Declining Treatment

I was misdiagnosed in Oct 2006 as being Stage 2 of a gyna cancer. I was given concurrent chemo and RT. I was not quite as fit as you, but the day before diagnosis I had walked ten miles uphill and down dale. The chemo absolutely wiped the floor with me, physically and mentally (I was reduced to re-reading books I'd read as a child and watching daytime tv). If I had been given the correct diagnosis I would have said, No thank you" after the first chemo session, and would have just had RT. I did in fact subsequently refuse another chemo although that was because the oncologist had told me I would just be having RT, and it was only that I noticed the word "Carboplatin" written on my RT card that I discovered that another doctor had prescribed it for me and there had been a mix-up. I have no regrets about refusing that chemo. I was given "3-4 months" to live by the same hospital - 15 months ago, and I am still getting out and about - even managing a 9 mile walk in heavy rain the other weekend, and managing to swim 15 lengths (in a swimming pool not through floods although it's been that sort of summer!). I am convinced that I would have lasted longer, and in better condition without the chemo. After all, if there is no cure (and I read later that there is no chemo capable of curing my cancer - or not in England: Wales and Scotland have a different, more efficacious blend), why go through something that is going to debilitate you further and faster?
I would have much preferred if they had performed a hysterectomy as I don't understand why it isn't a good idea to get rid of the primary as fast as possible. It was already in my lymphatic system, certainly, but I have a lot of faith in the skill of surgeons, and after my experience with one professor, one oncologist, one registrar and one RT assistant getting it so very wrong that first time, very little confidence in the Chemical Weapons Men!
It is a hard decision for you, as I would imagine that your family and friends - and many people on this site - will be aghast, but I fully understand your reasoning. I may not have that many months left, but I have always counted Quality above Quantity.
I wish you all the very very very best of luck, and emotional support. I have changed hospitals and recently saw Professor Gore of the Royal Marsden. "You are in the driving seat", were his words - and they fell on very astonished but welcoming ears! I believe that oncologists should be taking more time to explain alternatives right at the start - not stuffing us into the sausage-machine like Mr Punch and the baby. xxxx Penny

Hi

I can sympathise with you as it is the chemotherapy that makes you so weak but once it has finished you should be able to get strength back etc and hopefully you will not have any more secondaries to delay. It is worth finishing the course even though you do not feel so good and it is stressful but think ahead and take your doctor advice about what is recommended. It is possible to go into remission as i dont know what chemo you are on - I took Taxotare for when it was said no hope after having secondary cancers but it did knock the cancer back into remission even though it has now returned. I wish you all the best and good luck.
Rose

Thank you so much for your replies. I knew that this post had the potential to be controversial so I hope it didn't upset anyone, and it is good to know that I'm not the only one to consider this route.

Obviously I am planning for the worst case scenario as I haven't yet had results of my bone and CT scans, and hope and pray they will be OK.

