Any "Big C" experts in?
Discussion
My old man (nearly 70, heavy-ish drinker but otherwise good health) has just told me he has a tumour on one of his kidneys.
Just like I would, I expect he is going to bottle things up and be economical with the truth (i.e. how bad it is). He only told me by chance because going for the op is going to stop him running an errand for me - again, just the kind of thing I would do...
The tumour was discovered by chance - a scan to try and pinpoint the cause of a recurring virus - and he is having it taken out by keyhole later this week.
He says that he won't get any results / analysis of the tumour for 3 - 4 weeks following surgery.
So, over to the experts of PH:
- what should I be asking him, and his doctors?
- 3 weeks seems like a long time to wait for an analysis, is there anything I do to speed this up (He's NHS, but within reason money is not an issue)
Cheers
UTI
Just like I would, I expect he is going to bottle things up and be economical with the truth (i.e. how bad it is). He only told me by chance because going for the op is going to stop him running an errand for me - again, just the kind of thing I would do...
The tumour was discovered by chance - a scan to try and pinpoint the cause of a recurring virus - and he is having it taken out by keyhole later this week.
He says that he won't get any results / analysis of the tumour for 3 - 4 weeks following surgery.
So, over to the experts of PH:
- what should I be asking him, and his doctors?
- 3 weeks seems like a long time to wait for an analysis, is there anything I do to speed this up (He's NHS, but within reason money is not an issue)
Cheers
UTI
Not an expert mate but its something i know a little about having lost both my parents with as you say the big C.I know from experience that through the nhs it can be quite a length of time from diagnosis to treatment which is critical in this disease,however not blaming the nhs for this its just there demand and which i believe they are improving facilities in all cities in the uk.Dont know how much quicker private is and from what i am told its the same surgeons consultants that work for the nhs and the private hospitals it may have changed but was a few years ago in my area.
ps if you want to chat about things mate pm me.
ps if you want to chat about things mate pm me.
many sides to this apart from the medical side which I am sure someone will be along to deal with.
how does he cope - what is his normal 'coping mechanism'. Does he show if he is worried? does he bottle things up?
Any plans for radio or chemo? what are his thoughts? He has choices, if he needs time to think then he is under no pressure to follow anyone elses advice/agendas/beliefs. He needs to do what is right for him, in his way and in his time frame. Is he the kind of person who will leave it in the hands of the medics or does he want to take back the control of his recovery himself?
How does he feel about the surgery? is he frightened? IS he OK with it?
Afterwards - what plans are in place for his recovery strategy? Does he need help, support etc?
.. Ask him what he wants. But don't be surprised if he says he is OK and will be fine. Don't take it as rejection - it may be just the way he copes. He may be perfectly fine, but take your cues from him and his actions.
Best of luck
how does he cope - what is his normal 'coping mechanism'. Does he show if he is worried? does he bottle things up?
Any plans for radio or chemo? what are his thoughts? He has choices, if he needs time to think then he is under no pressure to follow anyone elses advice/agendas/beliefs. He needs to do what is right for him, in his way and in his time frame. Is he the kind of person who will leave it in the hands of the medics or does he want to take back the control of his recovery himself?
How does he feel about the surgery? is he frightened? IS he OK with it?
Afterwards - what plans are in place for his recovery strategy? Does he need help, support etc?
.. Ask him what he wants. But don't be surprised if he says he is OK and will be fine. Don't take it as rejection - it may be just the way he copes. He may be perfectly fine, but take your cues from him and his actions.
Best of luck
I'm no expert, but having been through cancer treatment recently, I do know a bit about the process.
Getting biopsies done on something like a tumour, does take time. There aren't that many people who do it and it can be complex, especially if it's coming out by key hole and gets a bit mashed in the process.
3 weeks is normal, the results might be back quicker, but the Doc's have no way of knowing that, so 3 weeks will be to ensure that when you do go, they actually have something to tell you. A few days won't make the blindest bit of difference to the disease, though the waiting is agonising for you all.
