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Newly Diagnosed with Gleason Scores of 9 and 10

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hello...I am a very worried wife whose husband was diagnosed with prostate cancer yeseterday. I have been feverishly reading all I can to understand what he/we are facing. I read through a number of forums last night and found them helpful so I am hoping to get that help and really hopeful for hope! 

My husband had 14 core samples biopsied and four of the 14 came back with high Gleason scores (2 were 9, and 2 were 10). His PSA is 5.4. His pathology report does show one of the core samples as "Perineural Invasion is Identified" and another had "Tumor has Signet Ring Appearance". A bone scan and CT scan are scheduled for two weeks from today. Cancer is found in right lobe only.

Can anyone give me any experience on a similar set of circumstances, or at least having some of the same numbers/pathology findings as my husband? We live in Central Illinois and are considering getting a second opinion from John Hopkins second opinion service...any thoughts or recommendations will be greatly appreciated.

Thank you!

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I am sorry for the diagnosis. It seems that your husband is confronting a serious difficult case. As you probably know by now, Signet Ring PCa tumours are aggressive and linked to metastases and generally associated with poorer prognosis. Gleason score 10 (5+5) is the highest in aggressivity that typically produce smaller amounts of PSA serum. You should consider treatment the earliest. You can read details of this type of cancer in this link;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996149/

John Hopkins is one of the best for a second opinion on PCa diagnosis. You can ask them to recheck the biopsy slides too. In any case it may be wise to be prepared for the meeting with a list of "educated" questions. The bone scan and CT will add info on the status but these exams are typically negative if the tumour is small in size (< 1cm). You may inquire at JH for better exams with PET/MRI scans.

I would recommend you to google on treatments for PCa and about their side effects. Gleason 10 cases are typically linked to metastases. That means lesser probability for a contained case to which surgery may not assure cure. However, due to the aggressivity of the cancer, surgery may be an option to debulk the biggest tumour followed by a protocol of radiation. Chemotherapy has relatively poor curative efficacy in Signet Ring PCa. I wonder if you should start already a protocol of hormonal therapy while waiting for additional consultations and exams. 

Can you share more details on your husband. What is his age? Were there any symptoms? What cause himto do the biopsy?

Here are some reading materials to help you;

http://csn.cancer.org/node/224280

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

Best wishes and luck in his journey,

VGama

Gleason Score 9...
Posts: 62
Joined: Nov 2016

VGama,

Thank you for your comments, though it isn't what I wanted to hear. 

My husband is young...60 years old. Symptoms were frequency with urniation and some hestitantcy before going. The cause to do the biopsy was an increasing PSA score and we had a PHI test done has well which came back on the "higher end than normal".  From there, the biopsy was done. 

In reference to the JHU second opinion, do you feel it would be wise to go ahead and see about sending the biopsy slides before we have the results of the scans?

Thank you...I appreicate your help and information.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Score 9,

Vasco has got you rolling in the right directions (you can always count on that !).  Gleason 10 biopsy reports here are rare. The patholgy review at Johns Hopkins is highly advisable. At 14 cores, his doctor was being thorough.

I will just add a few comments regarding liklihoods: Metastatic PCa (prostate cancer) is ordinarily treated first-line (initially) with radiation, with or without HT (hormonal therapy), but HT is almost certainly in the cards for him also.   Sometimes, chemo is done initially to beat back the disease, but guys report this less than half the time.  Surgery is rare in cases such as your husband's, but as Vasco noted, is performed in some cases. In metastatic disease, surgery is never curative but can assist.

What has some possibility of being curative (totally eliminating the cancer) is radiation, but I am spepaking only in the realm of clinical possibilities, not what will transpire in his particual case.  HT, like surgery, is not curative of metastatic PCa, but can control it in most cases, often for a decade or more.

"Perineural involvement" means that it appears cancer may have escaped along nerve bundles that go through the gland.

This is all still informed speculation at this point.  He will need an expert medical oncologist, well experienced specifically in PCa: medical oncologists are doctors who treat via drugs, such as the chemo and HT.  Urologists are ordinarily not the best at this, although many do administer HT.  Of course there undoubtedly exists that rare urologist that is also Board Certified in medical oncology, but that is rare indeed.

