Newly Diagnosed with Gleason Scores of 9 and 10

Gleason Score 9 and 10

hopeful and optimistic said:

.

When you mention prostate oncologist, I assume that you are referring to a medical oncologist, who in my laymans opinion is now most appropriate.

Best wishes for happy and HEALTHY New Year for you and your family.

No..Actually a urologist who only deals with prostate cancer

Hi Hopeful,

Actually, we are seeing a doc who is a urologist but only treats prostate cancer and kidney cancer patients. 

I really appreciat the happy and HEALTHY New Year...that is certainly our resolution for this coming year...we are eager to see 2016 come to an end. May 2017 continue to be HEALTHY and happy for you and yours as well.

Thanks!

Butch1969

Gleason Score 9 and 10 said:

Encouraging News Today

My husband and I submitted a number of questions to his doctor via email last night and got back some encouraging news today! The best news was our questioning the "Signet Ring Appearance". The doc followed up with the pathologist about this and she had actually stained the samples and found they are "normal" prostate cancer cells, not signet ring! It has been the "appearance" of the rings, but not actual rings! (Why in the world that was on the path report, I am not sure!)

In addition, given the type of cells, his PSA, high gleason scores, and looking at a CT that was done just a few months ago, he feels it is no more than a 5% chance that the cancer has metatasized at this point. This is also a result of them  knowing that on the right lobe, due to the number of cores studied, they feel the cancer is only in about 8% of that lobe. Further, since we had a CT done just a few months ago, they are not going to repeat now....just the bone scan and then we will go from there. If that comes back clean, I am still going to ask for a PET/CT or MRI to be sure we aren't missing seeing anything. I think my husband will be supportive of this as well. 

Hanging onto this good news while waiting for more testing. I know from other experiences this journey is a roller coaster and it has been so far, but I will take the hills as they come!

News in .d Then

you might tryMD Anderson in Texas

you should be clear about the problem and how serious it is.  then proceed to kill the cancer.  And my advice is to take to most aggressive action. 

hopeful and optimistic

Gleason Score 9 and 10 said:

No..Actually a urologist who only deals with prostate cancer

Hi Hopeful,

Actually, we are seeing a doc who is a urologist but only treats prostate cancer and kidney cancer patients. 

I really appreciat the happy and HEALTHY New Year...that is certainly our resolution for this coming year...we are eager to see 2016 come to an end. May 2017 continue to be HEALTHY and happy for you and yours as well.

Thanks!

To emphasize

a urologist is biased toward surgery( you have already seen a urologist), while a medical oncologist is more objective, and is most qualified to administer hormone therapy, which with an aggressive Gleason as in your case is generally  necessary.

I also note that you have not had advanced imaging tests ( MRI and PET scans) which may show cancer outside the prostate. The results of these tests will contribute to your   treatment decision. 

Sorry to be preaching at you.

Gleason Score 9 and 10

hopeful and optimistic said:

To emphasize

a urologist is biased toward surgery( you have already seen a urologist), while a medical oncologist is more objective, and is most qualified to administer hormone therapy, which with an aggressive Gleason as in your case is generally  necessary.

I also note that you have not had advanced imaging tests ( MRI and PET scans) which may show cancer outside the prostate. The results of these tests will contribute to your   treatment decision. 

Sorry to be preaching at you.

Agree...not preaching at all...appreciate the advice

Hopeful,

Thank you for your words of caution. With the Barnes doc, we will be asking for the more advanced scans (both PET and MRI). I also appreicated the reminder about the medical oncologist. From what I have understood about Wash U./Barnes they approach each case with a urologist, medical oncologist, radiation specialist, and other clinicians as needed to treat each case individually. We will be asking a lot of questions for sure, with the PET and MRI at the top of the list.