The things to ask the Docs are, what are the treatment options, potential side effects of each one, what they suggest (probably the best option to go for, they do know a bit about what they are doing!), what is his prognosis and what outcome are they going for, Curative or Palliative?Make sure someone goes with him, as if it is bad news, then the Doc will be talking, but your Dad won't be listening. A second pair of ears is very, very useful.
Good luck to you all.
Getting biopsies done on something like a tumour, does take time. There aren't that many people who do it and it can be complex, especially if it's coming out by key hole and gets a bit mashed in the process.
3 weeks is normal, the results might be back quicker, but the Doc's have no way of knowing that, so 3 weeks will be to ensure that when you do go, they actually have something to tell you. A few days won't make the blindest bit of difference to the disease, though the waiting is agonising for you all.
The things to ask the Docs are, what are the treatment options, potential side effects of each one, what they suggest (probably the best option to go for, they do know a bit about what they are doing!), what is his prognosis and what outcome are they going for, Curative or Palliative?Make sure someone goes with him, as if it is bad news, then the Doc will be talking, but your Dad won't be listening. A second pair of ears is very, very useful.
Good luck to you all.
Edited by IforB on Tuesday 24th March 00:33
Is the tumor the primary cancer do you know? I mean did they find anymore anywhere else? What kind of scan has he had? Is it a CT scan? In my experience if its the primary cancer and they have caught it early and can remove it he has a very good chance. He needs the op ASAP and then almost certainly radiotherapy.
Sorry to hear your in this possition. It all way to familiar to us(my family) right now. Those anyway are the questions you need to ask.
Sorry to hear your in this possition. It all way to familiar to us(my family) right now. Those anyway are the questions you need to ask.
UTI - I really feel for you.
Having had it and survived and nursing my mom through bone cancer at the moment (she's 67) I'm going to tell you to be positive, difficult I know at a time like this, but it will help. The other thing you must do is be with him. IforB is right, you don't hear what the doctor is telling you and you don't remember what's been said once you leave the clinic - I never let my mom go to an appointment on her own.
The other posts on her have covered most of the questions to ask initially, but as time goes on write it down. Write down the least little thing that comes in to your head, because when it comes round to seeing the doctor again, you won't remember.
Macmillans are the best and will help you through it. Contact them for support (I'm sure you've already looked at this site macmillan.org.uk) and if you need more help get in touch with your district nurse through your GP. You may be surprised at what help they can give you. My mom is visited every week by them and they have provided lots of aids - chairs, beds etc very quickly.
Sounds like your dad's tumour was found in a similar way to my moms. She had an infection in her bladder for a long time and it was only by chance that they found it. Too late though as it's progressed in to her bones. If your dad won't talk to you, don't force him, my mom says everything is alright and she can cope, doesn't need any help ... not true, everyone needs help with this.
The timings on results are about right and if he needs chemo/radio then that should start very quickly.
Will you let us know how your getting on? If you want to chat, let of steam or some practical advice for yourself, email me.
Good luck and I'll be thinking about you all.
Having had it and survived and nursing my mom through bone cancer at the moment (she's 67) I'm going to tell you to be positive, difficult I know at a time like this, but it will help. The other thing you must do is be with him. IforB is right, you don't hear what the doctor is telling you and you don't remember what's been said once you leave the clinic - I never let my mom go to an appointment on her own.
The other posts on her have covered most of the questions to ask initially, but as time goes on write it down. Write down the least little thing that comes in to your head, because when it comes round to seeing the doctor again, you won't remember.
Macmillans are the best and will help you through it. Contact them for support (I'm sure you've already looked at this site macmillan.org.uk) and if you need more help get in touch with your district nurse through your GP. You may be surprised at what help they can give you. My mom is visited every week by them and they have provided lots of aids - chairs, beds etc very quickly.
Sounds like your dad's tumour was found in a similar way to my moms. She had an infection in her bladder for a long time and it was only by chance that they found it. Too late though as it's progressed in to her bones. If your dad won't talk to you, don't force him, my mom says everything is alright and she can cope, doesn't need any help ... not true, everyone needs help with this.
The timings on results are about right and if he needs chemo/radio then that should start very quickly.