thanks again

When I read you blog I felt I recognised myself as I have felt at various times through the last five years. My heart goes out to you! You describe yourself as feeling wiped out by chemo - I was too in 2003 - and never believed I would ever get back to University again (I was almost at the end of year two when I was Diagnosed) I had to let my Uni pals carry on without me and I was devastated by this. However my treatment did finish and I was sent back to normality - repeated year two and then completed my degree. I never believed I would get to that point mind - so when I did I was extra proud to have done it. My point is - you will get back to doing all the things you were doing prior to treatment it just probably doesent feel like it at the minute. You sound both scared and angry - and who can blame you - cancer has temporarily taken away everything you enjoyed doing and also any feeling of normality (((HUG))). I know I looked back at chemo and thought - noooo I will never again have that ever! But in Feb when I was told my cancer was back and I was terminal I realised that chemo was a definate possibility - so I ran away to Florida -had a holiday with the kids and tried to get my head around things a bit. I have just has three cycles of chemo (different type to last time) and it wasnt half as bad as in 2003 - I am now changing again to a different type of chemo and am getting my head around that too. But I am trying hard to enjoy life at every opportunity and batten down the hatches on the days when I am not up to much. I can expect to be on one form of treatment or another for the rest of my days - but yes - there will come a point when I say I have had enough and that I dont want anymore treatment for the cancer just control of pain etc. However I can tell you - not immediately - but soon after finding out that my cancer was incurable - my fighting spirit came forward and I have so far accepted all treatment - because I am really not ready to give in - and also am quite scared of the day when they say we have nothing else to offer you.
Jinete waiting for scans etc has us all biting our fingernails and working our way emotionally through all the scenarios that the results could create - and it is horrible. But often when we KNOW the results we feel differently and I want you to give yourself a break - when you know what you are dealing with then deal with it. I wish you strength and courage and most of all love. I dont know if any of this has helped but if at anytime you want to send me a PM - I am on the site almost everyday and am happy to be an ear/shoulder for you. Best wishes (especially for your results) Love Jools x

Dear Jinette

My husband has bowel cancer and had no symptoms until it became advanced. The chemo didn't work but made him extremely ill and we almost lost him earlier this year. He did have some surgery and has had no chemo since the end of last year. He's had radiotherapy which wasn't all that great, but much fewer symptoms than chemo. I'm so grateful for the time I've had with him, chemo-free. He's put on weight, can eat normal meals, has found his sense of humour again, he can drive again and doesn't need me there all day to do everything for him. He's probably never going to work again, but hey I've got him back for a little while.

Now, because the cancer is coming back and he has secondaries, the hospital have offered him a trial of a new drug from the US. He said we've got to try and he's going ahead with it. All that I can think of is the sad and sudden decline I will have to witness all over again, the terrifying nights when he's in pain and I don't know whether to call the hospital and get him admitted yet again. It's not my choice and I don't know what I would do if it were me. All I know is that the chemo route is probably not going to give him much longer, but it will almost definitely make him suffer all over again.

It's always going to be a very difficult choice but having had the experience of previous treatment, at least it will be an informed one.

All the very best to you and your family.

Tricia

I really hope that the new chemo has fewer side-effects and that it does noticeable good. If not, it is after all possible to step out of a trial at any time. I am glad that you have had your husband's love and presence for longer than expected. I know what this situation feels like, and can empathise with you over the changes wrought by chemo. Sending you lots of love, and the hope of hope xxxx Penny

Hi Penny

Sorry I've been away for a few days. I always value your wise comments and great support. It's lovely to hear from you again.

We are having a short break before the trial starts. As you say, Alan can step away from the trial at any time and at least this time we know more about the side-effects of chemo.

I do hope you are keeping well.

Triciaxxx

Hi J
this has been on my mind for a very long time. I have breast cancer with secondary liver cancer and have spent the last 2 and a half years having treatment. The cancer in my liver is spreading rapidly. i feel so ill with the chemo that I just think - is the treatment worth it, as so far has been ineffective. I have never felt ill because of cancer - only treatment.
If only someone could say how long we would have left under the two different scenarios, but they can't.
I sometimes think as i walk towards the hospital that I will turn round and never go back and live the rest of my days feeling well.
Who knows what the answer is?
I have decided that if this current chemo has no effect, that is what I will do!
Yet, my kids are only 10 and 6 and I feel I have to try and be around as long as possible for them!

