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Newly Diagnosed (Just Yesterday)

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

After all the tests result were in I had a meeting with my Dr. yesterday to discuss the fact that I have prostate cancer. The synopsis is age 60, very good athletic health (I umpire HS and College baseball and softball),PSA 6.4, 3 out of 12 needles biopsy tested positive for cancer, Gleason Scale 7 (3+4), Torso CT Scan and Skeletal Survey show cancer confined to the prostate. The Dr. is recommending near immediate treatment using either radiation or surgery. The surgery recommended is da Vinci. I am not new at researching cancer as my wife was diagnosed with Multiple Myeloma in 2005 and has undergone radiation, chemo and stem cell transplant. I am leaning towards the da Vinci for quality of life, and minimal down time as I need my energies to care for my wife. My doctor said that I am not a candidate for Watchful Waiting because of the Gleason Score. Really looking for some success stories and maybe a little guidance from the real prostate cancer folks and not just the docs.

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

My stats were about the same as yours (Gleason 3+4, PSA 4+, age 60). I don't know that I can claim to be a "success story," as I'm only a few months ahead of you, but for what it's worth, my story is at http://www.sv-moira.com and scroll down half way to the "Prostate Cancer" link.

It would be interesting to hear the rationale for recommending DaVinci. That's the process I had, but I would like to hear their reasoning. I could easily have gone with open surgery. The most important thing is not the technology but the skill and experience and track record of the surgeon/operator.

The mainstream treatment modes (surgery, radiation) have roughly equivalent outcomes in terms of survival rates. So you get to pick based on access to *really good* practitioners, quality of life issues, etc.

One element that was important to me in favor of surgery (either open or robotic) is that radiation makes a decent backup if you relapse after surgery, but not the other way around. Surgery gives its benefits right away, and has its worst side effects right away, while radiation has its benefits and side effects get stronger over time.

Welcome to the club. Sorry you're here, but welcome. Give your wife a hug for us.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

I really appreciate the feedback. With my biopsy so localized in just one quadrant of the prostate I am really wondering why my urologist seems to be pressing me for a decision in just 4 weeks. His organization does the da Vinci and I am wondering if it is in my best interest or his. I told him I wanted a completed copy of all of the files, tests and films as I was planning to get another look at the results and treatment options. He said that we should get together in 4 weeks and if I needed longer he wanted me to consider lupron injections to put the cancer to sleep for a month or two. Does this sound right to you and any others who want to chime in. My asking for the delay is to give me time to wrap my head around this and other things. My wife went into the hospital a little over two weeks ago with pneumonia and 3 days later she was she was in ICU on ventilator support and has been there for 13 days. My mind is just a little busy these days and making this sort of decision is a little complex right now. I will give her the hug you requested as soon as I am able. Sonny

lshick's picture
lshick
Posts: 63
Joined: Apr 2009

By all means, get a second opinion (I assume that's what you meant by "get another look"), by someone in a different organization (not the same hospital/practice), and in a different specialty (you're talking to a surgeon, so find an oncologist or radiologist). Be a jerk about asking "why?" and "show me the published evidence."

With a Gleason 3+4 I was given the impression that I could move, to borrow the words of the Supreme Court decision, with "all due deliberate speed." My primary care physician said she "could live with" a 4 month delay in getting a biopsy after the first elevated PSA. Delay doesn't help you, but if you use the time to achieve a better decision, it may help you a lot. But again, the technology is much less important to your outcome than the skill of the practitioner.

(Corrected the following) If it's any comfort, “If we don’t treat prostate cancer while it is still curable, the disease will take an average of ten to twelve years to metastasize and fifteen to seventeen years to cause death.” (Scardino & Kelman, p.110).

I can't comment on the Lupron. I suppose it might be good to "put it to sleep" but I know nothing about side effects, tradeoffs, etc.

Take a deep breath. You have time to make this decision the right way. Find the practitioner you trust and put yourself in his (I assume) hands. The technology is far less important--all the mainstream treatments have about the same survival, so you're picking based on quality-of-life and other such matters.

