HealingWell
Search Close Search
☰

Just Diagnosed Today w/PCa - Help

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/27/2013 7:27 PM (GMT 0)

Hello again!! I am back after some weeks to re-check my PSA and have a biopsy...btw, my UR did a valium IV and I didn't feel a thing. Anyway, I was diagnosed today with PCa. It was not really a big surprise but regrettable. My wife, bless her, just finished her last radiation treatment for triple negative breast cancer and is in remission....she is really down about my diagnosis. My numbers: PSA 5.3, two cores of 12 positive with Adenocarcinoma. One core is GS 3+3=6 and 1.0%, the second core is 4+3=7 and 13% (both cores are on left). Prostate is 39cc. UR says he really believes the PC is confined to the prostate. I asked to have the pathology re-read by Duke University which takes a couple of weeks. My CT scan is scheduled in 4 weeks and a bone scan. He suggested, and gave me a one-month shot of Eligard, then I will have a three-month shot of Lupron to reduce my PSA and shrink the prostate. He says that will give me time to decide what I want to do without any problems at all. He says he would recommend Brachythreapy.They have a doctor come up from High Point, NC to do it, that he says is excellent. So, this group has a vested interest I think. However, my wife and I really like this UR. he said if he had PC, he would have this same doc do the Brachy. My wife's Radiation Oncologist does not agree. She prefers I go to or Wake Forest Baptist, or Duke, both within 3 hours.

Treatment will be a hard decision, but if it is in any lymph nodes, I will likely have surgery to get the most of the PCa and remove the affected lymph nodes. Actually makes me want to head to Duke now and have the robotic surgery by Dr. Moul - one of the best here. So, that's where I am now folks. Please give me some of your knowledge and experience!!

Bless all of you!

Robert

 

8/1/06 age 60, PSA 1.1

2/26/08 age 62 PSA 2.1 (UR agreed workout and exercise bike that morning

affected test. I didn’t know not to exercise before test).

7/30/08 age 62 PSA 1.3

9/19/09 age 63 PSA 1.5

10/28/10 age 64 PSA 2.2

5/4/11 age 65 PSA 2.3

1/10/13 age 67 PSA 6.6

1/28/13 age 67 PSA 5.3

(Note, was using 1mg finasteride a few years)

Posted 2/27/2013 7:45 PM (GMT 0)
Hi Robert, and welcome (back) to our little corner of the world. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on. Please keep in mind that with your statistics you have time, and also a number of treatment options available to you.

Good move on getting a 2nd read on your biopsy slides. If I recall you've been hanging around for awhile now, first trying to decide on whether to get the biopsy or not? So then you've also probably been on an information-gathering mission for awhile too?!

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment. Have you looked into any of the books out there yet? Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You will also want to talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. I believe there are a number of guys/gals in your neck of the woods that could provide their experience with local practioners in the different modalities. When you do meet with them, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining") - same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so again if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this leg of your journey.
Posted 2/27/2013 8:11 PM (GMT 0)
Hi Robert, it is hard to face such a diagnosis, no doubt on top of dealing with your wife´s situation. You have come to a great place for advice and support. Your biopsy indicates low-volume cancer and it gives you enough time to get several opinions, on pathology, as you indicated, as well as on a treatment path. Just below your topic, there is a link to the article in Washington Post that is worth reading for someone like you, who is just diagnosed. The part that is most impressive is the following of cancer progression with most modern MRI imaging. You have to keep in mind that this is not standard care, most patients are not sent for detailed imaging. Imaging that is readily available to any patient (CT scan, 1.5 Tesla MRI, ultrasound) does not detect cancer in the prostate. Here is the link:

www.washingtonpost.com/national/health-science/when-his-psa-score-spiked-prostate-surgery-loomed-but-nih-offered-another-way/2013/02/25/077f66c0-42f9-11e2-8e70-e1993528222d_story.html