Will you let us know how your getting on? If you want to chat, let of steam or some practical advice for yourself, email me.
Good luck and I'll be thinking about you all.
Well, I've been battling with the Big C for three years now. No need to get too worked up about little delays. The tumour probably has been there for some time and often is growing very slowly. I was told that mine was probably there for a good five years before I noticed any symptoms. A week or two isn't going to make a difference with that sort of thing. Believe me, I know the feeling. Just want to get the thing out immediately!
Good luck!
Good luck!
Sorry to hijack the OP......
My dad had a tumor removed from his jaw back in October...bone graft from leg to jaw, removal of lymph node in side of neck and general cutting about and the operation was a success.
Now, he is doing better according to the surgeon's and doctors but he is very depressed. He says he is so lethargic it is upsetting him and getting him down....
I have said that he is still going thorugh the healing process and due to the fact he is only just getting off the protein shakes and starting to eat 'food', its probably a lack of nutrients thats making him feel down.....
I am getting worried though as he seems to be getting worse rather than better. The MacMillian nurses are great but just get the doctor to issue anti depressants. These make his lethargy worse....
He is 65 and prior to the operation was a fit and health bloke who was always on the go. He has obviously lost a fair bit of weight but his metal state is starting to concern me.
All the medical people he sees say he is doing well and as expected but he doesnt share their optimism. Apart from seeking counselling (already tried through MacMillian) anyone had any experience or advice....
Thanks
My dad had a tumor removed from his jaw back in October...bone graft from leg to jaw, removal of lymph node in side of neck and general cutting about and the operation was a success.
Now, he is doing better according to the surgeon's and doctors but he is very depressed. He says he is so lethargic it is upsetting him and getting him down....
I have said that he is still going thorugh the healing process and due to the fact he is only just getting off the protein shakes and starting to eat 'food', its probably a lack of nutrients thats making him feel down.....
I am getting worried though as he seems to be getting worse rather than better. The MacMillian nurses are great but just get the doctor to issue anti depressants. These make his lethargy worse....
He is 65 and prior to the operation was a fit and health bloke who was always on the go. He has obviously lost a fair bit of weight but his metal state is starting to concern me.
All the medical people he sees say he is doing well and as expected but he doesnt share their optimism. Apart from seeking counselling (already tried through MacMillian) anyone had any experience or advice....
Thanks
Hi,
Have they excluded as best as possible any physical cause for his decline? eg checked for tumour spread (hopefully not) and anaemia etc (a raft of blood tests should check this out).If he is depressed then some antidepressants are more sedating than others.Would be worth checking with his Doctor.HTH.
Have they excluded as best as possible any physical cause for his decline? eg checked for tumour spread (hopefully not) and anaemia etc (a raft of blood tests should check this out).If he is depressed then some antidepressants are more sedating than others.Would be worth checking with his Doctor.HTH.
Huw,
well he has had some pain across his shoulders which worried him (my father inlaw has had lung cancer then 3 years later a pain in his shoulders resulted in a tumor on his spine..yeah great 3 years full of cancer in my family ...
). He had an X ray and the doctors told him he had osteo arthritis !!!!
I have told him to push for an MRI scan as my father-in-law had 6 Xrays after his lung cancer and none showed up the spine tumor. But at £1300 a pop, the NHS are reluctant to do one...
He did go up to the Big C building at the local Hospital today and found it helpful.....got talking to a 42 year old bloke who had the same op three weeks ago including a skin graft from his leg into his mouth (complete with hair !!!!wtf) so felt better that he could speak to another 'sufferer'.
The anti-depressants he was prescribed have been changed to see if the drowsiness was caused by them....fingers crossed this could have an effect to the positive.
Not used to seeing dad depressed and down and its worrying....thanks.
kev
well he has had some pain across his shoulders which worried him (my father inlaw has had lung cancer then 3 years later a pain in his shoulders resulted in a tumor on his spine..yeah great 3 years full of cancer in my family ...
). He had an X ray and the doctors told him he had osteo arthritis !!!!I have told him to push for an MRI scan as my father-in-law had 6 Xrays after his lung cancer and none showed up the spine tumor. But at £1300 a pop, the NHS are reluctant to do one...
