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Posted 10/17/2015 1:40 AM (GMT 0)
Hello, I am new, just joined this evening.

My husband is scheduled for surgery in 10 days. open prostatectomy. His PSA is 19.9. Gleason is 4. Bone and CT scans were clear. He is 70 but a very young 70.

Can prostate cancer recur after all this? I am pretty worried. I wanted him to go online and join a group like this but he is just sitting across from me reading a mystery book of all things while I'm a nervous wreck.

Any advice for the wives/significant others? Thanks so much.

Kat
Posted 10/17/2015 1:51 AM (GMT 0)
Hi Kat,

Good group here, with a lot of support and information. I'm guessing your husband is a G8, 4+4?

There will be others that chime in on this, but some clarification will help.

PCa can recur depending on numerous factors, such as have cells escaped the gland, but yet remain at a microscopic level that can't currently be detected. Routine tests are run for many years, ten is pretty routine, to check for recurrence.

There are numerous wives and SO's here in this community that I suspect will be part of the replies you receive. Can you please provide some more details of the DX? Biopsy results, treatment for possible infections, etc.?
Posted 10/17/2015 2:04 AM (GMT 0)
Hi, I'm glad to hear that your PSA is down. Not sure what you mean by G being 8 but his Gleason score is a 4.
The 4 x 4 I don't know what you mean by that either, perhaps you can clarify for me. All we do know is that the cancer did not spread to his bones or anywhere else. Very high PSA score I would think it being 19.9 and only a few years ago it was in the 4.0 range.
I am glad to be somewhere that I can get information and support while we go through this process. I understand my husband's avoidance to the whole subject because that is how he deals with such things but I'm not going to go through this alone. Thanks.
Posted 10/17/2015 2:23 AM (GMT 0)

LionKat said...

Any advice for the wives/significant others? Thanks so much.

Kat

Kat, you need to read the sticky thread at the top of this forum.

Header is "newly diagnosed.

https://www.healingwell.com/community/default.aspx?f=35&m=2652250

Also

https://www.google.com/search?q=gleason+score+prostate+cancer&ie=utf-8&oe=utf-8

Then, hang around the forum reading threads, asking questions, etc.

Then after you have been around a while read the sticky again. It's a lot to take in at one time.

One thing you learn is that there are few definitive parts of this.

Another thing you learn, is that most PCa is slow, slower than most other types.

Hate you have to be here for your husband. Glad that someone is here for him, it has been my observation that there is much to learn that doesn't come from the Dr.
Posted 10/17/2015 2:28 AM (GMT 0)
Ken,

I'm sorry if I fail to meet the reading of the sticky note requirement you mention.

I thought my husband WAS newly diagnosed, since that only happened a couple weeks ago.

And here I thought I could go somewhere that I'd feel comfortable. Thanks for changing that for me.
Posted 10/17/2015 2:38 AM (GMT 0)
I am sincerely sorry if I have made you uncomfortable. I do a good bit of technical writing, so am probably drier on the page than I am in person.

I apologize for that.

Please let me offer you a warm welcome and assure you that my sole effort was to help point you in the directions that would help the most.

ETA - However that post I made might have seemed to you, this is one of the greatest groups of people you will ever find.

Don't let my not so good manner put you off.

Please.
Posted 10/17/2015 2:55 AM (GMT 0)
Thank you Ken. My emotions are so much so that I guess anything may trigger. I'm just so scared and afraid of losing my husband as he is primarily all I have in this world. My father passed away this year and I'm trying to handle that as well. My son has autism and I hate to say it like this but he cannot help me in any way. I'm the strong well-connected one and tonight it's just not working.
Posted 10/17/2015 3:05 AM (GMT 0)
Understandable. It's an awful lot to take in, and you have an awful lot on you and anybody would get stressed.

Haven't seen one post tonight but we have a number of wives that post here that are real sweeties.

Some of them also come to the forum because their husbands aren't forum types.

Hang in there Kat, it's an awful lot to handle and it's very confusing.

One of the worst things about this is there are no simple, or definitive answers.

One of the better things, is that for most people it is very slow moving and they have time to think over the path they are going to take.

Because there can be so many viable paths.
Posted 10/17/2015 3:49 AM (GMT 0)
Hi LionKat...

Welcome to our little piece of the world. Here you'll find much information and support. The reading of the sticky is not a requirement. It was only a suggestion.

