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Posted 6/14/2018 1:53 PM (GMT 0)
Hello everyone,

I'm really afraid... I was recently diagnose with prostate cancer.
the doctor performed a biopsy a couple of weeks ago and the pathology report came back with all 12 cores positive 100% with CARCINOMA.
He claims this is a very aggressive cancer and a CT SCAN and BONE SCAN need to be performed immediately in order for him to have a better understanding and together make the right decision.
I'll have the CT and BONE SCAN on Monday
Doctor is telling me they do not have a Gleason Score because it's a CARCINOMA and usually it's an ADENOCARCINOMA, so my wife and I are really worried. We have 3 kids and do not know what to expect.
Can someone give me some info on this please? confused
PS:
Sorry, forgot to mention, I'm 43 years old and had a PSA done this past Friday. It came back .5 from .9
Doctor prescribed FLOMAX a month ago since I've been having problems urinating.

Post Edited (PAPUN) : 6/14/2018 10:32:42 AM (GMT-6)

Posted 6/14/2018 2:02 PM (GMT 0)
Those with knowledge will follow shortly.
I will say this, just take a few deep breaths and slow down a bit. We all went into panic mode when first diagnosed. I understand how you are feeling and so will all of the others.

You will receive all of the info, consolation and support that you need.

I wish you well and regret your having to be here and that I am not knowledgeable enough to start giving you the info you need.

Roger
Posted 6/14/2018 2:29 PM (GMT 0)
Thanks for your kind words. Truly appreciate it!
Posted 6/14/2018 2:45 PM (GMT 0)
FYI

Fourth paragraph.

/www.typesof.com/types-of-prostate-cancer/
Posted 6/14/2018 2:58 PM (GMT 0)
First thing to do is to send your biopsy slides out to Dr. Epstein at Johns-Hopkins and get a second opinion as to your pathology..You want to be SURE about what you are dealing with...Your Urologist will do this for you..
Posted 6/14/2018 3:50 PM (GMT 0)

alephnull said...
FYI

Fourth paragraph.

/www.typesof.com/types-of-prostate-cancer/


alephnull,

Thanks for this valuable information! Unfortunately seems like I'm in real trouble!
Posted 6/14/2018 3:54 PM (GMT 0)
Sorry to hear this and most of us understand how you feel. You are in the right place for support, education, experiences. Wishing you the Best
Posted 6/14/2018 4:04 PM (GMT 0)

JkorourkeRN for husband said...
Sorry to hear this and most of us understand how you feel. You are in the right place for support, education, experiences. Wishing you the Best

Thanks!
Posted 6/14/2018 4:18 PM (GMT 0)

Fairwind said...
First thing to do is to send your biopsy slides out to Dr. Epstein at Johns-Hopkins and get a second opinion as to your pathology..You want to be SURE about what you are dealing with...Your Urologist will do this for you..

Thanks for the info!
Posted 6/14/2018 4:28 PM (GMT 0)
papun,
So sorry to hear. it appears that you have a rare variant of prostate cancer that produces little or no psa. With the tumor volume you have psa should be 10 or greater and yours is <1.
This is a rare and specialized cancer that needs to be treated by an oncologist specializing in prostate cancer variants, like Dr Stephen Strum, or Dr Snuffy Myers in VA.
Good idea sending your slides to Epstien and concentrate on finding a specialized MO, because this is way out of the league of a regular urologist or community practice hospital.
Best of luck.
Posted 6/14/2018 5:00 PM (GMT 0)

John T said...
papun,
So sorry to hear. it appears that you have a rare variant of prostate cancer that produces little or no psa. With the tumor volume you have psa should be 10 or greater and yours is <1.
This is a rare and specialized cancer that needs to be treated by an oncologist specializing in prostate cancer variants, like Dr Stephen Strum, or Dr Snuffy Myers in VA.
Good idea sending your slides to Epstien and concentrate on finding a specialized MO, because this is way out of the league of a regular urologist or community practice hospital.
Best of luck.

Great Info John T!

Is there a place where I could find more information about this particular type of PC?
I believe I do not have plenty of time as I'm already having lower back and leg pains that bothers me mostly while asleep.
Posted 6/14/2018 6:52 PM (GMT 0)
PAPUN-

I'm sorry to hear about that diagnosis. There are actually several different kinds of carcinomas that affect the prostate. Do you know which kind it is? Although they are all rare, the most prevalent kind is a group of carcinomas that are collectively termed "neuroendocrine carcinomas" that include small cell and large cell. There is also a signet ring cell carcinoma, basal cell carcinoma, mucinous carcinoma, and sqamous cell carcinoma. It is also possible to have a "mixed type."

