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Posted 1/21/2017 4:31 AM (GMT 0)
UPDATE: we have been in the hospital now for a few days. They can not figure out what is causing his on going fever. He had a drain put in yesterday but things gradually kept getting worse. He was put on oxygen and still not able to do much due to breathing issues. They inserted a tube through his nose to his stomach to suck out the bile. That relieved a lot of pressure off of his stomach and breathing got a bit better. Tomorrow the general surgeon will be innto see if he needs to go in for another surgery.

Thank you all for your kind words. It means a lot to have others that understand. Please continue to keep us on your thoughts and prayers. We have read and discussed each and every reply you all took the time to write. Hugs, Mary



Hello all. My husband and I will both be on here reading all we can about PC.

My husband 48 years old was diagnosed with prostate cancer after his PSA led to a biopsy. 11/22/16. His cancer is a rare type of cancer called signet ring cell. His Gleason is 10.

With his cancer type the wanted us to hurry and have surgery. Us being panicked chose the robotic surgery. He had surgery on 1/13/17. A week ago today. We aren't sure if this was the right route to go but we did and there is no looking back. What's done is done right? We used a urologist in our town for the surgery. His job we feel is done. Next week we have an appointment at MDA in Houston with a cancer specializing in rare prostate cancer. We want to plan our route from here.

This has been a huge shock but we are staying positive and trying not to let the cancer define life. Although right now it kind of is. This catheter isn't any fun at all! Just wanted to introduce ourselves and hope to learn and help as much as we can.

Thank you to everyone who contributes to the forums. It's nice to know there is some place to come for help, understanding or just to vent.

Post Edited (Fatherof6) : 1/24/2017 1:02:54 AM (GMT-7)

Posted 1/21/2017 5:03 AM (GMT 0)
Hello, wife of father of 6 - I am not familiar with signet ring cell, but with a gleason of 10 - you get the biggest gun you can find, you load all barrels and you FIRE!
Good for you for acting promptly.
This forum is great for information and support. You will learn a lot by being here - I know I have.
Stay positive - you are right, the cancer does not have to define your life. Every day we have is a blessing, regardless of our circumstances.
You have my support and prayers.
Jeff
Posted 1/21/2017 6:18 AM (GMT 0)
you're doing the exact right thing....getting to a center of excellence. MDA saved my sister's life with treatments they had a big hand in pioneering during that time (breast cancer....30 years ago now).

Her husband was diagnosed with Gleason 9 and was operated on at John's Hopkins 2 years ago. Then he had some radiation and drugs (no chemo for him). He's as healthy as I can remember him ever being.

They also questioned his operation after the fact. That was then. This is now. (they both still refer to their weeks in Baltimore with fondness....as a couple)

That distracted feeling and thinking will start to fade once there....with a plan of action.
Posted 1/21/2017 7:10 AM (GMT 0)
I want to extend a heartfelt welcome to you both. It is very upsetting circumstances that bring you here. I can't recall a G 10 here at such a young age. But you are taking proactive steps with a positive attitude. Good for you! Getting the most knowledgeable team in place will help you achieve your goal of getting back to a more normal life. Meanwhile, you have come to a good place for the support you need from fellow brother and sisters. Best of wishes to you and your family.
Beth n Gary
Posted 1/21/2017 1:44 PM (GMT 0)
Welcome to our forum. You'll find a number of folks here dealing with the high Gleason 9 and 10 cases. This is what's called in the new rating system as the Gleason Grade Group 5. The point is these cases, G9 and 10, do need the most aggressive treatments. You're off to a good start. Did they do an MRI to determine the staging of his case?

This link is to our G9 Crew thread, including G10s too: The Gleason 9 Crew -- Part 2, continued.

I've added you to the roster there. If you look it up, you'll find others, including links to their original posts. You might find their treatment decisions to be of interest. There are a very few G10s there; we had six in all of 2016. There were just four G9 5+4 cases, and 12 G9 4+5. These are all pretty similar risk cases, but it shows how few of us there are.

