Cancer survivors facing 'neglect'

Hi all

This was reported on the Beeb yesterday at:

news.bbc.co.uk/2/hi/health/8429995.stm

I’m sure they did something similar last year, but it’s good to see MacMillan giving it another airing.

Whether it will lead to any improvements, tho’ is quite a another matter, I imagine.

X

S

Thanks. Very interesting article.

Ann

This is a great link. This is something i feel very strongly about as after treatment we seem to be just left to get on with it !! The long term health problems are another thing that many in the medical profession see as ‘in the mind’. Thank you for this, Bahons.

Rachy xx

Hi,

I saw this when it was on the news and was pleased it had been mentioned. I then expected a bit more about it but none was forthcoming and was disappointed as it is such a major thing as I’m sure so many of us know. My onc has always said the time after the initial ‘major’ treatment and its effects are vastly underestimated. I certainly experienced this and it’s only now 2 and a half yrs later and retired at 44 that I finally feel settled in my new life. I felt guilty about no longer being able to work but my onc had always said I could try (which I did for a month part-time) but that it may well be that I would never be able to work again and be a ‘reliable’ employee because of the cancer treatments and effects and that I shouldn’t feel a failure if it didn’t work out. She’s very supportive.

It really does need more prominence although I reckon there aren’t the funds available to provide the help needed in many cases. Plus I think others naturally think you’re back to normal once the hair comes back etc, etc and think you’re over it to help them comes to terms with it.

Just my thoughts.

I feel very strongly about this also, and feel that once treatment is finished we are left to get on with it, thrown back into the pond as it were to pick up where we left off , yes we have the check ups for a few years and yes i understand that newly DX people need the most care and time BUT??? where does that leave the rest of us who have gone through the hell that is cancer. To everyone else its over but as we all know only too well it is never over for us , life has changed irreversably and we have to somehow find a way to live with that , sadly the medical profession dont reconise that .
Not one medical professional has ever spoken to me about the emotional impact that BC will have on your life ,they talk a lot about side effects to various treatments but as hard as they may be , not once has anyone spoken to me about the biggest side effect of them all and thats trying to live your life with cancer in it and everything that that entails.To me the most difficult time of all is when
treatment finishes and this aftermath is seriously neglected.
I had hoped too at the end of treatment i would have been given some advise/help about diet ect (not just the standard 5 fruit and veg a day)but more importantly how to bulid your immune system to be as strong as possible to help stop getting every bug going and to be as strong as possible to fight desease.
It always amazes me that doctors treat the cancer but not the immune system as to me if that is neglected then we havent removed the threat of why we got cancer in the first place.
Just my ramblings, think im having an angry day , at least we have this site to let off steam
All the best
Linda x

Hello all,
can identify with everything youre all saying,up to a couple of months ago I was so down and sad all the time and although I desperately wanted to move on and try to put B.C.a bit behind me,I continually had dark thoughts and never went more than an hour without thinking about it. At the risk of sounding like an advert for Holland & Barrett,I can hand on heart recommend Co-enzyme Q10,
it hasnt done anything for the nerve pain,dark thoughts are a thing of the past and Ive certainly got a spring in my step,this is the best Ive felt since DX in Nov.07. Also I take a multi-vitamin and a rosehip with vitamin C,my daughter & grandaughters had streaming colds over Christmas which luckily I didnt catch despite kissing &
cuddling them so I presume my immune system is in pretty good shape.
As regards feeling neglected by the white coats,I had my third check-up with my Oncsregistrar this week,she changed my tablet cos of my joint pain in my hips but didnt want to see me till July,seems a long time to me as its only 7 months since MX. Then my hubby expected me to be thrilled as it suggests that I`m now guaranteed to make a complete recovery,no-one knows the thoughts that go through our minds,do they. Love to all Mags

I too can identify with this. The medical profession treat the physical effects but for the rest you are left to get on with it and if you look ok you must be ok! Lack of libido and its effects on your relationship to a partner you has probably supported you through everything and lymphoedema are some of what i am left with. Lack of libido receives no support and lymphoedema scant. I am left feeling very bitter unfortunately.

Yes, this struck a chord with me, too.

I feel once you’ve had all your little boxes ticked surgery, chemo, rads, prescription of hormone ‘therapy’ (I know we don’t all need everything) you’re sort of ‘done’.

And it’s then regarded oh, I don’t know, as rather tiresome, weak and ungracious of us to draw to their attention that we are still in pain, depressed, libido-less or have developed lymphoedema after all that has been done for us.

Moreover, it doesn’t fit the image (I’m thinking of the ‘Smile! You’ve got cancer’ thread particularly, now) of the image of a once-more glowing with health, vim and vigour cancer ‘survivor’ that seems to be expected of us.

