Newly Diagnosed with Gleason Scores of 9 and 10

Gleason Score 9 and 10 · November 2016

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!

Old Salt · November 2016

Good news

but I would like to see confirmation of all the pathological findings from the Johns Hopkins U pathologist.

Will Doran · November 2016

Fight and keep up Hope

Score 9,

Sorry to hear of your husband's and your battle. You have been given lots of good suggestions here. I really have nothing to add, except that, As of Dec 10th, I will be a three year survivor since surgery. That was followed by two years on Lupron, and 8 weeks of daily Radiation. I started with a PSA of 69, and a Gleason of 3+4=7. Post surgery pathology showed 40% involvement of the prostate, and one very tiny spot in one lymph node. That spot was too small to show up on my MRI's. I was listed as a Stage pT3bN1. My doctors told me they were going to be aggressive and treated me as if I were a Stage 4. Since my surgery and treatments my PSA has remained at "undetectable levels" (<0.010 - 0.035). My Testosterone is back up in the normal range at this time and my PSA is now at 0.035. I'm feeling pretty good at this point, except for side effects of bone density treatments. The bone density treatments were needed to try and help repair damage from the radiation.

There is hope. Don't give up. You seem to be studying all you can. That's good. Keep that research going. Make sure and think about quality of life. I see every day as a gift, and Thank the Good Lord every day, for each and every day.. Make sure and enjoy the simple things in life. This is a tough battle. Know that your husband and you are in my thoughts and prayers.

Love, Peace and God Bless

Will

Max Former Hodgkins Stage 3 · November 2016

Super

Score,

It is good that his urologist made the observation regarding the Signet Ring, but like Old Salt, I would suggest you still get the secondary read of the biopsy at JHU. I don't know for certain, but this should not be terribly expensive, and will be money well spent.

If you decide on surgery, when the gland is removed, the pathologist will be able to dissect it and give a very good opinion of whether there was cancerous escape from the gland, plus, no doubt the surgeon will have to remove a good many nodes, given his specifics. Surgery is not usually the best choice if there is known escape, but it sounds like his doc is being very through in trying to establish this. His "95% estimate" is just that, an informed estimate, although based on empirical results.

A cousin of mine died Sunday, 71. He had had throat cancer, PCa ten years ago, and then lung. The lung cancer killed him, but he had had surgical removal of the prostate about ten yeas ago, but with micrometastasis. He was on HT for those ten years, PSA well controlled. It pays to be thorough, to consider every angle in advance. Get the biopsy review.

I'm glad you two have had a "good week", regarding medical information from the doc,

max

Gleason Score 9 and 10 · November 2016

Old Salt said:
Good news
but I would like to see confirmation of all the pathological findings from the Johns Hopkins U pathologist.

Will Be Doing the Confirmation from JHU

Old Salt,

Thanks so much for your comments and continued suggestions. We agree. What we have decided, based on this new information, and even more information today, is to wait to send all our results to JHU after the bone scan which is just barely one week away. My husband's CT from August was reviewed again today by a pathologist and it was determined there is no node involvement; however, my husband will now also have a cystoscopy as a result of a hematuria that he had in August. We will definitely be sending all these results to JHU for a second opinion.

Thanks again...as I have said, I will keep you all updated as I have so very much appreciated your support and information.

Prayers continued from Illinois!

Gleason Score 9 and 10 · November 2016

Will Doran said:
Fight and keep up Hope
Score 9,

Sorry to hear of your husband's and your battle. You have been given lots of good suggestions here. I really have nothing to add, except that, As of Dec 10th, I will be a three year survivor since surgery. That was followed by two years on Lupron, and 8 weeks of daily Radiation. I started with a PSA of 69, and a Gleason of 3+4=7. Post surgery pathology showed 40% involvement of the prostate, and one very tiny spot in one lymph node. That spot was too small to show up on my MRI's. I was listed as a Stage pT3bN1. My doctors told me they were going to be aggressive and treated me as if I were a Stage 4. Since my surgery and treatments my PSA has remained at "undetectable levels" (<0.010 - 0.035). My Testosterone is back up in the normal range at this time and my PSA is now at 0.035. I'm feeling pretty good at this point, except for side effects of bone density treatments. The bone density treatments were needed to try and help repair damage from the radiation.

There is hope. Don't give up. You seem to be studying all you can. That's good. Keep that research going. Make sure and think about quality of life. I see every day as a gift, and Thank the Good Lord every day, for each and every day.. Make sure and enjoy the simple things in life. This is a tough battle. Know that your husband and you are in my thoughts and prayers.

