Hello, new member here...(sigh)

Kongo said:

Too Young for Anything Except Surgery?
Flyguy,

Welcome to the forum and I'm sorry that you are here. I'm also sorry that you seem to have connected with a urologist who, from what you have written, seems to be steering you toward surgery without giving you a broader perspective of the treatments available to you.

I had a similar diagnosis to yours in that my Gleason score was 3+3=6, PSA was 4.2, normal DRE, no history, no symptoms, etc. My age at diagnosis was 59. After seeking opinions from six specialists that included proton treatment at Loma Linda, surgeons (both open and DaVinci), radiologists, and oncologists, I chose CyberKnife and have had zero side effects.

The suggestion that you're too young for radiation is nonsense.

Hopefully you will seek second opinions from radiologists who specialize in SBRT, IMRT, IGRT, Tomo, Brachytherapy, and proton therapy and anything else that sparks your curiosity. You don't get any Mulligans on this and you want to be sure that you make the right decision.

Without seeing the actual pathology report on your biopsy it's impossible to know if the the prostate cancer exceeds the margins but from what you described it doesn't sound like it. Positive or negative margins are terms used to describe a post surgery prostate sample and indicates whether or not the cancer had penetrated the capsule. Most prostate cancer is nearer the perimiter of the prostate rather than the interior.

You didn't mention the size of your prostate which should have been measured when they performed the biopsy. If your prostate was larger than normal it most likely is a result of BPH not cancer and in fact most PSA readings between 4 and 10 are the result of BPH not cancer.

I do agree that you have some time to consider your options, and one of your options ought to be active surveillance.

Good luck to you.

K

You've come to the right place
unfortunately you have joined our club. i was 55 when diagnosed with p/c. everybody has their own story. you can pick out the things that apply to you. you will get a plethora of information here. good luck to you.

Take a breath,
We all go through shock and all the negative feeling when we are diagnosed...this usually lasts a few month........be positive, enjoy the moments....do positive things, for example if you attend religious services, only attend with an upbeat clergy person; basically do things like this.

Stay focused gaining knowledge, but enjoy life as well....we all for the most part enjoy life more than we did before diagnosis.

Eat a heart healthy diet, it is probably good for prostate cancer, and definitely good for the heart......we are more likely to die of heart disease than prostate cancer.

There is a test MRI with a spectroscopy which will gie an indication of where the cancer is in your prostate, size, and show if there is extracapular extension. Click my name discussion of this test is discribed

It is very, very , very important to to get a second opinion of your pathology by an expert in the field, there are only about a dozen, so that you will not be under or over treated.

Why did the doc decide to do a biopsy? Was the dre normal or abnormal? What is the history of your psa?

Active surveillance may not be an option for you. generally they look for 3 cores with less than 50 percent involvement in each, however I would speak to a specialist on active surveillance. Try going to a major center of excellence for a consultation. That said , you are still not in a rush to make a decision on treatment.

Anyway here are a few thoughts, to get started, get back to us.


PS you go by flyguy...were you in military, if so you may be eligible for extra benefits, if you were exposed to agent orange.

flyguy909 said:

Thanks, appreciate the
Thanks, appreciate the feedback. My GP decided to send me to a urologist in their group because the psa breached 4.0. It's been slowly rising for the last 5 or 6 years... no big jumps. Then the urologist said he thought he felt something on the DRE, so ordered the biopsy. My mistake was letting them just assign me to whoever instead of selecting the urologist myself. That was a mistake and I will not use him for anything else.

Interestingly enough the urologist said what he felt during DRE and what he saw on the ultrasound turned out to be not cancerous. It was was on the other side. With all of it on one side, he said during surgery they might opt to take the nerve bundle on that side. I asked if the other nerve bundle was enough for full function and he implied that it was.

I have an appt with the CK doc next week, but won't be able to get a consult for proton beam at Mass Gen until March. If the Cyberknife option looks good next week, it will be hard to wait. Also the urologist is going to send me to talk to one of their Da Vinci guys. I'm going to have to push myself to do that because at this point I really don't even want to go there.