It is not good news to hear, but there are many guys with much worse numbers than yours and are doing well years after the original diagnosis, including my father as you can see from my signature. All the best to you and your wife.
Posted 2/27/2013 8:36 PM (GMT 0)
Robert. just wanted you to know that before my husband made his final decision on treatment, he interviewed with both Dr. Moul (surgeon) and Dr. Lee (radiation oncologist) at Duke. We met with one in the morning and one in the afternoon after a simple phone call to their offices to set up the appointments. We went questions in hand and were very impressed with both men. Had my husband had surgery, we would have felt very secure with Dr. Moul (he does open, not robotic, surgery). My husband instead opted for IMRT/6 months HT with Dr. Lee. We couldn't be happier with our experience and results thus far. (My husband is 69 years old, normal DRE, PSA was at 5.2, and he was a Gleason 7 (3+4).
Posted 2/27/2013 8:42 PM (GMT 0)
Sorry for the news.
I think it is unlikely that the cancer would be in lymph nodes with that PSA. You might live 10 years without primary treatment.
Brachy sounds reasonable to me. Good luck.
Posted 2/27/2013 8:46 PM (GMT 0)
maybe others will confirm from their own experiences, but it looks like you're doing a lot of additional tests and getting a lot of shots. I'm ignorant as to why, maybe others will clarify.

Good call on getting a second reading on slides.

You probably have various treatment options which will be equally effective.
Posted 2/27/2013 8:50 PM (GMT 0)
Hello Robert,

I've always enjoyed our discussions but I am sorry to see you back with unsettling news. I'm glad you have gotten past your initial jitters and are in the process of gathering information about your condition. The WaPo article that the special lady recommended is an interesting read, but if you read it closely you will see that, if your Gleason 7 (4+3) diagnosis holds up on the second reading of your slides, it probably won't apply to you completely. That GS7(4+3) core puts you in a risk category that will most likely rule out Active Surveillance.

At this point you have the luxury of gathering more information before you make up your mind about treatment. With your new-found risk level your uro was smart to put you on temporary HT. It will shrink your prostate and several of the treatments you are looking at work better with a smaller prostate. It also gives you more time to safely assess things before you decide.
Posted 2/27/2013 9:58 PM (GMT 0)
Thanks to all who have responded so far!! You guys know so much about this complicated disease. I am concerned mostly about the 4+3= 7 core at 13%, to not be able to stop/cure it?? Hopefully Duke's Path. will say it is 3+3, or 3+4:).

The UR here seems to be very knowlegeable and a good man for doing a valium IV at biopsy. But to your point, I want to possibly go down and talk to two doctors at Duke...however seems they wold obviously want to advise and do what THEY were trained to do, which is understandable. That's where results come in. Also, that's why Dr. Scholz pushes to see a Prostate Oncologist. There aren't any around here that I'm aware of, so would have to just see a medical oncologist who has treated a lot of PC.

Sorry for going on and on, but my thoughts are buzing around.

Thanks!!

Robert 

Posted 2/27/2013 10:17 PM (GMT 0)
Sounds like the uro is setting you up for Brachy. I agree with Davidg. Don't understand the HT shots and the rest. I actually like Brachy for those eligible, just don't like doc's setting it up for you without letting you know why. Why else, would he want to shrink your prostate. If he wants to reduce your psa, hows about helping you know what primary treatments, you would be eligible for, and lead you to the experts in those treatments, then YOU decide. Then let that primary treatment reduce your psa. you may need HT at some point, but imo he is way over the top in paternalism and arrogance. Not a medical doctor, including physchiatrist, just an edumacated opinion……...
Posted 2/27/2013 10:47 PM (GMT 0)
Logoslidat: My theory is the preponderance of type 4 cells in the biopsy made his uro nervous. I think the main reason for the HT shots is to keep his cancer suppressed while he makes his decision and sets up some sort of treatment. The HT will be helpful if he decides on Brachy, but actually it also helps with external beam radiation and even surgery. With a smaller target, external beam radiation can use less radiation to get the same dose in the treatment area. It is true that surgery can handle prostates of any size but, nonetheless, men with smaller prostates bleed less and tend to recover continence earlier.
Posted 2/28/2013 12:55 AM (GMT 0)
Robert,
Sorry that you had to come back but we knew that you would return! Please let your wife know that we (I) am hopeful that she will make a full recovery from BC..I had the most "anxiety" last week when I drove my wife to the hospital for a "repeat" biopsy. Thankfully it was doubled up breast tissue so the test was negative..A lot more grey hairs--wish it was white..
Anyway, any decision that you make will be the right one! I don't know which scan would be best for your major concern that the PC hadn't progressed to the lymph nodes--the only scans that I had were a bone and CT scan..Irmaly is something of an expert so perhaps she can enlighten you; also, a gentleman in Highland Park had numerous nodes removed so perhaps he can provide you with this information or others on this forum..As most members have commented, with your intermediate PC and low gleason it is doubtful that you have lymph node involvement but I am sure that you want to be certain!!Again, I wish your wife the best and you will live to be a "grumpy" old man like me regardless of your treatment decision..Ger it done.
Bill
Posted 2/28/2013 1:15 AM (GMT 0)
Robert,
Your G4+3 is very small and your psa indicates that it has not escaped the prostate. It is very curable by almost any treatment. I don't see the reason for Eligard as it is overkill. A 39cc prostate does not have to be shrunk for Brachy. Casodex would do just as good a job with about 20% of the side effects and make radiation more effective.
Posted 2/28/2013 2:53 AM (GMT 0)
I had brachytherapy on 21 February and I am living normally.

