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31 Replies Last post: 21-Feb-2010 17:08 by Ronan 1 2 3 Previous Next

Action when faced with high-risk of return?

21-Oct-2009 20:02

Ronan 12 posts since
21-Oct-2009

I am new to this board. (And to any board.) So forgive me if this question seems naive.

A close friend of mine had a kidney removed recently. The growth was Stage 3b, Grade 4. The lymph was clear and there was no sign of metastasis. However, because of the aggressive grade, it is probable that the cancer will return. The statistic quoted to him was 80% over 15 years, with the danger front-loaded to the next two years. If it does return, he has been told, then it will be in his bloodstream and will not be curable. His consultant advised him that, if the cancer comes back, he will probably only survive for 18-24 months with treatment.He will be given CT scans every three months- of the lungs and torso (it is most likely to come back to the lungs and the liver). But apart from this monitoring, he is treated as if he is cancer free.

My question - is there nothing preventative or prophylactic he (or his doctors) can do to minimise this dismal chance of recurrence? It is hard for him and his loved ones just to wait for the the cancer to come back. Before his operation, the consultant suggested he could go forward for a drug trial designed to prevent the cancer returning. But it turns out that, because his is so aggressive, that he is not eligible for it.

I imagine that waiting, and the feeling of helplessness, is part of the cancer experience familiar to many users of this board. But if there is any specific advice about action that can be taken, including looking for trials in Britain and abroad, I would be grateful to hear them. This includes suggestions about meditation and anti-cancer diet - both of which are new to him and me.

Many thanks.

cks1988 14 posts since
31-Oct-2009

1. 31-Oct-2009 14:28

in response to: Ronan

Re: Action when faced with high-risk of return?

Hi Ronan,

Studies show that certain specific dietary fators having highest impact on reduction of cancer risk or to prevent the cancer reattacking.Intake of vegetables and fruits are essential. Additonal foods like whole grains, dietary fiber, certain micronutrients and certain types of fat also help in decreasing cancer risk. Just avoid from taking alcohol, cigarettes, salting and pckling foods, and even high-temperature cooking meats.You may have more details information from American Institute Cancer Research which is an organization that compile specific dietary recommendations for individuals to reduce cancer risk.

Hope this can help you!

Regards,

Kok Siong@Cytogenetics and Cancer Research

Ronan 12 posts since
21-Oct-2009

2. 19-Nov-2009 07:44

in response to: cks1988

Re: Action when faced with high-risk of return?

Thanks very much. I will pass this on to my friend.

tigger 296 posts since
07-Sep-2008

3. 19-Nov-2009 18:01

in response to: cks1988

Re: Action when faced with high-risk of return?

Hi CKS1988

Isn't that just a description of a healthy diet ?

We all should be following that sort of eating regardless of already having cancer in the past or not.

Eating healthily cannot do any harm and can only help general health but - in my opinion- if you have been given a bad prognosis then putting too much store into "an against the odds cure" based on what you are eating may give false hope. It gives your body the best chance but cannot cure the incurable. This sort of healthy eating advice should already have been discussed with the oncologist / multi discipline team.

My heart goes out to those who have been given a bad prognosis and hope continued research will make further progress into beating this horrible disease.

Best wishes Tigger

Ronan 12 posts since
21-Oct-2009

4. 19-Nov-2009 18:16

in response to: tigger

Re: Action when faced with high-risk of return?

Thank you Tigger and CKS1988,

What is frustrating is not being able to do anything at all preventative. I'm sure this feeling must be shared by many on this board. He is off the oncology dept's books, until the cancer returns. Knowing that these cells are still in his body but that nothing can be done until they find somewhere to latch and form a tumour is terribly disempowering and dispiriting, for him and for his loved ones. I suppose I was thinking there might be some preventative medication, even non-traditional, that posters here might have experienced or could recommend. I'm not sure why the medication used to treat tumours cannot be used against the microscopic cells too, but I'm not a specialist.

He had his first three month scan a couple of weeks ago which, mercifully, was clear. But that 80% chance of return remains a grim reality that prevents him from making plans for the future.

Ronan

tigger 296 posts since
07-Sep-2008

5. 20-Nov-2009 10:56

in response to: Ronan

Re: Action when faced with high-risk of return?

Hi Ronan,

It is hard to try and plan ahead especially when the primary cancer has been aggressive. My reoccurrence risk was a lot lower and virtually disappears after 5 years but my risk was also front loaded to the first 2 years - initially I found it impossible to plan more than a month in advance and booking a holiday or something similar was inconceivable.

I have just had my 2 1/2 year check up and as the risk decreases I am a lot more confident in making plans for the longer term. In the early days I had to force myself to do "stuff" but I was glad I did otherwise you just end up sitting and waiting for it to happen and missing opportunities.

As far a treatment is concerned I cannot help you there - I don't put much faith in alternative therapies - sometimes they can do more harm than good. As far as I am aware the traditional meds such as chemo and radiotherapies need a target and kill some healthy cells as well so are not suitable for your friends situation.

Try and encourage him not to put his life on hold too much, eat healthily and make the best out of whatever situation he finds himself.

Best wishes

Ronan 12 posts since
21-Oct-2009

6. 20-Nov-2009 11:03

in response to: tigger

Re: Action when faced with high-risk of return?