Love, Peace and God Bless

Will

Thank you for your comments!

Hi Will,

Thank you for your comments and sharing your journey. Congratulations on your upcoming three year anniversary...may it turn into 30 years!

I am always happy to hear when docs decide to treat this disease aggressively, as it cannot be taken lightly. As others have shared, it can rear its ugly head again and the best way to keep that from happening is by being aggressive.

I can't thank you enough for your message of hope. We are very much hopeful and plan to learn and research as much as needed. We have exchanged emails with our doctor and feel he is really adequately addressing our questions and I believe he is getting an understanding that we are working hard to understand this disease and will take a proactive role in fighting it. That said, we are so very focused on quality of life...we always have been and so far, this new reality for us has underscored our need to continue to be focused in that way. I do thank the Lord every day for where we are. We have a friend, 55 years old, who was diagnosed yesterday with a brain tumor, as well as a tumor in her lung, and on the base of her spine....things can be a lot worse; though, she is scheduled for brain surgery tomorrow and has been told her tumors are all "treatable"...we all understnad this, but at what expense. Quality of life is everything.

I continue to pray constantly and trust we will be guided by faith and what God has in store....

Thanks again...congratulations to you and thank you for your blessings!

Gleason Score 9 and 10 · November 2016

Max Former Hodgkins Stage 3 said:
Super
Score,

It is good that his urologist made the observation regarding the Signet Ring, but like Old Salt, I would suggest you still get the secondary read of the biopsy at JHU. I don't know for certain, but this should not be terribly expensive, and will be money well spent.

If you decide on surgery, when the gland is removed, the pathologist will be able to dissect it and give a very good opinion of whether there was cancerous escape from the gland, plus, no doubt the surgeon will have to remove a good many nodes, given his specifics. Surgery is not usually the best choice if there is known escape, but it sounds like his doc is being very through in trying to establish this. His "95% estimate" is just that, an informed estimate, although based on empirical results.

A cousin of mine died Sunday, 71. He had had throat cancer, PCa ten years ago, and then lung. The lung cancer killed him, but he had had surgical removal of the prostate about ten yeas ago, but with micrometastasis. He was on HT for those ten years, PSA well controlled. It pays to be thorough, to consider every angle in advance. Get the biopsy review.

I'm glad you two have had a "good week", regarding medical information from the doc,

max

Thank you again...I am sorry for your loss!

Hi Max,

Thank you for your comments.

First off...I am sorry to hear about your cousin. You have my deepest condolences for your loss.

I really appreciate your sharing your loss as a way to help me understand the importance of the second opinion and I can't agree more. Here is where we are right now with our plans....as I shared with Old Salt, the CT scan from August was reviewed today and found no lymph node involvement;however, my husband had a hematuria in August so the doc will be scheduling a cystoscopy in the next week or so to be sure the two (hematuria and cancer) are not linked; though he said it would be unusual for them to be linked with all my husband's other scores, etc. After we have the bone scan results (will have next week) and the cystoscopy results (thinking next week too), we will, without a doubt, send to JHU for a second opinion. We have also decided to ask the doc if we can request an MRI or PET/CT scan if the bone scan comes back negative to assure that we aren't missing anyting that is too small to have been caught on the August CT or the upcoming bone scan.

One day at a time, but we keep working to educate ourselves, ask questions, and ask more questions. We have been very pleased with the docs response to our qeustions, his thoroughness in answering them (since we inquired yesterday about having the August CT scan reviewed in light of our new diagnosis, as we were concerned that if the reason for the order of the CT was a hematuria, was the pathologist looking for node involvement, etc. The doc called the patholoigst this morning, asked her to review the scan, and recieved confirmation back, before contacting us, that node involvement was negative.).

We will keeping gently pushing, nudging, or full out shoving, if necessary.

We fully recognize this is a roller coaster ride...we are at the top of the hill right now and are enjoying it but also recognize we are dealing with Gleason scores of 9 and 10 and have a great deal of "track" ahead of us....one day at a time.

We have also started to align information on FMLA, etc. so we are sure we are covered in every way possible as we are unsure where this journey will lead. Of course, our hope and prayer is for localized findings where surgery and/or radiation and HT will be possibly curative, but recognize we will follow the path where we are led.

I received the book today from Amazon that you suggested....thanks again for the recommendation! If you have any other suggestions, I am all ears!

Thanks again...so very much!

