Prostate Cancer: Hi to all of you wonderful people... - LUPUS UK

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Prostate Cancer

Melbourne-Girl
Melbourne-Girl
β€’19 Replies

Hi to all of you wonderful people. I was not sure which post to write this on as it is particularly pertinent to men and everyone has some men in their life, is posting it just here OK?

It is not many years ago that everyone in the medical profession including Urologists & Urology Sugeons thought that all prostate cancer grows very slowly & their patients will die from other things.

I found out too late to help my father & he died of an aggressive form of prostate cancer which rapidly spread to his other organs & through every bone in his body where he was getting pathological fractures every day of his remaining life.

Scientists found a few years ago that there is a very aggressive form of prostate cancer (similar to the worst type of breast cancer HERS). If untreated it spreads very quickly to all of the organs and bones in your body. I wish there had been more information about this sent to both Drs & the general population as it would have saved many lives.

My understanding is that if it is caught in a timely manner & removed there is a very high chance of survival (something like 96% survival rate of treated cases).

I hope this will help many men

My best wishes always

Suzee xxxx

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19 Replies
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Thanks Melbourne-Girl,

There are men here too! My Dad has prostate cancer. Luckily it has been well controlled so far, but it's someting I fully expect to come my way sooner or later x

Hi whisperit has your fathers prostate been checked to make sure it’s not the aggressive type? How long has he had it?

Best wishes

Suzee xx

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Several years now. He has regular checks which, luckily, show it appears to be in remission x

It’s great that you know about it now whisperit as you will be able to tell other men and get them to have prostate checks early so that if there is any sign of cancer it can be tested to see if it’s the aggressive form and save their life.

You have probably been reading this post,

How amazing is it that our own Penelope -Mary’s partner invented the radical prostatectomy & treats a lot of men with the aggressive malignant prostate as well as teaching other Drs in his free time about this aggressive form, both in the UK & some overseas. He & his teachings are amazing & he is from the UK!

Unfortunately one very committed and passionate man in this area is not enough & we need to disemminate this information to all types of Drs & the general population.

P-M’s partner & those he has taught would have already saved many men’s lives & when it becomes general knowledge it will save a lot more. Any ideas whisperit, all thoughts greatly appreciated, we have to get it out therexx

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It just so happens I had a message yesterday from someone on my home forum telling me her husband died in September from the highly aggressive sort of PC. It had come up originally because her rheumatologist wasn't happy she asked not to reduce her pred dose because her husband had a recurrence of PC that wasn't responding to any treatment they tried. This insensitive, patronising and ignorant doctor told her that PC was "the best sort of cancer to have" and no-one died of it, just with it. How wrong can you be?

When healthcare professionals are unaware - it is time to shout from the rooftops, and it is still Movember. I knew because I had a young-ish (50s) acquaintance who developed the nasty variety shortly before I moved here, I have no idea how he got on though. Treatment for PC is improving all the time - but it isn't perfect yet and the earlier it starts the better chances there are.

I'll support you posting anywhere with this sort of information.

PMPpro thank you for passing that on, I am saddened to hear about your friends husband and believe that this could be the tip of an iceberg. As I said there has not been enough published about it as scientists have known since at least 2010 and the Urologist Specialist should be able to find out if it’s the aggressive type as soon as they assess each patient & send samples, bloods etc for analysis and do a prostatectomy ASAP. If this happens the person has a 96% chance of survival (I read this from a clinical paper because of what had happened to my father I was keen to read about it and hopefully save other men’s lives from this knowledge). As I said in my post there would be many Doctors still unaware of it.

I think the only way your friend in his 50’s could have survived was by his Specialist Urologist Surgeon acting quickly with a prostatectomy & any other treatment he felt necessary to save this mans life.

Can you think of any way this information is passed on to the public at large, including all of the medical professionals?

You could also use the example from your home forum & it will be particularly pertinent as it happened so recently. As I said many more men will lose their lives this way until it becomes common knowledge.

Thank you for your reply, it will make me very happy when I hear stories of the men whose lives have been saved from this aggressive type of cancer

Stay well

Suzee xx

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Mks9558
Mks9558 in reply to PMRpro

It is so sad to see so many uninformed healthcare β€œexperts”. You have to be retested to keep your drivers license are there any type of updates required of medical staff?

