to a conventional doctor or nurse they are likely to deny it, or say nothing, or roll their eyes. So again, don’t expect them to support ideas like this. They are blinkered, and paid to follow the conventional ‘wisdom’.
Here’s a wee poem I repeat to myself a lot, by Piet Hein:
To be brave
is to behave bravely
when your heart is faint.
So, you can be
really brave
only when you really ain’t.
Good luck to you Naz, whatever decisions you make.
Dear Buckwheat, really enjoyed reading your post and would like agree with a lot of what you have written. I too, take high doses of b and c vits, antioxidants and fish oils, changed to high alkaline, non-dairy, low sugar, low alcohol diet.
A year after my op am feeling as fit as I have been for years. I think we need to look at cancer from many perspectives and do as much as we can to make out lives as healthy as possible. I have also taken up Tai chi which is brilliant for reducing stress levels and reconnecting with one’s body.
One or the many dreadful things that cancer does, is the loss of having trust in one’s body. We somehow have to regain that loss and I think by looking holistically at our lives, can help regain some of that loss of trust.It ain’t easy though and grappling with the fear of cancer is a constant battle!!
Best wishes
Leadie
Hi all
I have read all your posts in great detail, i will be back tomorrow to reply, sooo tired tonight.
Bye for now.
Naz xx
P.S I think this site is wonderful! xx
Naz mate!! I have or should that be had! grade 2, 1 node removed which hasn’t affected the lymphs (thank God)had mastectomy 1 breast and silicone reconstruction, was told that the cancer has been removed, I have to take tamoxifen for 5 years which may play havoc with myself but can have chemo through choice. Im 45, married 2 kids 11 & 8 and love life with a vengance! Instantly i feel that to NOT have chemo is giving me a shorter life expectancy and to HAVE the dreaded chemo will prolong my life span and enable me to enjoy watching my kids grow to be independant so that if this disease comes back it will not be too difficult for them as adults to understand. For now they are children. Whats a few months of looking and feeling shit so that the rest of your life will be great? Im in the same boat as you and Im gonna embrace everything that is thrown at me. I hope some of my strenght will rub off on you and we can all look back in many years time thinking that chemo was the best choice we ever made. Take care and think wisely. Meesh x
Meesh
You are sooo right. Chemo is an insurance policy, as is tamoxifen/herceptin for those of us sensitive to it.
Julia xx
Hi Naz
Just thought I would let you know I had my first lot of FEC yesterday. I nearly din’t make it into the unit and had to stand outside to compose myself. However once in I started to calm down. I have to tell you with absolute honesty it was not bad. My unit is very busy so there is a lot of noise and traffic etc but the whole proceedure went really well. The chemo Nurse sits with you if you have Fec as its given by syringe so you can have a good old chat and pick their brains got some great tips re nausea. I had the cold cap (x3, half hour each, penguin system) and apart form looking daft was fine no real discomfort just a little pain in my nose with the second one like you have if you eat an ice cream but lasted seconds only. It may not work but I would kick myself if I hadn’t tried it.
Two hours after treatment I had a bad taste in my mouth so ate sherbert lemons had some tea felt a bit sick so had another anti-sick tablet, couldn’t get to sleep until early hours this morning and awake early so took all my tablets had some cereal and tidied up. All in all at the moment am feeling good. If you want any more information don’t hesitate to PM me.
Hope this helps
Elle x
Thanks Elle,i have pm’d you xx