I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

SCARED SHITLESS

Email this conversation Print this conversation
User
Posted 09 Mar 2016 at 15:57

HI EVERYBODY,

JUST RECENTLY DIAGNOSED FEB2016 PSA 10.3 GLEASON 3+4, THE 4 AM BEING TOLD ONLY 10%

4 SAMPLES OUT OF TEN SHOWING POSITIVE. TOLD THIS WOULD PREVIOUSLY BEEN GRADED 3+3

HAVE BEEN ADVISED TO GO ON ACTIVE SURVEILLANCE WHICH I AGREED .

HAVE ASKED HOW LONG I WOULD REMAIN ON THIS BEFORE INTERVENTION WAS LIKELY TO BE REQUIRED

BUT OBVIOUSLY NO ANSWER  COULD BE GIVEN

I WOULD LOVE TO HEAR  OTHERS EXPERIENCE OF AS

FOUND THIS SITE GREAT FOR IMPARTIAL VIEWS.

ALSO IS THERE ANY DIET THAT PEOPLE HAVE FOUND HELPFUL

VERY BEST WISHES 

JAMES

 

 

 

User
Posted 09 Mar 2016 at 18:46
James ,

Welcome from me to this site. I'm sorry that you're here but you'll find much support from us all.

Have you been any indication by you health care team when you'll be seen again by them or when you have to have a further Psa test?

Don't worry too much. A former colleague of mine was on AS for over 4 years. He still hasn't had treatment yet. I went straight into treatment as I had locally advanced cancer (t3a) upon diagnosis ?

Not that that meant much to me then. Have you been given a staging ?

Wishing you well,

John

User
Posted 09 Mar 2016 at 19:05

Hi James welcome to this site from me as well, there are lots of folk on here that can help you at whatever level of diagnosis or treatment you are on. Do not be afraid to ask questions as there is a lot to take in and to try and to understand, if you download or order the "toolkit" under publications there is so much information that will help you. You can also call one of the specialist nurses on this site and chat with them to help you through this worrying time.

Just like John I have not been on AS as I went straight onto treatment but it is what it says on the tin and you will be monitored on a regular basis. If you have to see any specialists take a notepad or someone with you to record any information. It is so easy to miss something or forget what was said as it is stressful waiting to hear results.

Hope you have a long AS, regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 09 Mar 2016 at 19:15
James ,

Just realised that I hadn't replied to your query re diet.

The common consensus seems to be to avoid red meat and dairy and processed foods. But each person will view this personally and amend their diet if they want to.

If you look at each of our personal stories via our individual user profiles , then you may find these help you and hopefully not scare you either.

There are many posts regarding diet on this site. If you have the patience then have a look.

I think that you must be early stage otherwise you would have immediate attention, just like Chris ( hi Chris !) and I.

Good luck and keep in contact.

John

User
Posted 09 Mar 2016 at 19:44

Hi James,
Active surveillance (AS) is a good option for some men as long as it is done correctly. Proper AS involves regular PSA tests (3 or 6 monthly) with an annual DRE (finger up the bum) and an annual scan. By putting the three tests together they can get good evidence of whether the cancer is staying the same or getting worse. Some are fortunate enough to stay on AS for many years or even forever - something else gets them instead!

Some men like my father in law think they are on AS but it isn't done properly. My father in law didn't get regular scans - they only measured his PSA - so no-one realised it had spread until the day before he died. But he was 83 and would have refused treatment anyway.

If you are interested in helping to control your cancer through diet, you might find the Prostate Cancer Cookbook useful - it was written by scientists from Prostate Cancer research UK and is available on Amazon. A summary of their research:
- reduce red meat, dairy & processed foods
- increase broccoli, garlic, onions, etc
- eat loads of tomatoes (preferably cooked in some way such as grilled or in soups & sauces)
- try to increase your intake of pomegranate

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

User
Posted 09 Mar 2016 at 20:37
Jim,

You're with us now !

Read the tool kits and if you have any queries then contact us.

I hope that you have a good holiday. It'll be nice to have something to look forward too.

One point , have you advised your insurance company ?

There are posts on this site regarding this.

I had to delay appointments because of holiday commitments too. It's a slow moving disease. But it does seem that you've been detected early.

Take care,

John

User
Posted 09 Mar 2016 at 21:00

No Jim, you must tell your insurance company you have been diagnosed - if you don't, your whole policy becomes invalid. That means that if anything happened at all (heart attack, knocked down by a bus, food poisoning) the insurance company can refuse to pay out.