Oh... and not military. My oldest son and my dad are/were military pilots, I'm just a private pilot.

robotic surgeon
there is a big difference in outvcome for surgery based on the skill of the surgeon...success or failure.......a surgeon needs to do a minimun of 250 to 300 at a minimum otherwise he is practicing on you.

Proton is fairly expensive, it has been shown to be no better than other radiations...

I know that you have fear with the +cancer in your body" but pc is slow growing you have a few months to research, research, research and study some more to make the best decision.

Where do you live

flyguy909 said:

Thanks, appreciate the
Thanks, appreciate the feedback. My GP decided to send me to a urologist in their group because the psa breached 4.0. It's been slowly rising for the last 5 or 6 years... no big jumps. Then the urologist said he thought he felt something on the DRE, so ordered the biopsy. My mistake was letting them just assign me to whoever instead of selecting the urologist myself. That was a mistake and I will not use him for anything else.

Interestingly enough the urologist said what he felt during DRE and what he saw on the ultrasound turned out to be not cancerous. It was was on the other side. With all of it on one side, he said during surgery they might opt to take the nerve bundle on that side. I asked if the other nerve bundle was enough for full function and he implied that it was.

I have an appt with the CK doc next week, but won't be able to get a consult for proton beam at Mass Gen until March. If the Cyberknife option looks good next week, it will be hard to wait. Also the urologist is going to send me to talk to one of their Da Vinci guys. I'm going to have to push myself to do that because at this point I really don't even want to go there.

Oh... and not military. My oldest son and my dad are/were military pilots, I'm just a private pilot.

Ask for evidence for that statement
I question that urologist's statement that one nerve bundle would be sufficient for full function. Prior to my surgery (in 1991), my urologist made a special point to tell me that he performed the "new" technique of nerve sparing. Immediately after he completed surgery, he said that the cancer had grown around the nerves on one side but that he had been able to spare the nerves on the other side. He made no promise concerning the consequences for my sex life and I was afraid to ask. As it turned out, I was able to get only a "partial" erection. Better than nothing, of course. I hold no grudge against the doctor. I trusted him; I liked him; and I credit him with saving my life. The 20 years since that time have been very good ones for me and I continue to be pain free and happy. And my bride of almost 63 years seems to be OK with this, and I am certain that she is glad I am still here.

Just thought this information might be worth sharing

Jerry

flyguy909 said:

Thanks, appreciate the
Thanks, appreciate the feedback. My GP decided to send me to a urologist in their group because the psa breached 4.0. It's been slowly rising for the last 5 or 6 years... no big jumps. Then the urologist said he thought he felt something on the DRE, so ordered the biopsy. My mistake was letting them just assign me to whoever instead of selecting the urologist myself. That was a mistake and I will not use him for anything else.

Interestingly enough the urologist said what he felt during DRE and what he saw on the ultrasound turned out to be not cancerous. It was was on the other side. With all of it on one side, he said during surgery they might opt to take the nerve bundle on that side. I asked if the other nerve bundle was enough for full function and he implied that it was.

I have an appt with the CK doc next week, but won't be able to get a consult for proton beam at Mass Gen until March. If the Cyberknife option looks good next week, it will be hard to wait. Also the urologist is going to send me to talk to one of their Da Vinci guys. I'm going to have to push myself to do that because at this point I really don't even want to go there.

Oh... and not military. My oldest son and my dad are/were military pilots, I'm just a private pilot.

CK vs. PBT
Flyguy:

FWIW, I chose CK over PBT for the following reasons:

1) It was available to me at the UC Med Center where I lived in San Francisco, so treatment did not require any traveling;

2) It was covered by Blue Shield under my group health program but had to switch from Kaiser to Blue Shield during open enrollment which delayed my treatment for 6 months (from March to Sept 2010); and

3) PBT requires 28-40 treatments (depending on whether a high or low dose protocol is followed and also requires living near or traveling to and staying in a motel near the treatment center for 28-40 days) and also requires the use of a body cast to prevent movement during treatment and a water filled balloon inserted in your butt before each treatment in order to protect the rectum; CK adjusts for body and organ movement w/o the need for a body cast or water filled balloons.