VascodaGama · November 2016

A note of caution regarding your latest news

Gs9

I am sorry if this post is discouraging in your good work but I have my doubts regarding the information provided by your pathologist and cannot trust him/her. It doesn't sound professional when a doctor writes a report on his/her work regarding cancer and then retracts what has been set/written; In particular when the matter in concern is so critical in an aggressive case. Another aspect is the pathologist involvement in analysing the CT scan images. This is work to be done by radiologists specialized in prostate cancer. Both; pathological results and CT are highly important data in the diagnosis of your husband's status, and from what you describe above I simply cannot trust the results or the path doctor's opinion. I also think that the main doctor following the procedure was incompetent by providing you the above details without questioning firstly the ones providing such ambiguous reports.

Though you are repeating those exams at a reliable laboratory, I would suggest you to obtain second opinion in all 14 cores (some doctors only submit the cores found positive; 2 as reported) and the use of choline base contrast agent in either, MRI or PET.
The cystoscopy will add more information. I hope the hematuria occurence was a cause of stress. Biopsies also can cause hematuria and so it does DRE (digital rectum examination). Do you have any DRE result?

I am sorry if my doubt is exagerated and causes you any anxiety.

Best wishes in your continuing journey.

VGama

Gleason Score 9 and 10 · November 2016

VascodaGama said:
A note of caution regarding your latest news
Gs9

I am sorry if this post is discouraging in your good work but I have my doubts regarding the information provided by your pathologist and cannot trust him/her. It doesn't sound professional when a doctor writes a report on his/her work regarding cancer and then retracts what has been set/written; In particular when the matter in concern is so critical in an aggressive case. Another aspect is the pathologist involvement in analysing the CT scan images. This is work to be done by radiologists specialized in prostate cancer. Both; pathological results and CT are highly important data in the diagnosis of your husband's status, and from what you describe above I simply cannot trust the results or the path doctor's opinion. I also think that the main doctor following the procedure was incompetent by providing you the above details without questioning firstly the ones providing such ambiguous reports.

Though you are repeating those exams at a reliable laboratory, I would suggest you to obtain second opinion in all 14 cores (some doctors only submit the cores found positive; 2 as reported) and the use of choline base contrast agent in either, MRI or PET.
The cystoscopy will add more information. I hope the hematuria occurence was a cause of stress. Biopsies also can cause hematuria and so it does DRE (digital rectum examination). Do you have any DRE result?

I am sorry if my doubt is exagerated and causes you any anxiety.

Best wishes in your continuing journey.

VGama

Understandable Caution

VGama,

Thank you for your note of caution...I think it is warranted. We will definitely be getting a second opinion from JHU on all 14 core samples, the results of the CT, upcoming bone scan, and the cystoscopy. In addition, regardless of the outcome of the bone scan, we will ask for either the MRI or PET to be sure something small is not missed.

The hematuria was in August. I can't remember where its occurrance falls in relation to his last DRE as he had been getting them each time we went back for an update on PSA numbers and the PHI; however, my husband has also had kidney stones in the past, that as far as we know, had never been passed, so that was a thought as well. In August, before all the follow-up testing and cancer results, a cystoscopy was scheduled, but because the incidence with what is currently thought to be the hematuria, only lasted less than one day, with no blood the following day or since, the procedure was cancelled (by my husband). Given this new information (the cancer diagnosis) we are now moving ahead with that procedure.

In addition, my husband's DRE have shown only an enlarged prostrate, no other physical signs (i.e. tumor, lumps,etc.) have been found.

Thanks again for your input...good or bad, it raises questions and keeps us moving in a direction that will yield the best possible answers for us.

Max Former Hodgkins Stage 3 · November 2016

Gleason Score 9 and 10 said:
Understandable Caution
VGama,

Thank you for your note of caution...I think it is warranted. We will definitely be getting a second opinion from JHU on all 14 core samples, the results of the CT, upcoming bone scan, and the cystoscopy. In addition, regardless of the outcome of the bone scan, we will ask for either the MRI or PET to be sure something small is not missed.

The hematuria was in August. I can't remember where its occurrance falls in relation to his last DRE as he had been getting them each time we went back for an update on PSA numbers and the PHI; however, my husband has also had kidney stones in the past, that as far as we know, had never been passed, so that was a thought as well. In August, before all the follow-up testing and cancer results, a cystoscopy was scheduled, but because the incidence with what is currently thought to be the hematuria, only lasted less than one day, with no blood the following day or since, the procedure was cancelled (by my husband). Given this new information (the cancer diagnosis) we are now moving ahead with that procedure.

In addition, my husband's DRE have shown only an enlarged prostrate, no other physical signs (i.e. tumor, lumps,etc.) have been found.