You can read it anytime you'd like, or not at all...it doesn't matter. What matters right now is for you to understand that your husband hasn't been handed a death sentence.

There's still much to learn and living to do.

Just so you will know...my brother-in-law was diagnosed almost one year ago with the exact same stage of disease as your husband's. Their numbers are identical. Now...After treatment. ..no cancer can be found and he is working again.

It's tramatic having this handed to you.. But you're going to do fine.

Others will be along to offer more guidance.

I'm so sorry you have to be here bit so glad you found us.

Hang in there Kat
David
Posted 10/17/2015 3:55 AM (GMT 0)
Hi Kat,
Welcome to HW from one of the aforementioned wives! I am on the west coast and I generally post in the evenings, so my posts are usually read the next day or by insomniacs. There are a lot of us wives that do all the research and ask all the questions, and it's a good thing, because there's a lot of information and treatment options out there.
rolleyes
Best wishes to you and your husband. You will get accustomed to the abbreviations and PCa lingo as you visit and read more. I promise you wont find a more knowledgeable or caring group on any other forum. Including Ken...honest smilewinkgrin
Beth
Posted 10/17/2015 4:28 AM (GMT 0)
Hi Kat -

I'm sorry for what brought you here but glad you are here.

In the PC support groups I belong to, it is sometimes the case that men depend on their wives to become up-to-date and knowledgeable. I am a big advocate of patient empowerment, which means the patient (and spouse) bears the responsibility for making his own treatment decisions with the aid of his doctors. This kind of "shared decision making" is not for everyone and may not be for you. My parents, for example, preferred the paternalistic model - they expected their doctors to make the right decisions for them. I don't fault them for that or even believe the outcome would have been any different for them. All I can speak to is what gives me a greater sense of control, after this disease has taken so much of the control over my own body from me.

If you are interested in the approach I prefer, you might enjoy reading the sticky that explains the basics. For me, knowledge is the antidote to anxiety - for others, it might only serve to feed their anxiety. There is no such thing as a "Gleason score" of 4 - the lowest score reported since 2005 is a 3+3=6 - it is always expressed as the sum of two numbers. Epstein has a new system, where a "4" means a Gleason score of 8 (either 4+4. 3+5 or 5+3) - this may be what is causing the confusion. The reason any of this is important is because it affects which treatments may be curative for him. A Gleason score of 8 (Epstein category 4) puts him in the high risk group. You might wish to put his data into the MSKCC nomogram yourself to answer your own question about recurrence. Here's a link to it:
/www.mskcc.org/nomograms/prostate/pre-op

I think you will be pleased to find that his probability of cancer survival after surgery for the next 15 years is close to 100%. On the other hand, his probability that surgery won't get it all and that it may recur is probably closer to 1 in 3. With his surgery only 10 days away, I'm sure you've already discussed alternatives with various doctors and decided it wasn't for you. I hope your doctors have been completely honest with you about expected side effects of treatment, and he has realistic expectations.

Please let me and others know as specific questions occur to you. There's a lot of collective knowledge and experience on this site.
Posted 10/17/2015 12:31 PM (GMT 0)
Welcome, Kat. I am another one of the wives who does the reading and research for my husband. (He's "not allowed" to go to the doctor by himself any more. :) You've come to the right place for information and support. I'm sure the diagnosis is a punch in the gut for both of you. Your husband's avoidance may be how he is coping with the news. I think denial can get some people through a crisis initially.

Besides info from this forum, there are some excellent books which can help you understand more than you ever wanted to know about prostate cancer. Feel free to ask questions on here. There are many guys who are very knowledgeable and women who have been where you are now.
Beth
Posted 10/17/2015 2:14 PM (GMT 0)
Kay, welcome to the forum, so sorry you have a need to seek out the vast knowledge bank that exists here. But for sure you've come to the right place for that knowledge and support.

I'm not one of the very technically knowledgeable guys here, but since you are new here, I think it's worth pointing out, that Tall Allen is, and so you should take great comfort in his car moment that your husbands chance of 15 year prostate cancer specific survival for the next 15 years is close to 100%. When your mind starts to race, please come back to that thought.
Posted 10/17/2015 3:19 PM (GMT 0)
<edit> Well, read the below if you like, but I've apparently been under a rock with regards to the new grading system. It's been revised to make it easier to understand. Today's 4 would have been previously an 8, as I understand it.