I read yesterday about a lady who took ill in the USA and has been stuck there for months because she didn't disclose something so the company are refusing to pay and she doesn't have $200,000.

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

User
Posted 09 Mar 2016 at 22:47

Hi Jim,

I don't think your staging would be more than T2, as T3 would merit recommendation for radical treatment quite soon. As regards Insurance, you need to disclose existing medical conditions but can often exclude these from the policy so you carry your own risk if you wish. I have just done this today as unless PCa is at an advanced stage it rarely requires urgent intervention. I mentioned this to my consultant today and he agreed. Incidentally, I got the best price by far and good claim limits through using Santander's insurers who offer large travel discounts if you have a 123 or certain other accounts of theirs'. However, if you include your existing heath conditions I found them more expensive than elsewhere in my case, (discount not applicable on heath conditions). I am not sure whether they cover long trips though.

It would making reading your posts easier if you take off the caps, sometimes called shouting on forums.

Barry
User
Posted 10 Mar 2016 at 11:36

Hi Jim, well you got here in the end, so that's what matters. My John uses a computer and has gained a lot of knowledge over the years but he is reluctant to sort out any problems so I'm always hearing "Help" or "What does this mean" !

He, alas, has no interest in joining any sites like this, thinks Facebook is for morons (~presumably including me since I keep in touch with our family like that) as are twitter and any of those other things that a lot of people use. He doesn't - so therefore - they aren't relevant !!
All different I suppose. I keep telling him he's lucky he has me. After 45+ years I'm still trying to convince him. Only joking (I think!)

Any first post that is made, in whatever area, has to be "moderated" ie accepted by a moderator as suitable for posting. Often doesn't take much time but it does confuse some people because when they press "POST" it doesn't appear.

I've done it myself a couple of times and I consider myself computer literate so don't worry about it.

Anything you want to know, especially having read the toolkit, then please ask. No question is stupid if you don't know the answer.

We do strongly advise, that you take somebody with you to consultations. You will probably include your wife I expect. Take a notebook and pen to jot down information. It will not be regarded as odd in any way. They will probably appreciate that you are taking it all seriously. There is often so much to take in that it is easy to miss stuff.

Welcome to "The Club", probably the only one that nobody actually wants to be a member of !

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 09 Mar 2016 at 18:46
James ,

Welcome from me to this site. I'm sorry that you're here but you'll find much support from us all.

Have you been any indication by you health care team when you'll be seen again by them or when you have to have a further Psa test?

Don't worry too much. A former colleague of mine was on AS for over 4 years. He still hasn't had treatment yet. I went straight into treatment as I had locally advanced cancer (t3a) upon diagnosis ?

Not that that meant much to me then. Have you been given a staging ?

Wishing you well,

John

User
Posted 09 Mar 2016 at 19:05

Hi James welcome to this site from me as well, there are lots of folk on here that can help you at whatever level of diagnosis or treatment you are on. Do not be afraid to ask questions as there is a lot to take in and to try and to understand, if you download or order the "toolkit" under publications there is so much information that will help you. You can also call one of the specialist nurses on this site and chat with them to help you through this worrying time.

Just like John I have not been on AS as I went straight onto treatment but it is what it says on the tin and you will be monitored on a regular basis. If you have to see any specialists take a notepad or someone with you to record any information. It is so easy to miss something or forget what was said as it is stressful waiting to hear results.

Hope you have a long AS, regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 09 Mar 2016 at 19:15
James ,

Just realised that I hadn't replied to your query re diet.

The common consensus seems to be to avoid red meat and dairy and processed foods. But each person will view this personally and amend their diet if they want to.

If you look at each of our personal stories via our individual user profiles , then you may find these help you and hopefully not scare you either.

There are many posts regarding diet on this site. If you have the patience then have a look.

I think that you must be early stage otherwise you would have immediate attention, just like Chris ( hi Chris !) and I.

Good luck and keep in contact.

John

User
Posted 09 Mar 2016 at 19:44

Hi James,
Active surveillance (AS) is a good option for some men as long as it is done correctly. Proper AS involves regular PSA tests (3 or 6 monthly) with an annual DRE (finger up the bum) and an annual scan. By putting the three tests together they can get good evidence of whether the cancer is staying the same or getting worse. Some are fortunate enough to stay on AS for many years or even forever - something else gets them instead!

