RE: Update Biopsy or not to Biopsy

[Guest guest]

Ginny & Dave wrote:

> I had my first biopsy done two days ago and today the doctor

> called with the results from the lab.  I scored a Gleason 8.

> The good news is that it seems to be contained in the capsul.

> The doctor suggested a  few options to me on the phone.  (damn

> few)  I tried to ask about alternative options and he responded

> that if I screw around with alternatives it will kill me.  He

> recommended cut, burn or Cryo.  He said I have an agressive

> cancer and I need to deal with it right away.  I've read about

> cut & burn but I don't know about cryo.  Can anyone point me to

> info on cryo?  I suspect there would be a lot of adjacent

> tissue damage with that also.  ----I don't really want to do

> any of these things.  Can anyone recommend a good doctor to

> guide me through an alternative protocol?   Dave

Dave,

I'd like to ask that you post some more information about your

condition.  How old are you?  Are you otherwise in good health?

what is your last PSA?  Have other tests been done besides the

PSA and the biopsy that you know about?  Do you have information

about how many of the biopsy samples contained cancer (it will be

in the biopsy report)?

If you haven't done it yet, you should consider getting a second

opinion on the biopsy slides from a lab that specializes in that.

It will often be paid for by insurance and will give you more (or

less) assurance about your Gleason score - which is often hard to

determine and can vary from pathologist to pathologist.  The

Gleason score can be a significant consideration in choosing a

therapy.

Here are a couple of links about cryotherapy from what I take to

be reputable sources.  Unfortunately the information is rather

vague.

http://www.webmd.com/prostate-cancer/guide/cryotherapy-prostate-cancer-treatment

http://emedicine.medscape.com/article/458187-overview

One reason for the vagueness is that, apparently, no studies have

been done comparing cryotherapy with other therapies.  I also

don't know if there are any studies specifically looking at

cryotherapy for high risk cancers - of which Gleason 8 is thought

to be one.

Anecdotal case reports are of no scientific value but, for

whatever it's worth (not much), I recall two men who have had

cryotherapy.  It worked for one and not for the other, who was

left completely impotent and still with prostate cancer.

If it were me, I would definitely want to talk to a radiation

oncologist and a surgeon.  You can probably find some in your

area that have a large number or procedures under their belts and

good reputations.  Cryotherapy specialists are much harder to

find since, according to the webmd article above, only 2% of

urologists have experience with it.

Whatever therapy you choose, it's vitally important to pick the

best, most experienced doctor that you can.  The best doctors get

significantly better outcomes, both for cancer control and side

effects, as compared to run-of-the-mill doctors.  Under any

circumstances, you want a specialist who specializes in prostate

cancer treatment, not a general urologist who treats every kind

of urological problem or a radiation oncologist who treats every

kind of cancer and hasn't done a lot of prostate cancer

treatment.  The first shot at the cancer is most likely the one

that can cure you.  You only get one first shot and it should be

from the best marksman you can find.

One issue with Gleason 8 cancer is that capsule penetration is

common with tumors extending outside the prostate gland itself.

I would ask the doctors how they will look for that and what they

would do about it.  There may be an advantage for radiation in

this respect because radiation can treat the area around the

gland as well as the prostate itself, and it's not clear to me

how well surgery or cryotherapy can do that.

There are very useful websites I can recommend including:

    http://www.cancer.gov

    http://www.prostate-cancer.org

    http://yananow.org

    http://www.ustoowichita.org/

The last two on the list are largely maintained by two members of

this group, Terry Herbert (yananow) and Chuck Maack

(ustoowichita).  I think both sites have a lot of good stuff.

I hope this helps and I wish you the best of luck.

    Alan

[Guest guest]

Dave,

You’ve had good advice from Alan and Chuck.

Can I just add one point. When you use the term “alternative: therapies, the

medical word tends to think of the many quack doctors and their unproven

methods. I think what you mean is the alternative mainstream therapies available

to you? As in “What alternatives do I have to deal with this diagnosis?â€

I don’t know if you went to my site YANA – You Are Not Alone Now at http://www.yananow.org when

I suggested that the other day. I’m guessing you didn’t, but I’ll have one more

try at pointing you to information that might be useful to you. One page lists

all the treatment choices http://www.yananow.org/choices.shtml

.. The list includes the various forms of radiation, including PBT (Proton Beam

Therapy) which many doctors will not mention to you, but which may be a good

choice. There is a link to Cryotherapy there.

