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Posted 6/20/2014 5:04 PM (GMT 0)
Well, unfortunately after lurking on this site for the past several weeks, it is time to join.  My husband received positive confirmation of his biopsy this week.

He turns 62 next month and went to the urologist in May with BPH symptoms.  DRE was normal.  Sent for a PSA which was 5.8 - had gone up from 2.9 twenty months earlier.  Obvious alarm.  Re-took test about 1 week later which was 6.5 with free PSA of 17 - different testing protocol which we understood as we read and compared the results.

Next up  was biopsy.  Tried to be positive given the percentages we were seeing were not horrible, but so far none of the less than alarming things you read about PC seems to hold true, particularly as I read this forum.  All this low and slow PC talk seems designed for guys in their 70's and up.

One thing that is so confusing is PSA.  Really as I look at some of your numbers I think, what ever prompted you to follow up.  Were your doctors that on top of things?   Certainly the lab values as compared to the levels of normal on the results sheet would never have prompted us to look at anything.   I have lots of other lab values that are much higher in the range of normal than his PSAs were.  I know that PSA doesn't tell the story, but it is certainly frustrating.   Retrospectively,  2.9 at 60 years old which is how old my husband was at his last test, although not super great, doesn't seem terrible although in hindsight it apparently was.  Maybe just trying to make myself feel better.  I know Catalona is a big proponent of biopsy anything about 2.5, but the Sloan Kettering  materials I saw, would not have called particular attention to anything we were seeing in his tests until this year.

So, Although not surprised by the positive diagnosis, we were surprised by the biopsy.  He was positive in 11 of 12 cores.  That certainly took us back.  His results were:

Two cores of single focus less than 5%

One core of single focus 6%

Two cores of single focus of 8%

One core of single focus of 15%

One core of single focus of 20%

Two cores of discontinuous of 25%

One core of discontinuous of 50%

One core of discontinuous of 55%

No evidience of perineural invasion on any of the cores

10 of the 11 were gleason 3+3 and 1 was gleason 3+4 for an overall gleason of 7

We have requested a second reading by Epstein at Hopkins and are starting to look for second opinions as to what we should pursue and with whom.

I know this is alot of cancer and I know that there is a pretty reasonable chance that if surgery is pursued more will be found and gleason may be upgraded and more aggressive cancer may lurking in the areas not picked up on biopsy.   My hope is that we will find that although the cancer is all around the prostate, it is overall rather sluggish cancer.  Having it so many places is a great concern however.

I know the debate is between going straight to surgery vs going straight to RT as high volume cancer is higher liklihood to have escaped thus quite possibly requiring radiation anyway.

I admire you all, although I would be dishonest if I said that reading these forums doesn't depress and scare the hell out of me as to how many of you seem to keep needing treatment, etc.   But my husband is being positive and primarily concerned with side effects of any treatment!!!  

Feedback generally would be helpful.  We live in Pittsburgh.  UPMC has a big and well respected national cancer center here although I am not sure Urology is its strongest area of excellence.  Was thinking of trying to get a second opinion, even if only via paper, from Cleveland Clinic as geographically that is close and they seem to have a well respected Prostate Cancer Center.  Anyone know any doctors at the Cleveland Clinic?  Any recommendations here in Pittsburgh?

Thanks again, and truly good luck to all of you.  

Posted 6/20/2014 5:41 PM (GMT 0)
Lovif,

I live in Somerset, just east of Pittsburgh and went to see Dr. Joel Nelson at UPMC-Shadyside. I had the surgery about 7-8 months ago and am very pleased with my progress. Dr. Nelson heads the department and has done over 3000 procedures. I went to him in full confidence after two of my friends had open RP with him.

I would highly recommend him. He has the experience and is well known in the field of PCa. I'd stay in Pittsburgh and have your husband meet with Nelson and his team......about 11 years ago, my wife had a Liver Transplant at the Starzl Center. It's hard to find a better team of doctors and research facilities than in Pittsburgh. I've seen lots of miracles happen at the Transplant Center. People from all of the world travel to your home town to seek medical advice.