Thanks again for your advice...always welcome.

hopeful and optimistic

Gleason Score 9 and 10 said:

Agree...not preaching at all...appreciate the advice

Hopeful,

Thank you for your words of caution. With the Barnes doc, we will be asking for the more advanced scans (both PET and MRI). I also appreicated the reminder about the medical oncologist. From what I have understood about Wash U./Barnes they approach each case with a urologist, medical oncologist, radiation specialist, and other clinicians as needed to treat each case individually. We will be asking a lot of questions for sure, with the PET and MRI at the top of the list.

Thanks again for your advice...always welcome.

very good

us news and world report hospital ranking by specialty, oncology, 2017.....wash u/ barnes #15

http://health.usnews.com/best-hospitals/rankings/cancer

 

Max Former Hodgkins Stage 3

Gleason Score 9 and 10 said:

Agree...not preaching at all...appreciate the advice

Hopeful,

Thank you for your words of caution. With the Barnes doc, we will be asking for the more advanced scans (both PET and MRI). I also appreicated the reminder about the medical oncologist. From what I have understood about Wash U./Barnes they approach each case with a urologist, medical oncologist, radiation specialist, and other clinicians as needed to treat each case individually. We will be asking a lot of questions for sure, with the PET and MRI at the top of the list.

Thanks again for your advice...always welcome.

Slight Confusion

Gleason,

If Barnes always uses a team approach, including a medical oncologist and radiation oncologist, why are you having to arrange insurace for a second opinion ?

Hopeful & Optimistic's observation is key:  Although some urologists administer HT, they almost never have Board Certification as medical oncologists (they legitimately write HT perscriptions with their licenses as urologists).  And they do not have the particular insights of a Radiation Oncologist.  On the surface, it would seem that seeing another urologist is going to be "more of the same," rather than a fresh perspective.

But of course it is impossible for us to know everything that his Team is sharing with you. I would ask specifically for a Radation Oncologist.

max

Gleason Score 9 and 10

Thanks for the link

Thanks for the link, Hopeful...looking forward to reading it.

Gleason Score 9 and 10

Max Former Hodgkins Stage 3 said:

Slight Confusion

Gleason,

If Barnes always uses a team approach, including a medical oncologist and radiation oncologist, why are you having to arrange insurace for a second opinion ?

Hopeful & Optimistic's observation is key:  Although some urologists administer HT, they almost never have Board Certification as medical oncologists (they legitimately write HT perscriptions with their licenses as urologists).  And they do not have the particular insights of a Radiation Oncologist.  On the surface, it would seem that seeing another urologist is going to be "more of the same," rather than a fresh perspective.

But of course it is impossible for us to know everything that his Team is sharing with you. I would ask specifically for a Radation Oncologist.

max

More explanation

Hi Max,

This facility is out of our regular insurance network so a referral is necessary prompting the insurance issue. In addition, because we are seeing a urologist again for a second opinion, both require the need for insurance approval. 

I really appreciate the information regarding your opinion and Hopeful's regarding the radition oncologist. I have added that to our list of questions to ask on Friday. In reviewing The Siteman Cancer Center's (which is where we will be seen) approach to treatment, I am confident they look at the choices from all angles; however, I will be sure we cover it. 

Hope that additional information is helpful. As always...share your thoughts.

Thanks!

Gleason Score 9 and 10

Update & Catheter Removal Question

Hello All...

My husband had DaVinci last Friday. We are home, and he is doing his best to adjust to the catheter that is certainly much more uncomfortable than he was expecting. Today, day four post-surgery, he is doing much better and adjusting. On Friday, we head back to have the catheter removed and to hear about the pathology reports.

We did have Wash U/Barnes pathologists read the biospy slides and our Gleasons went from two 9's and two 10's to four 9's...not much change, but we will take the best we can get.

I really appreciate all the advice and support we have been given. We elected to do this sugery as it offered the best hope for a curative process given all the test results we have had. The information we received from The Siteman Center at Wash U in St. Louis helped to confidently solidify this process. We still have a long way to go...pathology reports, then our first PSA. I recently read a new study by researchers at Brigham and Women's Hospital and Harvard Medical School regarding a new outlook on how to treat prostatectomy patients who have minute, yet growing PSA scores. According to the study, "The important number to know: PSA should fall to 0.5 nanograms (ng per ml) or lower." If the score rises above, after a prostatectomy, radiation is being recommeded rather than a "wait and watch" approach. The full article is here http://www.nbcnews.com/health/health-news/study-finds-new-way-pinpoint-dangerous-prostate-cancer-n70615.