Thanks for sharing this information!

Thanks for your response Mks9558. If you can think of a way this information can be sent out to the general population, including all doctors that would be helpful. If someone know a Urologist or a Urology Surgeon who can write an article on it using clinical papers & clinical abstracts as his source of information then it hopefully will be picked up by the media at no charge (because the site runs a community service health care forum & also there would be a lot of men in the media). That’s just a suggestion as I am sure it’s still happening in Australia & other countries too. Please put forward any suggestions you think may work. I read something on someone’s post recently that made me aware that the doctors & general population still thought there was only a slow growing prostate problem which is why I wrote that post.

All the best

Suzee xxxx

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I am going to think about this some over the next several days. I saw a story yesterday on Twitter out of the U.K. about an Autistic woman who had a brain tumor and the neurologist told her parents on several occasions that a MRI would not identify anything. Turns out he was wrong. The girl died 5 days ( I may not be accurate on number of day here) before the approved MRI that would have identified the tumor that needed to be removed to save her life.

Maybe the best way is to push the story through social media. However there are now laws being put in place in different countries that might impact so would need a media company for sure.

I was saddened to hear of the young lady who died because she could not be given an MRI in a timely manner and died from her brain tumour.

It is heartening, however, to think that you & hopefully others will think of ways that we can disemminate this information about this radical type of prostate cancer & the importance of finding it early including signs & symptoms & how often men should have medical checks to prevent these men dying.

I agree we will need all forms of media input including radio, television ? Facebook if thought appropriate & there may be other ways too If everyone brain storms.

If we got the Urological Society behind us & some well know Specialists wrote an article as I suggested then A4 information sheets that were bright & colourful to make people want to pick them up could be left in surgeries of every Dr (including Specialists) for patients to read. This could be one of the things done to get that information out there.

We would have lost many men already because the information is not known. Prior to my finding out, I too only thought there was one type of prostate cancer

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The four leaf shamrock or clover to bring good luck

My other half is a urologist who specialises in this aggressive cancer, a timely radical prostatectomy with radiotherapy etc is standard care and there is as with the equivalent aggressive breast cancer, not always a 100% survival rate.

I am so so sad and sorry for you dear Melbourne-Girl, that you have lost your father this way. I don’t know what to say. Hugs to you.

PM

Thank you Penelope-Mary as you you can see from some of the replies that I have had there are still men not being treated for this aggressive prostate cancer. I read in one clinical paper that there was approximately a 96% cure rate when caught by people like your wonderful husband. Most of the general population (including Drs from all sorts of specialties still believe there is only the type of prostate cancer and it is so slow growing the patient will die of something else).

Any suggestions for disemminating this information so that everyone is better informed? Maybe your husband will have some ideas?

Thanks so much PM

Suzee xxx

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Thank you Suzee for the reply. He he v active in educating the medical fraternity; giving lectures in the evenings and saturdays to GP’s, residents and registras to inform them and take questions. I am proud of his dedication and his honorary work in the public hospital as well as places like the Solomon Islands. He designed the original radical prostatectomy many years ago and selflessly taught it including to visiting specialists from many countries.

He is respected and loved too by his patients.. I hear him on the phone in the evenings and weekends!

I like that you have brought this topic up to spread the awareness, you are right to.

Bless 🌸 you xx

PM

Thanks for that PM and what a wonderful and selfless man your husband must be. Amazing that he designed the radical prostatectomy, he must have saved many men’s lives. It’s frustrating when he has done all of this incredible work and continues to give his time freely to educate other doctors and teach them about radical prostatectomy & the aggressive form of cancer of the prostate. Do you know how often he thinks men should have prostate checks and if it’s in the family does that frequency change or the checks start at an earlier age?

Aggressive prostate cancer is still so unknown in the general populous, including many doctors. Unfortunately your partner is only one very caring and passionate man in his efforts to get get this disemminated. It would make his wonderful discoveries and treatments even more worth while to be able to get his awareness and knowledge β€œout there” and have most people aware that it is a real probability if they get prostate cancer so that they are checked ASAP to make sure they don’t have this aggressive type & get the right treatment if they do have it.