Thanks again for your input...good or bad, it raises questions and keeps us moving in a direction that will yield the best possible answers for us.

DRE

Gleason,

Don't give too much weight to a negative DRE, since a DRE only feels the rear of the gland, above the rectum. It tells nothing about the front half or more of the gland (but of course a negative DRE is still better than a postive one).

Prostate cancer is among the worst for being detected by imaging, especially conventional CTs. Many guys here are expert in the newer scans that are better, but not perfect.

While I always agree with Vasco anyway, it was very spot on, his comment that a urologist doesn't interpret scans: that is why the radiologists is paid a lot of money.

.

hopeful and optimistic · November 2016

Max Former Hodgkins Stage 3 said:
DRE
Gleason,

Don't give too much weight to a negative DRE, since a DRE only feels the rear of the gland, above the rectum. It tells nothing about the front half or more of the gland (but of course a negative DRE is still better than a postive one).

Prostate cancer is among the worst for being detected by imaging, especially conventional CTs. Many guys here are expert in the newer scans that are better, but not perfect.

While I always agree with Vasco anyway, it was very spot on, his comment that a urologist doesn't interpret scans: that is why the radiologists is paid a lot of money.

.

MRI, PET Scan/ testing family members

Why not get both a MRI and a PET Scan. There are various types of PET SCAN, some PET Scans are superior to others (Vasco has discussed this) and a 3T MRI.

The right thing is to contact your husbands family members since they are more likely to develop prostate cancer than the rest of the population; brothers, sons, and contacting cousins can not hurt. A base line PSA at 35, and screening starting at age 40. Additionally studies have found that there is a correlation between family members for prostate cancer and breast cancer, so the women in your husbands family need to get those mamograms.

Eating heart healthy is prostate healthy and breast cancer healthy. ...Additionally heart disease is at epidemic proportions and we, including those who have been diagnosed with prostate cancer are more likely to die from heart disease than prostate cancer.

Gleason Score 9 and 10 · November 2016

hopeful and optimistic said:
MRI, PET Scan/ testing family members
Why not get both a MRI and a PET Scan. There are various types of PET SCAN, some PET Scans are superior to others (Vasco has discussed this) and a 3T MRI.

The right thing is to contact your husbands family members since they are more likely to develop prostate cancer than the rest of the population; brothers, sons, and contacting cousins can not hurt. A base line PSA at 35, and screening starting at age 40. Additionally studies have found that there is a correlation between family members for prostate cancer and breast cancer, so the women in your husbands family need to get those mamograms.

Eating heart healthy is prostate healthy and breast cancer healthy. ...Additionally heart disease is at epidemic proportions and we, including those who have been diagnosed with prostate cancer are more likely to die from heart disease than prostate cancer.

Family Members & Tests

Hello Hopeful!

I like your suggestion of why not both tests...this will definitely be a topic of conversation with our doctor.

We will definitely be letting family know of this diagnosis...it is imperative they know. I like your suggestion of a baseline PSA at 35. Nearly all of the family members on my husband's side are good about preventive care and routine testing. Only one brother hasn't been diligent, though this information will hopefully push him in a new direction.

I am happy to say that we are heart healthy. We eat right (no fried foods, no fast food, lots of veggies, chicken, fish, little red meat, almonds, etc.)...I get plenty of exercise...my husband needs more and he is aware of it. So far, heart is healthy as we both have baselines and no symptoms! I am the one with the heart issue on my side of the family. Sadly, your comment is true...we are such an unhealthy society and far too many die from heart related issues.

Thanks for your comments.

Gleason Score 9 and 10 · November 2016

Max Former Hodgkins Stage 3 said:
DRE
Gleason,

Don't give too much weight to a negative DRE, since a DRE only feels the rear of the gland, above the rectum. It tells nothing about the front half or more of the gland (but of course a negative DRE is still better than a postive one).

Prostate cancer is among the worst for being detected by imaging, especially conventional CTs. Many guys here are expert in the newer scans that are better, but not perfect.

While I always agree with Vasco anyway, it was very spot on, his comment that a urologist doesn't interpret scans: that is why the radiologists is paid a lot of money.

.

DRE & CT

Max,

Thanks for your comments. I haven't put any weight into the DRE as it hasn't shown anything from the start of this process...of course, happy nothing can be felt, but certainly understand that it is in no way menaingful in a diagnostic way.

Just to clarify...the urologist didn't read the CT, a radiologist did; though I do believe one that specializes in cancer radiology (and cancer pathology) will definitely be sought as we gather this data over the next week. Then, too, I wil be asking for a PET or MRI, or as others have suggested, maybe both!

