Some hope and some good news please

My husband aged 48 has been diagnosed with Prostate cancer- the PSA was 95 and gleason 9. He is doing the scan and bone test Monday. We do not know what to expect either way of the test- can someone offer us some sort of comfort in this all. I have not yet accepted this and do not know what lies on the road ahead. He obtained blood clots in April - and with some searching this now came out and was said to be the cause of the clots- What is the hope and what is the reality of this all?

if the test is negative - and if the test is positive and there is spread??
He has NO symptoms for prostate - NOT one side effect- hence why we still stunned and cannot believe this is happening..... It is still a shock - Could the doctor have got the biopsy wrong- just grasping at something as it just cannot be....

Sorry to hear your really bad news. It's a tough diagnosis, and being so young only makes it worse.

If scans are negative, treatment will be no easy road, but you have hope of a real cure.

If scans are positive, you still have genuine hope for many years of time together. My husband said, it's a very odd feeling to know what you're going to die of.....he's still working part time almost three years after diagnosis (G9 with bone mets), and life has in no way been terrible for him.

Others will be chiming in, but don't let your urologist depress you too much (assume that's who you're seeing). Dave's first urologist acted like Dave had Ebola and wouldn't meet our eyes after scans were positive. First thing the medical oncologist said was, "You'll still be here in ten years". (He had no basis for saying that, but it sure made us feel better. )

--Carolyn

LOML

Others will be checking in to offer their encouragements and their experience. There are a lot of G9 men out there who are doing well years after diagnosis. It's a tough thing to hear, heck it's tough to hear what I heard..and I'm lower risk.

For us to help you more, if you could tell us where you're located, we can likely lead you to where near you you should go for treatment.

Hello LOML, Welcome to the forum. So sorry you find yourself searching the internet for hope but glad you found us. Maybe we will have some hope to give you.

If you tell us where you live -- nearest big city is enough information -- then we might be able to suggest a doctor in your area who is a particular expert in prostate cancer. The suggestion of a second opinion on the slides from Johns Hopkins is a good one. If you haven't already, you should read our Newly diagnosed with PC? – read this thread first thread. It contains lots of information for the newly-diagnosed, including how to go about getting that second opinion on the slides.

We also have post that is just for Gleason 9 and 10 patients: The Gleason 9 Crew. If you scroll down to the fourth comment you will find a list we maintain of all of our Gleason 9 and 10 members. It tends to be comforting reading for newly-diagnosed high-risk men. The list is long. There are lots of names on the list and many are still active after years and years -- still active on the forum and still very active in their lives. I'm on the list and am doing well six years after diagnosis.

There is another guy who curates the list. He'll probably be along soon. We need to add you and your husband to our list. Sometimes I add names to the list but I frequently put them in the wrong place which just makes more work for him. I'll add you to the list if Redwing doesn't stop by in the next little while.

The tests the doctors will be doing in the next several months will be to decide if your husband's disease is curable at this point. The thing to remember is that "incurable" doesn't mean "fatal". Either way your husband will probably live a long and active life. "Incurable" disease can be managed for a long, long time and new treatments are coming out all the time. Whether or not the doctors decide it is worth trying for a cure there will be more doctors with other specialties. And we'll be here.

Hello LOML,

I am 48 and recently diagnosed if that gives any solace. I wish they started giving PSA tests from 40 - we would be much better off.

The fist few days to a few weeks are the hardest and then it becomes normal and part of everyday life - some call it the new normal.

Your husband's gleason and psa are not the best news you would hope for , but PCa treatments and drugs are evolving fast. The G9 crew will be chiming in soon.

The only thing I can recommend is to change to a plant based diet, eliminate sugar, add POM juice and have him take Vitamin D and/or sunlight.

LOML:

Hoping for negative scans. But even if not, there are plenty of treatments that will keep you managing the disease for many years. Keep us posted. Praying for good results.

My husband is also a Gleason 9. He was diagnosed while asymptomatic as well (2/2 of this year...worst day ever).

These first few weeks, when you're awaiting scans and results...let me tell you that for us those were the darkest days. It'll likely get easier for you when you have a clearer idea of what you're dealing with so you can get started.

As for hope and reality, I can share a quick summary of what I've learned in the past 4 months:

There is definitely hope for a lot of life and love ahead of you. Even if the cancer isn't locally contained (and we don't know that yet, let's hope it's still contained), there are ways to life WITH the beast.

If the cancer IS locally contained...there is hope for a total cure. With that PSA and Gleason score, a possible cure is would probably involve some hormone therapy and radiation, as well as possibly chemo (surgery is an option for some patients too).