I will be really happy when I find his work is well known by most people, as I am sure you & he will be. What he has done has been & is a huge achievement as will it be a huge achievement when this happens,

My best always to you and your partner & thank you for sharing this,

Suzee xxx

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Thank you Suzee for your lovely reply.

It’s people like you who make the difference. Speaking up and actively engaging others to listen and to act, saves lives. Keep going; you are a good person.

Hugs

PM

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PMRpro
PMRpro in reply to Mks9558

They do continuing professional development supposedly - in the UK at least. But that doesn't mean that much - and the case I mentioned had nothing to do with urology so would be expected to know.

Hello again PMRpro read the posts above from Penelope-Mary they are very enlightening & her partner has devised treatments for aggressive prostate cancer & gives talks freely in his own time to teach other & show other doctors how to pick this up and treat it etc Clearly a selfless leader in this field.

It is amazing & selfless work that he has done & is doing and he personally & those he taught would have saved many lives.

The unfortunate part is that he is only one man so there is still a huge deficit in getting the information out there to all Drs and the general population. Keep your thinking cap on as discussing it frequently will bring good ideas and ways that this may be done. It has already shown us that the man who pioneered all of this and is still teaching other Drs about it is in fact PM’s partner which is a huge piece of this puzzle.

I hope MKS & others are still thinking and talking about a way of disemminating this information to as many people as possible.

The brilliant and caring specialist who pioneered all of this is in the UK after all

Best always

Suzee xxx

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JGBH
JGBH in reply to Mks9558

Actually I have become aware over the past 4 years that a large number of doctors and consultants alike are not well informed about so many illnesses, symptoms - which they ignore in favour of easy box ticking! - This is seriously worrying. What indeed do they learn at medic schools?? Not reassuring for us patients.

In fact I have had to do all my research plus help from so many fantastic people from the various healthunlocked fora in order to fight my battles with GPs and some consultants. One should not have to do so, especially when feeling so ill, so low. In many ways I feel doctors knew more and were better up to 20 years ago. Nowadays all they do is tick boxes left, right and centre.... easy and very safe for them but totally useless for us poor patients. These doctors have become civil servants... sitting at their desks, not listening to the patients symptoms, and dishing out the usual drugs: antidepressants, statins, blood pressure drugs, etc. the run of the mill stuff. When it comes to diagnosing something more complicated they are unable and often unwilling. Sorry, it has to be said. Of course, if one is really lucky it is possible to come across a great docctor... not the norm but the exception unfortunately.

Melbourne-Girl
Melbourne-Girl in reply to JGBH

I think what happens JGBH is like with prostate cancer they were not aware of the fact that there was an aggressive form of prostate cancer until more recent times.

Still hoping someone will see the amazing work that Penelope-Mary’s partner does in this field and as he is in the UK they may get some good advice about what interested parties could do to get this information out there to all Drs and the general population so that we are not still seeing so many poor men dying from this.

Unfortunately this was not known when my father died from this aggressive form.

I will be posting some key learnings I got when I am feeling a little better about influenzas A as it is important people know this as well and I was lucky enough to work with a global expert on influenza from the World Health Organisation. Most Drs would not know about this either as it was only in recent times that they started getting treatments to help with viral infections and they are still working to get treatments for many more viruses that as yet don’t have treatments. As we evolve with our knowledge on disease things change and more is known about how to treat such diseases and because they are new treatment and learnings Drs who trained before that time have no knowledge of these from their medical training.

I should add because of reasons that I have suggested & other reasons it is always good to do some research ourselves and also reach out on this wonderful forum where there are thousands of people who can give you scenarios of treatments or diseases that you have and they can give you amazing suggestions of how theirs may have been handled including scenarios where Drs just don’t know about your disease state & how to best handle it.

Martin was right when he said it can be β€œa lonely road’ as if your friends & family have not had such things as you have to cope with, it is very difficult for them to understand and relate to what you are going through & it’s a double whammy if your Dr hasn’t treated patients with your particular disease & appears to know nothing about treating it,

Best always xxx

M-G (Suzee)

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