In general, the treatment used is a platinum-based chemotherapy (e.g., carboplatin), often combined with another kind of chemo like etoposide or irinotecan.

If it is a neuroendocrine type, here is an article with links to clinical trials:

/pcnrv.blogspot.com/2016/12/small-cell-prostate-cancer-clinical.html

You should be treated by a medical oncologist at a very high volume center that has treated a number of patients with your diagnosis. If you say what city you're in, we may be able to suggest someone. My first choice would be nuclear medicine from Uwe Haberkorn at the University of Heidelberg.
Posted 6/14/2018 7:25 PM (GMT 0)

Tall Allen said...
PAPUN-

I'm sorry to hear about that diagnosis. There are actually several different kinds of carcinomas that affect the prostate. Do you know which kind it is? Although they are all rare, the most prevalent kind is a group of carcinomas that are collectively termed "neuroendocrine carcinomas" that include small cell and large cell. There is also a signet ring cell carcinoma, basal cell carcinoma, mucinous carcinoma, and sqamous cell carcinoma. It is also possible to have a "mixed type."

In general, the treatment used is a platinum-based chemotherapy (e.g., carboplatin), often combined with another kind of chemo like etoposide or irinotecan.

If it is a neuroendocrine type, here is an article with links to clinical trials:

/pcnrv.blogspot.com/2016/12/small-cell-prostate-cancer-clinical.html

You should be treated by a medical oncologist at a very high volume center that has treated a number of patients with your diagnosis. If you say what city you're in, we may be able to suggest someone. My first choice would be nuclear medicine from Uwe Haberkorn at the University of Heidelberg.

Tall Allen,

Thanks for the info.

I live in Miami, Florida...I wish I could afford going to Germany, lol, I could barely afford going out my city.
Posted 6/14/2018 7:37 PM (GMT 0)

PAPUN said...
Is there a place where I could find more information about this particular type of PC?
I believe I do not have plenty of time as I'm already having lower back and leg pains that bothers me mostly while asleep.


Panic is understandable. that said....please use caution in diagnosing lower back pain leg pains as cancer at this point. In the 3 years I've been around here PAPUN, probably 75%....3 out of 4 men....who show up with all kinds of this stuff....from the most benign to the most aggressive....all have one thing in common....

"My lower back hurts and my leg hurts. I think it's spread". there's something about this stuff that brings out the most stress most of us have ever encountered....and it makes us hurt in our lower back. It tightens muscles and discs get squeezed....causing leg pain. I'm not saying this is what it is in your case....what I *am* saying is.....this is a VERY common complaint among the newly diagnosed.

(I think it also comes from reading the internet) Just try and not jump to conclusions is all I'm trying to say....

Hang in there man.
Posted 6/14/2018 8:18 PM (GMT 0)
Who are you seeing down here, Papun?

I'm in Davie...there are precious few top caliber urologists locally. I've seen most of them shakehead
Posted 6/14/2018 8:36 PM (GMT 0)

island time said...

PAPUN said...
Is there a place where I could find more information about this particular type of PC?
I believe I do not have plenty of time as I'm already having lower back and leg pains that bothers me mostly while asleep.


Panic is understandable. that said....please use caution in diagnosing lower back pain leg pains as cancer at this point. In the 3 years I've been around here PAPUN, probably 75%....3 out of 4 men....who show up with all kinds of this stuff....from the most benign to the most aggressive....all have one thing in common....

"My lower back hurts and my leg hurts. I think it's spread". there's something about this stuff that brings out the most stress most of us have ever encountered....and it makes us hurt in our lower back. It tightens muscles and discs get squeezed....causing leg pain. I'm not saying this is what it is in your case....what I *am* saying is.....this is a VERY common complaint among the newly diagnosed.

(I think it also comes from reading the internet) Just try and not jump to conclusions is all I'm trying to say....

Hang in there man.

Totally understand your point Island Time. The reason I say this about the pain is because it's the kind of pain that goes away and the comes back, it's a stinging pain around the hip bones like being touched with a needle tip, then it goes down to my legs.
I hope to be 100% wrong.
Posted 6/14/2018 8:39 PM (GMT 0)

garyi said...
Who are you seeing down here, Papun?

