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Attitudes to Prostate Cancer

User
Posted 19 Apr 2015 at 10:07

About 2 months ago, an 'intelligent' guy said to be that if he was going to get cancer, then PCa is the one to get.  I didn't want to get in an argument, but when you follow threads of those who suffer so badly, thinking of that comment makes my blood boil.  I get the impression that this kind of attitude is fairly common, and it is a perception that needs to be changed.

Until there is a definitive test that can be readily given to all men post 40 like the cervical smear test and breast cancer screening for the ladies, without a programme of education, I don't see changes to people's blase attitudes any time soon.

 

Paul

Stay Calm And Carry On.
User
Posted 19 Apr 2015 at 15:48
Hi Paul hope your golf is going well.

There are so many people out there that think along those lines, gradually with better media coverage and some big celebrities backing the cause it is improving.

Not long after Mick was diagnosed the subject came up in PM'S question time our current PM a well educated and allegedly very intelligent man referred to the disease twice as Prostrate cancer. I sent his office a fb message saying how surprised I was that he should make this very common error ..Their response "does it really matter?"

Like so many things in life those with the disease or those associated with it in any way are so much more aware and sensitive.

Unfortunately i believe statistics back up my least favourite saying ..."more men die with it than of it"

As for that elusive test I have not heard of anything coming close maybe

Jamie the oncologist speaker at MOTS might have some latest update on that subject?

Best wishes

Xx

Mo

User
Posted 19 Apr 2015 at 16:04

It's very frustrating that some people do have that opinion about PCa

Regarding the remark by the PM's office...well there's a surprise...actually that is quite a fitting motto for them. So can go from

Conservatives- "together, we can secure a brighter future"

to

Conservatives - "Does it really matter"

I know which one i think is the most appropriate

Bri

Edited by member 19 Apr 2015 at 16:04  | Reason: Not specified

User
Posted 19 Apr 2015 at 16:58

I'm not defending what to my knowledge is at least a 10 year old attitude but trying see where it comes from.

So the person hears of the guy up the road who had surgery, which only involved a short stay in hospital, was told all out you're cured and as long term side effects such as long term ED and or incontinence were not disclosed then it could well be seen as a quick cancer to cure and thus have.

Perhaps one solution to change that attitude is besides not only mentioning the deaths per year but also the number of those suffering long term side effects. However just as the C word was hardly mentioned years back is it the same with side effects. If so it could be said the more open folks are about side effects the less it might be seen as a cancer to have. But how many folks will admit to family, neighbours, work colleagues and friends they suffer from ED and or incontinence?

Does then the answer to change attitudes rest with various charities to highlight the issue and suffering survivors being more open?

Ray

User
Posted 19 Apr 2015 at 17:07

I find this a difficult topic. No cancer is obviously the best cancer but it is common sense to see some cancers as worse than others - lung, pancreatic and ovarian spring to mind. Not because they are inherently worse cancers but because diagnosis comes much later in the process and therefore the time for curative treatment becomes more limited.

Years ago when I had testicular cancer I used to tell myself it was a good one to have because survival rates even in the 1980s was much greater and of course I survived that. Though I have an incurable diagnosis now I have had three years + of reasonable good health and continue to work and I would not swap that and whatever is to come. I think the marketing of concerns about PCa has changed dramatically in the last three years with some great campaigns, some research success and attempts to improve initial diagnosis. But for some their survival remains so short that we cannot escape the downside of any cancer diagnosis. Some will die early either because the cancer is aggressive or is discovered at a stage where palliative care is ineffective. In all such circumstances any remark that seems to downplay the experience of PCa will be viewed as problematic.

But I have chatted to many friends in the past three years and have discovered quite large numbers who have had PCa had treatment, either surgery or RT, and now live their life with no second thought towards PCa as a cancer. I understand that because I lived from 29 to 59 with similar freedom after recovering from testicular cancer.

For me though and this is purely a personal reflection, I have found the last three years paradoxically enervating and in most respects life affirming. I know I will die some day and it is highly likely in my case it will be PCa but I can carry on until then focused on life in ways which I had not realised and for that this diagnosis and my reflections on it are a key factor. For others the experience is proving less positive and in some cases devastating in its consequences. I feel for those who suffer this way and try and reach out and offer as much as I can. We all approach life and its partner death in different ways and we tread our respective paths. We find connection here on this site and that helps so much. Societal attitudes are changing, slowly and haltingly, but we are getting there.

