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Old 06-12-2012, 09:49 PM   #1
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In complete shock

Hello all,

This forum has been a great help for me in the last 4 months since I have become a cancer carrier :-) thanks to all of you.

I went for my 3 months PSA yesterday, expecting zero...I got 2.6!
This is kind of wierd to me since my PSA was 4.0 prior to me prostatectomy, 3.4 in 2009. Either I have a very fast growing tumor, or a big chunk of the gland is still there.

I am so confused....any thoughts?

 
Old 06-13-2012, 08:17 AM   #2
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Re: In complete shock

That did get very high too quickly -- I can see why you're shocked. What did your doctor say? I would take it one step at a time. My first reaction would be to retake the test, maybe along with a % free PSA and a PCA3. Sometimes labs mislabel/screw-up test results (that's happened to me). Did you have a nerve-sparing RP? If so, what were the post-RP pathology results from the perineural area? If it is a true finding, and it was due to some tissue attached to the neurovascular bundles, they can zap that area with some radiation.

- Allen

 
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Old 06-13-2012, 08:58 AM   #3
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Re: In complete shock

Hello Allen,

Thanks for your input and kind words. I am shocked since my pre PR PSA was 4. I did retake the test, and it came a bit higher 2.73. It was a nerve sparing procedure, but my tumor was in a nasty location, the upper right apex. Pathology estimated it to be 5% in volume, mostly Gleason 3 with very few 4, 3 mm longest dimension. No lymph and semen thingies involved. The gland was attached to the bladder floor, the surgeon had to work hard to release it. He told me he burned the whole area. My PR was in mid march this year, with the Da Vinci. I posted all these details, I don't understand why it is not showing.
Have a meeting with the Dr tomorrow.

 
Old 06-13-2012, 11:25 AM   #4
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Re: In complete shock

Hi, I did not follow those first two statements about the fluctuations in the PSA. It sounds like Allen gives you some good information and some strong encouragement. I don't think my nephew joined this blog...as I encouraged him to do. His experience shares some features with yours. He had nerve sparing procedure by one of the alleged top surgeons in the country. He had an elevated PSA in a few months and had radiation for salvage treatment. He recently had a post radiation PSA....zero. He is very happy. I think it may have been conventional external beam radiation. I wondered if the more precise radiation, such as IMRT, was considered, but I don't know if it was. Hope the doctor's visit was helpful....keeping you a cancer survivor.

 
Old 06-13-2012, 05:45 PM   #5
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Re: In complete shock

Thank you so much Dale, and i am so happy for your nephew.
I am meeting the doctor tomorrow morning, and will post afterwards.
So if everything around the prostate was clean, is there any likelyhood that the cancer has pread outside the pelvic area?
Avi

 
Old 06-14-2012, 09:48 AM   #6
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Re: In complete shock

Tumors in the Apex have a very high degree of positive margins after surgery. With a G6 it is improbable that you have systemic cancer, cancer that has escaped into the lymphnodes, as G6s have a hard time living outside the prostate.
It seems like salvage radiation would be the next step to clean up the margins.

 
Old 06-14-2012, 11:12 PM   #7
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Re: In complete shock

Quote:
Originally Posted by Johnt1 View Post
Tumors in the Apex have a very high degree of positive margins after surgery. With a G6 it is improbable that you have systemic cancer, cancer that has escaped into the lymphnodes, as G6s have a hard time living outside the prostate.
It seems like salvage radiation would be the next step to clean up the margins.

 
Old 06-14-2012, 11:31 PM   #8
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Re: In complete shock

Thank you John...
I saw my doctor today. He can't understand teh high PSA value either. Post biopsy, the gland size was estimated to be 22cc. The gland that went to pathology was 19CC. He said that he kept burning and shaving what ever tissue was left behind....He doesn't think there was a significant volume left. According to the pathology, there were very few cells in the edge, gleason 4. Most of the tumor was gleason 3. It was hard to pull the gland out. It stuck to the bladder neck. Surgery lasted for more than 5 hours.
Seminal vehicles and lymph nodes were clean.

Going for pelvic CT and bone scan on monday. Then radiation. Discussed the possibility to start hormone therapy to reduce the prostate volume, my doctor advised against it since we will not have the PSA metric to rely on.
Any recommendations regarding type of radiation?
Going for a second opinion in UCSF.