Teresa

Glad you are managing to have some Quality Time together, Tricia, before your husband starts on the trial. Wishing you both the best of luck with this, and please keep us posted as to developments. How long is the trial planned to be, and what side-effects have you been given to understand might occur? Thinking of you xxx

Hi Teresa - yes, it is first and foremost your own body, and if they reveal the worst-case scenario that the chemo is not managing to hold back the spread, then I can imagine you would feel it the best thing not to submit to any further chemo. I know it's even more difficult when children are in the equation, but it must true that feeling well enough to build up some very special times with the children would make a lot of difference to how they remember things later. Oh WHY is this horrible disease so hard for them to cure? When I read about other people like your situations I really feel angry that so little can be done. Anyway, sure we all feel like that, and I really just wanted to send my love, and some hugs to both of you at this time.
Lots of love xxx Penny

Hi Penny
thanks for your message.
Yes, I have some great times with my kids, like this weekend which is my daughters 10th birthday celebration. She is having a great time!
Next week i am having another shot of chemo and I am so dreading it, i have had loads before but this taxol? gemcytabine does not seem to agree with me! I have to try it again, I know. Just hate my kids seeing me so ill!
Teresa x

I hope that this one doesn't prove as debilitating. I can imagine you must feel it so much to see it through the children's eyes. How many more are you supposed to have before they do another scan? Please keep us updated...
So glad that your 10 year old has just had a special birthday - it must be so so precious to you to know that they are enjoying themselves.
Lots of love xxxx Penny

I also too had or have grade3 cancer.. removed tumour in may now having chemo my fifth soon ...I am too questioning carrying on.. I feel worse now... I guess we have to trust the doctors on what they say... Also if you didnt and it came back would you regret not having the treatment .. Part of me feels so awful with treatment i wonder if its a good thing , all these nasty toxins in your body .. To be truthful i am not sure of the answer, my friends and family all say keep going but thay are not the ones whom are doing it all.. Have had 3 fec treatments now having something called docetaxyl and its awful .. aches sore throat ,tight chest ..I need normality !!!!!!!!!!! So yes you are not the only one who questions it all.....melanie

I had a week to decide if I would have chemo. "One or two cells near a vein. 84% survival without, 88% with chemo. I agonised for a week, then the oncologist filled in the form passed it over and said "sign here" so I did. I had 30 weeks of it, 7 1/2 cycles. Sometimes I felt terrible, sometimes not too bad.

I still don't know why I went for it. I don't know what I would decide if I had the choice now.

It just seems as though people just go for every bit of help they can get. Having cancer is a full time job, draining your body and your mind. Your previous life couldn't get near it for danger, physical drain and stress. One day you will go back to your old life and say to yourself. "I had cancer, and recovered", and you will be glad you did it.

Some people go for alternative therapies instead, and I would be the last to say they are wrong. I don't think you would be symptom free even when the chemo wore off, in 8 weeks or so. Gradually, you would be in more and more pain. I am 63, and there's not much for me except grandchildren and a long miserable retirement. I still think it is better to take everything that's offered, either through the NHS or alternative therapies. You are quite young. You will get back to your previous life, though it might take some time. Every time you fight for your life you are working hard, so don't view this as a waste of time. You are doing something profound and significant. When you are back in real life again, you will be a different person. Probably stronger if anything because of going through this.

I hope this helps

Ruth

Hi Ruth
the point is - I won't get back to my previous life!
i am terminally ill. The question is - live the rest of your life feeling ill from chemo or a shorter life feeling better!
Teresa

Yes, we are both in the same boat there. I'm actually finding that the Marsden will not be pressing me to have more chemo, and they seem to understand that the results can turn out to be so much pain for little gain. Personally I think it's very much live for today, tomorrow, this week, next week - and I daredn't look forward to anything with confidence after that - and I've been existing like that for well over a year now - but I have done a lot in this year that I don't feel I would have if I had had the second lot of chemo.

I reiterate that I believe there can come a time when we can say no to chemo. That does NOT mean that we are saying YES to pain, only no to the multiplicity of side-effects that in some cases can turn some of us into zombies anyway. Those of us who are stage 4 and deemed incurable do not have the same opportunities as patients who have chemo because there is a chance that it will put them into long term remission.

Teresa it is your life, and your choices. I have respect fort your decisions - I just know how hard that the making of them is.

