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New to this and pretty lost

Brenda_ca
Posts: 2
Joined: Aug 2012

Ive been doing some research but seem to get some conflicting information and frankly pretty overwhelmed, while already struggling to stay calm. I was hoping to find some insights here.

My 49 year old fiancé was just diagnosed. His PSA is 16, his Gleason (4,4) is 8. He's set for the CT and Bone scan tomorrow so we'll know more. But I'm curious if anyone has any insight if, with these numbers, hormone & radiation would even be an option. It's also a little tricky trying to understand the long term prognosis with someone so young when it's this agressive.

I'm sure he'll be happy to see this board as well. I suspect it will be nice for him to know that he's not alone.

Thank you so much in advance,
Brenda

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Brenda, what stage of cancer was your fiance diagnosed with. Also how many biopsy samples came back with cancer and how much cancer was in each sample. The CT and bone scan will for the most part indicate if the cancer has spread outside the prostate. Prostate cancer when it spreads tends to settle in the bone, but can spread to other parts of the body also. It might be good idea to get a second opinion on these results. The numbers are high,but PSA numbers can be misleading. Mine was only in the 2.25 range and I was in stage T2C. the cancer had spread thru out the whole prostate. I had 18 samples taken and all came back with cancer, 9 of the samples had 60 percent cancer cells, my gleason score was 4+3=7. Try and stay calm and start asking a lot of questions with the doctors, they will describe all of the treatment methods and the side effects. Above all this cancer needs to be treated. If this cancer has spread, then the doctor might opt not to do surgery. And will most likely follow another method of treatment. Research all of the methods. Sorry to hear about this. The Group on this site will have all types of answers and information for you

Kurt

Brenda_ca
Posts: 2
Joined: Aug 2012

Thank you so much for your quick reply.
The first urologist was talking about surgery as the option and we see the second Urologist next week.

It was the left apex lat. with a score of 8 measuring 5mm (45% of tissue) involving 2 of 2 segments. To me that just looks like one area with all of the others benign. But the Gleason number is up there & PSA is so high (and going up) that I can't make sense of it.

Thank you again!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

It is real hard to make sense of this. I was diagnosed in Jan of 2011 and am still trying to make sense. This is a blow and I went thru a lot myself. My wife has been a great support in this and has kept things straight. Again the PSA numbers need to be looked at, but can be misleading. So donot let this be the only factor in trying to determine treatment. Keep in mind that this is cancer. Having another urologist looking at this is good. I had the surgery because I felt that this was the best treatment method, but my cancer was confined to the prostate at the time. This cancer can be aggressive in a younger male, There are treatment methods that donot involve surgery. My advice is to investigate. The urologist wants to treat and for the most part remove the cancer right away. In some cases this is the only way to go. There are other methods that might work just fine without surgery. Get the second opinion. And above all keep doing research. Hope this helps. Try and stay calm

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

It is real hard to make sense of this. I was diagnosed in Jan of 2011 and am still trying to make sense. This is a blow and I went thru a lot myself. My wife has been a great support in this and has kept things straight. Again the PSA numbers need to be looked at, but can be misleading. So donot let this be the only factor in trying to determine treatment. Keep in mind that this is cancer. Having another urologist looking at this is good. I had the surgery because I felt that this was the best treatment method, but my cancer was confined to the prostate at the time. This cancer can be aggressive in a younger male, There are treatment methods that donot involve surgery. My advice is to investigate. The urologist wants to treat and for the most part remove the cancer right away. In some cases this is the only way to go. There are other methods that might work just fine without surgery. Get the second opinion. And above all keep doing research. Hope this helps. Try and stay calm

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

It just came to mind has there been a Free PSA test ran yet? I would think that the Urologist ordered one. This test is a more accurate one

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Brenda,

Welcome to the forum and I am so sorry that you and your fiancé find yourselves in this difficult situation when you ought to be concentrating on happier things.

As you know, a Gleason 8 score indicates an aggressive, serious cancer diagnosis. Despite such a difficult diagnosis there are many treatment options that can be very effective in treating this disease. Mainly the treatment options include surgical removal of the prostate, some form of radiation, and hormone therapy. Often hormone therapy is used in combination with either radiation or surgery.

Each of the treatment methods have the potential for side effects that can affect urinary continence, sexual function, and other quality of life factors. Some treatment methods can potentially have a more adverse effect on quality of life than others. Everything is a trade off in one way or another and the scientists have yet to come up with a magic bullet that can make prostate cancer go away.

I think it is very savvy to seek second opinions. I think you should have the biopsy slides read by a pathologist that specializes in prostate cancer as well as this diagnosis is so very important to choosing the best treatment method. Many men send their biopsy slides to Johns Hopkins for a second opinion. Your fiancé's doctor can explain how to do this. When seeking second opinions, I discovered that urologists almost always recommend surgery. That's what they are trained in and that's what they do. Radiation oncologists almost always recommend some form of radiation. An oncologist specializes in the use of hormone therapy and chemotherapy and they can best advise you on the pros and cons of those therapies. I would suggest that besides additional urologists, that you take the time to also consult with radiation oncologists and oncologists that specialize in prostate cancer. Don't be surprised if you get radically different recommendations from these experts. At the end of the day your fiancé will have to make the difficult decision on how to proceed and he needs as much knowledge and differing opinions as possible so he can properly weigh the pros and cons of each treatment and gauge the impact on quality of life.