Here are my stats:
Pre biopsy PSA: 4
Biopsy:2/12 positive, Gleason 3+4
Estimated volume:20%
Right apex only infected

Post surgery:
Mostly Gleason 3, few Gleason 4 in the edge, right apex
All other specimens clean of cancer
Stage T2a, positive margins
3 months post surgery PSA: 2.56. two days later 2.73. Will repeat on Monday.

 
Old 06-15-2012, 10:10 AM   #9
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Re: In complete shock

It seems like some tissue grew into the prostate bed, unfortunately. The bone scan is not likely to pick up anything at this point, but there are other kinds of imaging that may be able to locate the problem in the local area. Some have used a combined MRI-Spect and MRI-DCE. Others use ProstaScint. A C-11 Choline PET/CT may be particularly valuable but very few places do it -- UCSF might -- you can call and ask.

For your salvage radiation treatment, my leaning would be towards CyberKnife (or similar SBRT) radiation for several reasons. First, it has much better cancer cell kill rates than IMRT. The 5-day intense treatment time isn't only a convenience advantage over the much longer IMRT schedule, it does the job better. Because the radiation is so focused, little is wasted on surrounding organs where IMRT might otherwise cause urinary and rectal problems. While IMRT is improved in effectiveness by a short course of hormone therapy, CyberKnife has been shown to work equally well without it.

They place the gold fiducials in the prostate fossa and can precisely target the entire prostate bed to any desired depth. For salvage, they will typically go at least 8mm deep but less than that on the rectal side. If they find anything with the PET scan or multiparametric MRI, they can additionally target that area for a higher dose. If the cancer is near the bladder neck, it is particularly important to very precisely target just the cancer with SBRT, as I would worry that IMRT there might cause incontinence.

Radiation salvage is an active area of investigation. I know Dr. Gottschalk at UCSF has been involved in some studies on new radiation salvage techniques, including HDR brachy as salvage, and also has CyberKnife experience. Dr. Fuller in San Diego also has a clinical trial going now.

- Allen

 
Old 06-18-2012, 08:39 PM   #10
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Re: In complete shock

ard,
Consider Proton Therapy. I had Proton salvage at Loma Linda and highly recommend that you investigate it. I think that I'm in the clear without side effects from my Proton treatment.
Bob

 
Old 06-19-2012, 02:26 PM   #11
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Re: In complete shock

Hi ard,

I'm sorry you are going through this rough and confusing experience after paying your dues, so to speak, with the RP for what looked like a fairly low-risk case. I have read the responses to date through Bob's latest about proton therapy.

I'm confused about a couple of things. You mentioned using hormonal therapy to reduce the prostate volume, but the prostate is no longer there, right? I'm puzzled why the doctor would not have pointed that out to you rather than responding about not being able to use PSA as a metric. Also, by this time, PSA is an excellent metric as you and the doctor already know only too well. Something is not adding up here.

Also, whether the prostate was 19 cc or 22 cc, it was on the small/normal side already and would not have needed reduction, as I understand this as a layman, either for surgery or for salvage radiation.

Another point is the pathological staging as stage 2a. To me, that means the cancer is contained in the capsule, without positive margins. I would think stage 3 would be a more accurate description, indicating some spread beyond the capsule.

I'm also puzzled why the operation would require five hours - a lot of added time, even if complicated, though I'm not that familiar with surgery and may be missing something here.

Could you have misunderstood the surgeon on some of these points? Does he seem to you to be on top of your case? Do you know how many RPs your surgeon has done? Is he considered expert? Does he have many prostate cancer patients, or is he more of a general urologist? It could be that the operation was well done but that you and he are not communicating well.

