Father-in-Law newly diagnosed, help

Hi everyone,
I am glad I found this site. My FIL has been recently diagnosed (Jan 3rd) we are waiting for the bone scan results. I am just hoping for some info or similar stories. His PSA was 53.6 does that sound right? (my mother-in-law sometimes messes numbers up) His Gleason was 9....not sure if it was 5+4 or 4+5, which I know makes a difference. I am getting the, the book recommended on this site "Surviving PC". Is there anything special or ways to talk to him without causing stress for him? Anything that shouldn't be said or should be said? Any other suggestions?

Thanks, Stacey

How old is he?
Gleason 9 is pretty aggressive cancer. They may decide to skip any surgery as too late for that.
There is radiation and hormone therapies.
There is a vaccine Provenge.
There are new treatments coming in the next few years.
We have some members here who have gone a long time with such cancer.
Good luck.

Stacey, I was 67 when I was diagnosed with Gleason 8 which is also aggressive. My PSA was only 3.7 at the time. It is important to know how many cores were positive and what percentage was cancerous. It makes a big difference in deciding what course to take. I only had 2 cores out of 12 that were positive and the percentage was low as a result I opted for surgery. Good luck

Stacey -- the gleason and PSA numbers suggest that the cancer is aggressive and advanced -- growing quickly and spread systemically.  the good news is can be treated.  there is plenty of hope and i'm not just say that to make you feel better.  i really mean it.  right now is a very tough time for all of you.  we've all been through it.  hang in there and please keep us posted.

ed

 

Stacey,

Unfortunately, welcome to the site. A PSA of 53.6 is high but not uncommon.  I had a PSA of 54.9. I am a Gleason 9 as well. Aggressive implies faster or more unrestrained growth. "Cores" is a another term for samples. You can look at signatures from various posters here to get a sense of what a profile looks like. You should do the same for your FIL .. might help with posting on this site.

It is likely (assuming the bone scan is clear) your FIL will be advised to consider external radiation combined with hormone therapy for 2-3 years. Surgery is not out of the question but he will very likely need the radiation + hormone therapy anyway. I did all three.

Welcome to HW. Seems like you have arrived here the hard way.

I am a fellow Gleason 9 (4+5), and had 9 of 12 biopsy samples/cores come back positive. My PSA was 7.2.

The PSA is whatever it is. There is no right or wrong. You can have a very high PSA (even into the thousands) without PCa (prostate cancer), and a very low one, but have agressive PCa. It will help the doctors with statistics for planning treatment. If you had arrived before the biopsy, there would have been a suggestion to do a round of antibiotics just in case the PSA was generated by an infection. Just to understand here that the PSA is one of the indicators, not definitive on its own. But the biopsy is positive, so all that discussion is to the side now.

It is more "interesting" to know what his PSA has been over the last few years (has it been steadily or quickly increasing).

I had surgery, then radiation therapy (RT, IGRT, IMRT). Someone made a comment that it was late for surgery. That would only be a speculation, and if your FIL was over 70, perhaps true (my uro/surgeon suggests only RT for older men due to the side effects of surgery). There is a significant discussion your FIL has to have with his doctors to understand the side effects and values of the various treatments they will offer.

Aggressive means that the PCa is likely to spread, as opposed to Indolent, which means it may sit and cause no real issue for the rest of one's life.

With those who know about my PCa, I am very open, and little, if anything, is off limits. However, because of my job situation, there are many with whom I do not and can not discuss it. I know many men who just refuse to talk about it at all. You will just have to find your way by offering to be supportive, and open to talk if he wants to.

Thanks everyone. I have been on Yananow and I am reading tons of stories.

So what is worse the PSA or the Gleason? How do they relate to one another or do they have no relation?

My Husband feels this is a death sentence for his Father, which is wearing on me. I am optimistic (holding out hope for the bone/lymph tests). From what i have read it appears that it will be stage 3 or 4.

Is there a website that explains the best way to approach this? Removal of the prostate or not? External radiation? HT? Why would they not remove the prostate?

Very sorry to hear about your father-in-law.  Any cancer diagnosis is a real blow and I can well recall how I felt when I was trying to come to terms with mine. 

You ask, "Is it a death sentence?"  The short answer is "no," but it's a serious situation.  Ever since my own diagnosis, it has been obvious to me that we're all living under a death sentence every day of our lives.  It's just that, once in a while, something comes along which makes that inevitable death sentence much more obvious, and that is disconcerting, for lack of a better word.  Hopefully he'll be around for many more years, but right now he's seeing the writing on the wall.  That's natural.  But that "wall" is likely much farther away than it appears to him right now.

Find the best urologists, oncologists, and prostate cancer specialists in your area.  Get the very best docs you can find, and don't hesitate to seek second opinions.  In fact, some would recommend that you consider getting a second reading on the biopsy slides.  Certain pathologists are known for their expertise in interpreting pathology results.

Being newly diagnosed with cancer is a lonely and terrible feeling, and he's blessed to have a concerned and loving son and daughter-in-law. 