Some men like my father in law think they are on AS but it isn't done properly. My father in law didn't get regular scans - they only measured his PSA - so no-one realised it had spread until the day before he died. But he was 83 and would have refused treatment anyway.

If you are interested in helping to control your cancer through diet, you might find the Prostate Cancer Cookbook useful - it was written by scientists from Prostate Cancer research UK and is available on Amazon. A summary of their research:
- reduce red meat, dairy & processed foods
- increase broccoli, garlic, onions, etc
- eat loads of tomatoes (preferably cooked in some way such as grilled or in soups & sauces)
- try to increase your intake of pomegranate

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

User
Posted 09 Mar 2016 at 20:05

HI JOHN,

MANY THANKS FOR YOUR REPLY

MY NEXT APPOINTMENT WAS MEANT TO BE JUNE BUT I POSPONED IT UNTIL JULY AS MY WIFE

AND I HAD ALREADY BOOKED A 2 MONTH HOLIDAY TO THE PHILIPPINES FROM MAY 1ST

THIS CAME COMPLETLY OUT OF THE BLUE. THEY DIDN'T SEEM CONCERNED ABOUT THE MONTH

DELAY. I AM NOT SURE OF WHAT STAGE I AM THINK IT MUST BE T1 OR T2 I SHALL HAVE TO ASK.

I HAD TO RING TODAY TO FIND OUT GLEASON SCORE AND PSA AS EVERYTHING WAS

GOING OVER OUR HEADS WHEN WE WERE GIVEN THE NEWS. 

ALL THESE NEW WORDS AND TERMINOLOGY ARE STILL BEING DECIFERED

AS WELL AS USING A COMPUTER BUT I GOT TO THIS SITE SOMEHOW.

I AM NOT VERY COMPUTER LITERATE NEVER HAD THE NEED SO I HOPE YOU RECEIVE

THIS REPLY.

THANKS AGAIN FOR TAKING THE TIME TO REPLY

JIM

User
Posted 09 Mar 2016 at 20:19

DEAR CHRIS

MANY THANKS FOR REPLY

VERY HELPFUL HAVE JUST ORDERED TOOL KIT

ONCE AGAIN MANY THANKS

BEST WISHES JIM

User
Posted 09 Mar 2016 at 20:26

DEAR LYNEYRE

MANY THANKS FOR YOUR GREAT REPLY

MEANS A GREAT DEAL LOTS OF SUPER INFO

BEST WISHES JIM

User
Posted 09 Mar 2016 at 20:37
Jim,

You're with us now !

Read the tool kits and if you have any queries then contact us.

I hope that you have a good holiday. It'll be nice to have something to look forward too.

One point , have you advised your insurance company ?

There are posts on this site regarding this.

I had to delay appointments because of holiday commitments too. It's a slow moving disease. But it does seem that you've been detected early.

Take care,

John

User
Posted 09 Mar 2016 at 20:48

hi again john

WE FOUND IT SO DIFFICULT TO GET INSURANCE AS WE ALWAYS

STAY ALONG TIME THERE LAST YEAR 4 MTHS SO WE WILL

JUST HOPE WE WILL BE OK AND HOPE FOR THE BEST

BEST WISHES JIM

User
Posted 09 Mar 2016 at 21:00

No Jim, you must tell your insurance company you have been diagnosed - if you don't, your whole policy becomes invalid. That means that if anything happened at all (heart attack, knocked down by a bus, food poisoning) the insurance company can refuse to pay out.

I read yesterday about a lady who took ill in the USA and has been stuck there for months because she didn't disclose something so the company are refusing to pay and she doesn't have $200,000.

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

User
Posted 09 Mar 2016 at 22:47

Hi Jim,

I don't think your staging would be more than T2, as T3 would merit recommendation for radical treatment quite soon. As regards Insurance, you need to disclose existing medical conditions but can often exclude these from the policy so you carry your own risk if you wish. I have just done this today as unless PCa is at an advanced stage it rarely requires urgent intervention. I mentioned this to my consultant today and he agreed. Incidentally, I got the best price by far and good claim limits through using Santander's insurers who offer large travel discounts if you have a 123 or certain other accounts of theirs'. However, if you include your existing heath conditions I found them more expensive than elsewhere in my case, (discount not applicable on heath conditions). I am not sure whether they cover long trips though.

It would making reading your posts easier if you take off the caps, sometimes called shouting on forums.