The second thing you might like to do is

to read the experiences of other men who had a Gleason Score of 8. To do that

you go to http://www.yananow.org/query_stories.php

and choose Gleason Score 8 in the choices of stories. You will find that there

are 86 men who have set out what they chose and why. Most of the men will

respond to any specific question you may have had. Only one man with a Gleason

Score of 8 chose cryotherapy. His story is here http://www.yananow.org/display_story.php?id=759

.. Cryotherapy is not the first choice for most men and this is shown  by the

fact that only 8 men out of the 1,100+ who have contributed to the Yana site chose Cryotherapy.

All the best

Prostate men need enlightening, not

frightening

Terry

Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Ginny & Dave

Sent: Friday, 1 June 2012 11:43 AM

To: ProstateCancerSupport

Subject:

Update Biopsy or not to Biopsy



 

I had my first

biopsy done two days ago and today the doctor called with the results from the

lab. I scored a Gleason 8. The good news is that it seems to be

contained in the capsul. The doctor suggested a few options to me

on the phone. (damn few) I tried to ask about alternative options

and he responded that if I screw around with alternatives it will kill

me. He recommended cut, burn or Cryo. He said I have an agressive

cancer and I need to deal with it right away. I've read about cut &

burn but I don't know about cryo. Can anyone point me to info on

cryo? I suspect there would be a lot of adjacent tissue damage with that

also. ----I don't really want to do any of these things. Can

anyone recommend a good doctor to guide me through an alternative

protocol? Dave

[Guest guest]

Dave, Sorry to hear of your bad report. It is estimated that 30 million men have prostate cancer, so you have a lot of company. A

month ago, I received a call from my doctor with the bad news from my biopsy, Gleason 4+3=7. I requested the cores be sent to a Dr. Epstein at

s Hopkins for a second opinion. Dr. Epstein's report downgraded the

Gleason to a 3+3=6. My friend's brother is a pathologist and he said Dr. Epstein is the best prostate pathologist he knows. Get a second opinion. I

have decided to have surgery to remove the prostate. My research showed

I have a 25% chance of dieing from prostate cancer without any treatment and a less than 1% chance with surgery. Pick the option with the best cure rate. Another

reason for surgery over radiation is radiation is possible after surgery. It gives you another treatment option if you need it later. There are people in this group with a lot of information. They helped me and I am sure they will help you. Charlie D.

To: ProstateCancerSupport Sent: Thursday, May 31, 2012 9:42 PM Subject: Update Biopsy or not to Biopsy



I had my first biopsy done two days ago and today the doctor called with the results from the lab. I scored a Gleason 8. The good news is that it seems to be contained in the capsul. The doctor suggested a few options to me on the phone. (damn few) I tried to ask about alternative options and he responded that if I screw around with alternatives it will kill me. He recommended cut, burn or Cryo. He said I have an agressive cancer and I need to deal with it right away. I've read about cut & burn but I don't know about cryo. Can anyone point me to info on cryo? I suspect there would be a lot of adjacent tissue damage with that also. ----I don't really want to do any of these things. Can anyone recommend a good doctor to guide me through an alternative protocol? Dave

[Guest guest]

Thank You Terry, Alan, Chuck & Carl for your rapid responses. I have been reading so -so much. It's all so complicated. There are so many different tests and treatments. I think I have to admit to myself that it's more than I can sort out in my old lyme brain. I think I have to find a doctor I can trust quickly and just do what he tells me and pray. I just got off the phone with an old friend who is a retired Urologist, Arthur Cohen. Dr. Cohen was very highly regarded in his field. He recommended that I talk with his doctor, Dr. Forest Quimby. He said tell Forest I sent you so I called and made an appointment.

