Re: Hello from me......Charlie

[Guest guest]

Hi Charlie, Welcome to the group. My husband Ralph was diagnosed earlier this year. He is going to have the da Vinci (robotic) surgery next week. We live about 80 miles north of Little Rock, AR and are in a similar situation as you - no da vinci surgery locally,Little Rock is the closest option. Feeling dazed, miserable and pissed off is pretty much a standard reaction to this, there often isnt a black and white solution. Ask a lot of questions......of this group, and the medical people you come across in your travels. Good luck! Charlie wrote: Hi all, I just thought I would drop in and say hello, I have just been diagnosed with prostate cancer, I have had the MRI and the bone scan, and have been told informally that the cancer has not spread, from my prostate, which is I suppose a bit of good news. I am still waiting to meet with the medics, to discuss the best way forward for me, but to be honest, right now, I am still feeling a bit dazed / miserable, and very pi$$ed off! I have been having a look around the internet, but to be honest, it's almost a case of TMI! They tell me that I have the cancer on 50% of one side of my prostate, I don't have any symptoms other than a bit of a

weak stream and some ED, they have, on previous occasions been talking radical surgery, Keyhole (Robotic Surgery) in available to me, at a hospital about 50 miles from my home, and the gutted like a fish version is available to me here where I live. I aint very keen on either, though I have taken on board what they have said, in that it will cure the problem, it's what comes after I am having trouble with. I am waiting for an appointment to discuss the options formally, so until then, I guess I will just have to mull things over. Best to all, Charlie.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Thanks everybody for getting back to me.

Well this is as much as I know, dunno if it's enough, but, back in 2005, I went for a rectal examination, and they said that well yes, there is a bit of hardness there, but they would like to see me in six months.....well, it didn't happen, partly because they forgot to give me an appointment, and partly becuase things were at that time a bit hectic on my side, any way, at that time I had a PSA of 18.6

Then in May of 2007, I had a "minor" heart attack, more a shot across the bows really, but I was in Hospital for 6 days. Now I have been told that this may affect the Surgeons decision to give me radical surgery? but as I said to them, I am a big bloke, and physically robust, so what's the problem?

In February this year, my GP picked up on the fact that they hadn't given me another appointment at the Hospital and had me in for another Oh be joyful, rectal examination!......I hate all that finger poken, at least, I think it was his finger, it felt like it was his fist!.... Now it transpires he can feel a bit of a lump or nodule on one side, so I had another blood test, and that came back with a PSA of 15.4

So I had the biopsy, (I aint gonna talk about that!) .....which came back with a Gleason Scale of 7. No abnormality on the right side, but on the left, a 4+3, the 4 being the abnormal figure. I have been on the phone to the Hospital this afternoon, and they say that they are hoping to get me in to see my Consultant next Friday, and the Oncologist will be there as well, so we will be able to talk over my various options.

In brief, assuming that I can have radical surgery, I can go to Taunton, 50 miles away and have the keyhole surgery, in Hospital for two or three days, then home.

I can have the gutted like a fish version at Barnstaple, nearer, only 9 miles away, but in Hospital for about ten days!

I can have radio therapy, which means an 80 mile round trip to Exeter, 5 days a week for 7 weeks, that is about 2800 miles, and about 500 quid in fuel! As you can imagine, I am not taking that on board easily.

I did mention the radio active seeds implant thing, but they said that because of the amount of cancerous cells, they don't think it will be very effective?

So there it is folks, I suppose I will have to wait until next Friday and see what transpires? I think though that initially I will be asking if I have a bit of time to sort this in my head before making a decision about what if any choices I may have with regard to treatment. I may as well tell you, the two things that are bugging me most of all are, permenant ED, and the chance of being incontinent........Oh aye.....and being dead! don't fancy that much at all, I am only just 60, and would quite like a few more years

OK, rambled on enough.

Best to all, Charlie.