I hope you share developments, since his case is an uncommon one.  Several regular writers here began their PCa experience with metastatic disease and Gleasons of 9, and have done well for a long time, so do maintain hope.  In the US, men who present initially with metastatic, Stage IV PCa have an average life expectanccy of over five years. This is astonishingly long, compared to the many more deadly cancers out there.  And, with well administered HT, that is often extended to a decade or even longer than that. I mention these data points only because I know that people newly diagnosed in any cances ask these things first, but know that statistics only show averages, not what will happen to any individual patient.   Plus, it is not confirmed that he is metastatic yet anyway.

You seem remarkably conversant already, which makes me believe perhaps you are a nurse or medical practicioner. If not, then you are extraodinarily bright !

Lots yet to be established,

max

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hi Max,

Thanks for your comments, and most of all offering hope. These initial stages are incredibly frightening to say the least. Reading some of the information on different, ruputable sites offers a lot of information some of which piecing together, are helpful and other scare you to death...I understand that this jouney will offer both. 

We have decided to move ahead with the JHU second opinion and by the end of this weekend, will have our "ducks in a row" to get that ball rolling, as we could at least have some additional information by the time he has the bone scan and CT. As Vasco stated in a post below, I am a bit skeptical of the Signet rings "appearance" comment...like Vasco, I wondered if they didn't know if that's what was detected or not. In reading about the surgurical/urological pathologists that will review the information at JHU, I am holding out some hope for clarification in this area. 

Here is some additional information that the doctor (who is a board certified urologist) regarding his opinion on the diagnosis: he said there are three factors to consider when initially looking at prostate cancer (not necessarily in this order - just recounting what he said), PSA Score, Gleason Score, and the percentage of affected samples compared to the overall number of samples taken. He said my husband's affected samples are confined to the right lobe. He said depending on the outcomes of the bone scan and CT scan, in all liklihood we would be looking at surgery and/or radiation. Although nothing was mentioned about HT at this point, it seems like from reading this disussion board, a lot of men end up on this trajectory. 

When you stated, "Perineural involvement" means that it appears cancer may have escaped along nerve bundles that go through the gland." Does this necessarily mean metatasis? If not, can you share more specifically what you mean?

I will definitely try to share his developments, as you all have been so helpful to me in these very early stages, so I am hopeful I too can help someone else, and share good news on outcomes!

I am not in the medical field...I have just been involved with a family member years back with cancer, and managed my parents' healthcare into their elderly years, so I have gotten pretty good at reading, understanding, and constantly asking questions to be sure I understand. That is what has been so hard thus far...I need to ask more questions, which is something my husband understands and supports. We are gathering a number of questions we will be sending to the docs office later today via email.  

Thanks again, so very much, for some hope. I have always been a "glass half full person (really 3/4 full)" and I need some of that now thrown at me from all sources whenever it is attatched to something that is hopeful.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Absolutely no family history of prostrate or any other cancers.

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

So very often, I have seen a post like yours, and like all on this board, our hearts go out to you.  Even though your case is serious, no case is without hope.  Sometimes the most difficult cases do turn around and survive.  But that is not my message.  Often the only direction taken is about treatment and survival time to increase.  What is left out is what is going to occur in the time that is left, even if that time is not to be long.  I feel that it is equally, or even more important to focus on the present moment and to make whatever time is left the most important time of you and your husband's life.  You can pursue all kinds of treatments with very severe side effects that may or may not be effective.  You have no idea of the future or how much time you have left.  But what you do have is THIS MOMENT.  I suggest you focus also on the time you have left and make that time the most valuable time of your life together.  Often the treatment will destroy the quality of life and deprive you of quality of time together.  Please research all treatments offered.  Often doctors do not fully explain the odds.  Often the treatment is worse than the cancer, and the promised life extension is not backed by facts, or is only a few months.  And then the patient is so sick that the time left comes to have little value.  It is not for us to decide how long we are to be on this planet;  it is for us to decide how well we use that time and how grateful we are for all we are given.  

