Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

left kidney cancer and more...

gayle
Posted by

HI help Yes in sept 2007 I had my left kidney removed due to cancer and now its in my left lung (only small) and may be in my uternus. I am still in a lot of pain 14 weeks after the operation . My main problem is my only young sister , who i found out 3 days whilst talking to my husband and she thinks I enjoy being ill and having cancer. I feel so let down. I dont know iif to approach her or just leave it. she drives me mad, except me to do everything and I can and she wont except that. help me 

Marionx2
Posted by
Hi,
I was heart broken to read your cry for help. It may be that your sister is in denial of your illness. My mum has secondary kidney cancer and I have found that the Macmillan nurses are wonderful in advising you and your family how to deal with all manner of cancer related problems. If you are not in contact with a macmillan nurse then ask your GP to send them a referral. If you are in contact with them then put your faith in them and ask them for help. I am sure they will help you, your husband and your sister.
God bless you.
khammon
Posted by
It sounds like your sister is angry. Maybe even at you for having Cancer. This isn't rational but feelings often aren't. She is probably very worried that she will lose you and doesn't know how to handle the feelings. My suggestion is to give her some space and let her know you love her.
Kathy
janeth
Posted by
Although we talk about cancer more now than in the past, it still seems really hard to sort out feelings around the subject. Ive found it really difficult to tell anyone how I feel and what is going on for me. My family have also found it hard to express how they feel. In the end the macmillan nurse referred me to the counselling service of our local hospital and it's been fantastic to talk with someone who can understand and can help my family and me deal with all the horrible emotional effects of this illness. I can be really honest with her and not feel that I am being selfish, stupid or going mad.

Try and get some help so that you don't have to do it all yourself. Even the Government have suddenly woken up to the emotional effects of cancer on individuals and families!! it was on the news on Wednesday or thursday I think on Radio 4!
DavidP
Posted by
hi all my names david and im from norfolk,62yrs old.i had my left kidney out in january of this year but the cancer has gone to my rightlung.i saw my oncologist last week and was told because the cancer on my lung came from my kidney they cannot give me any treatment which i find hard to believe.the only thing that i was offered was interferon when i feel really bad.can anyone with a similar condition to mine tell me if it is possible to have treatment ie chemo radiotherapy,many thanks David
JulieWW
Posted by
Dear David

Are you living in the UK? From what your onc said it sounds like you must be in Timbuctoo or somewhere.

OK, I am not an onc, BUT, I cannot possibly be the only person here who will immediately tell you that metastatic kidney cancer (ie, that has spread beyond the kidney to other areas, such as lungs and lymph nodes - cancers tend to go their first from their primary tumour as they are carried by the blood - and bones and other organs) can INDEED be treated!

Interferon is about 30 years old now - it works, so I understand, at high, hard-to-bear dosages for some few people VERY WELL, but right now, the standard therapy for KC is Sutent. HOWEVER, please, please do check what exactly kind of KC you have - the most common is clear cell, but there are at least two other rarer types ,and these, indeed, may be treated with different drugs, or, indeed, harder to treat.

Sutent is a powerful drug and if you go to the KCUK forum (The Kidney Cancer UK forum), or, indeed, probably here on Cancer Back up information on cancers, and certainly on the Cancer Research charity website, there is good authoratitive informatoin on Sutent, plus the several other drugs that specifically are used for advance KC that has spread.

On absolutely no account must you accept what your current onc is telling you without further questioning him as to why he thinks only interferon is available for you. One reason he may be telling you there is no further treatment is that he may not be a KC specialist. One thing I have learn in this very hard period since my husband's diagnosis in May is that you MUST have an oncologist who specialises in kidney cancer - he must be an urological cancer specailist. KC is not like other cancers, it has unique aspects, especially in respect of treatment - for example, the normal kind of chemotherapy doesn't work well - and this is not something that an 'ordinary' oncologist may fully appreciate. There are 200 different types of cancers, so it's understandable that each one needs its own specialist.

If you look at the KCUK site, I am sure you will find it very helpful for information, and very heartening for excellent personal tales of people who have advanced, metastatic KC, and are getting good, effective treatemtn. None of us know how long the treatment can keep us going - but whatever 'extra time' we get, boy, it's worth it.

Type in KCUK to Google, and it will find you the site. Also look up the US site Cancer Compass, which has huge amounts of information as well. And please, ask your oncologist why he is not prescribing Sutent for you - he may have his reasons, so please do ask.