X to all

S

wow you are all soooo right! I am a health care professional and have to say until this happened to me I saw it as treat and draw a line under it all. OMG I will decapitate the next perosn that says to me ‘well you can draw a a line under it all now rachel and get on with it’.
I’m left weak, exhausted, breathless, fat (i was thin), with strange hair, lymphoedema and cording and no self worth! HAve you guys seen the thread when will I be me again - lots of the girls on that describe the feelings of abdonment by the white coats and by their friends and work colleagues.
I saw the press article and heard the news on the radio and i thought Yippeeee at last it has been recognised that there are long term repercussions of treatment. All has gone quiet now but when I see my ONC I will certainly push this issue with him and ask what next for all of us.
It almost assumed that because we have ‘survived’ cancer and ‘fought the battle’ for now we should be grateful and get on as before. Well I am grateful but i am also very bereft for what I have lost and for all of the awful things I have gained!
i am still waiting for lympoedema assessment som,e 8 weeks since reporting it to my BCN shge advised me it could take 4 to 6 months before i see soemone because … lymphoedema isn’t life threatening and is not seenas urgent.
thanks everyone x

I’m “lucky” in that I got away with a WLE and didn’t require chemo but I have developed lymphodema and I can tell you that it is totally crap ! It has had a huge effect on my life seeing as I’m right handed and I have most certainly been restricted by what I can do now.What annoyed me most was how much I had to fight to get to see a lymphodema nurse as both docs and BCN weren’t taking it particularly seriously,well it blooming well is serious as it has affected my life so much .It really doesn’t help when they tell you it is incurable but manageable.The sooner you get seen the better your chances are of keeping the condition more manageable,so please make sure you shout out about it .

Sandra x

So glad this is getting an airing.

People need information before treatment about possibilities, even minority ones since some of us obviously will fall into the minorities.

So much postcancer distress is due to not having been informed properly about what is going to happen. It should be patently obvious to professionals that it is hugely preferable to be forewarned about things one might have to face than to find out because it happens to you, which feels like being hit round the back of the head by a cricket bat. People diagnosed with cancer have to face a lot of hard realities and it does no-one any good at all to be ‘shielded’ by wellmeaning (cowardly?) professionals from what is going to happen. We have to adjust our self-image, our plans, our prospects, as a result of treatment, and they should have compassion for this, rather than misleading everyone by saying cancer can be ‘cured’. That is just a distortion of the truth.

All the more important where preventive medicine is concerned, i.e. where screening is offered, and all the more so when invitations to screening are not neutral and unbiassed, but persuasive and selective.

sno

I remember on the day i was DX , the BCN sitting me down and telling me "it will be 3 mths out of your life " Errr does that include the surgery ,the 8 rounds of chemo, 5 weeks of rads oh and not to forget the 5 yrs of Tamoxifen?? not to mension not being able to lift my arm more than 3 inches for 18 mths due to the chronic frozen shoulder (still only 80%) caused by underarm rads .
Sometimes i think even some of the medical profession dont have a clue. I quess noone can comprehend (even doctors )what its like for cancer sufferers unless you have been there , but with more and more people liveing longer lives after a cancer DX i think much more needs to be done on the quality of life issues that many people continue to face long after treatment finishes.

Linda x

I think what is needed is for professionals to put understanding ‘patient experience’ at the top of their priorities instead of way down below scientific curiosity, technical challenge, data-gathering, efficiency, and whatever else. Doctors are morally reprehensibly ignorant of ‘what it’s like for the patient’ and treat us like livestock in a food processing factory: that means they have lost their humanity, and no amount of “they have such a lot to think about, and if they thought about what it was like for the patient they could not do their job” will excuse it. If you have to sacrifice your humanity to practice as a doctor then there is no such thing as a doctor, only technicians, and in any case it isn’t true, it is a gross moral misunderstanding. If they gave thought to what it is like - if they asked themselves what they would want if it was them, or one of their family - they would treat us very differently - and much better. Especially in terms of preparing us sensitively for the reality to come, and ‘walking by our side’ through it, and being open to ongoing care - care - after it. But they do not think that, they are not trained to, and the exigencies of the job to some extent prevent them though as I say I do not want to make excuses for them. They are decent people, but they are nto thinking the right thoughts and nothing in the training or continuing professional development is asking that of them. It is about training, and it is possible for a doctor to be a human being, and stay a human being while practising as a doctor. It is a question of priorities. How they behave shows what their priorities are, and that shows what sort of person they are. Now I’m not saying they aren’t decent human beings. I’m saying they are complacent.

I also think they are smug about the treatments - they are so proud of their great successes. My experience has led me to the view that the consulting room (the insulting room) is a very particular social situation. The doctors have already decided before they meet us what they’re going to do, and telling us is a formality they want to get through with minimum disruption so they can get on with their ‘real’ work of treating patients; talking to them, informing them so they can truly consent to treatments, is not part of that, it is an obstruction. Further, they want our admiration. They want us to be as impressed by the medical technology as they are, they want our unqualified gratitude, and if they don’t get that, they are so bereft of emotional, intellectual, imaginative and dare I say spiritual resources, that they interpret a patient’s lukewarm response as negativity or even depression. They think they are clever (after all, they’ve been encouraged to think that since getting their A grades and getting into medical school and the rest) and that they are cleverer than other people, who therefore won’t understand. I’m saying, from my own experience, that they place requirements on us, make demands on us, when it should be the other way around - and that patients are too often too eager to meet those requirements obediently, partly because nice people like to please others, partly because patients are dependent on doctors in an unequal relationship. But it’s obviously not conscious or none of us would do it, we’d realize the folly of it.