Thanks Tigger. I do encourage him not to put his life on hold. And he does go on holiday and takes time to smell the roses. But there are big decisions - like having a child with his partner - which cannot be made until some time has passed.

Congratulations on reaching 2 1/2 years without recurrence. Best of luck for the next 2 1/2 and beyond.

Ronan 12 posts since
21-Oct-2009

7. 20-Nov-2009 11:07

in response to: tigger

Re: Action when faced with high-risk of return?

P.S. I can see why radiotherapy and chemotherapy (which will not, at any rate, be suitable for his type of cancer) cannot be used against undetectable cells. But what about the vaunted drugs ('interferon' and 'sunitnib')? They are taken orally and not targeted, surely?

seanty 75 posts since
28-Jul-2009

8. 20-Nov-2009 11:42

in response to: Ronan

Re: Action when faced with high-risk of return?

Hi Ronan,

I'm in a reasonable similar situation to your friend, albeit with adifferent cancer, and consequently I've looked at this pretty hard.

Contrary to some other posters' claims, there is no evidence for any sort of anti-cancer diet as far as prevention of recurrence is concerned. Neither does meditation help to prevent cancer coming back, though it has been shown to help with the stress.

Interferon is used reasonably widely with high risk melanoma patients, but the evidence that it helps to prevent recurrence is pretty flimsy, and it's a pretty nasty treatment. Response rates for kidney cancer are pretty low. Sunitinib has a better response rate, but none of these things are cures. Usully it's just a question of a few more months.

If your friend is interested in trying novel drug treatments, there are open clinical trial of new drugs for kidenty cancer listed here.

Ronan 12 posts since
21-Oct-2009

9. 28-Nov-2009 15:18

in response to: seanty

Re: Action when faced with high-risk of return?

Thank you Seanty. I've looked through those trials and the only one for which he might have been suitable (the SCORE trial) I think he was considered for and ruled out because of the aggression. It is now more that three months since the operation to remove his kidney anyway, so he would not be eligible.

The other trials he won't be eligible for unless or (until) the disease comes back.

He had his first scan post-op scan a couple of weeks ago and it was clear (this emerged over the phone in conversation with the nurse). The initial relief gave way when he and his partner saw the senior registrar and the gravity of the situation was re-emphasised. 80% chance of return and then only palliative, biological therapy such as you describe. He felt the medical staff seemed to expect it to come back - understandably, with an 80% chance.

It sounds as if, to answer my initial query, there are no effective steps he can take to reduce the chance of recurrence and he just has to live with this dismal prognosis and all that it implies.

Thanks again for your response, Seanty, and I hope your own situation defies any negative prognosis you may have been given.

Ronan

tigger 296 posts since
07-Sep-2008

10. 29-Nov-2009 19:52

in response to: Ronan

Re: Action when faced with high-risk of return?

All I can say is this...

To come to an 80% chance of return there must be the 20% that don't.

I am one of life's eternal pessimists - although I like to think of it being "realist" but I have learned to push through the statistics and try and make the most of every situation I encounter.

On Monday I woke up with lymph node swelling in my left groin. The "old" me thought CANCER the new me thought "maybe cancer but maybe something else" lets give it a couple of days.

I am getting it checked out but I am a lot more positive than I was to start off with. Some of the people I have seen for my check ups (over the last 2 1/2 years) have been very positive, some very negative and some have treated me like a lump of meat. The statistics are not in your friends favour but like I said at the beginning people have to be in the 20% or it wouldn't exist.

Wishing you both well xxx

Ronan 12 posts since
21-Oct-2009

11. 29-Nov-2009 20:06

in response to: tigger

Re: Action when faced with high-risk of return?

Thank you Tigger. You are of course right - that 20% is there and does give us some hope. Interesting, too, to hear your experiences of the positive and negative attitudes of the medical staff.

So sorry to hear about the lump in your groin and hope it is completely cancer unrelated.

Good luck to you and thanks for your words of encouragement.

Ronan

Rodis 806 posts since
25-Jun-2008

12. 29-Nov-2009 20:39

in response to: tigger

Re: Action when faced with high-risk of return?

Hi Tigger,

How true and significant your words are. Sorry to hear of the swelling in your groin, please let us know how you go on. Best wishes, Rodis.

imabloke 285 posts since
19-Jun-2008

13. 30-Nov-2009 04:56

in response to: tigger

Re: Action when faced with high-risk of return?

Tigger........glad you've managed to make the distinction between the 'old' and 'new' you.....difficult to not fear the worst isn't it??

I hope all is well and the Lymph node is just enlarged cos of a bug or something.

Good luck and stay happy n healthy

tigger 296 posts since
07-Sep-2008

14. 30-Nov-2009 17:48

in response to: imabloke

Re: Action when faced with high-risk of return?

Thanks to everyone for their support regarding my lump.

Had this been even a few months earlier and I may have been dealing with it differently. I am learning to look at the better side of the statistics on the whole even though this did give me a crisis of confidence.

I have never hoped for a femoral hernia more in my life - I am not sure when anyone will have a proper look at me - that in itself gives me confidence it is nothing sinister - they have not "fast tracked" me for immediate tests. Yes , Iambloke, it is hard not to think the worst but I think I am getting there - slowly.

I am over the front loaded risk time and will push on with a positive vibe as long as possible.

I would not have been this balanced about the C thing had I not found this site to let off steam.

Think positive !

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Action when faced with high-risk of return?

21-Oct-2009 20:02

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