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WE share the following commonalities:[1]We both have been diagnosed with prostate cancer and[2]Both of us have been duly devestated.
With a Gleason score of 6 your cancer may be low grade and non-aggressive,but that"s for you and your doctors to decide. The more research you do, the better questions you will be able to ask and the better prepared you will be to make a good decision for yourself.You found this site very quickly which bodes well for you since it suggests you are research oriented. YANA in and of itself provides a wealth of information. As a part of your research effort you may find my journal helpful; see http://protondon.blogspot.com/
Best wishes.
I know it feels like you've been hit with a 2 by 4 when your doctor tells you that you have cancer but you have a very low grade type of cancer (it is more like pre-cancer) for now. Look up "active surveillance for prostate cancer" on the medical sites like Mayo or Sloan kettering. Your Doctors will probably agree to you going on AS. If during AS your Gleason Score gets to 4 & 3, PSA goes above 10 or PSA starts rising quickly then you've got to do something. You and your doctor can decide on the thresholds.
You really want to wait for some new treatment without lasting side effects, like immune therapy, to come along in about 5 to 10 years and then get treated for it then.
All the treatments you can get now will give you quite a hit to your quality of life.
Also go and visit one of the information/support groups in your area. It is really good to talk to a bunch of other men that have gone through what you are.
I am sure Terry can add a lot of information when he comes back from holidays.
Thank you! My doctor seemed eager to operate, he first stated that i had cancer,then he told me that he wanted to remove my prostate. After one day of research i am not feeling very comfortable with him right now.
I was in your place a little over two years ago at age 46, so I can relate to what you are thinking and feeling right now.
The best advice I can give you is that time is on your side. Don't be pressured or rushed into making a decision. I'm not a doctor, but from what you are telling us about your "numbers" it sounds like you have plenty of time to do research and make informed decisions. Like you, my urologist wanted to cut it out right away because that's how surgeons cure diseases. I took 6 months to decide on a course of treatment. I'm glad I declined his offer and opted for another route.
Take your time to understand your disease and what options there are for you given your age, general health, and family circumstances. Like many of us on this site, I believe that the choice of treatment is highly personal and subject to individual circumstances, so I won't steer you towards one treatment or another, but I think many here will agree that knowledge is your best weapon in fighting this disease. So take advantage of the collective wisdom of the many men who have contributed to this site and other sites over the years before you choose a course of treatment.
If you are interested my story is recounted under the Proton section of the Mentor Experiences under the name "M P".
I had almost identical #'s but was 58 years old so I just decided to have it removed as sex isn't as important as it is say in your 40's. Five or six times a year is no big loss I figured. At your age I would delay I think but it is your choice to make. Interestingly, when my urologist called me with the good post operation pathology report he said that they found some Gleason 7 so it was a good thing that I had it removed as "it was getting aggressive". I think that Gleason grades are raised or lowered many times after surgery. In summary, I think you'll be around for a long time Anthony.
You have had some good advice already and I hope you are feeling less 'panicky'.
I was diagnosed in 1996 at what was considered a young age then - 54. At that time the median age for diagnosis was the mid-70s, so I was twenty years younger than the median. You are in the same position today - about twenty years younger than the median, which has dropped to the mid-60s.
I didn't understand then, and do not understand now, why there is such an emphasis on early action for young men. It has been said time and again that young men have more aggressive forms of the disease, but this is simply not borne out by any studies. What is very clear from available data is that the risk of death from prostate cancer grows with age. Half the men who die from the disease are over 80: 90% of the men who die from the disease are over 65:2% of prostate cancer deaths are in men under the age of 55. Only 3% of male deaths are from prostate cancer, so the real risk for a man under 65 i.e. the next 20 years for a man of your age is about 10% of 3%, or next to zero.
Of course there are young men who die from the disease. The indexes on the YANA site show that clearly and it is tragic that they should do so, but if you understand their diagnoses, you will find that they are nothing like yours. In terms of current definitions - see GLEASON GRADES your diagnosis is entry level. If your Gleason Score had been lower you would not have been said to have PCa. The men who died had aggressive forms of the disease.
It is probably worth bearing in mind what a wise old doctors said many years ago, which is still true today Growing old is invariably fatal while prostate cancer is only sometimes so.
I believe the most important thing you can do initially is to
1. Get copies of your pathology reports so you can see precisely what is said rather than depend on what you thought the doctor said. You should as a matter of course opbtain copies of all reports in connection with your diagnosis and treatment choice and keep them. Dealing with PCa is more like a marathon than a sprint and your data from the get-go is important.