Best of luck with the scans.

Post Edited (WifeofPie) : 7/10/2017 7:57:47 AM (GMT-6)

Wishing you the best. Lots of people here can relate to the shock of it all.

Nice and cogent responses...tho I disagree with a likely cure vis a vis wifeofpie....And that to your fresh ears...might sound awful...not so...just with todays treatments...he could live a very very long life...with no pca symptoms...but with treatment symptoms...which I will not get into now...So during the many many years I believe are available...there will be advances that will prolong that...I think its a waste of time for a second opinion on the gleason 9...he has prostate dancer...he has a psa of 95...that imo means its systemic...not in the local area in a curable state...via surgery or radiation...I am not an expert on Pca...less so on cancer that has metastazied ...I do not track who is gleason 9 and who isn't in a general sense...I am aware that there are many{actually I am a gl9}...and many were riddled with it be fore treatment...3000....5000 psa...who have psa's lower than mine{ that means very little cancer there..but stopping treatment will get it going again}...tho its been 2 years since I checked mine...I really don't want to go into my rational...suffice it to say my reasons make sense to me...period...so try not to worry...keep a positive and hope full attitude...Its not as bad as you are thinking...but you won't see that for awhile ...no one does..." Patience...always out of time...in time...at the same time "...not a puzzle... not a fact...a truth... Oh this is a personal view...

wow - the response has been so amazing- my reply being late which I hope does not effect the support etc- we are not based in the US- sadly as my husband was diagnosed in SA- I looked for people I could chat in search of answers- but there were organisations in SA but mostly with blogs and not many forums - and as i read and could see that there were a great deal of people in similar situations on this site- I had to have some comfort, words and thoughts. So when I see the mention of John Hopkins which seems so known by you- I have NO clue. @ Redwing- I am not sure if that is an issue then. As you stated to about treatment choices- I just hope and would think we do have that all available but would like to just confirm that with all once we get those results- as the urologist did speak of hormone and radiation- but while you getting all this information that you WERE NOT expecting at all- you sort of do not hear everything being said. And yes- google was a bit scary- there was so much said that can make one despondent.
We hope to have good treatment- so far the urologist has been very quick in the whole process once the PSA results came out. But did hope for better results like just a prostate infection.

I have no words but thank you that there is some glimmer of hope-thank you for the responses and the stories that have been testified. The G9 group is definitely something I will get my husband to join..thanks Jim.

So many here shared something different to piece together what we going through right now. Even now I do not think we have processed this.
thank you Carolyn- yes urologist does seem to make this sound like incurable means dying. ...what would the process be now- once the bone scan and ct scan done - does one now get referred to oncologist ----- I do so hope we have many years together still- especially at our age.
@Peter- we will definitely check the pages/lists. Thank you for other words of hope and encouragement and love.

Once we know in the week- we will post and will get my husband joined as he does not know what to expect at this moment.

thanks all
Lynn

LOML said...
...my reply being late which I hope does not effect the support etc...

Oh my, not at all! This is usually a rather drawn out affair, and we're pretty patient. It takes time to see doctors, get scans, see more doctors, pick ourselves up from the floor, and on, and on. Quite a few of us are here pretty often. I hope you find value here, and settle in. You're in for a rather long trip.

A couple of thoughts on this. You're terribly overwhelmed right now, too much is coming too fast, and you're barely able to hear it. That will get better.

This is a marathon run at a snail's pace. It is a long journey, requiring patience and persistence. It might help to think of it as an unwelcome new hobby.

One aspect of a Gleason 9 diagnosis is that the term "cure" is not often used. It's more about seeking a "durable remission", and that is often achieved. The Gleason 9 type is notoriously difficult to actually stop, though it can often be put to sleep for quite a long time. For us, it's perhaps better to think of this as a chronic condition, kind of like developing diabetes. Don't stress over "did we cure it or not". Rather, we're looking to slow, to stabilize, to manage a lifelong situation that we will always be watching, and treating as and when necessary.

Not a G9 sorry. I suck. Just a G-7 but hey, I was diagnosed at the age of 42 with a PSA of over 3200 and widespread metastasis. Bones Lungs and Lymph. FYI, that was in 2006. I am now 53 and my last PSA was undetectable. You asked for
Hope..... I give you
My Life. God bless.... Todd

And I am guessing SA means South America. Hopefully OP will let us know if she is from South America, Saudi Arabia or South Africa so the knowledgeable folks on this board can help her find the best medical practitioners.