Lots and lots of love xxxx Penny

Dear all - thank you so much for your replies, I can see that this pain/reward ratio is a subject that many of us consider at many points throughout our treatment.

I should say that I have been lucky, my scans turned out to be fine. Waiting for the results was terrifying though.

thank you all so much again.

I wasn't actually thinking of your terminal situation. I was just passing on my own feelings about the much dreaded chemo. If I have offended you, I am sorry.

Sometimes scans show reductions in cancer, and there have been some great recoveries on this board.

Ever since I first came on here, I have been feeling a bit of a fraud, because my cancer was caught early, and my chemo dragged on a bit, but I wasn't too bad with it.

I just try to share a positive point of view, and often wonder if I have been too much of a cockeyed optimist. This time I was. I'm sorry.

Ruth

i was diagnosed with the same as you and went down the same path, CT, MRI bone scans etc but didnt think of declining treatment as i want to live life more. I have just finished today chemo 7 of 8, some treatments are a little more uncomfortable than others but its not too bad i still go to work, i had 4 treatment of EC combination and 4 of taxotere then surgery in november, The chemo has shrunk the tumor and most of the infected lymph nodes so it does work. If you decline treatment then it may spread and you will become poorly more, exercises can still be taken in moderation, and horse riding and anyway it will all be there when you are well again, why decline treatment?

Good luck in your decision xx

Glad the chemo has done some good. However, the body does build up a resistance to it - or rather the tumours do - and in my case there is actually NO drug which has any chance to cure you - they just give stuff to you in an effort to make the radiotherapy a bit more effective - and when you have been told that there is 0% that you will be alive in two years time, you have to think HOW you want to spend those two years. Remember the particular chemo I had really actually brought ON the illness which I hadn't really noticed before and made me so ill that I couldn't do anything except lie in bed all day - a hideous prospect for someone used to having a very active life. I don't think this is about people wilfully turning down chances to live, it is for those of us who have ZERO chance taking control back of how we want to spend the time we have left to us. It is definitely not casting aspersions on anyone who wants to go down the total medicalised route - each to their own! With best wishes and with sincere congratulations at your clear scans - fantastic! xxx Penny

i woke in the night thinking what i wrote was crass without properly reading everyones views and i apologise. You ar right and it was interesting to read everyones views. The thing is i have never been told about percentag of life i have left and i will ask next time i go to clinic in 3 weeks time. Reading this site although has been informative its been really quite an eye opener as it means i wont ever get well then. I have had 7/8 chemo before surgery in 6 weeks after the last lot but although its grade 3 in breast and lymph i was told the chemo had shrunk the primary and most of the lymphs therefore making surgery not so invasive but they dont know yet about masectomy until after the scans which i will have two weeks after last chemo. After reading this site i can only guess that although they can cut it away it will come back again then afterwards. In that case i think i would tend to agree with you and Jinette if i was terminal i dont think i could go through this again and would perhaps decline i dont know i am not in that situation yet but its good to be prepared for it. You are all very brave and accepting and i understand where you are coming from. Its just a shock that this awful disease will come back again - oh well i must either face up to it or stop reading this site and bury head in sand until the next lot.

love to you all xxx

I have 3c ovarian cancer and although I appear to be responding well to chemo at the moment I have been told categorically that my cancer cannot be cured and will return. This is the one thing I can be certain of. I don't know whether I will go into remission, and if I do I don't know how long remission will last. And the oncologist doesn't know either - just that the statistics are very poor for this type of cancer. I've been told that when the cancer reoccurs, I will have to have chemo again. And again, and again. At the moment, my feeling is that I will do everything in my power to beat this disease. However, I will also listen to my body and my heart, and I am sure that I will know when is the time to stop fighting and accept. At the moment, all I can do is deal with this first step - no point in worrying myself senseless over the next one yet. And it's amazing to me to find reserves of strength I didn't know I possessed! My heart goes out to you - it is such an invidious position to be in. Big hugs and lots of love, Kate xxxx

I had a mastectomy with 22cm tumour removed with 10 lymphs in October 2007. Then 3 x FEC and 3 x Taxotere between Nov 2007 and March 2008.
Chemo is pretty carppy and you feel all sorts of pains but I hept working in an office job all through. I had the chemo on a thursday, took Friday off, and was back at work eack Monday - its not as hard as you think.