If you like, you can email me and I'd be more than happy to share my experience.

All the best to you and your husband.........Berk
Posted 6/20/2014 5:43 PM (GMT 0)
Well let me be one of the first to say I am sorry you and your husband had to join our club. None of us wanted to join either.

I was 61 when DX, 10 of 12 core positive, Gleason 3+3=6, but my PSA was 18.5. My PSA had jumped around from 5-9 over the last 12 years. I went through 3 biopsies before being finally DX. After surgery, my Gleason changed to 3+4=7. PCa is a very strange disease, often with no symptoms.

I compliment you, you are doing ALL the right things so far like deciding on treatment options, getting second opinions and second readings.

I don't want to suggest treatment options to you, that is something you and your husband must decide after much research.

Keep doing what you are doing and the decision will present itself to you both.

We are open here 24/7 so join us when you have any questions or if you just want to rant.

My best to you and your husband. He can beat this!

Bill from Florida cool
Posted 6/20/2014 10:14 PM (GMT 0)
I think it's great that you're getting a second opinion on the biopsy. You didn't mention the stage - so I assume it was T1c, which is the most common.

He has lots of options for his intermediate risk cancer (if that's confirmed), and I recommend you hear from each of them. Unfortunately, there's really no such thing as "one stop shopping" for second opinions. It pays to talk to specialists in each area.

Somewhere between UPMC and Cleveland Clinic, I'm sure you can find several qualified surgeons to talk to.
Because there may also be some extracapsular extension, you may want to have a normal MRI to check for that. Surgery is riskier if it is upstaged to T3 based on an MRI.

Because of the GS7 and the volume, LDR brachy (seeds) monotherapy may not be the best option, but they can use it with external beam radiation to boost the dose. Dr. Merrick at Schiffler Cancer Center in Wheeling, WV is one of the best in the country. I would definitely talk to him, since it is fairly close to you.

HDR brachytherapy monotherapy has a great track record for curing intermediate risk PC. If a trip to Michigan isn't out of the question, Alvaro Martinez at 21st Century Oncology is among the best in the country. It has excellent cure rates, very low side effects and the best potency preservation.

I can highly recommend SBRT since it's the treatment I chose. I think UPMC offers it for PC. It has excellent cure rates for intermediate risk (see link in my signature), very low rates of side effects, and great potency preservation. I do not recommend IMRT because SBRT beats it on every dimension, especially convenience.
Posted 6/20/2014 11:25 PM (GMT 0)
lovif,

So sorry you and your husband have to be here! Welcome to our forum. A great deal of people has found that HW is the best forum.

Since I had NO options (my PCa was DX way to late) when DX, and as of today, no cure, I can't suggest any treatment plan for your husband. However, I'm here to support you both and to let you know, you both are in my thoughts and prayers.

Soon, there will be members coming along with some great advice.

Your husband is very lucky to have you and as I say, taking it one day at a time.

Take care and learn all you can about your husbands PC.

Dave in Bartlett, TN
Posted 6/21/2014 12:08 AM (GMT 0)
Hello ......

   Your doing great with all the thought and research. The only thing I can add is just to keep in mind that this disease typically moves slowly. In my case, after the intial treatments (shown below), it appeared to be very stable without increasing PSA's for close to 6-years.

   It was then, that the cancer returned and metastisized. Many times, the cancer does not return and metastisize .... so you do have hope first for that.

   Best wishes to you and your husband.

Rob & Gizmo

 

Posted 6/21/2014 1:13 AM (GMT 0)
Hi Lovif,

Welcome to Healing Well. As you already know, there are a lot of really knowledgeable and supportive people here.

It's good that your husband's Gleason score is where it is, although I think I'd want a second opinion on those biopsy cores too if I were you. In my case, it wasn't the PSA score per se that sent me to the biopsy room. It was a spike in PSA from one year to the next. Glad my doc does them annually as a matter of routine.