My bottom is sore - cushioned chairs, please - but not severe, just uncomfortable. I regained urine function before I left the hospital and I only took pain meds for 8 hours. I am no he-man, and there are certainly after-effects and it seems they are highly individual (as with any PC treatment), but based on my experience I would strongly recommend you consider brachyterapy.

No incision. No catheter. Better sexual function.

I was scorekeeping at a wrestling tournament the 2nd day after the procedure. 

I am sure I am in the lucky few, but I have not had to take pain med or Flomax (though I would without hesitation if I needed to). My stream is not strong but it's enough and I can empty. The first pee hurt (and I noted a little slug of partially coagulated blood in the urinal. I'm thinking it was a good thing to push that out before it got any more set. The next few were uncomfortable, but satisfying. You MUST drink water. It does increase frequency, but I am convinced that (assuming things are otherwise normal) the sooner you use the plumbing the better. Bowel activity has been affected but again, mostly just an adjustment. 

Sexual function is different, but I have it. Some report painful orgasms and/or loss of libido. I have had neither. Semen is bloody - like after the biopsy.

Your diagnosis is very much like mine. I did not do hormone therapy, but my prostate had not become enlarged. I actually did "active surveillace for 16 months, but second biopsy showed the cancer was slowly advancing, so time to treat it.

As you read the posts in this forum, you will hear hundreds/thousands of stories. The simple fact is that each of us will have our own individual journey, and it will not be a walk in the park but it can give us many years of life that we would not have otherwise have.

After awhile, we get better. And the more you really believe that, the more likely you will have an interesting and enlightening, if regettable, experience. And you survived. And life went on.

So good luck. Listen to your body. Drink lots of water. Pray as necessary.   

Posted 2/28/2013 3:35 AM (GMT 0)
Sounds like you've got a good doc looking out for you. More information the better. Be interesting to hear what the second reading comes up with.

In you're case almost any treatment would work but I think Brachy is good option to look into. That with the shot you just got should kick the PC right out of there.

Keep us updated and enjoy life.
All the best,
Andrew
Posted 2/28/2013 3:54 AM (GMT 0)
John T,

He said he wanted to do the Eligard to lower the PSA quickly. I asked about Casodex before the three-month Lupron he is planning but he said I don't need that for flare unless I would be on HT long term. So should I to back and tell him I want Casodex instead of Lupron which I agree with for less side effects? I asked him should I see the local medical oncologist for the shots, and he said the UR group could do them. Maybe I should be seeing medical oncologist anyway...but this UR seems to be very good.

The PSA could be higher than 5.3 due to 1mg finasteride, but I had cut way back on it in last two months.

Should I consider parametric 3-D MRI at Duke. If I do seeds, I don't get the path like after surgery, and PCa could be higher grade and more of it?