I then had an 8 week interruption due to infection causing an abscess on the scar which needed an operation to drain it, which then delayed radiotherapy.

I had radiotherapy 3 times a week over 4 weeks (12 fractions) and fitted them in with work as a long lunch break.

Now I'm on Herceptin which is a doddle.

Unless you are doing eventing, I don't see a problem, you should be back in the saddle about a month after chemo ends.

You will suffer more long term efects from surgery and removal of lymphs than you will from chemo.

I don't ride horses, I ride motorbikes but my wife & daughter ride horses and I know what is involved. I was riding the bike again before the chemo ended, you feel ok in the 3rd week of a 4 week cycle.

Thrup x

Dear Jinete

I've just been reading through the various posts and perhaps I can offer a different perspective. Unfortunately I have two different primary cancers, breast cancer and leiomysarcoma of the inferior vena cava. This has meant that the sarcoma oncologist has advised that they cannot treat the sarcoma at all without it having a devasting effect on the breast cancer and I can only receive minimal treatment for the breast cancer because anything more radical would set the sarcoma off. I just had a rather grim appointment with the sarcoma oncologist in which he reiterated that there was no possible treatment and that unfortunately the sarcoma was growing more rapidly than they had at first thought. The only thing he could think of but which he couldn't totally recommend was aggressive radiotherapy to my abdomen but he warned that this would badly damage my bladder, bowel and kidney (I now only have 10% function in my right kidney anyway - the sarcoma has done for it) - I did decline this.

When I was first told that I wouldn't be treated (or at least only receive Femara for the breast cancer), I was shocked - I couldn't believe I was attending one of the best cancer hospitals in the world (the Royal Marsden) but they could do nothing for me. However, the upside has been, that although I am very sick indeed, I actually feel very well - like you, Jinete, I had no particular symptoms before diagnosis and apart from very bad back ache (well controlled by Co-codamol), I have no particular symptoms now. This last year, I have just carried on working, went on holiday to Costa Rica (against medical advice - I now have a pulmonary embolism to add to my woes) and really sometimes have to pinch myself to realise that I am in fact dying.

This is just to say, that living without treatment can be surprisingly pleasant - although I do have to add, that if I was offered a chance of effective and not totally debilitating treatment, I would go for it without a second thought.

Anyway, Jinette, I hope that things work out well for you.

All my very best

Mary

Janis - please don't apologise to me as it's impossible to remember all the stories on any thread, and I always find that I too forget what someone has said. You didn't say anything upsetting - it's just that I feel I have to set out my stall LOL even though it's not a popular one - and thank goodness it doesn't have to be - most people are like Thrup with this just as an intermission and timely reminder in one's life to re-assess.

However, I would suggest to you and anyone else that you don't really need to ask about percentages: I am proof that the bad ones don't have to come true as I 100% shouldn't be here according to what we were told the day they gave me 3-4 months. My experience has been that I had an oncologist who all along trumpetted the statistics, and I had my percentage sink rapidly from 70% to the discovery of their mistake - 20%-30% to 0%. I have to say that knowing this information at the start of my treatment and during did not fill me with the positive mental outlook we are all told is so vital - so would suggest NOT asking. I think: why make yourself unhappy with prognostications which may be half truths!

Mary - so sorry to hear this latest about the only thing on offer being such damagingly aggressive radio. However I really admire the way you have done - and continue - to do such amazing things. There are so many people who will never understand what life is about, and look back at the end and think, "What have I really done?" - you are not one of them! You seize every opportunity, and no-one can accuse you of wimping out of any possible chance to LIVE.