I'm in Davie...there are precious few top caliber urologists locally. I've seen most of them shakehead

Working with Jonathan L. Masel M.D.
Posted 6/14/2018 9:06 PM (GMT 0)
PAPUN, here is a source for some information on small cell carcinoma of the prostate, www.cancerresearchuk.org/about-cancer/prostate-cancer/types-grades/small-cell-prostate-cancer , although (as Tall Allen points out) there are other types of prostate carcinomas.
Posted 6/14/2018 10:43 PM (GMT 0)
Florida has several top notch treatment facilities that specialize in all types of prostate cancer..One, a pioneer in radiation treatment is Dattoli in Sarasota..

http://www.dattoli.com/
Posted 6/14/2018 11:55 PM (GMT 0)

PAPUN said...
I live in Miami, Florida...I wish I could afford going to Germany, lol, I could barely afford going out my city.


In Miami-Dade/Broward you've got two reliable PCa centers: Sylvester/UMiami-Jackson and Cleveland Clinic in Weston. Garyi (who answered you earlier) did salvage radiation treatment at Cleveland Clinic and had a good experience there. If you're willing to travel farther, Moffitt in Tampa and UF in Gainesville.

If you have an aggressive small cell carcinoma or another one of the rarer types of PCa, as your low PSA suggests, ask Dr. Masel for a referral to a medical oncologist with expertise in it. I see where Dr. Masel is a graduate of UMiami and did his residency at USF, so one would hope he knows who's who in PCa treatment in South Florida.

It would be helpful if you would post details of your pathology report. If you have it scanned, you can cut and paste it here.
Posted 6/15/2018 12:46 AM (GMT 0)
I'm sorry...Someone just gave me a bunch of info a minute ago and I tried to replied using my cell phone and deleted the post by mistake. I believe this person tried to tell me about Cleveland Clinic and UM in Miami, but I don't remember the rest of the info.
I'll try to post my pathology report in a bit to see if you can help me understand it.
Sorry again for deleting your post
Posted 6/15/2018 12:57 AM (GMT 0)

Froggy88 said...
PAPUN, here is a source for some information on small cell carcinoma of the prostate, www.cancerresearchuk.org/about-cancer/prostate-cancer/types-grades/small-cell-prostate-cancer , although (as Tall Allen points out) there are other types of prostate carcinomas.

Thanks for the info! truly appreciate it!
Posted 6/15/2018 1:03 AM (GMT 0)

Fairwind said...
Florida has several top notch treatment facilities that specialize in all types of prostate cancer..One, a pioneer in radiation treatment is Dattoli in Sarasota..

http://www.dattoli.com/

Great info, Thanks!
Posted 6/15/2018 1:19 AM (GMT 0)
A few of those clinical trials are recruiting in Florida:

This one at UF Gainesville and Moffitt:
/clinicaltrials.gov/ct2/show/study/NCT02709889

This one at Boca Raton Regional hospital, Mayo Jacksonville, and Moffitt:
/clinicaltrials.gov/ct2/show/NCT02475213

This one at Moffitt:
/clinicaltrials.gov/ct2/show/NCT01391143

I suggest you call the lead investigators yourself and see if you qualify for any of them. They will talk to patients.

Even without a clinical trial, your doctor can prescribe a somatostatin if your path report showed receptors for it. This year, the FDA approved a radiopharmaceutical (Lu-177-DOTATATE) for neuroendocrine tumors in the midgut. Your medical oncologist may be able to convince your insurance company to let you have it if you are positive for somatostatin receptors. If so, I think this is your best treatment available in the US.

/www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm594043.htm
Posted 6/15/2018 1:46 AM (GMT 0)

Saipan Paradise said...

PAPUN said...
I live in Miami, Florida...I wish I could afford going to Germany, lol, I could barely afford going out my city.


In Miami-Dade/Broward you've got two reliable PCa centers: Sylvester/UMiami-Jackson and Cleveland Clinic in Weston. Garyi (who answered you earlier) did salvage radiation treatment at Cleveland Clinic and had a good experience there. If you're willing to travel farther, Moffitt in Tampa and UF in Gainesville.

If you have an aggressive small cell carcinoma or another one of the rarer types of PCa, as your low PSA suggests, ask Dr. Masel for a referral to a medical oncologist with expertise in it. I see where Dr. Masel is a graduate of UMiami and did his residency at USF, so one would hope he knows who's who in PCa treatment in South Florida.

It would be helpful if you would post details of your pathology report. If you have it scanned, you can cut and paste it here.

Wao, Great info! Cleveland Clinic and UM are relatively near my neck of the woods! Thanks so much!
I've been trying to paste the pic of my pathology report but can't make it happen! will continue to try.
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