One, dreadful, shameful reason is that at the moment, it I think almost inevitably requires paying for, and it is VERY expensive - I mean, thousands per month, so I understand (we are probably about to find this out for ourselves!!!!). However, even if this is beyond your means, it may be possible to get the drug company itself to help fund it (this happens in the USA apparently, though I'm not sure if it happens here), plus charities and so on. There is, as you will appreciate, VERY strong lobbying going on by KC doctors and organisations like KCUK to force the dreaded NICE to do something useful with itself and SAVE lives, instead of having the NHS waste its precious money on the usual rubbish it so often wastes money on (expensive managers, hospital closures, free veruka treatment etc etc).

All the very, very best to you, but you must ask you oncologist about Sutent and other drugs such as Avastin and Torisel - though, as I say, he may have other medical (or even financial) reasons for thinking them unsuitable. BUT GET HIM TO SAY WHY!!!!!!!

It's your life, not his.

Take care, Julie

PS - is it possible to have another person with you when you see the oncologist, and write down all the questions you want to ask him, and write down the answers as well. It's such a distressing time, that the mind gets a blit 'blitzed' when you are sitting opposite the medicos, I think, so writing things down and checking you have asked all the questions you need answers to, can be helpful.
DavidP
Posted by
dear julie many thanks for the information,i have found it very helpfull,it has given me great hope particulary when my oncologist said there was no treatment.i will keep in touch and let you know how things go.once again thank you for the information and advice god bless you david
Pennyx2
Posted by
Glad you found the kidney forum, and it looks like Julie has come up with the goods! The very best of luck xxx Penny
JulieWW
Posted by
Dear David

I do, do hope I haven't gone overboard! Obviously, each patient has their own specific situation, and no one here - especially someone so new to all this as me - can possibly say anything other than very loose things. I know, personally, I'm in 'crusading mode' - I can feel it in me, being very emotional, part of my reaction to our own family situation whre I want to rush around and help everyone in sight!!! But though that might be 'nice' it could also be very dangerous! I really, really musn't come here to tell people things that could be quite, quite different from the way it is for them, in their particular circumstances.

So I do, do hope that what I said you must, please, bear most importantly in mind may not be appropriate for your circumstnaces. As I said, your doctor may have very, very good reasons for prescribing Interferon - plus, one of the things again I think I've picked up in my brief journey into this world, is that just because IF is a 'traditional' treatment, doesn't mean it isn't effective either! It could be the best for you, and that's why he's put you on it.

But I would, I stand by this, say to get your oncologist to spell out the options, and the reasons for his decision. There most certainly IS a lot of new stuff coming along, that is for sure, but only the docs know if its best for each of their patients on an individual case basis.

All the very, very best to you, and I do hope I haven't waded in tactlessly or dangerously. From now on I'll be a lot more circumspect, and a lot less 'crusading' which may well do more harm than good if it's done in ignorance.

But I would still definitely say take a look at the KCUK site for detailed information on all aspects of KC and current treatments, as there are some very experienced people there (unlike me!)

Again, apologies for 'storming in' the way I did, which might well have been very irresponsible of me, in that nothing I said may actually apply in your own particular case.

But whatever the situation, it can't be a bad idea to ask the questions of your onc, why he's chosen that particular treatment for you, and see what he says. (He might also be worried about alarming you - it must be a very difficult judgement for any doctor to make, deciding whether a particular patient will be upset at knowing upsetting things, or upset at not knowing them! I think the doctors have to feel their way with us as well, which must be very tricky for them, I appreciate.)

Take care, Julie.
DavidP
Posted by
hi penny yes julie has come up with some real good info.thanks for all your help xxx david
DavidP
Posted by
hi julie ihave listened to all that you have said to me and it does make sense.particular the part about my oncologist saying there is nothing they can treat me with.i know everyones case is different but i agree with what u have said about there is some kind of treatment for everyone.thanks again david
Mrs.Monster
Posted by
Hi. My fella, David, found out that he had cancer of the right kidney at the end of May. He had to have an embolisation as removing it would probably have killed him. I am having trouble coping but we do have a good Macmillan nurse and my Mum works in a palliative care unit so can get me any information I want. I am not finding it easy to cope and he just seems to have given up on life.
Mrs.Monster
Posted by

I am having trouble coping with my boyfriend's kidney cancer, probably because there is no emotional distance from the situation. My Mum works in a palliative care unit (Duchess of Kent House in Reading) so my sister and I have always known a lot more about terminal illnesses than I sometimes feel is healthy to know. I have decided to ask my GP for a counselling referral as I need to talk to someone before I crack up. What is worse is that my once good blood glucose control is now all over the place because of the emotional stress.
JulieWW
Posted by
Dear Mrs M (and I'm sure that's not an accurate moniker for you!)