> Hi all,> I just thought I would drop in and say hello, I have just been diagnosed with prostate cancer, I have had the MRI and the bone scan, and have been told informally that the cancer has not spread, from my prostate, which is I suppose a bit of good news. I am still waiting to meet with the medics, to discuss the best way forward for me, but to be honest, right now, I am still feeling a bit dazed / miserable, and very pi$$ed off! I have been having a look around the internet, but to be honest, it's almost a case of TMI! > They tell me that I have the cancer on 50% of one side of my prostate, I don't have any symptoms other than a bit of a weak stream and some ED, they have, on previous occasions been talking radical surgery, Keyhole (Robotic Surgery) in available to me, at a hospital about 50 miles from my home, and the gutted like a fish version is available to me here where I live. I aint very keen on either, though I have taken on board what they have said, in that it will cure the problem, it's what comes after I am having trouble with.> I am waiting for an appointment to discuss the options formally, so until then, I guess I will just have to mull things over.> Best to all, Charlie.> > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

--- Charlie you live very close to me> I live in Rhode Island and had

my surgury in Fall River. I highly recommend ny doc. he does the nerve

sparing surgury if he can sometimes its not possible. I belive you

should find a doc who does this alot or does what you choose a lot.

I'll give you my doc's credentials he his Dr. Carroll and he lives

in Portsmouth Rhode Island. He is a specialist in both pediatric and

adult urology. He is a graduate of Boston College with medical degree

from Tufts University School of Medicine in Boston where he recieved

the top medical graduate award. During his residency in surgery and

urology at New England Medical Center, he served as chief resident in

surgery. Before relocating to Fall River, he served as head of the

Urology department at the U.S. Naval Hospital and a clinical assistant

professor of urology at the Medical University of South Carolina. There

he was awarded the Navy Medal of Commendation for hard work and

dedication. In 1997, he recieved the Pfizer National Scholar in Urology

Award.

He has served as an instructor in urology at Tufts University School

of Medicine, where he was honored with the excellence in Teaching

Award. He is a clinical assistant proffesor of urology at Tuft's and a

Diplomate of the American Board of Urology and the National Board of

Medical Examiners and a member of the American Urological Association.

his office is located at 1601 South Main Street Fall River Mass.and

1030 President Ave. Fall River Mass. phone number 1-

mike

[Guest guest]

I do......

Er Mike, that Doc sound like a great bloke, but I live in the UK, at Bideford in the county of Devon (rhymes with heaven).....Though it aint very heavenly!

Best, Charlie.

>> --- Charlie you live very close to me> I live in Rhode Island and had > my surgury in Fall River. I highly recommend ny doc. he does the nerve > sparing surgury if he can sometimes its not possible. I belive you > should find a doc who does this alot or does what you choose a lot. > I'll give you my doc's credentials he his Dr. Carroll and he lives > in Portsmouth Rhode Island. He is a specialist in both pediatric and > adult urology. He is a graduate of Boston College with medical degree > from Tufts University School of Medicine in Boston where he recieved > the top medical graduate award. During his residency in surgery and > urology at New England Medical Center, he served as chief resident in > surgery. Before relocating to Fall River, he served as head of the > Urology department at the U.S. Naval Hospital and a clinical assistant > professor of urology at the Medical University of South Carolina. There > he was awarded the Navy Medal of Commendation for hard work and > dedication. In 1997, he recieved the Pfizer National Scholar in Urology > Award.> > He has served as an instructor in urology at Tufts University School > of Medicine, where he was honored with the excellence in Teaching > Award. He is a clinical assistant proffesor of urology at Tuft's and a > Diplomate of the American Board of Urology and the National Board of > Medical Examiners and a member of the American Urological Association. > his office is located at 1601 South Main Street Fall River Mass.and > 1030 President Ave. Fall River Mass. phone number 1-> > mike>

[Guest guest]

sorry

When you said Taunton I thought you ment Taunton Massachusetts in U.S.A.

And we have a Barnstable in Massachusetts also. thats funny almost hurt

myself typing all the Doc info. I don't think you live very close

after all.

mike

[Guest guest]

Yes you do have a Barnstable.......but ours is Barnsta P le, though I believe that your Barnstable was meant to be named after ours by the early settlers, probably got bastardised in usage?