Loads of love (and admiration) to everyone xxxx Penny

Hi, I'm new to this site and just wanted to say how incredibly amazing you all are.
I had a lumpectomy and lymph gland removal followed by chemotherapy and radiotherapy, back in 1999/2000. I celebrated the millenium with a glass of champers, a Hickman line and a 24 hr infusion pump!!I have had a couple of scares with benign lumps but thankfully nothing serious.... I marvel at how focused and calm some of you are, despite your illnesses.Truly inspiring!!!! I wish you all the best xx

i was diagnosed with bc in june 2007. Had 6 months of chemo(fec) then followed r/t.Was suppose to have a bilateral mastectomy in november 2007 but a week before surgery was told no point it had spread to my lungs.I couldnt live with the breast so in may 2008 i insisted they remove them and they did.I have been offered more chemo to try and give me a bit longer but i have DECLINED, I want to spend time with my family and friends cos its about QUALITY NOT QUANTITY. Its a hard decision but its my decision and some may think im not a fighter but i dont care my immediate family understand and accept my decision.

I was originally diagnosed with breast cancer in 1995 and had nearly 10 years of remission.

It came back in my liver and spine in 2004 when I had taxol and bisphosphonates. In 2006 my liver disease became worse and I was really ill in so much that my oncologist told me that I needed to get my affairs in order as I only had about 3 months left.

She said that there was only one more chemo (at that time) that I could have which was Xeloda and although I was really ill and could feel myself going down week by week I decided to try it. 2 years on I'm still here and so glad that I did have the chemo.

However, I think it depends on what chemo you're on (I'm still on Xeloda and just starting my 34th cycle) whether you decide to stop or not. If your quality of life is really poor on chemo I can understand why some people don't want to continue as I think I might well think that.

You're both between a rock and a hard place. Equally I declined a series of chemo and am also still here 17 months after they gave me "3-4 months", having had not a single bit of help or treatment in between. My quality of life improved gradually as the effects of radio and previous chemo left my body and I have done an amazing amount of exciting and important things in that 17 months. If I'd felt as I did during the six weeks on the first chemo, I wouldn't have even been able to get out of bed.

It is a personal matter. No-one else can tell us what to do. They can say what they did - or what they think that they would do in the same situation, but in the end it down to us - we have to live with the consequences, and whilst someone may feel fairly well on one sort of chemo, another person might feel absolutely dreadful.

I'm sending best wishes to both of you xxxxx Penny

Thanks for your replys ,i just hope i have enough time to do lots of exciting things. At times i think its a crap world we live in but when it may be taken away from us in this cruel way i feel stop moaning and go and look at possitive things we can do .

best wishes to everyone

my partner has bowel cancer and secondry in the liver and abdominal sac, despite chemo this has spread and he has been given the option of a more aggresive chemo or no further treatment, a decision he has to make by Thursday. Like you, the chemo has reduced him to someone we both don't recognise. We are seeing our McMillan nurse tomorrow and I am going to question her about the availability of dietry treatments as an alternative, which can also be used in conjunction with chemo or radiotherapy . I don't know if they work, common sense tells me that there must be a more natuall way of dealing with this disease, but when it's your life or the life of someone you love that's at stake, it's a very big decision to have to make. The thought of life without Lee is totally unbearable, I just want him here with me regardless, but quality of life is important and it is his life so whatever decision he makes he will have my full support. I'm trying to be strong and can't imagine what it must be like for him and for you. I hope things come good for you, xxx

I too have decided against any more Chemo, it wasnt going to cure me just give me more time. Id rather have quality than quantity. When i was rediagnosed i had no symptoms and was working full time. I was started on chemo straight away and have been really ill ever since. If i could turn back the clock i'd tell them to stck it! Im only 42 and i feel like on old Woman, some days i cant even get out of bed.