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Was treatment the right choice?

mssa58
Posts: 21
Joined: May 2010

I was diagnosed with Prostate Cancer on June 15, 2009 at the VA Hospital in Madison, WI. Initially they told me I was had a Gleason score of 8 which is aggressive and fast growing. It took the VA until Oct. 13, 2009 to finally surgically remove the cancer that engulfed 60% of my prostate. In Jan. 2010 they did a PSA on me and found that I still had cancer cells in my body so finally in March, 2010, they injected me with a female hormone shot, and another one at the end of May. After some delays, again, I finally started radiation at the beginning of May and will finish at the end of June. Since I don't really trust the VA I got copies of my medical records and reviewed them with my wife--she is an RN. After reviewing them I found out that another DR. had given me a Gleason score of 9 and a T4 rating also since the cancer had invaded my bladder neck. Since my surgery I have lost the ability to have sex--they removed the seminal vesicals and the erectory nerves--have been sick every day with the hormone and radiation, and have been suffering from MDD (Major Depressive Disorder).
I also have trouble with my bladder and bowels along with a few other problems.

In retrospect, I almost wish that I had refused the Prostate biopsy when it was offered to me. At least I would have been able to retain more quality of life than I currently have.

Does anyone else feel this way? I am curious to see if others feel this way or I am just feeling sorry for myself.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

You have been dealt a lousy hand.
I was diagnosed 3 months before you. I had a prostatecomy & radiation.
When diagnosed, I considered watchful waiting but decided fighting was the only option I could live with. So far I have come through with mimimal side effects. Recently I under went surgery for skin cancer.......another battle. Still I count my blessings. They are many.
I believe these health issues have inspired me to cherish each day, to grow closer to my friends & family,volunteer more, become a better musician, and growing in my spiritual walk with a renewed sense of urgency.
Most of us here have had a bad break, but if we can find a way to heal the break, we can be stronger then ever. Good luck& don't give up.
George

mssa58
Posts: 21
Joined: May 2010

Thanks for your comments. I wish you the best of luck with your skin cancer and I will pray for you. I too have been growing in my spiritual walk but somedays I tend to get a bit overwhelmed. On the bright side, my family has grown closer thanks to my having cancer. I need to concentrate on the good things instead of the negatives. Good luck to you also and I won't give up.
Terry

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I think many (most) of us with PC have "issues". ED is a problem for quite a few (regardless of nerve sparing surgery) and so is incontinence. I did not have radiation or hormone treatments, but from what I understand, feelings of nausea and general malaise are part of the "program". After a radical prostatectomy, and a dilation for scar tissue that went wrong, I had to deal with incontinence. During testing, they discovered I had bladder cancer. What a blow to the gut! It was like I was playing in a double overtime basketball game, had nothing left in the tank, and had to play a third overtime. After 6 weeks of BCG treatments, and constant regular check-ups, the PC and the bladder cancer have not returned. I had to undergo another nasty surgery to have an artificial urinary sphincter implanted. If you focus on "why me?" and "I just want to go back to 'normal'", you will tend to drift toward dark and gloomy places. On the other hand, if your attitude is "this ain't going to beat me" and accept the "new normal", you may gain a greater appreciation of every day things. I wish I could have sex like I did four years ago. I wish I could pee like I did four years ago. I can't. I've had to accept the hand I was dealt, adapt, and refuse to surrender to cancer. Right now, I feel the score is: Tom 2, Cancer 0.

Best of luck to you. You'll find a lot of support and advice here. Fight like hell!

bdhilton
Posts: 752
Joined: Jan 2010

You and George give great encouraging words and you are right from my perspective as well… If you surrender to the beast the beast will win and perhaps someday the beast will win but in the mean time I am choosing that today is a good day...

Best to all

mssa58
Posts: 21
Joined: May 2010

I have known that I would have issues with ED after surgery but I thought I would be able to at least perform to some degree and now I find that I can't perform at all. I know that I have to accept that some time but so far I have been having a very hard time doing that. Right now I feel like it is Terry 0, Cancer 1. I am halfway thru my radiation and hormone therapy and hopefully this will take care of the cancer once and for all. You seem to have a much better attitude than I do so at least that gives me hope that my attitude will improve in the future. Thanks for your support and advise and good luck with your health.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I don't know if you'd consider such a thing but..... As mentioned, I had an artificial urinary sphincter implanted because of incontinence. When I have to pee, I squeeze a small pump three or four times implanted in my scrotum. They make a similar device, except it's for ED. A pump in your scrotum is squeezed a couple of times and a "bladder" that looks somewhat like a balloon inflates giving you an erection. I know somebody on this site has one, but I don't know who. Obviously, your first battle is with the cancer. We need to see the scoreboard: Terry 1 Cancer 0.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I was diagnosed in Nov. 02 with gleason of 9 and Psa of 24. I took one shot of Lupron and the maximum radiation allowed. I was then 51 years old. I have survived a very long time and doubt there is anyone in the country that with those numbers is still alive over 8 years later.
I have had a good quality of life up till the past few weeks. I kept all stress out of my life and believe that is the main reason for my still being above ground.
My cancer had already spread and I would say that had I taken no treatment that my quality of life would have been even better and that I would have survived just as long.
I am now under the care of Hospice as the cancer is everywhere. So I would agree with you about never having that biopsy, but if you had found out that it had not spread then your cancer could have been cured. Any treatment given once the cancer has spread is only benefical in controlling some pain and benefical to the providers bank account.
It is very difficult to refuse treatment as people think that it will cure them. It can if all the cancer is removed but if it has spread then the treatments will only cause you to have less quality of life and will not extend your life by more than a few weeks at best.

mssa58
Posts: 21
Joined: May 2010

I am sorry to hear about your current condition. I hope they are able to keep you pain free.
Quality of Life is very important to me but I am unable to convince my family how important it is for me. I think one of the reasons I underwent treatment was more for them than for myself. Once again, good luck to you.

