Dad just diagnosed with PC- scared, please help!

nicobus · New User Joined: 21 Mar 2008 Posts: 3

Hi
Wow, I just learned as of yesterday that my father was diagnosed with Prostate Cancer. I have no idea what this means or what the outcome may be. I have been researching like crazy and I was hoping someone here would have some information for me. All I know if that he had a low PSA (3.4) and a high Gleason score - 8. When the did the biopsy it was in only 2 of the 12 samples and the 2 were right next to each other. He is having a bone scan, etc next week as well as talking to a surgeon about this. When he had the ultrasound they did not see anything and I'm not sure but I think he mentioned the gland was only slightly swollen (?)

I think the urologist gave him the impression that they caught it early and that it seemed to be localized, but i'm sure they won't know until they do surgery, etc. if that is the course of action. Can anyone decifer all of this for me? Any research I do just talks about doom and gloom of this gleason score...i can't find anything encouraging! Any comments or info would be so appreciated!

thanks!!

johnw100

It's not all gloom and doom, and there's no need to rush into hasty decisions before fully considering the options. To do that you need to firstly obtain full details of the biopsy and reports which will have additional information.

The fact that only 2 of 12 samples indicated cancer is a good sign, as this makes a big difference to risk consideration, especially in higher risk situations. The biopsy report should also indicate the % of cancer in each of the positive samples.

Because biopsy readings are subjective, it's important a 2nd reading be obtained if that has not already been done. The slides should be sent to a pathological prostate specialist.

It's unusual for bone scans to show any metastases unless PSA is over 20, and they are often not done routinely.

It can sometimes be difficult to obtain an objective view: many favour surgery regardless, but treatment options vary with the diagnosis and situation. Obtaining objective advice and selecting a top doctor is very important, regardless of the treatment you choose.

There's plenty of information available. The yananow site has lots of details on treatment options, and stories from men who have used various treatment options in the mentors section.

One very good overall book I've read on the subject is "Prostate Cancer Prevention and Cure" by Lee Nelson MD. Although written a few years ago, it's very comprehensive and covers diagnosis, selecting your doctor, treatment options, lifestyle changes, diet, nutrition etc.

There are many informative books, but the reason I suggest this one in particular for you is that Dr Nelson was diagnosed with higher risk PC himself, I think about 8 years ago.

Best wishes.

nicobus · New User Joined: 21 Mar 2008 Posts: 3

John-
Thank you so much for your reply....it has been so helpful to look through these forums and learn as much as I can about his condition and what the possible options are that he can choose. I think my dad is on the surgery bandwagon because of what he has read about the severity of the Gleason 8 score. After speaking with him more this weekend I learned that the 2 of 12 samples had different readings. The one sample was 3+4=7, and I believe 40% of the sample and the other was 4+4=8, 50 % of the sample. 'm not sure what that means if anything...but I'm hoping since one sample was a 7, that increasing the odds in his favor. I know the urologist mentioned that nothing showed up on the ultrasound and that nothing was felt on the examination....I think he said his prostate was very minimally changed. I'm hoping all of this is positive, but I believe we won;t know too much until he talks to the surgeon.

You mentioned getting a second reading on the biopsy....I was under the impression the the oncology surgeon would do that, is that no the case? How do you go about getting your hands on the slides in order to get them looked at. I think my dad and us are so unsure of how much "time" he has to really research everything. When you read that a Gleason 8 is this fast growing, aggressive cancer it makes you fell like you have only a week or two to make a decision...maybe that's not the case. Is that age old feeling of, if it's that nasty lets get it out as soon as possible!

Thank you so much for the website suggestions (Which I did look into) and the book suggestion. I have that on order from Amazon. All of this helps...I've been soaking up as much info as possible so I can help my dad in any way I can. Again I appreciate anything that can be passed my way. I know how it is, sometimes the best info comes from people who had to live through it. They usually have the best information to apss on cause they did all the research as well!

johnw100

Great to hear that you are helping your dad in every way you can, and that you've ordered Lee Nelson's book, which will answer many of your ongoing questions. I'm sure you'll like the practical suggestions in it.

We know you feel like you only have a short time to make decisions, but that is not the case: it is best to take time to make the informed decisions that you know will be the right ones.

Regarding obtaining a 2nd reading of the biopsy: for whatever reason that is not necessarily done as a matter of course, but your doctor or urologist will arrange to send the slides to Johns Hopkins or wherever as you direct. It's surprising how often an expert pathologist will provide a different reading.

Gleason scores are made up of the primary pattern, (being the first number) and secondary number added together: as you thought the break up of those numbers can be significant..

You are correct in that there are positive indications, and probably several treatment options to consider.

People here will provide all the help they can, and we will appreciate feedback on how everything progresses for you.

All the best

Beth56 · Regular Joined: 30 Mar 2008 Posts: 31 Location: California

Hi Nicobus,

I'm new here but found your post and wanted to respond. My 63 year old husband was diagnosed last year with prostate cancer. His PSA was 3.2 and his Gleason score was 3+4=7. We researched everything we could for 3 months before deciding on a course of treatment. My husband decided on Proton Beam Therapy at Loma Linda Hospital in California. If you have interest in it, Google proton beam therapy at Loma Linda for prostate cancer, or I would be happy to answer any questions you have. Medicare and all major insurers pay, but most HMO's do not. There are Proton Beam Therapy centers all over the world, and many new centers being built and is a wonderful treatment for many cancers, not just prostate. It is important your father understand what treatments are available and what their outcomes are. There are several ways to treat and everyone must choose the best treatment they can for themselves.

As far as your father's biopsy, we had the hospital where the biopsy was done send it out to Bostwick Labs for a second opinion. We had the results in a week and when our insurance would not pay, Bostwick was kind enough to write off the amount we owed. The results were the same as the original but we felt better knowing we weren't going into treatment without a second opinion.