Hey, I am with you in spirit!

Best, Charlie.

>> sorry> > When you said Taunton I thought you ment Taunton Massachusetts in U.S.A.> And we have a Barnstable in Massachusetts also. thats funny almost hurt > myself typing all the Doc info. I don't think you live very close > after all.> > mike>

[Guest guest]

> Thanks everybody for getting back to me.

Welcome to the club no one wants to join.

I'll get right to the point with these recommendations:

(1) Refer to the encyclopedic and authoritative website of the Prostate

Cancer Research Institute (PCRI) and its section, " Newly Diagnosed " at

http://prostate-cancer.org/education/education.html#newly_diagnosed

(2) Study the best text on PCa, _A Primer on Prostate Cancer_ 2nd ed.,

subtitled " The Empowered Patient's Guide " by medical oncologist and PCa

specialist B. Strum, MD and PCa warrior Donna Pogliano. It is

available from the PCRI website and the like, as well as Amazon (30+

five-star reviews), & Noble, and bookstores. A lifesaver, as I

very well know.

(3) Look into meeting with other PCa patients at a local chapter of the

support group Us Too International. There are eight chapters in the UK.

The Us Too website is at http://www.ustoo.com/ and access to the chapter

list can be had from there.

(4) Join us at http://www.pcainaz.org/ and our Bulletin Board at

http://pcainaz.org/phpBB3/

The site was originally for Us Too members in the wilds of Arizona USA,

but has evolved to an international group. Many participants are in the UK.

We have an international chat every Saturday at 1900 GMT, accessed via

the first site shown above. It is necessary to register to gain access.

Fear not; no spam, no flamewars, occasional silliness (there's a forum

just for that).

It is easy to become overwhelmed, and the only solution I know of is

simply to keep pecking away and learning. The more the patient knows,

the greater the likelihood that he will make a decision that will lead

to an optimum result.

Good hunting, an do keep us informed.

Regards,

Steve J

" Empowerment: taking responsibility for and authority over one's own

outcomes based on education and knowledge of the consequences and

contingencies involved in one's own decisions. This focus provides the

uplifting energy that can sustain in the face of crisis. "

--Donna Pogliano, co-author of _A Primer on Prostate Cancer_, subtitled

" The Empowered Patient's Guide. "

>

> Well this is as much as I know, dunno if it's enough, but, back in 2005,

> I went for a rectal examination, and they said that well yes, there is a

> bit of hardness there, but they would like to see me in six

> months.....well, it didn't happen, partly because they forgot to give me

> an appointment, and partly becuase things were at that time a bit hectic

> on my side, any way, at that time I had a PSA of 18.6

>

> Then in May of 2007, I had a " minor " heart attack, more a shot across

> the bows really, but I was in Hospital for 6 days. Now I have been told

> that this may affect the Surgeons decision to give me radical surgery?

> but as I said to them, I am a big bloke, and physically robust, so

> what's the problem?

>

> In February this year, my GP picked up on the fact that they hadn't

> given me another appointment at the Hospital and had me in for another

> Oh be joyful, rectal examination!......I hate all that finger poken, at

> least, I think it was his finger, it felt like it was his fist!....

> Now it transpires he can feel a bit of a lump or nodule on one side, so

> I had another blood test, and that came back with a PSA of 15.4

>

> So I had the biopsy, (I aint gonna talk about that!) .....which came

> back with a Gleason Scale of 7. No abnormality on the right side, but

> on the left, a 4+3, the 4 being the abnormal figure. I have been on the

> phone to the Hospital this afternoon, and they say that they are hoping

> to get me in to see my Consultant next Friday, and the Oncologist will

> be there as well, so we will be able to talk over my various options.

>

> In brief, assuming that I can have radical surgery, I can go to Taunton,

> 50 miles away and have the keyhole surgery, in Hospital for two or three

> days, then home.

>

> I can have the gutted like a fish version at Barnstaple, nearer, only 9

> miles away, but in Hospital for about ten days!