Alan asked that I post a little more info about me so I have attached a copy of the biopsy report. In a nutshell, I consider myself to be in fairly decent shape for my age.(67) The only other health problem I know of is late stage lyme disease. The lyme has raised hell with my memory for a long time. I come from Scotch-English ancestry and like a simple meat & potatoes diet. I am near six foot tall, weigh 230lbs but not real fat. I work in the woods and I have my own saw mill. I live at the end of a dead end road on top of a mountain above a ski area. My driveway is a half mile long. I heat the house with an outside wood furnace, cut my own wood and wood for others. I hate spending any good weather time here in front of the computer when I should be out there working. If anyone would like to know more about my life in the woods or see some pictures please contact me direct. --Dave

Dave,I'd like to ask that you post some more information about yourcondition. How old are you? Are you otherwise in good health?what is your last PSA? Have other tests been done besides thePSA and the biopsy that you know about? Do you have informationabout how many of the biopsy samples contained cancer (it will bein the biopsy report)?If you haven't done it yet, you should consider getting a secondopinion on the biopsy slides from a lab that specializes in that.It will often be paid for by insurance and will give you more (orless) assurance about your Gleason score - which is often hard todetermine and can vary from pathologist to pathologist. TheGleason score can be a significant consideration in choosing atherapy.Here are a couple of links about cryotherapy from what I take tobe reputable sources. Unfortunately the information is rathervague.http://www.webmd.com/prostate-cancer/guide/cryotherapy-prostate-cancer-treatmenthttp://emedicine.medscape.com/article/458187-overviewOne reason for the vagueness is that, apparently, no studies havebeen done comparing cryotherapy with other therapies. I alsodon't know if there are any studies specifically looking atcryotherapy for high risk cancers - of which Gleason 8 is thoughtto be one.Anecdotal case reports are of no scientific value but, forwhatever it's worth (not much), I recall two men who have hadcryotherapy. It worked for one and not for the other, who wasleft completely impotent and still with prostate cancer.If it were me, I would definitely want to talk to a radiationoncologist and a surgeon. You can probably find some in yourarea that have a large number or procedures under their belts andgood reputations. Cryotherapy specialists are much harder tofind since, according to the webmd article above, only 2% ofurologists have experience with it.Whatever therapy you choose, it's vitally important to pick thebest, most experienced doctor that you can. The best doctors getsignificantly better outcomes, both for cancer control and sideeffects, as compared to run-of-the-mill doctors. Under anycircumstances, you want a specialist who specializes in prostatecancer treatment, not a general urologist who treats every kindof urological problem or a radiation oncologist who treats everykind of cancer and hasn't done a lot of prostate cancertreatment. The first shot at the cancer is most likely the onethat can cure you. You only get one first shot and it should befrom the best marksman you can find.One issue with Gleason 8 cancer is that capsule penetration iscommon with tumors extending outside the prostate gland itself.I would ask the doctors how they will look for that and what theywould do about it. There may be an advantage for radiation inthis respect because radiation can treat the area around thegland as well as the prostate itself, and it's not clear to mehow well surgery or cryotherapy can do that.There are very useful websites I can recommend including: http://www.cancer.gov http://www.prostate-cancer.org http://yananow.org http://www.ustoowichita.org/The last two on the list are largely maintained by two members ofthis group, Terry Herbert (yananow) and Chuck Maack(ustoowichita). I think both sites have a lot of good stuff.I hope this helps and I wish you the best of luck. Alan

[Guest guest]