We're all here to help in any way we can.
Posted 1/21/2017 1:50 PM (GMT 0)
Excellent choice going to MDA, they managed my entire PCa treatment after a biopsy by our local urologist. Once you have a patient ID number from MDA, call the Rotary House hotel as far in advance as possible to reserve a room. Rotary house is on the MDA campus and you can walk inside to practically all of the clinics and labs. They have a nice restaurant and bar as well.
Posted 1/21/2017 3:48 PM (GMT 0)
Wow! Thank you everyone for the warm welcome and advice. Much appreciated. we don't have the results back from after the surgery yet. Once we get that we will know more. It's nice to hear that we are on the right track. We will continue to read all we can and will definitely check out the Gleason 9 crew. This is all still so new we are still trying to digest it all. Thanks again.
Posted 1/21/2017 6:48 PM (GMT 0)
Fatherof6,
Heartfelt welcome, from a Fatherof2. You will find lots of great advice here, you have come to a great support forum, keep with us , keep us posted on your progress. MDA is very top rated, so you are going in the right direction. With being so young, you probably can fight this better than some of us who are older.

Just a suggestion to read the top "stick pin (sticky threads)". Also , some very great Letters can be found in the search box, at the very top under "Join Healing Well, just type in the search box "letters to the newly diagnosed". You will find comfort and hope in the thread there.
Keep up the fight
Wings of Eagles aka Dan
Posted 1/21/2017 6:58 PM (GMT 0)
Coincidentally enough, I, too, have been diagnosed as a Gleason 10 with the signet ring cell variant. In July 2016. I am sorry that your husband has been similarly diagnosed, but that is not meant to suggest that the outlook is dire for him -- or me. I think much will depend on the pathology reports after the surgery, on evidence of metastasis, and on the PSA scores to come over a period of months and years.

Important: Don't let others' uninformed fears or assumptions of poor prognosis infect your own thinking. Remember, there have been so few rigorous studies about this variant that no standards of care have evolved for it, at least to my knowledge.

I do know that the prevailing advice is to throw everything you can at it, to aggressively use the strongest, biggest guns: surgery and radiation and drugs. If you choose that route, please take time to assess the impact on quality of life such an approach might have. Others, including your doctors, will be focused primarily, and understandably, on quantity of life, but with no Level One studies to guide them on how best to maximize quantity of life when treating PCa with the signet ring cell variant.

I am not/not suggesting you use quality of life as the determinant of treatment. But I am suggesting you include it on your list of things to think about. There might be a treatment course you and your doctors like that preserves and protects quality of life better than another course.

I think your move to find someone who specializes in rare forms of PCa is an excellent idea, exactly the right thing to do. I chose a different treatment route than your husband as my profile indicates. But that is not to say I chose a better treatment. Who knows for sure? Only time will tell. My best to you and your husband. Good luck.
Posted 1/21/2017 7:40 PM (GMT 0)
Logothetis at MDA and his department are known for their work with rare types of PC.

This is such a rare disease that no one knows which therapy will work best, but some do appear to work. Here are some case studies from the Mayo Clinic that might give you hope...

Case study said...
A 51-year-old man presented with a history of a robotassisted radical prostatectomy (RARP) performed at an outside facility. He was found to have a Gleason 3+5=8, T3bN0MX adenocarcinoma with signet ring cell features and positive margins. The patient underwent a complete evaluation at the outside facility, including imaging and colonoscopy. However, only computed tomographic and bone scan findings were reviewed at our institution, which were negative for evidence of metastasis or for a primary tumor of a different origin. The patient underwent external-beam radiation therapy at an outside institution (dose unspecified) and is currently alive with no evidence of malignancy.

Case study said...
A 59-year-old man presented with an elevated PSA level of 4.8 ng/mL. He underwent a transrectal needle biopsy demonstrating a Gleason 4+4=8 adenocarcinoma with signet ring cell features (Figure). A thorough GI work-up was performed; cystoscopy ruled out metastasis or a primary tumor of a different origin. Physical examination demonstrated an enlarged gland, with minimal induration on the left. The patient underwent a RARP with bilateral pelvic lymphadenectomy. Final pathologic stage was Gleason 4+4=8, T2bN0M0 with signet ring cell features. The patient began receiving adjuvant hormonal therapy and will continue this therapy for 2 years.

Case study said...
A 67-year-old man who was being evaluated for a recurrent polyp in the hepatic flexure had abnormal findings on digital rectal examination. Biopsy of the prostate was performed, and pathology showed a Gleason 4+5=9 adenocarcinoma of the prostate with signet ring cell features involving 25% of the cores. The patient's pretreatment PSA level was 1.9 ng/mL. Other than the colonic polyp, no other evidence of malignancy was found on computed tomography, bone scans, and multiple colonoscopies. The patient elected to undergo hormone therapy while he underwent a right hemicolectomy for the polyp, which was found to be a tubular adenoma with high-grade dysplasia. The patient underwent external-beam radiation for a total dose of 7600 Gy in 38 fractions. After completing his radiation, he stopped his hormonal therapy. To date, he has no detectable PSA level.