Barry
User
Posted 10 Mar 2016 at 08:54

Hello Jim and welcome.

My husband was on Active Surveillance for a year before changes happened and it was decided that he should go for treatment.

Because it was Active Surveillance (usually for those men whose cancers are small, contained, slow etc) all treatment options were still available to him after that year, but in the meantime he had the whole year to get his head round cancer and the treatments.

When I say he, I mean me, since he's never really investigated any of it - just left it to me. The final decision was his though.

Diet wise,I ordered a copy of the book that Lyn mentioned. It's about £12.99 new but I got a used copy from Amazon for 1p with £2.99 p&p. It's in excellent condition and is the same published date as a new one.

Insurance wise - Please let your insurance company know, even if you ask for the Prostate Cancer to be excluded on this occasion. Otherwise you risk leaving not just yourself but your wife too, in the lurch with no cover for ANYTHING. Insurance companies being like they are, a lot of them would take advantage of incomplete/missing info to disqualify any of the cover

For our first holiday post cancer, we went with Explorer Travel who included the PC because it was Active Surveillance.

We are still with the same company but I now check our holiday cover with Compare the Market and Go Compare because I got fed up keep inputting the same info for all the different companies only this time I declared that he has been treated for his cancer using seed Brachytherapy.

Explorer Travel was one of those offered to us now that he has had the treatment and we took it again although it isn't the cheapest option.
If you decide that you want the Cancer covered then comparison websites are the easiest (in my opinion) way of getting a good quote.

I have just insured us again for a single trip/couple and it was £111.00

I could have got a cheaper company from the list given  but I went with a slightly higher De Faqto level, and because I was comfortable using Explorer

I've just done insurance using the comparison sites, for my sister and her husband, again a couple/single trip, multiple health conditions. I only had to put in the details once on both sites and they do a check on available companies

Because of her health the cover is very expensive (Gold cover £614) but the one and only insurance company that would take her appeared for both Go Compare and Compare the market so I know it was her only option.

I'm glad you've found us. As you have already seen, there is a wealth of information and support on here, whenever you (or your wife) needs it

 

Edited by member 10 Mar 2016 at 09:00  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 10 Mar 2016 at 09:56

hi barry

firstly let me apologise for shouting [using large caps]

just not used to using computer.

i do have a santander 123 acccount so info greatly received.

many thanks again

jim

User
Posted 10 Mar 2016 at 10:43

hi john and sandra

many thanks for your reply very useful info

john sounds very much like me regarding computors

dont really know how i managed to get on this site

but am so happy i did. took me about 4hrs

each post takes about 20 mins and always wonder if it has worked

really should get in 21st century.

very best wishes to you both

jim and nora

User
Posted 10 Mar 2016 at 11:36

Hi Jim, well you got here in the end, so that's what matters. My John uses a computer and has gained a lot of knowledge over the years but he is reluctant to sort out any problems so I'm always hearing "Help" or "What does this mean" !

He, alas, has no interest in joining any sites like this, thinks Facebook is for morons (~presumably including me since I keep in touch with our family like that) as are twitter and any of those other things that a lot of people use. He doesn't - so therefore - they aren't relevant !!
All different I suppose. I keep telling him he's lucky he has me. After 45+ years I'm still trying to convince him. Only joking (I think!)

Any first post that is made, in whatever area, has to be "moderated" ie accepted by a moderator as suitable for posting. Often doesn't take much time but it does confuse some people because when they press "POST" it doesn't appear.

I've done it myself a couple of times and I consider myself computer literate so don't worry about it.

Anything you want to know, especially having read the toolkit, then please ask. No question is stupid if you don't know the answer.

We do strongly advise, that you take somebody with you to consultations. You will probably include your wife I expect. Take a notebook and pen to jot down information. It will not be regarded as odd in any way. They will probably appreciate that you are taking it all seriously. There is often so much to take in that it is easy to miss stuff.

Welcome to "The Club", probably the only one that nobody actually wants to be a member of !

We can't control the winds - but we can adjust our sails
User
Posted 10 Mar 2016 at 12:10

hi sandra john,

we are exactly the same nora keeps in touch with my family

and hers through facebook skype etc. which i have no

knowledge of or wish to. she is totally amazed how i got on this site

as i can barely use my unsmart mobile,

i think i am getting the same as her on facebook

with this site

yes nora did come with me to hospital under protest from me

but so glad she did. and i will certainly be taking notes next time

best wishes both

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK