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Old 08-17-2007, 03:03 PM   #1
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new and confused

i was recently diagnosed with pc. iam 52 years young would like to make it to my 50th wedding aniversary, 18 years away. in fact that what i promised my wife. what a great support she has been.
i have had 2 byops, 1st byop had a gleason 9 the second a gleason 7, 3 weeks apart. the 1st was not painful at all but the second hurt like heck, ( what ever heck hurts like). i have only had 1 psa test and that came in at 12.6.
so far i have seen 4 doctors with 4 different suggestions, 1st doctor suggested surgery and rad, the 2nd suggested seed implants and imrt, the 3rd suggested rad, hormone and chemo. the 4th suggest freezing it or roasting the prostate chryotherapy or hifu. talk about not knowing which way to turn.
when i meet with the the doctors i asked if they would be consulting together to come up with the best treatment for me, of course they said ya sure you betch ya.
i finally got a hold of the radiation doctor who is very concerned but cannot get the other doctors into a meeting to discuss my case. so i am left with trying to treat myself. basically they said here is the 4 treatments we suggest go home decided which one you would like to do and come back let us know.
i went on line read everything i could, studied everything i found and tried to come up with a plan for a cure for myself. still nothing jumped out at me for success all the doctors said i have 70-80% of being cancer free in 10 years no matter which treatment i go with. talk about confused.

don't get me wrong the doctors have been very caring and willing to answer all of questions and they all gave me the amount of time i needed. not one of them pushed me out of the office or cut my time short.

the radiation doc finally suggested that i go see a doctor at the mayo clinic in rochester minn. have appointment aug 30. now i will ask him what he thinks is best for me. hopefully i can get an idea of what is best.
i am leaning towards laparoscopic prostate surgery if i am a candidate. or radical surgery.
so my question is """"" Is this normal or is this just doctors not willing to commit to a procedure?""""""""""""""""""""""
you get the big c word placed in your life and that messes with your ability to think and the doctors tell ya to decided what kind of treatment you would like
maybe i am just being to critical or maybe my body has not had time to react to the big c word.

 
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Old 08-17-2007, 03:19 PM   #2
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Re: new and confused

Ferengi,

Sorry about the confusion, but I sure know what you are going through. One thing my Urologist told me was that if the radiation or seeds were not successful, that surgery was a much riskier operation and in some cases not even doable.

With your age if the cancer is confined to the prostate, then getting it out would seem like the best way to go.

You also might want to get the books which are mentioned so often here on the forum..

Good Luck

Maury

 
Old 08-17-2007, 04:19 PM   #3
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Re: new and confused

some of the most useful advice i got was from my neighbor, a doc himself, though not a urologist. he said find a doc you feel totally comfortable with and go with his advice. he said that this is key, so you won't regret your choices down the road if things don't go smoothly. as you've seen there are lots of hammers out there looking for nails.

so, i think you're doing the right thing -- keep talking and researching until you see the way you want to go. you'll get the obvious advice -- select a doc with a proven track record, yadda yadda. you know the drill.

that's not much help, is it? good luck and keep posting. you'll get lots of advice here. :-) everyone here started out facing some form of the quandry you describe. my own journey is well chronicled in these postings.

 
Old 08-17-2007, 04:34 PM   #4
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Re: new and confused

Ferengi,

Do the biopsy pathology reports indicate that the cancer may be organ-confined (all in the prostate)? If so, at your age, I can see why some doctors may wish to do surgery and then follow up with radiation therapy.

The surgery will allow the doctors to get a deep pathology of the prostate and surrounding tissue taken out at surgery. This will help them determine where to focus the radiation therapy afterward if necessary at all. - OR -
If the pathology following surgery shows even a lower risk factor with no positive tumor margins at the edges of the prostate, some doctors may just wait and see what your PSA readings look like 9 months or so following surgery then determine the best course of action.

I chose surgery at age 54, because I wanted to know what I was dealing with. However, you will be the one to determine the best treatment. It really depends what you feel comfortable with based on all the information you have.

You're asking all the right questions.

Try to stay calm, as much as possible, and go at a pace that you're comfortable with in making your decision. Getting second, third, and forth opinions is not a bad thing to do.