One thing though, and I'm surprised nobody has mentioned it. Many would consider other treatment options other than surgery with that grade. Did he seek a second opinion? </edit>



LionKat said...
Not sure what you mean by G being 8 but his Gleason score is a 4.
The 4 x 4 I don't know what you mean by that either, perhaps you can clarify for me. All we do know is that the cancer did not spread to his bones or anywhere else. Very high PSA score I would think it being 19.9 and only a few years ago it was in the 4.0 range.

I'm certainly not an expert, but in layman terms the Gleason scoring system is two scores from each of the biopsy sampling cores. Two slides are compared, and scored. A Gleason 6 like I was dx'd with would be a G 3 + 3.

A score of G2 to G4 is considered to look very much like regular cells, and is would be considered very little risk of spreading. As these numbers go up, so to does the severity of the disease.

Check this WebMD page.
www.webmd.com/prostate-cancer/features/prostate-biopsy-and-the-gleason-score?page=2

The first thing my uro did was hand me Dr. Walsh's book, and it is a must read in my opinion. I would check with your husbands uro, as they typically have these to lend.

www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer/dp/1455504181

There is lots of good reading out there, this just happened to be what I was first exposed to. I will caution you one thing though, I radically changed my diet after reading this book in a knee jerk reaction. I would not recommend that, especially prior to surgery. I believe, as do many others here, that diet plays a role in this disease, but with everything else going on in your head after diagnoses, I believe the more reasonable approach is a moderate diet without immediate radical change. There will be time to ease into things after the surgery is completed if that is something he decides to do.

Post Edited (Thurman) : 10/17/2015 9:36:45 AM (GMT-6)

Posted 10/17/2015 3:20 PM (GMT 0)
Welcome Kat, and I hope you find this forum helpful. Since surgery is scheduled in 10 days, there are things you can do for preparation:

He should be walking, as much as he can, to keep the muscles in shape in his abdomen and pelvis.
You say he's a "young 70", that's good. Give him as many opportunities as you can to be sexually active in the days leading up to surgery.
Here's a suggested shopping list to have on hand when he comes home:

A small bucket to set his catheter bag in and for him to carry it around with him
Disposable waterproof pads for his chair (the doggie training pads are perfect)
A "donut cushion" is useful
A waterproof mattress pad for his bed
A packet of alcohol wipes
Depends pads for drips around the catheter

I found it useful to have a small table next to the recliner for my laptop, water mug, and tv remote.

If he doesn't know how to do them, google "kegal exercises" and he needs to be doing them regularly (several sets of 10 per day) to strengthen the pelvic muscles...this will help him get and remain continent after surgery.

We'll be here on the other side for you and him.
Posted 10/17/2015 3:30 PM (GMT 0)
Welcome aboard Kat!

First take a deep breath and try to relax, your husband is going to be fine! We are all here to help him and you so you are not alone anymore.

You now have many brothers and sisters to talk to, ask questions, even vent to if you want to. The weekends here are quieter than the week days so others will be along over the next couple of days.

All of us have been down the road you are now on and are now survivors and your husband will be also.

My PSA was 18 and I am currently cancer free. The Gleason score is a sum of 2 numbers Ex. 3+3=6, 3+4=7, 4+3=7. The first number is the primary number of the samples taken and the second number is the secondary number. So a Gleason 3+4=7, like me, means that of the samples taken, my primary scoring was a 3, so most of the samples were 3. That is better than say 4+3=7 or 5+4=9.

We have guys on the forum, that had PSA's in the hundreds even into the thousands that are still doing well so your husband's PSA is high but not THAT HIGH!!

I am at work now but I will post a link that I found here that helps you prepare for the upcoming surgery. It helped me a lot having discovered it about 1 week prior to my surgery. Helpful hints that I never thought of.
I will look for it and post it tonight if no one else does before then.

Bill from Florida cool
Posted 10/17/2015 4:16 PM (GMT 0)
Hi Kat and a welcome to you and your husband, although I'm so sorry you need to be here. Generally, a lot of "newly diagnosed" people that come here are trying to learn more about their diagnosis and see what their treatment options are. If I'm reading your posts correctly, I think maybe you're looking more for support, which is fine. We can do a lot of that as well.

My overall message to you is that your husband has a good chance to do well. As has been noted, we're a bit confused here about his precise diagnosis, but even guys with aggressive Gleason scores (mine was a 9) can do fine. I also was blessed with having a very loving and supportive spouse and that made all the difference in the world. The fact that you are posting here to me indicates that you will be providing your husband with that same support.