May I ask the age of your father and is he overweight? The reason I ask is because age and weight can be a factor to consider in some treatments, including surgery.

philip · Regular Joined: 27 Dec 2006 Posts: 13

I may have missed the age of your father in your post. The treatment for prostate cancer many times differs due to the age of the patient.

What is done for an 85 year old man is completely different from a 45 year old man.

Prostate Cancer is realively slow growing so it is something your father must take care of, but not something that must be rushed.

A PSA of 3 or 4 with a biopsy of 2 of 12 sounds like you have detected the cancer early and any good treatment will have a high degree of success.

If you father is younger surgery is the only option as you need the cancer to not return for at least ten years. If he is old radiation or shots may be all that a doctor will recommend.

Find a good onoclogist/uriologist they will be able to help you make the right decision on which treatment is best for your father.

Remember if men lived long enough they would all get Prostate Cancer, so this is serious, but it not the end of the world.

With the proper care your dad is going to do just fine.

Beth56 · Regular Joined: 30 Mar 2008 Posts: 31 Location: California

[quote="philip"]If you father is younger surgery is the only option as you need the cancer to not return for at least ten years. If he is old radiation or shots may be all that a doctor will recommend.[/quote]

Personally, I don't agree with this statement and don't wish anyone to think it is their only option. Age is a factor for some treatments and so is weight. But I have yet to find any statistics in my research that say surgery is the only option if you are younger. During my husband's treatment, we met many young men in their late 30's and early 40's that decided surgery was not for them. And we met many men who had surgery which failed. We even met doctors with PC who did not want surgery, and one was a radiologist. What these men feared most at a young age were the side effects of surgery. And the surgery itself is a very difficult surgery to perform. It's not for everyone.

We read Dr. Walsh's books and many others. We spent months on the Internet reading everything we could. We spoke to several doctors on the subject. What we found was surgeon's suggested surgery, radiologist's suggested radiation, etc. This was also what the majority of patients we met during treatment had said. Some doctors did not disclose all treatment choices and even told them that if they didn't follow their suggested course of treatment, that they would no longer see them as a patient. So when it comes to treatment, every man is on their own to decide what's best for them. There is not only one option.

For us, we decided on Proton Beam Therapy as our treatment choice. My husband is 63 years old.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 860

Beth wrote:
"So when it comes to treatment, every man is on their own to decide what's best for them. There is not only one option."

I agree 100%.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

nicobus · New User Joined: 21 Mar 2008 Posts: 3

Thanks for everyone's response and concern. Beth, i know you inquired about my dad's age and health....he is 64 and in great health. Works out 7 days a week 2 hours a day, he's been doing this for over 30 years. So his fitness health is great! He has sent his biopsy slides to another hospital for a second opinion, he's still waiting on the results to come back. He has talk to 3 different docs, 2 surgeons and a radiologist. Due to his gleason 8 and the fact that all of the docs have assured him that he has caught this very early, he has opted for robotic surgery. Not sure if anyone has heard of this particular surgeon, but he is going to Dr. Mani Mennon for the surgery. The doc assures him that he can preform nerve sparing surgery on him, so I think my dad is pretty confident with his decision right now. He's hoping once the prostate is removed and it is evaluated more closely that the cancer will be downgraded, but we'll see. He is aware of the proton beam therapy, but I think he wants the cancer as much out of his body physically that he can. He's aware that in the years following the surgery his cancer could return (especially if he truly is dealing with a Gleason Cool

, but I think he wants to take the stance of "dealing with that when it happens". I would love to hear anyone's comments on Dr. Mennon and if they have had any personal experiences with him. Also, we're really hoping for the best, I know there are many ways of dealing with this and we are hopeful that this was the best choice for him. Smile

brainman

Age is only a factor because often older people have more health concerns than just the cancer. The real issue is not age but overall health of the individual. A young person might be in worse shape than an older person and thus not be a good candidate for surgery.

But there are so many issues that go into a person's decision to have or not to have any particular treatment. In the end, it really does have to be an individuals decision. That is why being well informed is so important.
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Administrator and long-term cancer survivor
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Beth56 · Regular Joined: 30 Mar 2008 Posts: 31 Location: California

quote="nicobus"]The doc assures him that he can preform nerve sparing surgery on him, so I think my dad is pretty confident with his decision right now. He's hoping once the prostate is removed and it is evaluated more closely that the cancer will be downgraded, but we'll see. He is aware of the proton beam therapy, but I think he wants the cancer as much out of his body physically that he can.[/quote]

Hi nicobus,

I'm glad your father is comfortable with his decision. It is understandable that some men want the cancer out. Just so you know, it is my understanding that there is no way to guarantee a doctor can spare the nerves. Sometimes they are too bundled up and you can't see that until surgery. Also, often times the cancer will actually be upgraded by pathology after surgery. I tell you this so there are no surprises.

I wish your father well and offer my prayers for his quick recovery and complete removal of the cancer. Please come back and update us on your father.

Beth

Replicant · Moderator Joined: 01 Nov 2006 Posts: 860

Here's what Walsh says:

"If you are in your fifties or younger, even if the odds of a cure don't appear to be in your favor, you will tolerate surgery better than an older man,and you should probably consider it. If you are older, the situation gets a big more complicated. Men who are over seventy are more likely to to have problems with incontinence and impotence...At the other of the spectrum is the man in his eighties. Even if his cancer is organ-confined and curable, it's not likely that he will live long enough for aggressive treatment to be worthwhile...for most older men, the number of years of life--the long-term survival--is not nearly as important as the life in those years--the quality of life."
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

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