Good luck. I can post the ULRs of the websites and papers I look at if you want.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I'm 54 and waiting for my DaVinci surgery in August. I had 5 of 12 needle biopsy test positive for cancer. I've been waiting since Around early April. My Gleason's were all 7's at 3 found at 4+3 and 2 at 3+4.

Do your research and don't rush. My wife bought me an excellent book that I'm still reading its called Saving your Sex Life (a guide ofr men with Prostate Cancer) By. Dr. John Mulhall.
Its an excellent book that discusses the main treatment options.

Keep us posted about your wife and yourself. You will find this forum to be very supportive.

Larry

Watch.repair.man's picture
Watch.repair.man
Posts: 49
Joined: May 2009

Hello. I am 48.
I just got the news on May 12.
My PSA Went from 3.06 on Feb 6, to 4.46 on about Feb 12. Then on Apr 20 7.46.
Had the biopsy done on May 5th. Doctor took 6 biopsy's, 3 left and 3 right. The right side is clear, left side had one biopsy positive at 5%. Gleason 3+3=6.
Had the full body bone scan May 14.
I left my first doctor for reasons, and went to a group that is here in Tulsa, specializing in Urology.
I wanted it out of my body. I had the Davinci robotic surgery on June 15, 2009. Turns out my right side had more cancer than the left, which is what showed positive. Overall my prostate was 15% tumor, it did not break through the prostate, thank God.
It's not a cake walk to get the surgery. First week your in a lot of pain, hard to move.
Catheter is really not fun but necessary. I have had a burning every time I urinate, just irritation from the catheter. It stayed in 8 days.
I feel pretty good now. I want to do more than the doc and my wife will let me. My only complaint now is it hurts a little when I sneeze and cough. Incontinence is still a little factor. I believe it might get worse when my urinating gets better because of the swelling and irritation.
If I had it to do again, I would not hesitate at all and do it all over again.
I will pray for you and your wife. I hope everything comes out Ok for you.
Take care.
Keven

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

To the survivors club. I am 7 weeks post-op Da Vinci. I'm 65 with numbers similar to yours.
It appears you are exploring all your options. I too got the 2nd opinion from a radiation specialist...they swear by their specialty...then opted for Da vinci...mostly for 3 reasons; a friend my age, had the surgery by the surgeon I used (good results), radiation can be done after if needed& minimally invasive. Results have been back playing tennis after 10 days ( some soreness up to 6 weeks) no incontinance problem after 3 weeks, however ED is an issue. Have tried Vac. pump...don't like it...don't like pills either, but may resort to them. At 65 I know my best days are behind me but I'm not ready to close that door yet. Some say it takes a year or more to get full erections. Got my 1st PSA 3 weeks ago and it was 0.3. It should be more like 0.1. The Dr. said it is probably residue and will drop. My next test is next week. Anyway, there you have it...good luck, keep the faith & I wish you & your wife well.
Regards,
George

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

My cancer had already spread and surgery was not an option. I had one Lupron shot and 40 radiation treatments and have survived 5.5 years, but the cancer is back, however my prostate has no cancer in it at all which was confirmed by another biopsy last winter. My father had a case much like yours, at about your age, and had radiation treatment only and lived to be 90. He died of Alzhimiers. The side effects of Lupron are horrific and life changing, the side effects of radiation are easily dealt with. I do not know much about the side effects of surgery. Get a second opinion from someone besides a surgeon. Surgeons prefer that you get surgery as they profit more from that. It is sad but true. Make your own decision and try to get the stress out of your life, I did, and life is good.

jnetc
Posts: 19
Joined: Jul 2009

you made mention of lupron being horrifying.. My 48 yr old athletic husband has had two hot flashes and seems normal.. working out every day.. he had full radical prosectomy may 14th .. This is his third week on Lupron.. When does it hit?

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

I suggest that you get a second opinion on your pathology, so that you are not over or undertreated. Determining gleasons scores are very complicated. Dr. Epstein, Johns Hopkins is an expert in the field.

Also what is your geographic area. There are experts in each area, who some of can recommend.