Case study said...
A 67-year-old man underwent a retropubic radical prostatectomy in 1988 at an outside institution. Pathology demonstrated a grade 3 of 4, a Gleason 3+5=8, N0, M0, stage C adenocarcinoma of the prostate with signet ring cell features. The patient developed a PSA recurrence and was treated initially with leuprolide. Two years later, he had a PSA failure on androgen blockade and was referred to our institution. The patient underwent contrast-enhanced computed tomography, the results of which were normal. There was no record of a colonoscopy, and a bone scan at the time of consultation (4 years after prostatectomy) was positive for distant metastases. The patient continued taking leuprolide and remained asymptomatic at his last follow-up in 1993. The patient died 9 years after his initial diagnosis of unknown causes.

Posted 1/21/2017 8:32 PM (GMT 0)
Welcome you 2 !!!!!! yeah ..David
Posted 1/21/2017 9:57 PM (GMT 0)


Hello Father of 6,

Wanted to extend a handshake of support to you both, from across the miles. All of us here have stood at that "spot in the road' where you now find yourselves. It's life-changing when you hear the news of a health diagnosis.

We're here to support you ... with words of advice, when asked ... listening ears ... moral support ... and insight gleaned from our own first-hand treatment experiences, gathered over time.

We've got dedicated members here, from every "corner of the country" ... and loyal members, from across the globe, as well. Our members check in here, 'round the clock, weekends and holidays, 365 days a year. There's tremendous care and compassion to be found here ... check in often !

We are in the same age range, and it's sometimes comforting to know you are not alone, in terms of comrades and peers. I was in my 40s, just as you are now, when I received the unexpected news of my prostate cancer diagnosis. I'm a school teacher and had been teaching almost 25 years ... my diagnosis coincided with the start of a brand new school year.

My PSA was up over 100 at the time of my diagnosis, and my prostate cancer had already infiltrated both of my lungs at that point in time. There was no time to waste, in my case, and my treatments started immediately.

Since that time, I've had very meaningful successes with my treatments ... I have stayed active throughout it all ... I teach school every day ... I exercise daily ... I have continued pursuing my hobbies and interests ... I attend social events ... I set daily goals ... and I do my very best to keep living life to the fullest extent, each day.

We all encounter some physical and emotional side effects, as a result of our treatments. With that being said, I wanted to share a message of encouragement and HOPE with you.

Along the way, you will find support emerging in incredible ways from neighbors, community members, work colleagues, old classmates, church members, your doctors and nurses, and of course, your FAMILY ... all of these people will surround you ... they are your SUPPORT TEAM ... embrace them ... and allow them to encourage you and support you in your treatments.

I felt that since we are in the same general age range, it would be helpful for you to hear "another voice" from "one brother to another brother" ~ had we grown up in the same town or neighborhood, we might likely have been friends while growing up.

Your treatments have started ... you're taking a proactive approach to your treatments ... you are facing forward with a positive outlook ... all of these things will continue to lead you forward.

Over time, I've found that staying connected to family, friends, and faith, in whatever form that takes for you, will always serve you well, each and every day ...

Several of us here have worked collectively as a group ... we have assembled a thread entitled "Letters To The Newly Diagnosed" --- simply type that thread title into the SEARCH BAR at the top right-hand corner of your computer screen ... these letters will provide you with hope, encouragement, and inspiration in the days ahead.

Looking back to when I was first diagnosed ... I think that's what every fellow needs the most, when he first hears the news of his diagnosis ... some encouragement ... some HOPE ! I'm hoping that something that I've shared from my experience will do just that for you today.

Your decision to visit M.D. Anderson is a wise choice ... many members here have received top-notch medical expertise there. It's a world-renowned medical facility. You deserve the best !

Checking in here is a tremendous way to garner support --- it's a website where there is "give and take" --- you can share --- you can contribute --- you can post questions --- you can post your own experiences. Our goal is to walk together on this path, united, and help each other along the way ... it's a tremendous resource.

With that being said, I want to wish you well in your treatments. Visit here often ... we'll leave the front porch light on for you !

