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Hello, new member here...(sigh)

flyguy909
Posts: 7
Joined: Feb 2012

My wife and I just had the consultation with the urologist after the positive biopsy diagnosis. I'm 57, Gleason 6, PSA 4.6, 4 out of 12 cores involved with one at 80% - all in the left node. The segmented picture of the prostate in the biopsy report showed some of the involved areas on the perimeter on that side. Does this necessarily mean the margin is compromised? Forgot to ask him. I would think if it was he would have suggested a CAT and bone scan but he said based on the info there was no need.

He's pushing surgery and then the seeds (which is his specialty). He also said I have plenty of time to decide.

I told him I was very concerned about side-effects and have been researching the less invasive treatments like proton, cyberknife, and tomo-therapy. His advice is I am too young for any of these, and that his group has done literally thousands of DaVinci's and seed implants. He showed me a recent article on how proton side effects were thought to be more prevalent than regular IMRT... which is the reverse of what I've read. Boy, it's a real mine field out there.

I asked him to send the slides to Mass General who I've already talked to - they've said they can't do the consultation until they get the slides. But my urologist said I should talk to one of the surgeons in his group first and let the hospital look at the slides first. Didn't really feel like arguing with him right then but the reality is I REALLY hope to avoid surgery.

Am I being realistic about this?

tarhoosier
Posts: 181
Joined: Aug 2006

Your are realistic. Your urologist is doing you no favors. Recommending a second opinion with his business partner is sad. This should never happen. Feel free to question his professional judgment on this. If you feel he is "pushing" any treatment with you, that is the sign to look elsewhere.
Second opinion on the biopsy slides from a recognized expert is an excellent idea. This is the key component of any treatment decision.
By the way, I am completely confused about surgery and then seeds. Where would seeds go with no prostate? This is incomplete or misunderstood information.
Make sure Mass General provides an opportunity to speak with one of their radiation oncologists to fill out your decision. Yes, you have time to do this. Take your time, relax, keep searching for information, ask questions, go to your local Prostate Cancer survivor support group and listen to their stories with a skeptical ear. Hug the wife.

flyguy909
Posts: 7
Joined: Feb 2012

Sorry for the confusion, what he was saying was the best option is surgery and the second best option is seeds.

Probably also should have said that I am talking to Mass Gen about proton beam only since they have an accelerator and are fairly close to me. The other options I mentioned - cyberknife and tomo-therapy are local to me here in Connecticut.

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

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

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

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.

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

Nevertheless, I welcome you and wish you the best of luck. With a Gleason score of six, it should be safe to take your time to sort things out as you tred through that mine field. Study the options carefully and fully and choose the one that fits you and your wife.

You are getting excellent advice from other members of this club. I predict that you will be OK. Take a close look at that "watchful waiting" option.

Keep us posted.

Jerry

hopeful and opt...
Posts: 1293
Joined: Apr 2009

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.

rickog
Posts: 1
Joined: Feb 2012

I was diagnosed on October the 3rd, 2011 and radical robotic surgery on the 8th of Novembeer. PSA 5.9 12 needle biopsy with all 12 had cancer. gleason 4+3=7. After much discussion with wife and a 2nd opion opted for surgery as I was sprayed with agent orange in 1967 in Vietnam. Have applied for extra benefits but time is on their side. Am struggling with incontinence and the doctor is talking AdVance male sling. Any when out there have any comments. The incontinence is six or seven soaked pads a day.

Swingshiftworker
Posts: 626
Joined: Mar 2010

Kongo is right.

Your urologist's suggestion hat you're too young for CK, PBT or other alternative radiation treatments is complete NONSENSE!

It's common practice among urologists to steer "younger" men w/PCa towards surgery; the theory being that if you're younger you're better able to deal w/the trauma of surgery. But, that never made any sense to me given the high risk of ED, incontinence and other problems following surgery and given the equal effectiveness of other treatments (including CK, PBT and others) without the substantial risks of surgery.

Like Kongo, my diagnosis was similar to yours and I too chose CK. The PCa seems to be in remission and I have had no side effects whatsoever.

FWIW, I suggest you find another urologist or at least get a 2nd opinion from someone NOT associated with him or his office.

Sounds like you already have a good take on your options. Explore them and come up with the best choice based on YOUR assessment of the risks and benefits of each.