I was treated at Cleveland Clinic and can refer you to an excellent urologist. Email me.

You seem very level headed and caring. Your husband is lucky to have you. You'll both get through this, so just hang on. You've got ample cause for optimism. Hang on to it.

Best,
Jonathan
Posted 6/21/2014 4:35 AM (GMT 0)
Lovif, Going through the PC treatment process the past 18 months has been a time of much change in our life. My wife, a cancer survivor also, has certainly been patient and it has allowed us to grow closer. I would advise taking a break every now and then and giving the PC discussion a rest. Things will get better. My father diagnosed 10 years ago at stage 4 is still hanging in there!
Posted 6/21/2014 5:42 AM (GMT 0)
Lovif,

I know you are scared and am sorry you have had to come here, but let's put things in perspective. First, most of us who hang out here do so because we have -- or fear we have-- something more aggressive than most PCa patients. So please don't think what you read here is typical. That said, I had a fairly aggressive PCa a dozen years ago and had surgery. Seven years later I had a rise in PSA that lead to salvage radiation (SRT). I am now 4 years post SRT and remain free of any signs of prostate cancer. I know one day I will die of something, but I still have a fair chance of it being because I was hit by a stray meteor or ambushed by a jealous husband because, at least as of now, my former high-volume T3B PCa is undetectable. So for now, try to accept that this is one more of life's risks, like driving a car, or crossing the street, but probably not the thing that will take your man down.

Jim
Posted 6/21/2014 8:55 AM (GMT 0)
I live in Irwin, PA. My PSA levels and rapid increase were almost identical to your husband's. My biopsy was worse, 12 of 12 cancer with about half at 100%. Gleason was 3+3 (6) and 3+4 (7) with PSA at 6.4.
I scheduled diVinci surgery as soon as possible and had it removed Dec. 20, 2013. Dr. Bisignani from Greensburg performed the surgery at Latrobe hospital, Excela Health.
It's been five months. My first post OP PSA was 0.2, the second test, last month was 0.1
For now, I have no treatment plan, no radiation, no medicines. Dr. Bisignani did a wonderful job and the entire experience was positive.

The only time I have leakage is when I blow my nose. Other than that, I have no incontinence.
I'm very happy with my decision. Things could change in the future but I don't worry about that. I feel completely back to normal.

Don't dispare, this is a treatable type of cancer. I think it may have been harder on my wife than it was for me. At first, I thought about the cancer everyday. For the past several months I forget that I have it, I know she forgets about it too. Age 59.
Posted 6/21/2014 12:39 PM (GMT 0)
When I was diagnosed at age 57, I was, like many, pretty much devastated. From what I knew of surgery as a fix, I wanted nothing to do with it. I know that it works well for some, but I had never met any of them. l did tons of research, and was pretty much going in circles, not to mention going crazy. It was not until I met with Dr. Gregory Merrick that I had any kind of direction. Dr. Merrick is at the Schifler Cancer Center at Wheeling Hospital...not far from where you live. After approximately 30 minutes consulting with him, I knew more about the disease, the potential treatments, and possible side effects than I had learned myself in hundreds of hours of research. He gave me the most objective assessment of my situation and my options. I left there feeling like a huge weight had been lifted. I don't know what type of treatment you are considering, but I'll tell you this. If you consult with Dr. Merrick, you will know more about any of the potential treatments and how they may apply to you. Perhaps you have a professional already who has made you comfortable with your situation, and have no need for this information. I did not. Until Dr. Merrick, I was totally confused and pretty depressed. Maybe this will be helpful.
At any rate, I wish you the very best.
Posted 6/21/2014 1:38 PM (GMT 0)
I echo much of the above comments. I am going to have SBRT next month (Cyberknife) at St Luke's in Houston. I have talked personally with 5 MDs regarding treatment options and several others via phone/email. You will find most physicians very willing to discuss the various treatment options although some maybe a little more biased than others depending on their specialty and expertise, but there is an ethical consideration for them to provide a patient with all of the options. You all have time to consider your options both locally and further away.
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