He did go up to the Big C building at the local Hospital today and found it helpful.....got talking to a 42 year old bloke who had the same op three weeks ago including a skin graft from his leg into his mouth (complete with hair !!!!wtf) so felt better that he could speak to another 'sufferer'.
The anti-depressants he was prescribed have been changed to see if the drowsiness was caused by them....fingers crossed this could have an effect to the positive.
Not used to seeing dad depressed and down and its worrying....thanks.
kev
KevF said:
Huw,
well he has had some pain across his shoulders which worried him (my father inlaw has had lung cancer then 3 years later a pain in his shoulders resulted in a tumor on his spine..yeah great 3 years full of cancer in my family ... ). He had an X ray and the doctors told him he had osteo arthritis !!!!
I have told him to push for an MRI scan as my father-in-law had 6 Xrays after his lung cancer and none showed up the spine tumor. But at £1300 a pop, the NHS are reluctant to do one...
He did go up to the Big C building at the local Hospital today and found it helpful.....got talking to a 42 year old bloke who had the same op three weeks ago including a skin graft from his leg into his mouth (complete with hair !!!!wtf) so felt better that he could speak to another 'sufferer'.
The anti-depressants he was prescribed have been changed to see if the drowsiness was caused by them....fingers crossed this could have an effect to the positive.
Not used to seeing dad depressed and down and its worrying....thanks.
kev
It made me more than a little sad to read your post. Depression in Cancer has always struck me as being one of the hardest parts of this disease. It can be tough to find the energy to work through depression when there is so much else going on in his life.well he has had some pain across his shoulders which worried him (my father inlaw has had lung cancer then 3 years later a pain in his shoulders resulted in a tumor on his spine..yeah great 3 years full of cancer in my family ...
). He had an X ray and the doctors told him he had osteo arthritis !!!!I have told him to push for an MRI scan as my father-in-law had 6 Xrays after his lung cancer and none showed up the spine tumor. But at £1300 a pop, the NHS are reluctant to do one...
He did go up to the Big C building at the local Hospital today and found it helpful.....got talking to a 42 year old bloke who had the same op three weeks ago including a skin graft from his leg into his mouth (complete with hair !!!!wtf) so felt better that he could speak to another 'sufferer'.
The anti-depressants he was prescribed have been changed to see if the drowsiness was caused by them....fingers crossed this could have an effect to the positive.
Not used to seeing dad depressed and down and its worrying....thanks.
kev
Has your dad thought about joining a support group or getting any other support or help? Depression in Cancer is very common - something like 55% + of Cancer patients will suffer from some form of depression.
It might be that your dad needs to do something more proactive than taking pills and waiting for them to start working - many do. Perhaps talk to Macmillan or other local services - there are lots of options and choices surrounding the many aspects of Cancer care and different peoples use different techniques and processes that help them cope with and live through Cancer.
(Also deal with your own "Stuff" surrounding Cancer. Cancer takes no prisoners, in terms of the emotional havoc and turmoil it causes around friends, family and carers)
I wish your family all the best.
Thanks for the support.
I can remember when my father-in-law was diagnosed with lung cancer...his first comment to the doctor was, can it be removed. Once the surgeon had removed the ofending lung, he mentioned my father-in-laws state of mind and said it was extremely important to try and remain positive as the operation had been successful. He went on to mention a 27 year old patient who had been diagnosed with testicular cancer. He was operated on successfully with the prognosis that a full recovery could be made. He passed away 2 months later...the surgeon said the only reason they could find medically was that he had become majorly depressed on having cancer and had just given up...
Now whether this was just a 'keep looking positive' pep talk from the surgeon or a bone fide story, I dont know but my worry is that the depression and worry is what is going to affect him to the extent his health will decline terminally..
We'll see if these new anti-depression have a positive effect and I will try to persuade him to carry on seeking help from the Big C and MacMillian but I cant force him....
To have both my father and father in law going through serious cancer in the last year is hard especially as my father in law has been told his is terminal too........