>

> I can have radio therapy, which means an 80 mile round trip to Exeter, 5

> days a week for 7 weeks, that is about 2800 miles, and about 500 quid in

> fuel! As you can imagine, I am not taking that on board easily.

>

> I did mention the radio active seeds implant thing, but they said that

> because of the amount of cancerous cells, they don't think it will be

> very effective?

>

> So there it is folks, I suppose I will have to wait until next Friday

> and see what transpires? I think though that initially I will be asking

> if I have a bit of time to sort this in my head before making a decision

> about what if any choices I may have with regard to treatment. I may as

> well tell you, the two things that are bugging me most of all are,

> permenant ED, and the chance of being incontinent........Oh aye.....and

> being dead! don't fancy that much at all, I am only just 60, and would

> quite like a few more years:)

>

> OK, rambled on enough.

>

> Best to all, Charlie.

>

>

>

>

>

>

>

>

>

>

>

> > Hi all,

> > I just thought I would drop in and say hello, I have just been

> diagnosed with prostate cancer, I have had the MRI and the bone scan,

> and have been told informally that the cancer has not spread, from my

> prostate, which is I suppose a bit of good news. I am still waiting to

> meet with the medics, to discuss the best way forward for me, but to be

> honest, right now, I am still feeling a bit dazed / miserable, and very

> pi$$ed off! I have been having a look around the internet, but to be

> honest, it's almost a case of TMI!

> > They tell me that I have the cancer on 50% of one side of my

> prostate, I don't have any symptoms other than a bit of a weak stream

> and some ED, they have, on previous occasions been talking radical

> surgery, Keyhole (Robotic Surgery) in available to me, at a hospital

> about 50 miles from my home, and the gutted like a fish version is

> available to me here where I live. I aint very keen on either, though I

> have taken on board what they have said, in that it will cure the

> problem, it's what comes after I am having trouble with.

> > I am waiting for an appointment to discuss the options formally, so

> until then, I guess I will just have to mull things over.

> > Best to all, Charlie.

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

> Try it now.

> >

>

>

[Guest guest]

Hi Steve, many thanks for all the info, should give me something to

chew on for a while...

Best, Charlie.

> > > Hi all,

> > > I just thought I would drop in and say hello, I have just been

> > diagnosed with prostate cancer, I have had the MRI and the bone

scan,

> > and have been told informally that the cancer has not spread,

from my

> > prostate, which is I suppose a bit of good news. I am still

waiting to

> > meet with the medics, to discuss the best way forward for me, but

to be

> > honest, right now, I am still feeling a bit dazed / miserable,

and very

> > pi$$ed off! I have been having a look around the internet, but to

be

> > honest, it's almost a case of TMI!

> > > They tell me that I have the cancer on 50% of one side of my

> > prostate, I don't have any symptoms other than a bit of a weak

stream

> > and some ED, they have, on previous occasions been talking

radical

> > surgery, Keyhole (Robotic Surgery) in available to me, at a

hospital

> > about 50 miles from my home, and the gutted like a fish version

is

> > available to me here where I live. I aint very keen on either,

though I

> > have taken on board what they have said, in that it will cure the

> > problem, it's what comes after I am having trouble with.

> > > I am waiting for an appointment to discuss the options

formally, so

> > until then, I guess I will just have to mull things over.

> > > Best to all, Charlie.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile.

> > Try it now.

> > >

> >

> >

>

[Guest guest]

Dear Charlie,

I just love your sense of humor. Yes, the e-maill was ment for you. I wish you the best next Friday and you will be in my prayers.

Sincerely,

Sheila

-------------- Original message --------------

Thanks everybody for getting back to me.

Well this is as much as I know, dunno if it's enough, but, back in 2005, I went for a rectal examination, and they said that well yes, there is a bit of hardness there, but they would like to see me in six months.....well, it didn't happen, partly because they forgot to give me an appointment, and partly becuase things were at that time a bit hectic on my side, any way, at that time I had a PSA of 18.6

Then in May of 2007, I had a "minor" heart attack, more a shot across the bows really, but I was in Hospital for 6 days. Now I have been told that this may affect the Surgeons decision to give me radical surgery? but as I said to them, I am a big bloke, and physically robust, so what's the problem?