Love, Swami Rakendra

PS:  This will be a very unpopular suggestion on this board.  I suggest you research Food Grade Hydrogen Peroxide.  I do not have definitive proof that this can be successful, but I have seen cases here that have been much improved.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Rakendra,

Thank you so much for your positive comments. To add to the importance of what you have stated...my husband and I talked the other day that in life there are times that things happen that bring us back to our "core" (absolutely no pun intended!)...make us really remember what is important, discard all the "white noise" and really spend time where it is most important. My husband's feeling is this is a "blessing in disguise". We are very good and mindful about spending time in the moment, but we spend a lot of time looking forward too. Believe me, I am focussing on today with my husband. 

I really appreciate this type of reminder...we all need it from time to time!

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I absolutely agree with you in sending now (today) the biopsy slides for JH examination before consulting. The critical aspect of his diagnosis is the comment from the pathologist that "Tumor has Signet Ring Appearance". What does he mean by "appearance"? Isn't he sure?

You need to confirm this diagnosis before the consultation to get the best second opinion. Your added comment regarding "no family history of prostrate or any other cancers" puts in doubt the existence of Signet Ring type cancer (which typically is linked to hereditary mutations). The treatment could have a different protocol which could include chemo and refined drugs such as Zytiga, etc. Proper diagnosis leads to proper treatment and better outcomes. This includes the scans your husband will do. Surely the bone scan and  CT are not the most appropriate for a Gleason 10 case but these image exams are important and add info to the diagnosis. Try sending these results before or have in hand (copies) for the time of the consultation too.

Best wishes in this difficult moment of your life.

VGama

A Note to Rakendra: Your posts are always appreciated. This one above is simple beautiful and amazing. I would miss your concise and perception of life.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hi VGama,

Just thought I would also mention in addition to no family history, it is worthy to say that my father-in-law lived until 95...in good health until the last three weeks of life, and my mother-in-law lived until 93. She had Alzheimers, diagnosed around the age of 90. My father-in-law had an "age appropriate" elevated PSA level, but never diagnosed, nor any biopsy needs, etc. with prostate cancer. I have two brothers-in-laws, one in his 70s with low PSA scores and the young in his late 50s who doesn't seek much medical testing/prevention/etc.

....just added thoughts in the no family history arena.

Thanks.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

VGama,

Thank you for your added comments regarding the Signet Ring Cases and no family history as well as your comments on the slides. From what I can see we can inititate that effort on JHU website and plan to get it started by the end of this weekend for sure. When I read the pathologist's comment about "appearance" I wondered what in the world that meant as well. It didn't sound definitive to me either, so to hear you offer that similar question is comforting. 

You mention that bone scans and CTs are not the most appropriate next test steps...in your opinion what is...PET, MRI?

Thanks again for your comments and information...please share all you can!

Old Salt
Posts: 720
Joined: Aug 2014

I second the decision to consult with the Johns Hopkins specialists. Hopefully, this will bring clarification regarding the 'Signet Ring' issue as well.

Regarding perineural invasion, it's my understanding that this only means that there is a POSSIBILITY that cancer cells have escaped the prostate.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

G.S. 9,

Dr Peter Scardino, chief of surgery at Sloan-Kettering Cancer Center, defines "perineural invasion" (PNI) as The spread of prostate cancer into the sheath surrounding the prostate nerves.  ( Dr Peter Scardino's Prostate Book, p.540 )

I agree with Old Salt's take on this definition.  You husband has a lot of scanning and diagnosis yet to be performed, and whether significant escape has yet occured is, as we noted, yet to be firmly established. His urologist-surgeon seems to be onf the opinion that it probably has NOT wandered off the reservation yet.  Among the three diagnostic factors the urologist mentioned, they are ordinarily set in priority as Gleason most critical, PSA second, and volumetric involvement third. But all are important, and constitute an aggregate to assess by the professionals involved.

I recommend that you get Dr. Scardino's book, as it is both a readable Introduction to the subject, yet well detailed. I would say he is very impartial in it, not biased to surgery over radiation and such.  It reviews every form of treatment chapter-length, and lists alll common pros and cons for each.  It is a regular-stock item at Barnes and Noble, as well as at Amazon.

 

Relax, and have a good weekend ("relax means do not go near a mall" !). Your learning curve is among the best seen here,

max

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hi Old Salt,

Thanks for your comments and backing us up on the decision to to consult with JHU. I also appreciate the information on the perineural invasion...I am working to keep the faith on it only being a POSSIBILITY!