Dave, I suspect you may have forgotten to attach the biopsy report since I couldn’t find it on my incoming. If you resend, could you also include our email addresses in the “To” line in addition to the prostatecancersupport list? And now you have my curiosity up….where, in fact, do you live? Chuck Always as close as the other end of your computer to help address any prostate cancer concerns. " What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others. " (Chuck) Maack - Rmd, PCaA, PCaM Email: maack1@... PCa Help: " Observations " http://www.theprostateadvocate.com From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Ginny & DaveSent: Friday, June 01, 2012 9:43 AMTo: ProstateCancerSupport Subject: Re: Update Biopsy or not to Biopsy Thank You Terry, Alan, Chuck & Carl for your rapid responses. I have been reading so -so much. It's all so complicated. There are so many different tests and treatments. I think I have to admit to myself that it's more than I can sort out in my old lyme brain. I think I have to find a doctor I can trust quickly and just do what he tells me and pray. I just got off the phone with an old friend who is a retired Urologist, Arthur Cohen. Dr. Cohen was very highly regarded in his field. He recommended that I talk with his doctor, Dr. Forest Quimby. He said tell Forest I sent you so I called and made an appointment. Alan asked that I post a little more info about me so I have attached a copy of the biopsy report. In a nutshell, I consider myself to be in fairly decent shape for my age.(67) The only other health problem I know of is late stage lyme disease. The lyme has raised hell with my memory for a long time. I come from Scotch-English ancestry and like a simple meat & potatoes diet. I am near six foot tall, weigh 230lbs but not real fat. I work in the woods and I have my own saw mill. I live at the end of a dead end road on top of a mountain above a ski area. My driveway is a half mile long. I heat the house with an outside wood furnace, cut my own wood and wood for others. I hate spending any good weather time here in front of the computer when I should be out there working. If anyone would like to know more about my life in the woods or see some pictures please contact me direct. --DaveDave,I'd like to ask that you post some more information about yourcondition. How old are you? Are you otherwise in good health?what is your last PSA? Have other tests been done besides thePSA and the biopsy that you know about? Do you have informationabout how many of the biopsy samples contained cancer (it will bein the biopsy report)?If you haven't done it yet, you should consider getting a secondopinion on the biopsy slides from a lab that specializes in that.It will often be paid for by insurance and will give you more (orless) assurance about your Gleason score - which is often hard todetermine and can vary from pathologist to pathologist. TheGleason score can be a significant consideration in choosing atherapy.Here are a couple of links about cryotherapy from what I take tobe reputable sources. Unfortunately the information is rathervague.http://www.webmd.com/prostate-cancer/guide/cryotherapy-prostate-cancer-treatmenthttp://emedicine.medscape.com/article/458187-overviewOne reason for the vagueness is that, apparently, no studies havebeen done comparing cryotherapy with other therapies. I alsodon't know if there are any studies specifically looking atcryotherapy for high risk cancers - of which Gleason 8 is thoughtto be one.Anecdotal case reports are of no scientific value but, forwhatever it's worth (not much), I recall two men who have hadcryotherapy. It worked for one and not for the other, who wasleft completely impotent and still with prostate cancer.If it were me, I would definitely want to talk to a radiationoncologist and a surgeon. You can probably find some in yourarea that have a large number or procedures under their belts andgood reputations. Cryotherapy specialists are much harder tofind since, according to the webmd article above, only 2% ofurologists have experience with it.Whatever therapy you choose, it's vitally important to pick thebest, most experienced doctor that you can. The best doctors getsignificantly better outcomes, both for cancer control and sideeffects, as compared to run-of-the-mill doctors. Under anycircumstances, you want a specialist who specializes in prostatecancer treatment, not a general urologist who treats every kindof urological problem or a radiation oncologist who treats everykind of cancer and hasn't done a lot of prostate cancertreatment. The first shot at the cancer is most likely the onethat can cure you. You only get one first shot and it should befrom the best marksman you can find.One issue with Gleason 8 cancer is that capsule penetration iscommon with tumors extending outside the prostate gland itself.I would ask the doctors how they will look for that and what theywould do about it. There may be an advantage for radiation inthis respect because radiation can treat the area around thegland as well as the prostate itself, and it's not clear to mehow well surgery or cryotherapy can do that.There are very useful websites I can recommend including: http://www.cancer.gov http://www.prostate-cancer.org http://yananow.org http://www.ustoowichita.org/The last two on the list are largely maintained by two members ofthis group, Terry Herbert (yananow) and Chuck Maack(ustoowichita). I think both sites have a lot of good stuff.I hope this helps and I wish you the best of luck. AlanNo virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2178 / Virus Database: 2425/5037 - Release Date: 05/31/12

[Guest guest]