Here at HW you'll find a community that has dealt with every aspect of the disease, and everyone I've met here makes every possible effort to be helpful and answer questions.  (and, as they say, there are no "dumb questions.)  Ask anything.  Cry, pray, and fight the disease using every available tool.  We'll all be here for you.

Sorry to hear about your FIL.

I'll try to answer some of your questions. I, like most or all of us, am not a doctor, just a patient.

"So what is worse the PSA or the Gleason? How do they relate to one another or do they have no relation?"

The PSA is a blood test, and the Gleason is determined by doing the biopsy and then looking at the cells under a microscope to see how disorganized they appear. The more disorganized, usually the more fast growing and dangerous the cancer. Other things being equal, a larger PSA means a bigger cancer; and a higher gleason means a faster growing cancer. But some high gleason cancers don't give off much PSA -- and other things are rarely equal. In any case, the PSA is important as an earlier diagnostic but it less important now that you have the gleason information and know that all of the cores/samples are positive, which means the cancer has spread widely within the prostate gland. It may have spread beyond, but you don't know this yet.

"Is there a website that explains the best way to approach this?"

I'll second the advice to stay away from most websites. The only websites I'd check are pubmed (if you are comfortable reading technical information), Dr. Mark Scholz, Dr. Charles "Snuffy" Myers, or the web sites of leading medical institutions like Sloan Kettering or John Hopkins. Most of the web stuff you'll find is unrealistically pessimistic, outdated, unproven, or just plain wrong. The books by Patrick Walsh is a great place to start.

If you are comfortable with understanding probabilities you might want to check out the Sloan Kettering nomograms, which give the probability of various outcomes and various treatments. You will need to get all his test results data to use these, however.

"Removal of the prostate or not? External radiation? HT? Why would they not remove the prostate?"

In terms of the options, it goes roughly like this -- and this is an oversimplification but good for starters:
Cases are ranked "low risk" , "intermediate" , or "high risk" based on PSA, Gleason and other tests that will be done shortly for your FIL. Your FIL is "high risk". For high risk, surgery or radiation alone is rarely curative. Most doctors go with a multi-pronged approach for high risk cases, such as a combination of hormone therapy and radiation. The question of whether to remove the prostate at all depends largely on whether the doctors think that the cancer has spread beyond the prostate. (There are tests to check for this.) If so, most docs will skip surgery and focus on radiation and hormone therapy (HT) instead. But some docs think it is good to "debulk" the cancer by removing the prostate even if the cancer has already spread -- and then follow up radiation and/or HT. The science on this is moving quickly and highly regarded docs sometimes disagree.

The key points are (1) this is fast-moving science and new treatments are announced practically every month (2) there are many good strategies to consider, and many patients with similar stats have enjoyed long remissions of a decade or more (3) encourage your FIL to take the time to become educated about the options, get multiple opinions before rushing into anything.

good luck

Stacy,
A gleason 9 is an aggressive type of cancer which means it grows and spreads faster. A psa over 20 with a high gleason is indicative that is is growing beyond the prostate, most likely in the lymphnodes. A good book at this point would be "A Primer on Prostate Cancer" by Dr Stephen Strum a well noted prostate oncologist. It would also be prudent to see an oncologist specializing in prostate cancer in addition to your urologist. What state does your FIL live in? Finding the best oncologist possible will definately impact his outcome.
JohnT

Hi Stacey
My hubby had a Gleeson 9 (4 + 5 ) and a PSA of 8.1 with 3 of 12 cores positive. He is 57 and had surgery on the 23rd Nov and his post op PSA was .8 so his Urologist has recomended Radiation Therapy as a "mop" up. The shock is hard to get over but this forum is prob the best sorce of information that I have found. There is also a female's Prostate Cancer Forum that you and your MIL might find helpful.
www.ladies-prostate-forum.org

Take a deep breath and make sure your husband has his PSA checked as suggested above.

Stacey, Ken S had a very good suggestion that your husband have a PSA test. With his father having prostate cancer, your husband's chances of developing prostate cancer are also increased. A PSA test soon would establish a base number so future PSA tests for your husband could be compared to the base number to see if there is any upward trend of his PSA. I know this is a difficult time for you and your husband but getting a PSA number in the not too distant future to use as a base number could turn out to be very important.

Hi there.

Cypress isn't that far from Marina Del Rey, home of Dr. Mark Scholz, one of the few medical oncologists expert in prostate cancer. I am one of his patients and I would highly recommend that you go see him. I also am a Gleason 9 case, without such a high PSA.

Dr. Scholz co-authored a book called "Invasion of the Prostate Snatchers," which is particularly aimed at those with less serious cases. But he is affiliated with the Prostate Cancer Research Institute, which provides extensive, free information online about prostate cancer and treatments. He has authored many articles there, and he deals extensively with high risk patients. He has treated thousands of patients, and is well respected in the field.

I wish your family the best in dealing with this nasty disease. I'm sure you will soon have a better handle on your options and the panic will subside. There are many treatments even for aggressive cases, with more in clinical trials or under development. There is much reason for hope.

Nellie