We are with you,

good luck,

Ira

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Ira,
Thanks for the confirmation on the value of 2nd and maybe 3rd opinions. I am located in the Orlando, FL area and while the Urologist I have seen is considered one of the best in the area, I am a real believer on getting confirmations. My wife has been dealing with cancer for the last 4 years and seeing different docs certainly proved beneficial in the path of her treatment plans.

I am blessed and extremely fortunate to have a great insurance plan that feels that things this serious should be seen by the best. I called them about my results and they suggest that I contact what they consider one of their "Centers of Excellence" for review. It reads like a who's who of experts. Mayo Clinic, Moffitt Cancer Center in Tampa, Sloan Kettering and of course MD Anderson Houston.

MDA was the one we selected for my wife for her stem cell transplant and what a great choice it was. I have shipped my records and films off to them and will be talking with them this week. Someone else on this site was singing the praises of MDA and I can whole heartedly agree with their assessment of MDA.

I have become more of an expert in medical information searches than I ever hoped I would have to and it has been a blessing in disguise.

I am a little concerned that my Urol. seemed a little eager that I make a decision on the manner(Radiation or da Vinci) to approach this in such a short (2-3) week time frame. He didn't really give me any info to back up his sense of urgency and I surely hope that it wasn't financial on his part. His organization is equipped to do both in house.

I will feel a lot more comfortable after I have talked with MDA.

Thank you and all the others on this site for sharing their experiences. The value of information from those who personally experience rather than the clinical information from doctors is always a lot more helpful. While I know that every one's path and results are different, the information gained from their experiences is invaluable.

Thanks again,
Sonny

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hi Sonny,

My situation is similar to yours. I also have GREAT insurance.
My urologist in Augusta, Georgia gave me no confidence during our discussion of biopsy results. First of all, his practice would not call me with the results, I had to call them. We made 6 calls to the office starting 1 week post biopsy. I made 5 calls and my wife 1 call. We recieved the usual response of your results are not back yet and call on Wednesday, because that is the day the urologist is in the office. Finally, after 6 weeks, my wife called and demanded an explanation.
We met with the urologist to tell us I had cancer and if he was in my shoes, he would choose radiation. In fact, he already had his nurse schedule an appointment for us with a radiologist!!!! I said I would like to get a 2nd opinion and he encouraged one and stated "do not wait too long" He expected to see me in a month.
Well, I did my research which led me to Dr. Jarow at John Hopkins in Baltimore.
I had Gleason scores of 6 (3+3) and 7 (3+4) in two of the four affected core samples. I had 12 core samples.
Dr.Jarow was the best. He answered all our questions, explained the whole picture in great detail, and did not push for a decision or a "if I were you". He also performs @150 of these procedures per year, with 85-87% success rate.
I had Radical Robitic on May 1, 2009. Found 2 nodules contained to the organ with no evidence of invasion!!!
Recovery continues with the ups and downs of incontinence and we are being patient for the return of erections!!
Welcome to the club! Happy to have you here! Good luck in future decisions, we are here for you.

Jim (shubbysr)

clrwtr
Posts: 9
Joined: Jul 2009

I saw you were in Orlando and was wondering if your Dr. was Dr. Patel? I live in Clearwater and have decided to go with surgery with him Nov 6. I was just diagnosed yesterday.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I believe Dr. Patel has lots of experience which is a plus. I saw a video on the web (Which I watched) of him doing the robotic surgerical removal. At the end he talked about some difficult cases also he had worked on which was of interest.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Yes I am in the Orlando area, but my Dr. was not Patel. After and absolute ton of research I have decided to go to the Vattikuti Urology Institute of the Henry Ford Medical Institute in Detroit. My doctor will be Dr. Mani Menon.

Dr. Menon has been on the leading edge of da Vinci surgery for years. He was on the development team of the da Vinci and to date has done over 4000 surgeries. I looked up some of the Dr.s mentioned on this board and found that some of the ones most highly recommended were mentored by or trained by Dr. Menon. I'm one of the old school that believes why go to the student when the teacher is available.