A question for those of you that have had a Foley catheter....how painful was it when it was removed, in particular for those of you who had regular discomfort while it was in place? That is the first hump for Friday...then the path results.

Thanks again for the support!

tpelle

Gleason Score 9 and 10 said:

Update & Catheter Removal Question

Hello All...

My husband had DaVinci last Friday. We are home, and he is doing his best to adjust to the catheter that is certainly much more uncomfortable than he was expecting. Today, day four post-surgery, he is doing much better and adjusting. On Friday, we head back to have the catheter removed and to hear about the pathology reports.

We did have Wash U/Barnes pathologists read the biospy slides and our Gleasons went from two 9's and two 10's to four 9's...not much change, but we will take the best we can get.

I really appreciate all the advice and support we have been given. We elected to do this sugery as it offered the best hope for a curative process given all the test results we have had. The information we received from The Siteman Center at Wash U in St. Louis helped to confidently solidify this process. We still have a long way to go...pathology reports, then our first PSA. I recently read a new study by researchers at Brigham and Women's Hospital and Harvard Medical School regarding a new outlook on how to treat prostatectomy patients who have minute, yet growing PSA scores. According to the study, "The important number to know: PSA should fall to 0.5 nanograms (ng per ml) or lower." If the score rises above, after a prostatectomy, radiation is being recommeded rather than a "wait and watch" approach. The full article is here http://www.nbcnews.com/health/health-news/study-finds-new-way-pinpoint-dangerous-prostate-cancer-n70615.

A question for those of you that have had a Foley catheter....how painful was it when it was removed, in particular for those of you who had regular discomfort while it was in place? That is the first hump for Friday...then the path results.

Thanks again for the support!

Catheter Removal

After open prostatectomy, my catheter was scheduled for removal at the end of week three.  Bladder spasms during the three weeks caused most of the discomfort.  But, the nurse had the catheter removed in a matter of seconds and totally without pain.  tpelle

Max Former Hodgkins Stage 3

Gleason Score 9 and 10 said:

Update & Catheter Removal Question

Hello All...

My husband had DaVinci last Friday. We are home, and he is doing his best to adjust to the catheter that is certainly much more uncomfortable than he was expecting. Today, day four post-surgery, he is doing much better and adjusting. On Friday, we head back to have the catheter removed and to hear about the pathology reports.

We did have Wash U/Barnes pathologists read the biospy slides and our Gleasons went from two 9's and two 10's to four 9's...not much change, but we will take the best we can get.

I really appreciate all the advice and support we have been given. We elected to do this sugery as it offered the best hope for a curative process given all the test results we have had. The information we received from The Siteman Center at Wash U in St. Louis helped to confidently solidify this process. We still have a long way to go...pathology reports, then our first PSA. I recently read a new study by researchers at Brigham and Women's Hospital and Harvard Medical School regarding a new outlook on how to treat prostatectomy patients who have minute, yet growing PSA scores. According to the study, "The important number to know: PSA should fall to 0.5 nanograms (ng per ml) or lower." If the score rises above, after a prostatectomy, radiation is being recommeded rather than a "wait and watch" approach. The full article is here http://www.nbcnews.com/health/health-news/study-finds-new-way-pinpoint-dangerous-prostate-cancer-n70615.

A question for those of you that have had a Foley catheter....how painful was it when it was removed, in particular for those of you who had regular discomfort while it was in place? That is the first hump for Friday...then the path results.

Thanks again for the support!