User
Posted 19 Apr 2015 at 18:58
Hi Paul

When I was diagnosed someone actually told me PCa was the 'best one' to get as it was easily treatable. Frankly I didn't want cancer of any description. I guess sometimes people think they're being helpful.

Arthur

User
Posted 19 Apr 2015 at 19:03
Great post Paul..

I don't think the programmes, like the one I referenced in a previous post, help when an eminent Harley Street surgeon announces his patient was cured based on his histology. No mention of side effects etc or the fact he will have to have PSA tests for the rest of his life.

I'm pretty sure a lot of those people with a blasé view of this would have a different opinion if they were sat in front of the urologist when he looks you in the eye and utters those dreaded words

Bri

User
Posted 19 Apr 2015 at 19:09

Just as a matter of accuracy, cervical smear testing is not a definitive screen - those receiving a positive smear are usually asked to go back for a second one and then if that is also positive, a rather unpleasant biopsy in the company of a large camera. Similar to PSA testing, the proportion of false positives is high as is the tragic number of false negatives. And once treated for cervical cancer, we have a lifetime of screening and wondering whether it has come back. I was dx at the age of 19 - my daughters are all at increased risk but none have been able to get a doctor to agree to an early smear before the NHS agreed age of 25. How do I feel that one lovely daughter has already tested positive? Sick and angry.

The same comments could be made regarding breast screening. Proportion of false negatives and false positives is shocking (either for the women who have invasive treatment only to find it was unwarranted or for the women dx too late), current tests do not separate the pussy cats from the tigers and NICE is rather taken with all the data showing that there may be far too many women having treatment they didn't necessarily need. Result is that I understand they are consulting on withdrawing the screening programme and going for something akin the the PCA approach - testing where patients have requested it or shown indicators.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2015 at 19:56
When I was diagnosed in February this year the number of people that I spoke to all seemed to say the same thing, that if you are going to get cancer then prostate cancer is the "best one" as it is so treatable.

At the time I felt that perhaps I was "lucky" to get it, like winning on the lottery or pools etc but since then I have been absorbed with working out which treatment and what I should do to to give me the best chance of long term survival from this "fortunate" occurance within my body. I think a lot of statements come from the fact that most people see it as not affecting the lives of the patient in an obvious way although several people within the medical profession, including urology, have said the same thing to me.

The public image of prostate cancer should be changed with maybe PCUK running a publicity campaign as well as health information points within hospital as well as individuals that can bring themselves to "come out" with their personal problems.

There is probably a whole raft of things that could be done and my suggestions may be not very good but triggering a debate on here is one way to be positive rather than negative.

Thanks for reading. Cheers Chris

User
Posted 19 Apr 2015 at 23:13
Thanks for that info, Lyn. I can thoroughly understand your feelings about your poor daughter. Have you managed to confront the GP re this? I hope your daughter's treatment is/was successful.

I certainly feel very lucky. I am as content now as I have ever been and am grateful for my early dx. However, many are not so fortunate and suffer greatly.

The death rates and suffering are not well understood by the public. I am sure with the right publicity that more funding to deal with all aspects of this disease could be made available.

I will try and talk to PCUK reps about this at the Manchester Golf Show next week.

Paul

Stay Calm And Carry On.
User
Posted 19 Apr 2015 at 23:18

Hi Chris,

the trouble is that men generally are considered to be dreadful at getting themselves checked out. If the medical profession - or organisations such as PCUK - were more truthful about the impact of being diagnosed with PCa then many men would be even more reluctant to get their PSA checked.

Paul, not a GP issue - NICE guidelines coupled with CCG stance in three different parts of the UK - all three girls have faced the same difficulty. But thank you for your kind wishes xx

Edited by member 19 Apr 2015 at 23:21  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2015 at 23:36

Lyn

I'd be interested to know the attitude of NICE committee members to your family's predicament. Surely this isn't uncommon.

Stay Calm And Carry On.
 
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