I am flying to Detroit next Tuesday Aug 4th and meeting with Dr. Menon on the Wednesday. I am flying in for an opportunity to meet him and the others involved in the process as well as getting the lay of the land. I will schedule the surgery with them and then fly back home until time for the surgery.

Ultimately my decision on Dr. Menon was not just based on getting the damn thing out but, his development of surgical procedures that greatly enhance the quality of life afterwards. Mainly ED and incontinence. I have spoken with two individuals that have been there for the surgery in the last year and both of them report having no issues with either.

I will post more after my meeting next week.

Sonny

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Good luck on your visit. I'm interested to hear how it goes.

Larry

clrwtr
Posts: 9
Joined: Jul 2009

Dr Patel and Dr Menon were the two names given to be by a relative of one of the design engineers on the DeVinci robot as the best. My neighbor had his prostate removed by Dr Menon over a year ago and sings his praises. His comment to me that the surgery was a non event. He says he never took any pain medication and the results were as good as could be expected. I would be curious to hear about your meeting with Dr Menon and I would love to hear how many surgeries he has actually performed. I have heard that the 4,000 number includes his fellows and others in his practice who he allows to do much of the work. Dr Patel has actually has done over 3,000 himself and travels the world to train others. I do like the fact that Dr Menon has developed a system that does not require a catheter but I like having my Dr closer to home since I have had complications in the past and Detroit is a long way away. Also, I have BC and BS insurance and Dr Patel and Celebration hospital are preferred, not that money would be an issue when this procedure is being considered. Good Luck and keep us posted.

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Good Luck with your consult. I am a bit jealous of those that have "no issues" post-operatively.
Have a safe trip. Is wife traveling with you?

shubbysr

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Thanks for the good wishes. I am looking forward to the Detroit visit and meeting Dr. Menon. As I continue to do my research I am more convinced than ever that he is the guy for me.

No, unfortunately my wife will not be going. She is still in the Rehab facility and expected to get out next Thursday, the day after I get back from Detroit.

It seems in a funny kind of way that I am actually looking forward to making the trip by myself. I have been run rather ragged for the past six weeks with my wife in the hospital and my finding out about the PC. While I look forward to meeting the folks at Henry Ford Medical, I am also looking forward to having a couple of days where all I have to take care of is ME. I know it sounds kind of selfish, but man I could use a break.

I will of course post lots of details about my trip and the info I find out about Vattikuti Institute and Dr. Menon.

I spoke at length with a guy here in Orlando that had his surgery last October by Dr. Menon. He is not experiencing any ED or incontinence issues and sings their praises very highly. He said he truly loved the fact that they don't use the traditional catheter but rather a tube through the abdomen connected to the bladder. Three days post surgery he was walking the tour of the Henry Ford museum with his wife and having the bag in the holster on his leg never presented a problem. It was removed 7 days following surgery and he flew home 2 days later.

I sure hope that my experience is as good as his.

More later.

Sonny

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Don't feel quilty aboutlooking foward to the trip by yourself. I think we all need 'down time' when we are in stressful situations. I've read that it is a good suggestion to have someone with you during the consults because two people will tend to remember more of what the Dr. might say. Perhaps you could take a recording device with you and with the Dr. permission record your consult for future listening.

Larry

Kentr
Posts: 111
Joined: May 2009

I agree 100% with Larry. Have a friend come along with you if at all possible - the doctor might agree to the tape recorder routine but in this litigious society, he might feel VERY uncomfortable with the thought that you are recording things in the event you might want to sue him later.

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

Hey Sonny,

Do not worry about missing any answers, you will have plenty of time to think over all your specific info. You also have all of us to depend on! Have fun in TigerTown! It is my home town!

Jim (shubbysr)

segersales's picture
segersales
Posts: 11
Joined: Jul 2009

Good Luck to you. I had DaVinci surgery and was walking a mile in a week. Went to a trade show 3 weeks after. Tennis 6 weeks after.Had to have radiation treatments 2 years later to kill a few cels that had escaped, but you should be able to bounce back from the surgery fairly quickly

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