Non-event

Gleason,

Most guys use a cath for 5-7 days following surgery.  Removal was a non-event for me; there was no pain at all.

max

VascodaGama

My experience with the cath

My experience was equally with no trouble. I had it for 14 days till the "V-shaped" was formed at the sphincter (X-ray image done two times). Some discomfort but no pain and no incontinence since the moment they took it out. I used sort of cream or baby oil at the tip of penis to avoid dryness.

Best,

VG  

Gleason Score 9 and 10

tpelle said:

Catheter Removal

After open prostatectomy, my catheter was scheduled for removal at the end of week three.  Bladder spasms during the three weeks caused most of the discomfort.  But, the nurse had the catheter removed in a matter of seconds and totally without pain.  tpelle

Thank you

Thank you for the feedback...I can't imagine how difficult three weeks must have been. We are grateful for only one!

Gleason Score 9 and 10

VascodaGama said:

My experience with the cath

My experience was equally with no trouble. I had it for 14 days till the "V-shaped" was formed at the sphincter (X-ray image done two times). Some discomfort but no pain and no incontinence since the moment they took it out. I used sort of cream or baby oil at the tip of penis to avoid dryness.

Best,

VG  

Thank you

Thank you...great to hear about your not having any incontinence. Appreciate the feedback.

Gleason Score 9 and 10

Max Former Hodgkins Stage 3 said:

Non-event

Gleason,

Most guys use a cath for 5-7 days following surgery.  Removal was a non-event for me; there was no pain at all.

max

Thank you!

Thanks for the feedback, Max!

Clevelandguy

Cath removal

Hi,

Nothing to sweat, it will be the best day of his whole surgical experience.  I had mine in for about 10 days with no problem or pain on removal. He will be very glad to get that thing out of him!

Dave 3+4

LvGuy1

Cath Removal

Hello, 

I had mine in for about 14 days and had spasms on most of the days, actually went to ER due to it more out of fear than anything else. But due to it being in for that long mine was a little harder to get out and felt like 3 balls popping out but oh what a relief it is when its out. I have very little incontinance mostly when i stand or sit down or am tired, BUT i have only had it out for about 10 days also. and its getting better every day.

Hope all goes well with your husband.  

Josephg

Cath Removal

My catheter was in for 3+ weeks total.  At the end of 2 weeks, there was still a fair amount of blood in my urine, and testing showed that the urethra repair had not yet fully healed.  I went another week with the catheter, and the blood in my urine subsided.  They pressure tested my urethra, found no leakage, and removed the catheter.  The removal was completely painless, but be prepared for a fountain of urine to gush out, immediately upon removal.  Nothing bad, but even being told ahead of time that it would happen, the quickness and the velocity of the urine flow was startling.

I had periodic discomfort with the catheter, particularly when sitting down.  For me, pushing the catherer into the penis a bit (fraction of an inch) eliminated the discomfort.  I'm not a physician, so I cannot recommend that your husband perform this technique, but I can tell you that it worked for me.

Last, about 1 week into the catheter, I experienced strong pressure in my bladder, and no urine flow into the bag.  I went to the local hospital emergency room, and they performed a routine catheter flush (just connected my catheter to a hose).  I was told that a fairly large blood clot had obstructed the head of the catheter, and the flush immediately removed the pressure and the clot.

Gleason Score 9 and 10

Clevelandguy said:

Cath removal

Hi,

Nothing to sweat, it will be the best day of his whole surgical experience.  I had mine in for about 10 days with no problem or pain on removal. He will be very glad to get that thing out of him!

Dave 3+4

Thank you!

Thanks so much for your feedback!

Thrilled to hear of your positive experience!

Gleason Score 9 and 10

LvGuy1 said:

Cath Removal

Hello, 

I had mine in for about 14 days and had spasms on most of the days, actually went to ER due to it more out of fear than anything else. But due to it being in for that long mine was a little harder to get out and felt like 3 balls popping out but oh what a relief it is when its out. I have very little incontinance mostly when i stand or sit down or am tired, BUT i have only had it out for about 10 days also. and its getting better every day.

Hope all goes well with your husband.  

Thank you!

Thank you so much for sharing your information and experience!