Sent with my best,
"Cyclone Team Fan" ~ Iowa State University
Posted 1/21/2017 11:10 PM (GMT 0)
As always, the wonderful people here at HW have extended their warm welcomes to you, so there's nothing I can add, except to say you have come to the right place for knowledge, advice and support. I know how scary this time is for you, but please know everyone is here for you; day and night - you have just found yourselves the best forum available, with the nicest folk on it! My hubby was driven completely bonkers by his catheter, but it won't be long before it's gone and he will forget all about it.
All the very best to both of you, and please keep everyone updated with your progress.
Best wishes, Jaybee
Posted 1/22/2017 4:45 AM (GMT 0)
Just want to add my welcome. Every cloud has a silver lining, and in some ways the silver lining here is finding this forum. It was, and still is, a godsend to me, and I know it will be to you guys as well.

Good luck, please keep,us posted.
Posted 1/22/2017 6:51 AM (GMT 0)
Hi fatherof6, welcome and sorry you have to be here. You guys are on the right path it seems. Load your brains with knowledge of your disease and different treatment paths and this will be an easier journey. I wish you the best on your treatment journey. Please keep us posted. Take care. -JR
Posted 1/22/2017 9:28 AM (GMT 0)
Thank you all for your warm welcome. Tall Allen, thank you for those case studies. I read them to my husband just to show him we have a good fighting chance. We are both trying to stay positive about this whole thing.

Boon, I'm sorry to hear that you also have the signet cell. I have researched so much and there really isn't a lot to see about it in the prostate. We do plan on fighting as hard as we can. My husband went with the suggestion of the doctor to have the surgery. I think it gave him peace of mind to know that the large of the cancer would be out of his body.

Tonight we are sitting in the emergency my husband has a 104 temp and a lot of belly pain. The doctor just came in and said the CT found a huge pocket of fluid in his belly indicating infection. They are sending us upstairs to wait on urology to determine if they want to do surgery or put a drain in. Wish is luck.
Posted 1/23/2017 8:29 AM (GMT 0)
I'm so sorry that you are dealing with the fluid in belly and infection. Keeping you in thought and prayer as we wait for your update. Hopefully they can get it controlled quickly.
Beth
Posted 1/23/2017 4:36 PM (GMT 0)
Father of 6- sorry you had to join this club. But now that you're here, rest assured, you are in the right place for support and information.

You just got through your surgery, and already a complication! Hopefully it is just an infection, and it will cleared up soon. You can get your strength back and head towards the next round of your treatment and cure.

Hang in there!
Posted 1/28/2017 7:55 AM (GMT 0)
Hello,
I have been wondering how you are doing since the discovery of infection and fluid. Still sending healing vibes your way and looking forward to an update.
Best to you,
Beth
Posted 1/28/2017 8:05 AM (GMT 0)
Oops, I just saw your update in the initial post. Most definitely will keep you both in prayers that this infection will clear up. If you post further updates as a new post, it will bring the thread back to the top. Many times we forget to look beyond the first page and right now you need all your brothers and sisters pulling for you to get through this. You are not alone. We are here for you as much as cyber allows...so hugs and healing thoughts across the miles.
Beth
Posted 1/28/2017 3:02 PM (GMT 0)
Thank you so much for taking the time to keep us informed. You and your husband are in our thoughts and prayers.
Posted 1/31/2017 4:00 PM (GMT 0)
Hello everyone. Thank you so much for thinking about us. I apologize for not being around to update. My husband is STILL in the hospital. It's been 11 days straight now.

He still has the infection in his system and it is causing abscesses all throughout his abdominal cavity. He is actually in surgery now having 3-5 more drains placed in his abdomen. If they have to put all 5, he will then have 6 drains and his catheter to deal with. It all depends if she can drain more than one with the same drain. All of the pressure from the abscesses have caused one of his lungs to partially collapse so he is also dealing with breathing difficulties.

As I was writing this the dr just came out and said she ended up putting 4 drains in and took out a liter of pus! This should help.

They said he will stay here at the hospital for a day or two and then he needs to be transferred to a rehab center because he will need medications and all of his drains taken care of. I would love to take him home but with just one drain, it was needing drained about every 30-40 minutes.

This has been a hard battle and seeing him lose weight and become so weak has been difficult. We are both staying positive and feeling blessed that we have great doctors and nurses. He does have ecoli so he's been secluded to his room and he is going a little stir crazy but hopefully his scenery will change soon.

Hope all is well on your end and again thank you so much for checking on us. We appreciate any prayers. Mary
Posted 1/31/2017 4:35 PM (GMT 0)
Sounds like you have more positive news. That's wonderful. Be patient and take those small steps. Good luck with recovery. Then move forward on treating the cancer.
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