Good luck!

flyguy909
Posts: 7
Joined: Feb 2012

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.

tarhoosier
Posts: 181
Joined: Aug 2006

The experience and superiority of the doctor is far, far ahead of the type of machine that he/she uses. A great pilot can show his superior skill regardless of the plane.
Find the doctor you trust and who has the greatest skill and training, who is most highly recommended by other doctors, and let him decide on the type of machine best for your situation. As I often say, it is the archer, not the arrow.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

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
Posts: 7
Joined: Feb 2012

I'm in Connecticut. My uro says the surgeon in his group has done over 1000 DaVinci's and the other guy over 800. He said other surgeons come here (Hartford Hospital) for training. So I guess if I have to go the surgery route, then that's a comfort.

I have a friend who went thru this 4 years ago and decided on RP over robotic because the surgeon was Albertson at the UCONN medical center. Supposedly world renown. He ended up having to do salvage radiation afterwards with hormone therapy and is still alittle incontinent and has complete ED. I do understand that this is just a sample of 1. But still scary.

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

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
Posts: 7
Joined: Feb 2012

Thanks very much for sharing. Yea, when I said he "implied", it was because I had the impression he danced around the question just a little bit.

Swingshiftworker
Posts: 626
Joined: Mar 2010

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
Posts: 7
Joined: Feb 2012

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.

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

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

Swingshiftworker
Posts: 626
Joined: Mar 2010

Flyguy:

If my insurance covered both CK and PBT and I lived close to a treatment facility for both, I would have still chosen CK because of the reduced number of treatments and increased accuracy of CK over PBT (which eliminate the need for the body casts and balloon).

Nothing against PBT. It has a good track record -- longer than CK -- and a huge support group w/BOB (Brotherhood of the Balloon sponsored by Marckini). However, I do think CK has now technologically superseded it and, if it was available when Marckini had to make the decision, I think he may very well have chosen CK over PBT.

I agree that the medical centers have a huge investment in PBT and that they certainly are not going to shut them down because something new has come along. So, while I don't think they necessarily "push" PBT, they have no choice but to tell a patient that that's all they have to offer rather than invest more money in CK (or other technologies) which might be better but also endanger their investment in PBT equipment, training and personnel.

Remember, they actually have to build a nuclear particle accelerator (a cyclotron) in order to establish a proton beam therapy center at a cost (according to one report) of between $100-225M to build and this doesn't include the associated costs of training and maintaining the personnel and associated facilities.

So, like any consult, you have to take what the PBT people tell you with a grain of salt. Let us know what they say and I'll be interested to hear why they think they can now conduct PBT w/o a balloon, because if everyone who does PBT stops using the balloons, BOB will have to adopt a new name. LOL!

Good luck!

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi Flyguy
I am 47 years old and was diagnosed with PCa on Oct 13, 2011. My initial PSA was 93, follow up tests resulted in scores of 110, 118. My gleason score was 7 (4+3), the Cat scan showed a tumor on the left side only, bone scan came back negative (no spreading). My urologist suggested surgery but also recommended that I seek 2nd opinions. I did a lot of research on all options and sought advice within this group. I received a lot of information and finally decided with going for treatment at Moffitt Cancer Center. I was placed on Lupron, completed my 25 Imrt treatments, and just completed my surgery for Palladium seed implants yesterday (Feb 3, 2012). My PSA aftervtreatment was 0.34, and my prostate size ws down from 60 to 34. My advice to you is to get multiple opinions on the treatments you are considering. I have a friend that did the surgery with the Da Vinci robot, he is doing well but had some side effects that I didnt want to deal with. When I asked why he went with the surgery, he said it was the only choice his doctor brought up. do the research, the choice is yours to make. Yes, you are being realistic! My doctor also has prescriped celebrex to help minimize swelling after the surgery. I am also on Adovart and flomax. Long road ahead, taking it one day at a time ;-)

Dont let distance to treatment be the deciding factor. i got outstanding treatment at Moffitt which is two hours away. there are options for assistance. I stayed at the Hope Lodge for my 5 weeks of treatment, free of charge thanks to the American Cancer Society and those volunteers that donate and support ACS. I know I made the best choice for me. Take care, be positive, it really does help.

Jim

hunter49
Posts: 200
Joined: Oct 2011

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.

Feb2010
Posts: 51
Joined: Mar 2010

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.

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