2. Get a second opinion from the best pathologist you can find - some suggestions are here RECOGNISED EXPERT PATHOLOGISTS. The Gleason Score is very important and the readings are subjective. Since the pathological reports should be at the core of your decision making process you need to know as much as you can.
3. Contact some of the young men who have told their stories on the site - this is the relevant INDEX. You will see that most of them have chosen to have early treatment, but a growing number is choosing to wait and gain more information. One man in particular you might like to contact is NED G He is shown in the Undecided list but in fact has chosen Active Surveillance for the moment but I haven't had a chance to update his story yet.
The decision as to what you should do is an intensly personal one. We are all individuals and the way in which we make decisions varies considerably. What we feel to be important as individuals varies considerably.
Good luck, whatever your choice. I hope you'll post your story in due course to help those who come behind you.
Thank you for the time and response! I will contact Ned, I read his story and became even more confused about the recommendations of doctors. My test is lacking information that I intend to seek out, Yana has been most helpful. My wife has located several doctors and we will seek a second opinion regarding my test results. I will post my progress and information when received.
Hi Anthony. I know the feeling. Read my story for some comforting news on this site. Believe me, the worse part about this is being told you have it. The rest is a piece of cake. One bit of advice: get a second opinion from a cancer hospital (I went to the City of Hope in Duarte, CA) If you choose surgery (I did), get an experienced surgeon. Dave
Anthony, I was 43 years old in early 2002 and 2003 when I found this site, and basically with the same numbers as you. Gleason 6, and PSA between 3.5 and 4. Your getting good advise from this site, take your time, study, and not everyone is the same. My PSA after RP averages between .1 and .2 and everything is fine. Good luck, and if you like you can read my story posted on this site. As long as it is steady, I'm happy.
I was diagnosed July 2010 with psa of 6.9, stage T1C Gleason 3+4 7. My urologist went through the entire surgery, radiation consultations and surgery was his reply, as soon as possible. I'm 48 and divorced - pretty much alone. I chose to wait until I had finished my research and traveled on vacation. I just had my psa tested 1/2011 at 10.0. (Vigorously stimulated the prostate the night before with my girlfriend) I have chosen my treatment and will start Feb 22nd. You have plenty of time to make an informed decision based on your needs. I personally chose the proton beam therapy at Loma Linda. What I did learn is that there are no guarantee with any treatment, and if I could live without treatment, I would as my first choice.
Good luck to you! My week has been tough attempting to read and gather information. Just as you have stated, there are no guarantees but I remain positive. I asked the oncologist how effective was Cyberknife, as he started to hestistate I decided to inform him that I could not find any real data since the machine was fairly new. He then proceeded to inform me that all the procedures were good and to make a choice to get on with my life. Somewhat insensitive if you ask me, I just kindly stated "no I will not just make a decision". I am not a cynical person, however its difficult to trust someone with my life or the quality of it.
One of the key points to my choice of Proton Beam Therapy, besides the obvious benefits (cure, no side effects), is the quality of their care program. Several support groups, available therapy, free use of a gym and library, and a caring staff. I plan on using my time to get in shape, meditate, and decide what I want from the rest of my life. Good luck in your choice.
The statement that implies that Proton Beam Therapy (PBT)promises "....cure, no side effect... is not supported by any well accepted studies.
There are no guranatees of 'cure' for any therapy. PBT may have lower side efefcts than other therapies (although what studies there are are not conclusive) but to say that there are no side effects with PBT is not correct.
I didn't state they were promises, but cure rates are equal to other treatments, and lack of noticable side effects is equal to or better than other treatment options.
I understand you feel your world has turned upside down. I too thought can't be noone in my family has had this and no way I am too young. Reality is that it can happen to anyone including us.
What you can do for you and your family is research well find out the options available to make a decision that fits you and your goals. Personally as you can read in my write-up I like you live SO close to John Hopkins I decided to use them not only for a second opinion (Dr Epstien) is a leading authority on result reads but also discuss their thoughts on treatment for me at 45 and my Gleason 6 results. Not just RP but others. Bottom line for me I felt removal under RP was my best option. Since June 08 when I has it removed results all indicate no readable PSA level thank God. I also liked with my treatment that they were able to slice and dice the prostate to make sure of their assessment based on the biopsies. Anyway my thoughts. Remember only you can decide and most important is success in beating this and then deal with side effects if any. I have none. Feel free to contact I live over near Annapolis.