Much appreciated.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Thank you, Max! Again, I really appreciate it! I have no intention of going near a mall! Walgreens is even busy...and I am ready to be "at the corner of happy and healthy"!!!!!!!

Thanks for your information on the definition and on the recommendation for the book! I will definitely buy it!

I will check back when I have more questions and definitely when we get more information. Right now, his scans are scheduled for a couple of weeks from now as well as the follow up appointment with the doc the same day. Hoping to have some information back from JHU around the same time too.

Thank you again...I am going to try to relax while even NOT being at the mall!

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Gs9

I would recommend you to chose PET and MRI to define the clinical stage of your husband. These together with a choline base contrast agents can detect small sized tumours of 5mm therefore with lesser probability for false negatives.

When diagnosing a patient with prostate cancer, doctors look for the PSA, DRE, biopsy, symptoms and image studies. With this "collection" of data they provide a clinical stage and recommend a treatment. Your doctor is just following this typical sequential. He is waiting for the image studies to confirm the extent of the disease and qualify the case; contained, localized or with lymph nodes and bone involvement. When the image exam is negative one may assume to have a contained case. The doctor would most probably recommend surgery, however, if the case presents metastases then radiation (alone) or a combination of surgery plus radiation would be more appropriate (localized case).

Here is reading material regarding the image exams. Hope the doctor accepts it;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373349/

In this video you can listen about image capabilities;

https://www.youtube.com/watch?v=VaGnuiVvfGY

Best,

VG

Gleason Score 9...
Posts: 62
Joined: Nov 2016

VGama,

Thank you again for the resources and the information. It is definitely helpful and certainly adds to the questions we can ask and also know what to expect. It is also nice to hear you feel the doc is following typical sequence of diagnotic procedures. 

Enjoy the weekend!

hopeful and opt...
Posts: 2226
Joined: Apr 2009

The PET and MRI exams that Vasco discussed are the preferred imaging tests, and will provide higher resolution than the CT . These tests are preferred over The CT scan. I suggest that you arrange  for these tests instead of the CT . The bone scan that is ordered is an  appropriate test for aggressive diagnosis.

You find having base line tests such as a bone density test, testosterone level, and blood panel tests will be useful in monitoring your husbands treatments.

P.S. Having a colonoscopy before any radiation can also be considered.

 

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Thank you for your comments. We plan to definitely ask about the PET and MRI scans for sure. What is your thinking behind a colonoscopy before any radiation? 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Simply, if you need a colonoscopy..do before radiation since potential side effects from radiation can make a colonoscopy difficult.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Thanks...my husband has had colonoscopies, both with good results and isn't due for a while, but will certainly think about your advice. Thank you, again!

Gleason Score 9...
Posts: 62
Joined: Nov 2016

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!

Butch1969
Posts: 25
Joined: Jan 2016

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. 

Old Salt
Posts: 720
Joined: Aug 2014

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

Gleason Score 9...
Posts: 62
Joined: Nov 2016

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!

Will Doran
Posts: 207
Joined: Sep 2015

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

Gleason Score 9...
Posts: 62
Joined: Nov 2016

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!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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...
Posts: 62
Joined: Nov 2016

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's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

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...
Posts: 62
Joined: Nov 2016

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's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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 opt...
Posts: 2226
Joined: Apr 2009

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...
Posts: 62
Joined: Nov 2016

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...
Posts: 62
Joined: Nov 2016

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 opt...
Posts: 2226
Joined: Apr 2009

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

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hopeful,

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

ak61
Posts: 2
Joined: Dec 2016

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...
Posts: 62
Joined: Nov 2016

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's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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...
Posts: 62
Joined: Nov 2016

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 opt...
Posts: 2226
Joined: Apr 2009

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.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

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!

hopeful and opt...
Posts: 2226
Joined: Apr 2009

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...
Posts: 62
Joined: Nov 2016

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 opt...
Posts: 2226
Joined: Apr 2009

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's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

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...
Posts: 62
Joined: Nov 2016

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...
Posts: 62
Joined: Nov 2016

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

Gleason Score 9...
Posts: 62
Joined: Nov 2016

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
Posts: 184
Joined: Aug 2003

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

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