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Is it worth the bother, you,ll grow some more!

User
Posted 05 Oct 2019 at 15:57

I was diagnosed with metastatic prostate cancer nearly 4 years ago. I have been treated with the usual stuff until it stopped working. I was about to start cabazitaxel when I asked for a second opinion and ended up on a drugs trial at RMH Sutton - the best thing I ever did. However this was curtailed because of a dangerous metastasis at T12. This was treated with separation surgery ablation followed by Cyberknife. As far as I know apart from my prostate, I just have 3.5 cm metastasis in my scapula. I would like to have this obliterated using stereotactic radiotherapy. I also think it would be appropriate to consider similar treatment to the prostate. Isn't it common sense to at least try this approach if it isn't over risky ? The clinical oncologist I spoke to the other day said there was no evidence that such a course of treatment would be beneficial at this stage. Medics use the words 'no evidence' when they really mean there is insufficient data on the subject. Such treatment is probably beneficial and probably does no harm but it it is not proven. I am expecting that the oncologist will advise systemic treatment ie chemo instead of specific radiotherapy because as she repeatedly told me metastases will occur in other parts of my body even after the eradication of others. So it is like Quetin Crisp's attitude to dusting. Not worth the bother. SH.

User
Posted 05 Oct 2019 at 20:10
Our onco has always said that if there was an isolated bone met he would try to treat it with RT but generally speaking RT to bone mets simply reduces pain, it does not treat the cancer. The difference with RT to the prostate is that it would be for between 4 and 7 weeks; a very expensive option for an incurable situation. Could you fund it yourself? Might also be worth a second opinion from another onco - perhaps contact the guy on here that has had a number of bones removed?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Oct 2019 at 20:20

Currently, the prostate isn't treated when there are distant mets, on the basis that cancer in the prostate isn't going to kill you - it's the cancer outside that does that. However, there is some evidence now that treating the main tumor slows progression of secondaries, and this has been done experimentally, but I'm not aware the NHS has adopted it.

User
Posted 06 Oct 2019 at 10:02

Originally Posted by: Online Community Member
Isn't it common sense to at least try this approach if it isn't over risky ? The clinical oncologist I spoke to the other day said there was no evidence that such a course of treatment would be beneficial at this stage. Medics use the words 'no evidence' when they really mean there is insufficient data on the subject. Such treatment is probably beneficial and probably does no harm but it it is not proven. I am expecting that the oncologist will advise systemic treatment ie chemo instead of specific radiotherapy because as she repeatedly told me metastases will occur in other parts of my body even after the eradication of others.

They also say 'no evidence for' when they don't want to upset you by saying 'there's a fair bit of evidence against'

'Common sense' says that if you have metastatic disease, chasing it around the body is very likely less effective than a systemic approach, and will carry the risk of unpleasant side effects, secondary cancers and wasted scarce resources. A systemic approach will also, hopefully, catch the microscopic metastases that have yet to be identified.

There is some evidence that treating the primary can cause some disease reversal, and can certainly reduce the risk of further metastasis. But - beyond pain reduction, and other local benefits - there just isn't evidence that treating individual metastases has any overall effect on the disease, while it may bring proven drawbacks. 

So if the metastasis is not causing pain or limiting movement, the risk/cost benefit looks a bit thin.

Edited by member 06 Oct 2019 at 10:07  | Reason: edited for clarity.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

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User
Posted 05 Oct 2019 at 20:10
Our onco has always said that if there was an isolated bone met he would try to treat it with RT but generally speaking RT to bone mets simply reduces pain, it does not treat the cancer. The difference with RT to the prostate is that it would be for between 4 and 7 weeks; a very expensive option for an incurable situation. Could you fund it yourself? Might also be worth a second opinion from another onco - perhaps contact the guy on here that has had a number of bones removed?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Oct 2019 at 20:20

Currently, the prostate isn't treated when there are distant mets, on the basis that cancer in the prostate isn't going to kill you - it's the cancer outside that does that. However, there is some evidence now that treating the main tumor slows progression of secondaries, and this has been done experimentally, but I'm not aware the NHS has adopted it.

User
Posted 06 Oct 2019 at 10:02

Originally Posted by: Online Community Member
Isn't it common sense to at least try this approach if it isn't over risky ? The clinical oncologist I spoke to the other day said there was no evidence that such a course of treatment would be beneficial at this stage. Medics use the words 'no evidence' when they really mean there is insufficient data on the subject. Such treatment is probably beneficial and probably does no harm but it it is not proven. I am expecting that the oncologist will advise systemic treatment ie chemo instead of specific radiotherapy because as she repeatedly told me metastases will occur in other parts of my body even after the eradication of others.

They also say 'no evidence for' when they don't want to upset you by saying 'there's a fair bit of evidence against'

'Common sense' says that if you have metastatic disease, chasing it around the body is very likely less effective than a systemic approach, and will carry the risk of unpleasant side effects, secondary cancers and wasted scarce resources. A systemic approach will also, hopefully, catch the microscopic metastases that have yet to be identified.

There is some evidence that treating the primary can cause some disease reversal, and can certainly reduce the risk of further metastasis. But - beyond pain reduction, and other local benefits - there just isn't evidence that treating individual metastases has any overall effect on the disease, while it may bring proven drawbacks. 

So if the metastasis is not causing pain or limiting movement, the risk/cost benefit looks a bit thin.

Edited by member 06 Oct 2019 at 10:07  | Reason: edited for clarity.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 06 Oct 2019 at 10:17

Originally Posted by: Online Community Member
Our onco has always said that if there was an isolated bone met he would try to treat it with RT but generally speaking RT to bone mets simply reduces pain, it does not treat the cancer. The difference with RT to the prostate is that it would be for between 4 and 7 weeks; a very expensive option for an incurable situation. Could you fund it yourself? Might also be worth a second opinion from another onco - perhaps contact the guy on here that has had a number of bones removed?

If you are considering self-funding, to give you an indication of cost, I had my RT done privately on my work medical insurance and the bill for the 30 fractions (6 weeks' treatment) was £27,000.

Best wishes,

Chris

 

User
Posted 06 Oct 2019 at 12:03
There are usually three price structures; the price to a private healthcare provider, the price to a self-funder and the price to the NHS when they have to resort to a private facility due to waiting lists or whatever. So while the cost to your insurer was massive, it would probably have been significantly less if you were digging into your own savings. That was how it worked with John’s RP (self funded) and my own treatment (obvs not for PCa!) and when we got a quote for the RT to be done privately, it was nowhere near £27,000 although we were lucky to get back into the NHS system and didn’t need to pay in the end.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2019 at 23:36

I should have made it clear that I was referring to oligometastases.

User
Posted 08 Oct 2019 at 10:06

Ah!

That does put a slightly different complexion on things.

You'd need to expand on what treatment you've actually had, perhaps in your profile, for firm answers, but based on what you've said in this thread:

You would need to argue for a full reassessment; oligometastatic prostate cancer four years ago may not be oligometastatic prostate cancer now.

If you have had just five (or fewer) metastases since diagnosis, then statistically / theoretically that's 'curable', but your earlier statement "I have been treated with the usual stuff until it stopped working" suggests that the reality may be different.

I think your views would have been perfectly valid four years ago (did you have that discussion?), but may no longer apply.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

 
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