Robert
Posted 2/28/2013 8:32 AM (GMT 0)
Peter, I hear you, but it does seem out of the " standard of care ", not that there's anything wrong with that,,,,, I guess…...
Posted 2/28/2013 12:31 PM (GMT 0)
 Brachy would have been my second choice. You have plenty of time to make the decision that is right for you. Good luck.

Posted 2/28/2013 2:03 PM (GMT 0)
I have not made calls yet, but anyone already know if Eligard and other HT injections/drugs...Casodex etc. are covered by Medicare B? I also have Part D, and a Medicare supplement that pays 100% of what Medicare does not pay for covered items.

Thanks,

Robert

Posted 2/28/2013 2:30 PM (GMT 0)
Lupron and Casodex are covered under Medicare.
Posted 2/28/2013 5:25 PM (GMT 0)
You can use Casodex for the same purpose. Most doctors are unaware of this and use Lupron type drugs because they have always done it that way.
My RO recommended Lupron, but my oncologist convinced him that Casodex was better for this purpose and he went along.
A 3D mri would be a good idea if you were considering surgery in order to know the location of the tumor. In Brachy it would add little as the entire prostate and a small margin will be treated regardless of what the MRI showed. The MRI is useful to eliminate or confirm surgery as an option.
Posted 2/28/2013 5:51 PM (GMT 0)
John,

Wouldn't an MRI result that ruled out surgery also suggest the addition of IMRT to the brachy? In surgery the entire prostate is removed and the surrounding tissues examined and that margin area that would be included in the brachy treatment may be removed with the prostate if it is questionable. I tend to think of brachytherapy and surgery as having similar effects. Am I wrong?
Posted 2/28/2013 6:18 PM (GMT 0)
 

Time101,

 You have come to a great forum for support, but use the info as experiences others have gone through,.

Just to share:

My husband had RP Oct 2011 and we were told it was organ confined as lymph nodes were negetive for cancer. As it turned out my husbands PSA was never over

6.4 prior to PR ,it never was undectable after RP either.

We went to Stanford to have a highly sensitive CT/ Pet 18  scan done which confirmed PCa had already escaped the prostate bed and had metastasized to his spine.

Now on the positive note:

Husband was put on a HT treatment of casodex/ lupron for 1 year and I am now  happy to report after having all his scans repeated he is now in remission and is taking a holiday from HT.

Good luck with your treatment options and know you are getting good advice to seek specialists who work with PCa.

BOOGEE

Posted 2/28/2013 7:05 PM (GMT 0)
Hi-

just a tidbit on Duke- I don't know who all does the Davinci robotic surgery there, but Dr. Polascik does them routinely, and we had a good experience with him. Also saw Dr. Lee and liked him alot.

Lily

Posted 2/28/2013 8:05 PM (GMT 0)
Robert,
Not quite. Brachy does a good job if the cancer is around the nerves or in the apex as these are areas that surgery often fails. If there are signs of extra capsular extension or high psa the adding is an excellent choice. Also adding IMRT for large volume tumors is also recommended. Every indication is that your tumor volume is small and there is no evidence that it is not contained, so brachy alone should be very effective.
JT
Posted 2/28/2013 8:27 PM (GMT 0)
Thanks to all again for your expertise and experiences. I am digesting it all believe me. Have a bone scan in the morning with a little apprehension. Upper back muscles have been bothering me on and off for about three weeks. Did some work on my Jetta a couple of weeks ago laying on the ground on gravel. Had massage therapy Tuesday, and had a couple of muscle knots from stress etc. I was told. You see, anything that doesn't feel right, since I had the PC biopsy and waiting for results can make me think the worst at times. I know you all have been through many stressful times.

Lily, thanks for the note about Dr. Polascik. The Radiation Oncologist in Boone, NC also recommends Dr. Ronald Davis for Brachytherapy at Wake Forest Baptist?

And, Boogee, that's great news about your husband. Do you know what the percent was for the 4+3 core? And, where did he have RP? Seems there are no totally right answers with this disease, however, stats say we can live long lives.

Robert
✚ New Topic ✚ Reply
12