I can remember when my father-in-law was diagnosed with lung cancer...his first comment to the doctor was, can it be removed. Once the surgeon had removed the ofending lung, he mentioned my father-in-laws state of mind and said it was extremely important to try and remain positive as the operation had been successful. He went on to mention a 27 year old patient who had been diagnosed with testicular cancer. He was operated on successfully with the prognosis that a full recovery could be made. He passed away 2 months later...the surgeon said the only reason they could find medically was that he had become majorly depressed on having cancer and had just given up...
Now whether this was just a 'keep looking positive' pep talk from the surgeon or a bone fide story, I dont know but my worry is that the depression and worry is what is going to affect him to the extent his health will decline terminally..
We'll see if these new anti-depression have a positive effect and I will try to persuade him to carry on seeking help from the Big C and MacMillian but I cant force him....
To have both my father and father in law going through serious cancer in the last year is hard especially as my father in law has been told his is terminal too........
KevF said:
Thanks for the support.
I can remember when my father-in-law was diagnosed with lung cancer...his first comment to the doctor was, can it be removed. Once the surgeon had removed the ofending lung, he mentioned my father-in-laws state of mind and said it was extremely important to try and remain positive as the operation had been successful. He went on to mention a 27 year old patient who had been diagnosed with testicular cancer. He was operated on successfully with the prognosis that a full recovery could be made. He passed away 2 months later...the surgeon said the only reason they could find medically was that he had become majorly depressed on having cancer and had just given up...
Now whether this was just a 'keep looking positive' pep talk from the surgeon or a bone fide story, I dont know but my worry is that the depression and worry is what is going to affect him to the extent his health will decline terminally..
We'll see if these new anti-depression have a positive effect and I will try to persuade him to carry on seeking help from the Big C and MacMillian but I cant force him....
To have both my father and father in law going through serious cancer in the last year is hard especially as my father in law has been told his is terminal too........
Mental attitude is crucial when dealing with Cancer. It should never be underestimated - the power of the mind to change perception and to influence outcomes. Positive thinking is more than "thinking positively". It often involves reframing Cancer, what it means to the person with Cancer, changing beliefs around how you "see" cancer, how you deal with the impact that it has on your life, thoughts and beliefs around what it means, loss of life, loss of future - the list is almost endless. I can remember when my father-in-law was diagnosed with lung cancer...his first comment to the doctor was, can it be removed. Once the surgeon had removed the ofending lung, he mentioned my father-in-laws state of mind and said it was extremely important to try and remain positive as the operation had been successful. He went on to mention a 27 year old patient who had been diagnosed with testicular cancer. He was operated on successfully with the prognosis that a full recovery could be made. He passed away 2 months later...the surgeon said the only reason they could find medically was that he had become majorly depressed on having cancer and had just given up...
Now whether this was just a 'keep looking positive' pep talk from the surgeon or a bone fide story, I dont know but my worry is that the depression and worry is what is going to affect him to the extent his health will decline terminally..
We'll see if these new anti-depression have a positive effect and I will try to persuade him to carry on seeking help from the Big C and MacMillian but I cant force him....
To have both my father and father in law going through serious cancer in the last year is hard especially as my father in law has been told his is terminal too........
It is issues like this that often need to be addressed for someone with Cancer to feel "positive". And often it means a process of acceptance and understanding and coming to terms with much that is otherwise unacceptable and undesirable. Feeling positive is not about burying stuff, which is precisely that - dismissing or hiding how you feel and supressing the negative thoughts, feelings and emotions.
I hope this helps. It does not matter how long you have to live, it is the quality of your life that is important. I wish your dad every success and hope he finds the answers he needs to move his life on.
What Steve says is exactly how it was for me too. When you are the one ill, you just go into coping mode and get on with it. I honestly can say that me having cancer was far harder on my family and friends than it was on me. They all think I'm being magnanimous when I say that, but it just isn't true.
I'm a complete c**t when I have a cold or the flu, but with cancer I was all sweetness and light!
All the best to him.
I'm a complete c**t when I have a cold or the flu, but with cancer I was all sweetness and light!
All the best to him.
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