Best regards,

Jim

 
Old 08-17-2007, 05:31 PM   #5
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Re: new and confused

Hi Ferengi,

You got too many cooks in the kitchen. At your age and if the cancer is confined to the prostate (easy to determine) you have one responsible choice; removal. The only treatment for organ confined disease that gives a cure rate past 15 years is radical prostatectomey. You have several choices, open, lap, and robotic lap. My advice to you is to ensure you have a good diagnosis and then find the best robotic lap Dr. convienient to you. Get the Walsh book 'surviving prostate cancer' and find a Dr. you are comfortable with. Tell us about it, we all wish you well. Scott

 
Old 08-17-2007, 05:54 PM   #6
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Re: new and confused

Ditto on the previous posts. My doc gave me the options you mentioned, then proceeded to suggest removal of the prostate over the others. As he said, if it's removed, and then the PC comes back, you can use radiation. If you choose radiation first, there's not much they can do should it ever return.
My thoughts and prayers are with you. I know you have a world of worry right now, but you'll be fine. Just keep seeking what you feel is the right doctor and the right solution for YOU.
Specialdee

 
Old 08-18-2007, 04:50 AM   #7
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Re: new and confused

Biopsy readings are subjective.

To know exactly what you are dealing with, obtain a 2nd reading of all the biopsy slides if that has not been done.

If it's confirmed that you have intermediate or high risk cancer, Mayo Clinic has considerable expertise and will be able to provide a panel to review your case.

The books by Dr Charles Myers and Dr Lee Nelson are well worth reading: both authors had high risk Prostae Cancer and underwent radiation and hormone treatment themselves.

 
Old 08-18-2007, 08:27 AM   #8
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Re: new and confused

Hi ferengi55

From the sounds of your initial post, you were already in "information overload" way before you ever found this forum. Guess what? This forum is probably going to confuse you even more so. I was lucky. I never found this forum until after my surgery. When I was dx'd, my primary urologist gave me a great book, which outlined all of my choices, and all of the issues related to those choices. For me, of all the choices available to me, I wanted surgery because I wanted the tumor removed. I didn't want to play games with radiation or hormones or anything else that let the tumor remain in my body. I decided (alone) that I wanted it "out of my body" as best as they could. This lead to all of my surgery choices of which, at least in my region, the da Vinci procedure is, far and away, the standard. This is how the decision for treatment process worked for me. I stress "for me"! I didn't seek too much advice about my other choices since I already knew that "for me" surgery was the way to go. Again I stress, that's just my decision and me! Here's my point. If you stay on this forum long enough and ask enough questions, you'll go nuts and never really be comfortable with whatever treatment you choose. Bottom line. The treatment I chose was the treatment that was similar to my thinking about how I approach life. In other words, when I am faced with an obstacle, I tend to want to eliminate it as best as possible. If it's a tree limb that has fallen in the middle of the road that I can't get around it, I won't ponder for too long on how to get past the tree limb. If I can get out of my car and remove it, I'll do that. If I'm not qualified to remove it, I'll get help and we will remove it together. The end result is, the tree limb will be removed so as not to be a problem for myself or other people when they arrive upon it. Someone else may arrive at the tree limb and ponder it for a much longer period of time. Maybe wish it away, pray it away, watch and wait for it to go away. Maybe if they wait long enough someone else to give them advice about it. Maybe they will hope that the sun dries it up and it shrinks away. Maybe if they shout at it long enough and hard enough it will do something to disintegrate the tree limb. The difference with your PC obstacle and the tree limb obstacle is that you can't just turn around and go up another street with PC. With PC, the street you happen to be on is the only route available because it's the street of your life journey. No detours! You "must" somehow deal with the PC! My thinking is that "for me" surgery is the only real proactive choice. All of the other choices lean toward wishing and hoping and waiting and wondering about the results. And yet, the tumor is still there inside your body. I must put a great deal of emphasis on the fact that these are only my opinions about how I reached my decision about treatment. You certainly don't need any more confusion about which treatment you will decide upon. Most importantly, just like you, I'm just another slug on the road of life hoping to catch the next bus and hoping that the next bus that comes along won't run over me. I'm certainly not a professional and have no business telling you that my journey and my decisions are exactly right for you. Your decision should be based upon your personal makeup and your comfort level about the treatment that most appeals to you. My advice, if it's worth anything, is to stay off this forum until you and your professional team work out a plan that exactly fits your comfort level. Yes, you can jump on this forum if you need a few laughs and read the opinions, absurd and otherwise, but above all make your decision based upon your own comfort level. Last but not least, try to relax and find some level of peace through the process.

At the risk of getting criticized, I'll close with...