If there's anything we can do to help (or you do want to dig into some of the medical specifics), please let us know. Good luck to both of you!
Posted 10/17/2015 7:29 PM (GMT 0)
Hi Kat,
Not everyone is comfortable with emails posting on a website, and they would rather email one-on-one or even talk on the phone. If you double click on our usernames (in blue) then most of the time you can find our personal email addresses. You should feel free to contact directly anyone who has listed their address, and you can even ask them for their phone number if talking works better for you or your husband. Support to you and your family is what it's all about.
Best wishes,
Jim
Posted 10/18/2015 5:28 PM (GMT 0)
Hello Kat,
My BF was just diagnosed 2 days ago, I sought out this forum immediately after the biopsy 2 weeks ago. We are now researching treatment options. I don't have your additional family problems. However, I have found so much information, knowledge, guidance, support and comfort here. It is truly a loving, caring community that has helped alleviate some of my fears, and answered many questions.

Please know that you are welcomed warmly! Feel free to contact me if you like.
Posted 10/18/2015 11:22 PM (GMT 0)
Hi Kat
You've come to a good place for advice, but we're not doctors. The most important thing for you to do is be sure you are seeing highly qualified and experienced experts including urologists/ surgeons, and radiation oncologists. You should also send the biopsy slides to Epstein at Johns Hopkins or Bostwick at Bostwick Labs for a second opinion.
I'm not sure why surgery was chosen. As has been explained your husbands Gleason score is the sum of two numbers. The first number is the most prevalent and the second number is the next most prevalent type or degree of cancer. Category 4 represents aggressive cancer based on its density. If you have ten samples and they are all equally dense or undifferentiated the score would be 4+4=8. For example My score was 4+5=9 meaning category four were the most frequently seen and category five were the second most frequently seen in the samples taken. So if your husbands primary score was four, he could be Gleason 7, 8, or 9 depending on his secondary score.
Frankly, Gleason 8-10 are very high risk meaning there's a high likelihood the cancer has spread beyond the prostate and is somewhere in the prostate area or pelvis which would be termed locally advanced. If it's caught early that's likely the case. If it's caught Late the psa is usually higher and the cancer could have spread into lymph nodes or bones or even into distant organs.
This is unlikely with your husband. My Gleason 9 , two years after surgery, is thought to have spread to two pelvic lymph nodes based on a recent MRI with contrast. Previous MRIs and bone scans found nothing. So I'm now on my second round of radiation and hormone treatment.
This is long winded but I'm trying to point out that you need to find out a lot more before making a treatment decision. And surgery is unlikely to cure the cancer if it has spread because the surgeon can't get it all. It's now up to radiation. I hope I'm not confusing you or telling you what you already know and I hope you have gotten good advice from your doctors. This disease is heterogeneous and there are many different ways of treating it depending on its seriousness. Good luck with whatever you decide to do.
Bob

Post Edited (Break60) : 10/18/2015 5:28:50 PM (GMT-6)

Posted 10/22/2015 9:16 PM (GMT 0)
Thank you all so very much for your advices! I appreciate it so much. I finally was able to secure a copy of my husband's prostate biopsy report. It says this: Adenocarcinoma (Gleason Score 4 + 3 = 7) involving 15% of the specimen 1 of 1 cores contain cancer, Cancer length 0.29 cm.
Provided ICD-790.93. PSA: 19.9ng/ml. That's the general scientific info. Monday is approaching and I may take a few of you up on private conversations. I'm holding both of us together at this point. He still sits on the couch and reads book after book while this is going on. I know he needs escapism but I'm going through this too. Thank you all again.
Kat
Posted 10/23/2015 1:52 AM (GMT 0)
Kat, a G3+4 on a single core is at the lower end of the risk scale. This is, in fact, good news. It means, at it's most basic, that it's likely that any of the common treatment modes--Surgery or any of the common radiation therapies (external beam or 'seed') is likely to be curative. He's got a very good chance of doing treatment, and then being done except for regular blood tests for the next several years.

So, this is GOOD NEWS. It's not a death sentence, not by a long shot.
Posted 10/23/2015 3:07 AM (GMT 0)
Puts you right in the treatable zone.

Won't be fun getting to the other side, but you've got plenty of options and every hope for a good outcome.

Let us know what happens on Monday,
Andrew
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