Kurt has given you some sound advice. I'm sure others with an advanced prostate cancer diagnosis will also contribute. One thing that is closely related to this is the emotional support your fiancé needs at this time. Prostate cancer affects the center of what makes him a man. The potential to lose continence and sexual function at this stage in his life, not to mention coming face-to-face with his own mortality can be both frightening and highly depressing. Don't be surprised if he takes a ride on an emotional roller coaster in the next several weeks and months. He will need your support and understanding to make it through to the other side.

I do hope you encourage him to join the forum as well. Many men find it helpful to be able to communicate with other men who have gone through or are going through a similar situation. I would also recommend that you research prostate cancer support groups in your local area. The urologist ought to be able to recommend some and most hospitals and other treatment centers also can direct you in the right direction.

Best of luck to you both.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

What Kongo said and all of our family. Being attach to this monster in life and fighting to defeat it. A gleason score of 8 (4+4) is not great news and BUT they as Doctor's make mistake's. So get a second opinion and don't let bad things enter your mind. You can over come this Cancer and injoy life. When I got this prostate cancer in 2008, they were looking at 2-3 year's and now its 4 years looking at 10 years.

God bless you and injoy life. :-)

hunter49
Posts: 199
Joined: Oct 2011

When you had your surgery was it contained or had it already escaped?

Samsungtech1
Posts: 350
Joined: Jan 2011

Unfortunately my memory is suffering a bit. I am sure people on this site have talked about a test to see if it is contained. If someone could tell her about this test it would be great. They need to do this as it would greatly help in their decision making. I had RP, lost all, and found out it was in the bladder. Found out later that my original x-ray showed nodule in lung. My urologist was positive it wouldnot go to lungs. Enough about me. We need to help this lady.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Brenda; Kongo and Mike have some very good input, please feel free to come back. The group here is real good with support and help. Hope things are going ok.

hopeful and opt...
Posts: 1282
Joined: Apr 2009

will show suspicious lesions for extracapsular extension. Click my name for details. The MRI is significantly superior to a CT.

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Brenda

You got already good advices above, and you can count on the many survivors here to help you understanding facts. Surely we are laymen with no medical enrolment so that you will need sound opinions from specialist.

At beginning we all get frightened with the diagnosis and the first though is to get rid of the cancer the soonest. However prostate cancer is slow growing when compared with other similar cancers (4 times slower than breast cancer) which allows enough time for us to become intimate with all aspects of diagnosis and treatments. Surely such does not mean that PCa is not lethal. You need to know about the whole aspects involving each type of treatment because they got risks and side effects that will affect the quality of life of your friend and you. Do the things coordinately and timely.
http://health.nytimes.com/health/guides/disease/prostate-cancer/print.html

Some side effects are prevalent and become permanent. Your friend should be aware of them because there are tradeoffs in the choices. There may be things that one would not want to lose.
You may get details in the net googling this sentence “side effects of treatments for prostate cancer”.

Cure from cancer is very sceptical and hard to reach, but this is the aim of all of us. We all have to commit to something at some time and do not want to regret on what has been done.
It is therefore important to have proper diagnosis and to “shop” around for due specialists. Those are usually not the ones that have given us the initial results.

The PSA is high and the Gleason grade 4 regards to an aggressive type of cancerous cells but such does not mean that your friend’s status is out of a reachable “cure”. The combi of hormone (HT) plus all varieties of radiation (RT) is a valid option in both; with positive or negative scans (CT, MRI, PET). Surgery may as well be an option depending on the clinical stage attributed to your friend’s case.

I was 50 when diagnosed with PCa, in 2000. My PSA was 22.4 but the gleason was low at 2+3=5. My cancer was voluminous with all samples of biopsy positive to cancer.
I have chosen surgery but did not manage to get rid of the cancer. 6-years later had salvage radiation with no success again. Now I am on hormonal therapy which is holding any progress successfully. Though I know that my case is systemic but cancer is not preventing me from enjoying life to the most.

Biased opinions on treatments are common. Try reading some books and chose the one you feel comfortable with.

“Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition); which may help you understanding options between surgery and radiation. The writer is a surgeon so that the book tends to line on that treatment.
“Invasion of the Prostate Snatchers” by Blum and Dr. Scholz which descriptions are much against surgery but favour palliative hormonal therapy. The book is a good reference in all aspects of PCa diagnosis.

The National Cancer Institute got an article titled “An Overview of Nutrition in Cancer Care”, which may be of interest to you and your friend. Here is the link;
http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5

A list of questions to the doctors may be helpful. Please let us know about details of your friend’s next consultation.

Welcome to the board

VGama

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