God Bless!

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robotic LRP; Jan2007

Last edited by able5; 08-18-2007 at 12:04 PM.

 
Old 08-18-2007, 09:48 PM   #9
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Re: new and confused

A Gleason scale of 9 is rather high. As someone else suggested, get another reading of that biopsy, because you want to know if the 9 score is real, since it is somewhat subjective. Assuming that the 9 score is real, I would suggest surgery. That way they can sample the lymph nodes and determine whether the disease is confined to the organ.

I am one who chose seeds, because my cancer was very early stage. While, as others have said on this forum, surgery is always recommended for people with a life expectancy greater than 12 years, you should know that recommendation is based solely on the fact that the statistics for radiation are not (yet) available for any time period beyond 12 years, where they are comparable with surgery (early stage only). This does not mean that the chances are not the same for surgery versus radiation. However, these comments apply only to early stage cancer. If you have a real Gleason score of 9, I would opt for surgery. I would also opt for the DaVinci surgery, for no other reason than it is less stressful on your body. In my way of thinking, the less stress on your body, the better the chances your immune system can cope with the disease. Just my 2 cents!

 
Old 08-20-2007, 04:08 AM   #10
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Re: new and confused

Regarding surgery which was mentioned by yourself and others here:

Surgery is a suitable treatment in many instances, but is not an appropriate sole treatment for high risk Gleason 9 cancer, which is why none of your 4 doctors suggested it.

Your appointment at Mayo Clinic should provide the balanced view you need: they certainly have the expertise to do so.

 
Old 08-20-2007, 09:49 AM   #11
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Re: new and confused

As most will tell you, Each Doctor tends to recommend the procedure in which they specialize in. If the cancer is confined to your prostate, take a look at "Proton Therapy" and throw it into the pile with your other choices.
There are 5 Hospitals in the USA surrently doing it. (since 1992), virtually few to no side effects, It's a long, slow procedure (about 60 days a few minutes 5 days a week). It leaves the prostate in tact and functioning, it eliminates only the foreign tissue (cancer). One of the patients had a cinfined Gleason 10 and went through it with no problems.
Best of luck: Bob

 
Old 08-20-2007, 03:52 PM   #12
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Re: new and confused

thanks so much for responding and your caring thoughts.
my cancer is confind to the prostate by all tests and by the byop of the seminal vesicle and the urethra. i am leaning towards removal and i am looking for the laparoscopic surgery. i feel this should be my best options i i pray. but i still feel confused but everyday seems a little bit clearer or just the fact that i i am moving everyday further from that awful day that i was diagnoised. again with support from my family and friends and you and my chuch i think that i can survive this ordeal.
again thank you very much for understanding

ferengi

 
Old 08-20-2007, 07:02 PM   #13
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Re: new and confused

Hi ferengi,

As you get further away from the diagnosis date, your head gets a little clearer for decision-making.

One thing with this disease is that we either have it or we don't. At some point we accept it and then just move forward. It's not easy, but it is do-able

There are a lot of good examples in this forum.

I wish you the best as you move forward in your treatment plan.

Idaho Survivor

 
Old 09-08-2007, 07:33 PM   #14
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Re: new and confused

Hi Ferengi
Quote:
so my question is """"" Is this normal or is this just doctors not willing to commit to a procedure?""""""""""""""""""""""
you get the big c word placed in your life and that messes with your ability to think and the doctors tell ya to decided what kind of treatment you would like???
When my husband was diagnosed we were surprised by this method too. We got the biopsy results & the urologist told us to read Patrick Walsh's book together so we would be educated on each treatment and side effects, etc. Then we were to come in to sit down with him and he'd go over our thoughts and interests and we'd work on a game plan together. He said we had time to read the book because they wouldn't do anything until the biopsy sites had time to heal anyway.

My husband opted for surgery but we wanted the best doctor and the best procedure we could find. (who doesn't?) His urologist was highly (and repeatedly) recommended to us by friends, other doctors and surgical nurses etc. We felt comfortable with his reputation- BUT...he didn't do robotic and the only robot near us was at a hospital that didn't take our insurance, and done by a doc we had never heard of. Sigh.

We'd always heard that the robotic is only as good as the doc using it, and since we didn't know the doc using it - we didn't feel comfortable going that route. My husband went with the open, by the doc that so many had recommended. He is doing very well and is happy with his decisions.

Sending prayers and best wishes as you decide which path feels right to *you*.


 
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