UCSF has an outstanding reputation for prostate cancer as an institution; imagery is a special strength. As Allen suggested, neither the CT nor the bone scan, which you expected to have had yesterday, are that sensitive, as it takes a fairly sizeable tumor to show up on the CT scan, and about 10% of bone involvement at a site is required before a conventional bone scan will pick up prostate cancer. The bottom line is that there are better scans, as I understand it, for your purposes, and I'm confident UCSF will be able to guide you in this area. Allen mentioned some of these scans. Here are a couple more, both of which I have had recently. For bone, the Na F18 PET/CT bone scan is quite reliable and much more sensitive than the conventional bone scan. For nodes, the Feraheme Ultrasmall Superparamagnetic Iron Oxide (USPIO) scan is looking highly effective but availability is quite limited at present. As you may know already, the surgeon typically samples only a few readily accessible nodes at the time of surgery. In fact, in modern practice, that is often not done.

I'm thinking that second opinion at UCSF will be of great value to you.

Good luck with this.

Take care,

Jim

 
Old 06-19-2012, 09:57 PM   #12
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Re: In complete shock

Dear all,

I am so moved by the care and sympathy you are showing. It makes this experience a lot easier. Thanks so much for your kind advice.

The CT and bone scans came back okay.
I re-read the post surgery pathology report. The sergeon took a sample of the bladder floor that came back negative for cancer. This is so confusing.

Last PSA test, on Monday: 2.1. Free PSA: 0.17. What a rollercoaster. Is this normal for the PSA to fluctuate this much?

Scheduled a meeting with Dr Mark Rounsaville, pacific medical center is san francisco. I am still waiting to hear back from UCSF. They take their time.

The doctor that operated on me has mny years working with prostate cancer. There may be som miscommunication due to my mental state. I am simply terrified .
The surgery took many hours because the prostate was stuck and he had problems releasing it. Said it gave him a fight.
The pathologist found very few cancer cells in the margins. he estimated the cancer to be 1.5% of the gland. This is what really puzzles me. Looks like the cancer jumped out very quickly.

How safe it is to wait with the radiation therapy? looks like I will need a couple of weeks to meet all these experts.

How would they know where to radiate, If they have no idea where the cancer is (assuming it is actually cancer and not some benign tissue left behind).

This is so confusing...

I heard about the proton therapy. I'll make my decision after talking with at least 2-3- experts.

At least my anxiety level is down. I guess I am getting used to my new status, after being so sure the cancer thing is behind me.
The one positive thing out of this nightmare is to find how kind and helpful and caring people are. I am so moved...

Will update again on Thurday after my doctor appointment.

 
Old 06-20-2012, 01:00 AM   #13
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Re: In complete shock

ard,
I read an article concerning a study done by Dr. Kevin Slawin concerning salvage radiotherapy for recurrent prostate cancer. This study suggests to me that it would be very helpful to you if you read it as soon as possible.
Bob

 
Old 06-20-2012, 07:44 AM   #14
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Re: In complete shock

While it seems that it is better to have the radiation sooner rather than later, you certainly have time to meet with a few doctors before making an informed decision. Here's a reference:
http://www.ncbi.nlm.nih.gov/pubmed/22036777

Quote:
How would they know where to radiate, If they have no idea where the cancer is (assuming it is actually cancer and not some benign tissue left behind).
As I wrote in my Post #9 to you, with external beam radiation, they treat the entire prostate bed up to a depth of almost a cm. With extracapsular extension, the prostate bed is where the cancer goes. They checked you lymph nodes during surgery, so you are safe there. It is extremely unlikely that it has metastasized out of the local area where radiation can't reach it. UCSF has also tried brachy salvage, which may be particularly useful in your case, since they pretty well know where the the cancer cells were in contact with the prostate bed, and they can concentrate the doses in those places. UCSF also has very good imaging capabilities. I agree with Jim that you are in very good hands with UCSF.

- Allen

 
Old 06-21-2012, 07:21 PM   #15
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Re: In complete shock

Dear all.
Met with Dr. Mark Rounsaville, pacific medical center is san francisco. What an exceptional person! Said that my case was bad luck or bad surgery or a combination of both.
He recommended 2 year hormone therapy combined with 3D radiation. He advised against the Proton radiation, since I will need to follow the research procedures and won't be able to make my own decision. For my case, he recommended the conventional 3D radiation therapy. He believes that cure is highly possible.
Tomorrow and Monday is UCSF. I would really like to start my treatment by the first week of July. Hope I'll be able to make it...I want the desease out me, asap. :-)
The one positive experience in all of this is to find so many kind and caring and wonderful people.

 
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