You are under tremendous stress and not surprising. I think it has to be that a DX such as your boyfriend's at such a young age - I take it he is in his thirties or so like you? - is a much harder-hitter than when you have reached middle or old age, when you feel that, whatever happens, you've had a pretty good crack at life.

So I think your stress levels just have to be higher. On top of that you are coping with a life-threatening illness yourself, diabetes, however manageable these days ,and that has been an on-going stress for you since your own DX.

In a way, being a caregiver is an 'impossible' task. It's impossible because, bottom line, it's not us who has the cancer, it's someone we love, and there is NOTHING we can do about it. We can't take the cancer away from them. Plus, we have, inevitably that 'suvivor guilt' which makes us feel so bad that we are OK in comparison, and yet we also are glad we're OK, and then we feel bad and selfish and mean for being glad we're OK and someone we love isn't.

And maybe the patient themselves mirrors those tangled emotions in reverse. They would never wish their cancer on you, and yet at the same time they may be a resentment in them that says 'why is it happening to me, not you, or someone else - anyone else.....!'

I'm sorry to hear David is in not the best of health at the moment, in terms of pain and symptoms. I hope that something can be done to improve his level of 'non-cancer health' if you see what I mean! Because I think that if he started to feel less ill - if that is possible - then he would be able to feel more optimistic and less despairing perhaps??

I would definitely agree that you need to find some kind of emotional outlet, and some kind of counselling that is for YOU, as you say. This is not being selfish and taking anything away from David. It is recognising that your role is to be his caregiver, and if you are under par you won't be such a good one. So looking after YOURSELF is ALSO looking after HIM.

I agree that too much familiarity with end-stage, as your Mum has - fantastic work though people like her do, and thank goodness there are those brave and resolute enough to do it! - can perhaps be counter-productive at this time. You are seeing 'the future' through your mother's eyes, and it may be scaring you more than it should. Your husband is NOT at end-stage, and although none of us with this disease know when and as that may arrive, it isn't now. Don't put on those dark-tinted glasses until it becomes, if it does, absolutely necessary.

I hope that does not sound naively or blindly optimisitc, but it is what I tell myself, day after day. My husband is still here, still breathing, and he isn't in a mortuary following a car crash (and I do apologise for those reading this for whom that particular tragedy or similar may have been all too real). There ARE worse things than a diagnosis of metastatic cancer, though it can be perilously hard to think that way.

Can you get to grips yet with what his ongoing treatment is likely to be? He has been spared the physical trauma of surgery, and, even if that decision was taken because he was felt too weak for an operation, still, it is one less thing for his body to have to cope with right now.

Do you know what treatment his oncologist (and please ensure you have a KIDNEY cancer oncologist - KC is different, and you do need a specialist urologist oncologist to be treating your partner!) is proposing? Will he watch and wait on the mets, will he put David on Interferon, or possibly one of the newer drugs (though there are, as I'm sure you know, severe funding issues on those!)? If you know what the immediate future is likely to hold, that may help 'nail down' all the terrible fears and uncertainties and rolling emotions that are so stormy in you (quite understandably of course.)

All the very best to you both. This is a very good site for 'offloading' as we are all, in one capacity or another, in the same boat. There will always be someone here who can nod their head and say 'yup, that's how it was for me, too, and here's how I tackled it'.

You are definitely not alone.

Take care, Julie

PS - There's only one 'monster' in the house, and it's cancer - not the patients or the caregivers!!!!
JulieWW
Posted by

Dear David

Not sure if you're still around on this site, but I just spotted someone on the Macmillan Share forum

http://share.macmillan.org.uk/Share/Forums/default.aspx?topic=1004217&page=1

who is on Interferon, and doing very well on it. His mets and his primary are shrinking!

Also, if you are in Norfolk, then do go and check out all the posts from Steffy and Tomdog in their gigantic battle to get Norfolk PCT to put Tomdog on sorafenib for his liver cancer. Sorafenib is one of the new kidney cancer drugs as well (I think it sells as Nexavar?)

All the very best to you - Julie.