Again, I appreicate your comments and explanations.

hopeful and optimistic · December 2016

"maybe both"?

This is not a rehearsal and health is paramount whatever the cost.

Gleason Score 9 and 10 · December 2016

Agreed!

Hopeful,

I couldn't agree more....thank you!

ak61 · December 2016

Your medical staff is your best source of information

Best of luck with your further tests and results. It would be informative to know what decisions have been made. Each person has their own personal medical story and it is essential that your medical staff be your best guide to analysis and therapy. JHS is certainly and excellent institution. My husband went through EBRT and Brachytherapy + ADT at age 62- now going on 5 years; Excellent health with hardly any side effects. I was diagnosed, age 74, with Intermediate (GL 7, 8) Pca and start my 6 mo ADT in January. This will be followed by seed impants and a possible EBRT in May. Im up in Massachusetts and my cancer center is just 20 minutes away. Both my urologist and radiologist are excellent and I attend a Pca treatment group who have all said good things about the cancer center I am going to. I encourage your husband to become involved in his treatment and to get a voice in this or other PCa forum.

Gleason Score 9 and 10 · December 2016

Lots of Updates

Good Morning and Merry Christmas...

Since I have last written a number of tests have been performed and we are getting closer to a course of treatment. In addition to a CT Urogram which showed no node involvement, a bone scan was also performed and came back negative for metastases. Of course, we understand there are situations where node and/or metastases cannot been seen by testing. My husband has also had a cytoscopy which confirmed a healthy bladder, no cancer present.

This coming Friday we see a prostate oncolgist at Washington University/Barnes in STL for a second opinion considering all the data we have thus far. It would not be surprising to us that the doc may want to do some retesting before suggusting a firm course of treatment, but feel there is quite a bit for him to go on for his opinion. Right now, all indications are pointing toward surgery.

My husband continues to feel very healthy and has a positive outlook, both of which bring me happiness and hopefully circles around him with the same feelings in return.

Still a long road ahead, but information is being gathered and we are feeling as though we are getting good reports and will hang our hats on that for today.

Enjoy the day all...

Max Former Hodgkins Stage 3 · December 2016

Progress

You have done a lot of investigating thus far, Gleason. I would ask the doctor on Friday specifically if it is not likely that your husband has some micrometastasis, given his Gleason, despite the assortment of negative tests he has gotten back.

If surgery is the chosen option, the pathology report will yield a lot of information regarding whether or not escape has occured. And, after a period of healing, Radiation can be applied as necessary.

I am glad things are moving forward toward closure on a choice for you two and his medical team,

max

Gleason Score 9 and 10 · December 2016

Max Former Hodgkins Stage 3 said:
Progress
You have done a lot of investigating thus far, Gleason. I would ask the doctor on Friday specifically if it is not likely that your husband has some micrometastasis, given his Gleason, despite the assortment of negative tests he has gotten back.

If surgery is the chosen option, the pathology report will yield a lot of information regarding whether or not escape has occured. And, after a period of healing, Radiation can be applied as necessary.

I am glad things are moving forward toward closure on a choice for you two and his medical team,

max

Thank you for the advice

Hi Max,

Thanks for your advice...we definitey agree and we will definitely be asking that question as well as a host of others, as I know you understand and support. Additionally, I am suspecting we will end up having the surgery at Barnes as this is a top hospital with highly qualified surgeons/oncologists. We are still going back and forth to get insurance to cover the second opinion (referral is for consult and treat)/treatment. The world of insurance...if every "t" isn't properly crossed or "i" exactly dotted, they ask for an "updated referral". We got tired of this back and forth and waiting...we have made the appointment and will self-pay for the second opinion if necessary...we just need to get additional information to be able to start making the best decisions.

Thanks!

hopeful and optimistic · December 2016

Gleason Score 9 and 10 said:
Thank you for the advice
Hi Max,

Thanks for your advice...we definitey agree and we will definitely be asking that question as well as a host of others, as I know you understand and support. Additionally, I am suspecting we will end up having the surgery at Barnes as this is a top hospital with highly qualified surgeons/oncologists. We are still going back and forth to get insurance to cover the second opinion (referral is for consult and treat)/treatment. The world of insurance...if every "t" isn't properly crossed or "i" exactly dotted, they ask for an "updated referral". We got tired of this back and forth and waiting...we have made the appointment and will self-pay for the second opinion if necessary...we just need to get additional information to be able to start making the best decisions.

Thanks!

.

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.

Newly Diagnosed with Gleason Scores of 9 and 10

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