So, all things being equal and assuming you're eligible for treatment, I don't think you'd make a mistake by choosing to go ahead w/CK w/o first talking w/the people at Mass Gen about PBT. But, then again, I don't think you'd risk anything by waiting until March to talk w/the people at Mass Gen either.

If you want to make sure that you're doing the right thing by ruling PBT out w/o talking to the people at Mass Gen, just read Robert Marckini's book - "You Can Beat Prostate Cancer -- And You Don't Need Surgery To Do It" -- on his experience w/PBT. I got a copy free from both Loma Linda and U of Florida just by inquiring about the procedure at each location.

Good luck!

flyguy909 said:

Swingshift,
Yes, one of the
Swingshift,

Yes, one of the first things I did was read Marckini's book. Gave me alot of hope.

I understand your decision process, but let me ask a hypothetical... if your insurance would have covered either CK or PBT, and you lived close to a PBT facility where the two month treatment would not have been a huge inconvenience.. do you think you would have still chose CK?

You got to wonder.. if CK was available when Marckini was doing his due-diligence whether he would have still chose PBT? That's one of my concerns about the upcoming decision process - that maybe CK is superior (say for my case), but the PBT facilities have SO much $$ invested that they have no choice but to push their therapy. Then I read somewhere that the new PBT centers coming on line have a more accurate "pencil beam" delivery.. that Loma Linda and MassGen do not. Also, I understand MassGen does not do the balloon thing like Loma Linda. All questions when I talk to them...

Again, thanks for all the responses.

My Choice
Flyguy,

My insurance covered both proton therapy and CK. I live fairly close to Loma Linda Medical Center, the flagship for proton therapy. After consulting with both Loma Linda and CK I chose CyberKnife. I was very impressed with Loma Linda and their program, particularly their approach to treating the whole man not just the cancer. In the end I chose CK and mostly that was because of a technical analysis of the accuracy of the treatment and the inherent difficulty in controlling the Bragg peak in proton therapy as compared to the real time tracking and adjustment that CyberKnife offers.

Proton therapy became my #2 choice.

K

Welcome fly and sorry you
Welcome fly and sorry you had to join. There is a great group of men and women here for support and advice. I had surgery November 10th and and was diagnosed in late Sept. I was 3 out of 15 cores gleason 3+4 but all three were fom one spot and my psa was then a 4.1 but went to 5.4 before surgery. Normal DRE and perineural invasion (pni) cited. However, pni is more of an issue if the cancer breaks out of the capsule. My surgery went well and my gleason was upgraded to a 4+3 but all margins, lymph and seminal vessels clear. That is good news but there was a small tumor in the other lobe the biopsy missed. The only way to have conclusive proof of what you have is by surgery. A pathologist can examine the gland and see what has happened. However, I am NOT advocating surgery for you only it gives you the best information of what you have and if it returns by seeing a rising psa. I had very minimal side effects. A little dripping for a few weeks and I mean drops, stopped using pads after about 4 weeks and ED. However, everyone who has surgery will have some temporary ED as the nerves are moved and handled causing them to go into shock (even for a few weeks). I got erections about 2 weeks after surgery from time to time and then they stopped completely in late December and then started up again in late January. I was able to have sex for the first time Friday nite and yesterday (drug free) and yes someone else was in the room . In considering treatment my advice is get second and third opinions. I went to Hopkins where they have a clinic that reviews your slides and an oncologist, radiolist and and surgeon review your case and recomend treatment. I met with Dr.'s Partin and Epstien both where are top in the field and they recomended surgery as did the radiologist Dr. Tran, who is top in the field. The only correct answer is which treatment is comfortable for you to live with. And you will live. Good luck and if you have any questions that need more detail send me an e-mail here. Good luck and have a posative attitude nothing better.

OTHER OPTIONS
Fly, lots of options here. Talk, listen, and decide for yourself which one is best for you. I have opted for Proton. You could email me at rxt555@yahoo.com if you want.