It is that personal, because ultimately, we suffer, and we suffer at the hands of individuals, who do those things to us - fail to inform, talk down, forget what we need to know, downplay, skew and spin the truth, omit the all-important details, fail to consider how it feels, fail to take an interest except intheir narrow brief - diagnosis, treatment decisions, administer treatment, monitor results, goodbye; those things they do may be necessary (though whether they genuinely are is another question), but the spirit in which they are done to human beings should not be one of blithe indifference - it would be impossible for a person who had genuinely taken the time to consider the consequences for the person of what they do for a living to say to them, “Cured, go and get on with your life.” I have tried and failed to raise this with my hospital, nobody wants to know.

sno

I have to say, in my own case I could not fault the oncologists, whose duty of care was excellent. Sadly it was the GPs who let me down near the end. 6 months after finishing chemo, but whilst I was still on Herceptin I contacted the breast care nurses in a state of distress. I had gone back to work in a new job and it had not worked out partly because the employer did not have the agreed training package in place. This deeply affected what fragile confidence I had left and I felt as if I had been pushed off a cliff. The breast care nurse told me to get an appointment with my GP to explain how I was feeling and to ask for his permission for my breast clinic to refer me for counselling (they need the permission of the GP surgery as they are your community Doctors).

I did not think this would be a problem as I had seen the same GP all the way through my treatment and when I went to see him I was still very distressed. Well, I was really shocked at the way I was spoken to as he just looked at me and said “you DO NOT need to see a clinical psychologist for counselling, you just need to accept the fact you have almost finished your treatment and get on with things again”. I just didn’t know what to say in reply and I left his office shaking. Had my OH gone in with me he said he would have torn the GP off a strip. With hindsight, I now think I should have registered a complaint.

The oncology registrar sent me to see a colleague who was a menopause specialist as he felt I had some physical/psychological issues stemming from now being post menopausal. The Consultant I saw recommended a low dose of oestrogen, plus counselling; she put this in a letter to my GP. I found out when I rang the surgery a few weeks later that it had been passed to the office staff marked “for filing - no action”. This prompted me to see the one GP in the practice who is a woman and when I went over everything she quite patronisingly said “I’m sure there has been some misunderstanding”. Well of course she would say that - the other GP is her flaming husband! (I actually don’t think they should both be allowed to work at the same surgery, I just feel it is a conflict of interest).

The Consultant Oncologist I was under was so angry that when I attended my next appointment she said to me “I have overruled your GP and have sent a letter off to get you in for counselling ASAP”. She also told us they get problems like this with GPs all the time and my local Maggies Centre confirmed they get very distressed patients turning up who have had GP problems.

The psychologist had moved here from another health authority where she said patients were referred for counselling by GPs as standard, but she had found since moving here that GPs were not happy to do this. I only go to my surgery now if I feel it’s absolutely necessary as I hate the way they talk to me. I couldn’t get over it as one of the receptionists was diagnosed with BC about 9 months after me and you would think they would understand. Mind you, they didn’t even know anything about Herceptin even although it was in the news all the time when I was diagnosed - I was asked if it was a tablet I took every day!

The whole episode convinced me they were not reading the letters they were getting from the Consultants, but merely filing them.

Hello

I was listening to Womans Hour this morning. Here’s a link to a relevant article they ran entitled ‘The lack of focus on survivors of the disease’

bbc.co.uk/radio4/womanshour/03/2010_02_mon.shtml

Hope it works. Otherwise just look up BBC radio 4 womans hour…

I remember the BCN telling me just after my biopsy that if it turned out to be cancer, it would take up a year of my life, which I found really shocking, knowing nothing about BC at the time. I’m now 7 months post diagnosis have had 2 lots of surgery, but am very lucky not to be facing chemo or rads. Just the joys of Arimidex (not started yet) which another current thread is warning me about.

My surgeon told me if it was chemo and rads it would be at least 9 months. At that point they didn’t know it was Her2+, therefore needing Herceptin as well.

I thought the Woman’s Hour item on Monday was really relevant and reflected much of how I felt after being ‘cast adrift’ this time last year.
I had a fairly typical pattern of treatment I think. Previous robust good health and no experience of hospital at all (apart from 4 pregnancies).
Then the shock diagnosis followed by a really intensive perid of hospital visits, (in my case, involving long journeys). WLE & SNB then further surgery for total clearance of lymph nodes, then chemo and rads. plus 2 short & unpleasant admissions to hospital during chemo, then after the 15th day of rads, absolutely nothing else for 8 months until I had my first follow-up appointment. I know this is similar to what many people experience. One should just feel relief that it is 'all ‘over’ but somehow it just doesn’t feel like that- especially if you don’t have an ongoing relationship with a BC nurse.
I think this is an under-recognised aspect of cancer care- and one which I shall raise with my oncologist when I next see him- in August!