In February this year, my GP picked up on the fact that they hadn't given me another appointment at the Hospital and had me in for another Oh be joyful, rectal examination!......I hate all that finger poken, at least, I think it was his finger, it felt like it was his fist!.... Now it transpires he can feel a bit of a lump or nodule on one side, so I had another blood test, and that came back with a PSA of 15.4

So I had the biopsy, (I aint gonna talk about that!) .....which came back with a Gleason Scale of 7. No abnormality on the right side, but on the left, a 4+3, the 4 being the abnormal figure. I have been on the phone to the Hospital this afternoon, and they say that they are hoping to get me in to see my Consultant next Friday, and the Oncologist will be there as well, so we will be able to talk over my various options.

In brief, assuming that I can have radical surgery, I can go to Taunton, 50 miles away and have the keyhole surgery, in Hospital for two or three days, then home.

I can have the gutted like a fish version at Barnstaple, nearer, only 9 miles away, but in Hospital for about ten days!

I can have radio therapy, which means an 80 mile round trip to Exeter, 5 days a week for 7 weeks, that is about 2800 miles, and about 500 quid in fuel! As you can imagine, I am not taking that on board easily.

I did mention the radio active seeds implant thing, but they said that because of the amount of cancerous cells, they don't think it will be very effective?

So there it is folks, I suppose I will have to wait until next Friday and see what transpires? I think though that initially I will be asking if I have a bit of time to sort this in my head before making a decision about what if any choices I may have with regard to treatment. I may as well tell you, the two things that are bugging me most of all are, permenant ED, and the chance of being incontinent........Oh aye.....and being dead! don't fancy that much at all, I am only just 60, and would quite like a few more years

OK, rambled on enough.

Best to all, Charlie.

> Hi all,> I just thought I would drop in and say hello, I have just been diagnosed with prostate cancer, I have had the MRI and the bone scan, and have been told informally that the cancer has not spre

ad, from my prostate, which is I suppose a bit of good news. I am still waiting to meet with the medics, to discuss the best way forward for me, but to be honest, right now, I am still feeling a bit dazed / miserable, and very pi$$ed off! I have been having a look around the internet, but to be honest, it's almost a case of TMI! > They tell me that I have the cancer on 50% of one side of my prostate, I don't have any symptoms other than a bit of a weak stream and some ED, they have, on previous occasions been talking radical surgery, Keyhole (Robotic Surgery) in available to me, at a hospital about 50 miles from my home, and the gutted like a fish version is available to me here where I live. I aint very keen on either, though I have taken on board what they have said, in that it will cure the problem, it's what comes after I am having trouble with.> I am waiting for an appointment to discuss the options formally, so until then, I guess I will just have to mull things

over.> Best to all, Charlie.> > > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Charlie, I'm in England, just completing my four weeks of daily sessions of EBRT at University Hospital Coventry. This place uses Conformational RT (the beam is shaped to give max effect on the areas that need it and to minimise collateral damage) whereas in the next county (in which I live, actually) IMRT is the norm. For me, my choice is the better option, but it might not be for you. You need to find out about the two techniques. My brother recently went through the same thing at Swansea and experienced frequent pissing and some severe runs after a couple of weeks, but I'm bound to say that my experience has been fine. The Zolodex had reduced my nightime visits to the loo to zero before the EBRT, it has jumped to once a night with the RT and (apart from a bit of mucus when crapping between weeks one and two, which a tablet a day of imodium for four days cleared) I've been fine. In fact I've been

aware during the second half of the treatment that I'm lasting longer between pees during the day than for a couple of years. Also the internal lump that was there somewhere between my legs and made sitting on hard surfaces a bit uncomfortable has gone. So I deduce that radiotherapy for me is proving successful. I need to have this confirmed in my next PSA test, but before the RT, I had gone from 62.3 on diagnosis (Gleason 9 with no evidence of distant metastases, based on MRI and bone scans, or even effects outside the prostate, nearer to source) in October 2007 to 1.1 in February 2008 after some Zolodex, so I expect to be quite a bit lower. You may say (after looking at Partin tables) that my case is not one about which one could be most optimistic. But I am and I strongly advise staying strong and thinking positively about this thing. I was never offered surgery and I guess with my