Terry

142
Posts: 169
Joined: Dec 2009

2ndBase,
Hang in there. I'll just say you are in my thoughts and have my best wishes.

hopeful and opt...
Posts: 1278
Joined: Apr 2009

with you...........Ira

142
Posts: 169
Joined: Dec 2009

I can agree with everyone here - I had no symptoms at all, no reason to think I was sick, but a random PSA test just to "fill out the charts" sent me to meet the robot, and now the radiation folks.

Quality of life (ED) - went from no issues at all to still on pads at surgery +32 weeks. From never having ignored a pretty girl to no nerves and no reaction at age 56. S.cks, but with the 4+5 and positive margins pathology, it would not have lasted much longer (perhaps as long as 18 months before mets to bones, in my doctor's post-op opinion, shared by other doctors).

Significant fatigue, urinary problems, and bowel issues are part of the radiation impact - at 29 of 39 treatments, I expected them, I've got them all, but hope to be done with them soon.

The difference is that I started the radiation as soon as I could, hoping to avoid the hormone therapy, which I could not see as anything I would tolerate.

Did I make the right choice? If something else kills me in the next 18 months, no. If I live happily, but padded, until 80, I suspect so. It all depends on how long you want to live, I guess.

We do what we feel we have to do. I have had to accept the "new normal", as there is no choice. I don't get a do over, and second-guessing doesn't change anything except to worsen my mental state, so I don't do that.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Sorry to hear about your issues with radiation and I hope it kills all the cancer left in your body. The radiation killed all the cancer in and around my prostate but it had already spread beyond to many places so in fact the radiation was of no help in saving my life. Like you say there are no do-overs and we all take our best judgements of what will help make us better. It could be said that we are asked to pick from a list of bad choices with very little assurance of a great outcome. I pray no have no mets to bones but they told me my bone scan and a nucular med scan that they could see no mets after my radiation. Obviously there were many mets which now show up very clearly in bones throughout my body and in my spine. We make our choices and we have to believe they are right for us whether they turn out to be or not. None of us get out of here alive and I am no exception. I have survived a very long time considering my diagnosis and am thankful to all that have supported me. Peace, Mark

nymets1
Posts: 26
Joined: Sep 2009

I am sorry to hear how the cancer has progressed. However, I do want to make a few points.

First, the fact that you did have radiation, may have well had a positive impact on your surviving eight years. There is a lot of discussion and few conclusions as to whether cleaning the cancer out at the source is beneficial, if the cancer has escaped. Once cancer cells have escaped, it is not a given that they will grow immediately; instead it could take a long time before they find a place or places suitable for growing. Eliminating millions of cancer cells at the source would likely also eliminate millions of cancer cells spreading and having better chances of colonizing somewhere else. Therefore, I believe you should never look back and believe, without a doubt, that the radiation was a waste of time, as it may have given you a lot more time than if you had not done it.

I do believe that, in many cases, there is a good possibility that hormone therapy is a waste of time. There is a global thought that PCa cells do NOT evolve into becoming androgen-resistant. Instead, some cells are NATURALLY resisitant to testosterone at the gitco. If this is true, the crapshoot is whether one's PCa is substantially free of androgen-resistant cells or only partially free. For those whose PCa is nearly 100% androgen-dependant, hormone therapy can work for years and years. For those who have a lot of androgen-resistant cells, hormone therapy fails, sometimes within a year.

Finally, if you are still realtively healthy, other than the PCa, I highly recommend that you give this a last ditch attack; one that could give you possibly a few good years. Look into Taxotere, followed by DES (after the Taxotere treatments). Taxotere is covered by insurance; the DES is not covered by insurance but it is dirt cheap and prostate oncologists can get it made, if they so choose (it is not illegal, it is simply not made by any American pharmaceuticals). Your QOL will suffer for a few months with the chemo; however, if you do respond, your QOL with the DES (which would be administered after the chemo treatments), would be a lot better than with the hormone-ablation drugs.

I wish you the best!

Joe (nymets1)

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I appreciate your excellent points and I did meet with an oncologist who told me that if quality of life is what I care about the most then I needed to get in touch with hospice. It is what I want and so today I signed up for hospice care. If I change my mind I can leave their care and seek other options. I can assure you that is not going to happen. I'm very pleased with my battle with cancer. It will win the war but I will go down with my boots on and a smile on my face.

griff 1
Posts: 114
Joined: Jun 2010

good luck man, you sound very positive and that is a good way to be. i am new to the board and like the response everybody gets. make sure your boots look good. ha ha

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