Dave,First you need to have a second opinion on the biopsy slides. Pathology is subjective and you need to have another set of eyes on the tissue. Go to the malecare web page (malecare.org) where you can read how to arrange for a second reading. Do this before you make any decisions about treatment. Get a copy of the biopsy report and keep this one, the biopsy second opinion as well as all future reports on any test have performed. How can the doctor tell you that the cancer is contained in the gland, a biopspy can not tell you that. Have you had any scans, what is your current PSA and its history, how many slides had cancer and what was the percentage of cancer in each of the positive slides?Cryotherapy has made huge progress in the last 5 years, although not often considered, it is reputable and can be efective with less side effects if you are a good candidate for it. In the north east U.S. I would recommend Dr. Arron Katz, Director of Urology, at Winthrop Hospital in Mineola, NY. He has probably performed more of these surgeries than almost anyone else I know about. Before making any decisions you need to take your time and research all the options. Bcome familiar with the potential side effects each treatment could cause. Go to some support groups and speak with others who have had these treatments, but remember that each man is different and each man will decide what is best for them given their study of possible treatments. T Nowak, M.A., M.S.W.Director of Advocacy & Advanced Prostate Cancer ProgramsMalecarewww.malecare.comwww.advancedprostatecancer.net



I had my first biopsy done two days ago and today the doctor called with the results from the lab. I scored a Gleason 8. The good news is that it seems to be contained in the capsul. The doctor suggested a few options to me on the phone. (damn few) I tried to ask about alternative options and he responded that if I screw around with alternatives it will kill me. He recommended cut, burn or Cryo. He said I have an agressive cancer and I need to deal with it right away. I've read about cut & burn but I don't know about cryo. Can anyone point me to info on cryo? I suspect there would be a lot of adjacent tissue damage with that also. ----I don't really want to do any of these things. Can anyone recommend a good doctor to guide me through an alternative protocol? Dave

[Guest guest]

Dave:Don't rush into anything !! After I was diagnosed I listened to the doctor and went to radiation (IMRT) a lot sooner then I should have. The rational for IMRT was that the MRI showed the tumor was into the seminal vesicles. I was informed that the chances of surgery getting it all with seminal involvement was slim. Your Doctor sounds like an ass. I had a couple angina attacks several years ago and the cardiologist gave me that line. "You could die on the way home" I picked EECP and he complained that Medicare doesn't pay much for the procedure and he could make more in a half hour then in the seven week treatment.If I had it to do over I would have spent more time researching the disease before I did anything. It had been a long time since I had been in school and the fact that I had a Lupron shot to shrink my prostate made research very difficult. I would read Pub-Med abstracts over and over and not comprehend them. Lupron made me DUMB. If you can spend a lot of time doing research. If you work eight hours day for money -- Shouldn't you put at least that much time working for your life? I would also recommend when not studying have fun - dance - visit Disney World - take a cruse - Walk along the beach arm in arm and watch the sun come up or set which ever. Work on you and your wife's bucket list. I don't mean to be a fatalist but we started working on our bucket list 51 years ago when we got married. Rosie and I are still working on it. Prostate cancer is not a death sentence - it could be a wakeup call.Henry/////////////// To: ProstateCancerSupport Sent: Thursday, May 31, 2012 9:42 PM Subject: Update Biopsy or not to Biopsy



I had my first biopsy done two days ago and today the doctor called with the results from the lab. I scored a Gleason 8. The good news is that it seems to be contained in the capsul. The doctor suggested a few options to me on the phone. (damn few) I tried to ask about alternative options and he responded that if I screw around with alternatives it will kill me. He recommended cut, burn or Cryo. He said I have an agressive cancer and I need to deal with it right away. I've read about cut & burn but I don't know about cryo. Can anyone point me to info on cryo? I suspect there would be a lot of adjacent tissue damage with that also. ----I don't really want to do any of these things. Can anyone recommend a good doctor to guide me through an alternative protocol? Dave

[Guest guest]

Henry wrote:

.... <other good advice elided> ...

> I would also recommend when not studying have fun - dance -

> visit Disney World - take a cruse -  Walk along the beach arm

> in arm and watch the sun come up or set which ever. Work on you

> and your wife's bucket list. I don't mean to be a fatalist but

> we started working on our bucket list 51 years ago when we got

> married. Rosie and I are still working on it. Prostate cancer

> is not a death sentence - it could be a wakeup call.

I particularly like that advice.

    Alan