scores I would not have been in the US either, but I'm glad of that. Why be cut up when you can be irradiated? It needn't be a bad experience - mine hasn't been. It will probably buy you a few years and may buy you the rest of your life,, decades even. It can be repeated and it doesn't exclude other therapies being used in the future. Try the YANA (you are not alone now) website and be inspired by the likes of Andy Ripley (ex England Rugger player, who is one of us) and get a sense of what is possible whatever your PCa status and yet understand also that PCa may return whatever treatment you have. My aim is to keep the beast at bay until I pop my clogs from something else (I'm a fit 64 yr old) or until a genuine cure becomes available out of current research and trials. Oh, and I don't know if the stuff will prove to be life extending after rigorous research, but I'm into daily pomegranate juice and

apart from tasting nice and giving me hope in a bottle, it seems to be lowering my blood pressure. My wife thinks I'm a more equable type these days. Is that down to less testosterone whizzing around my body, the EBRT or the pomegranate juice? Or all three? So, not all side effects are bad!!! Rgds Charlie wrote: Yes you do have a Barnstable.......but ours is Barnsta P le, though I believe that your Barnstable

was meant to be named after ours by the early settlers, probably got bastardised in usage? Hey, I am with you in spirit! Best, Charlie. >> sorry> > When you said Taunton I thought you ment Taunton Massachusetts in U.S.A.> And we have a Barnstable in Massachusetts also. thats funny almost hurt > myself typing all the Doc info. I don't think you live very close > after all.> > mike>

Sent from Yahoo! Mail.

A Smarter Email.

[Guest guest]

Hi Sheila,

Well I reckon that you have to laugh a bit, at least I do, it's the way I keep going......Thank you for your kind words, and I could always do with somebody putting in a word for me with him upstairs!

Best, Charlie.

> > Hi all,> > I just thought I would drop in and say hello, I have just been diagnosed with prostate cancer, I have had the MRI and the bone scan, and have been told informally that the cancer has not spread, from my prostate, which is I suppose a bit of good news. I am still waiting to meet with the medics, to discuss the best way forward for me, but to be honest, right now, I am still feeling a bit dazed / miserable, and very pi$$ed off! I have been having a look around the internet, but to be honest, it's almost a case of TMI! > > They tell me that I have the cancer on 50% of one side of my prostate, I don't have any symptoms other than a bit of a weak stream and some ED, they have, on previous occasions been talking radical surgery, Keyhole (Robotic Surgery) in available to me, at a hospital about 50 miles from my home, and the gutted like a fish version is available to me here where I live. I aint very keen on either, though I have taken on board what they have said, in that it will cure the problem, it's what comes after I am having trouble with.> > I am waiting for an appointment to discuss the options formally, so until then, I guess I will just have to mull things over.> > Best to all, Charlie.> > > > > > > > > > > > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> >>

[Guest guest]

Hi ,

Thanks for all that, don't quite know what to make of it all, but it seems like you have it worse than me!

Funny really, and I guess it's a small world, I am a Coventry kid by birth, I was born and brought up in Coventry, though I haven't been back since I was about 16, well only for the odd visit, and the last one of those was when my dad passed away......over 30 years ago now.

I think I said before that I reckon that there is an awful lot for me to take in, and some of the stuff you folks talk about is a bit beyond me for now, but I am slowly working my way through it. Hey! I wonder what that Pomegranate juice would be like with a drop of white rum?

Very best to ya.......Charlie.

> >> > sorry> > > > When you said Taunton I thought you ment Taunton Massachusetts in U.S.A.> > And we have a Barnstable in Massachusetts also. thats funny almost hurt > > myself typing all the Doc info. I don't think you live very close > > after all.> > > > mike> >> > > > > > > ---------------------------------> Sent from Yahoo! Mail.> A Smarter Email.>