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Posted 12/19/2012 3:56 AM (GMT 0)

This is my first post so might be lacking required info.

Was recently diagnosed with PCa.  Have a low Gleason score but a very high PSA.

Therein lies the conundrum.  Where is the cancer?  Was told by phone consultation by a top rated radiation oncologist that before he would do treatment he would require me to go to Sand Lake Imaging in Orlando, Florida for a lymph node test.  They do not accept insurance and the cost is $1,600.  I live in Iowa so it is a long trip.  Would like to hear from anyone that has had lymph node imaging anywhere.  The Doctor said that my high PSA could not be caused by transition zone cancer.  Said it would cause urinary flow problems of which I have none. Had a CT scan and a Bone Scan which didn't show anything.  But it was pointed out that I could have microscopic cancer that just doesn't show.

Posted 12/19/2012 12:57 PM (GMT 0)
What is your PSA and Gleason Score?

I know that M.D Anderson in Houston is capable of imaging for lymph node involvement and doing the biopsy, if the positive node is not in a area that is too dangerous to get to.
Posted 12/19/2012 1:27 PM (GMT 0)
I'm a daily lurker here but could't resist replying to your post.

I would highly recommend going to Sand Lake. My father was diagnosed last year with a G9 that was stage IV according to his uro. He started hormonal therapy and within six months his PSA dropped from over 100 to a nadir of .58. After six months his PSA started to climb despite the lupron.

I got him out to see Dr.Myers and ultimately he went to Sand Lake for the feraheme imaging. Three clusters of lymph nodes were identified and Dattoli and Myers felt that he was "curable" since the cancer was oligometastatic. Following that he spent the better part of the summer with Dr.Dattoli in Sarasota getting radiation followed by brachy. He is now doing very well and has a PSA of .171 that continues to drop. I can't say enough good things about Dattoli and his team in Sarasota. Absolutely a top notch operation. The same goes for Dr.Myers. Good luck to you.
Posted 12/19/2012 7:21 PM (GMT 0)
Learning Quickly:

My Dad is a G9 with a rising PSA right after surgery. There was a disconnect between where his cancer was (lymph nodes or bones) since the CT was clear and the bone scan at first was inconclusive.

His oncologist and urologist agreed that regardless of where the cancer was (bones or lymph nodes) even though they couldn't see it on the scans (like yours) they knew it was micro-mets somewhere because of the rising PSA. They indicated regardless of where it was Lupron was the best treatment for him. The Lupron lasted 18 months and now bone scan and CT scans are showing the cancer solidified (they said it's not "worse" it's just showing up more clearly now).

I'm interested in why they would want to radiate if they think you have micro mets? We've been told radiating won't help micro mets, it only helps if the PCa is confied to the prostate/prostate bed. Any talk of skipping radiation and going right to Lupron?
Posted 12/19/2012 7:50 PM (GMT 0)
Concerned:  There are a group of Doctors who are sending their patients for a Feraheme scan which picks up small lymph node cancer that other scans can't see.  They believe if there are 5 or fewer spots that come back positive, they have a fairly decent chance of putting the cancer into a long term remission or even causing a cure by radiating those areas.

The term used is oligometastatic disease.  Drs. Myers, Dattoli and Bravo have published a paper on it, just google oligometastatic and one of the Drs. names and you can read the article.

I just returned fron Dr. Dattoli's after having the radiation done to 3 areas that came back positive.  They also add some pretty intensive HT for a year to help kill off any rogue cancer cells that are floating around.

There were quite a few guys down at Dattoli's when I was there that were having the same treatment done. 

Good Luck

David

Posted 12/19/2012 10:57 PM (GMT 0)
Learning:  The $1600 is for the Feraheme injection, the MRI was covered by my insurance but of course they wouldn't spring for the Feraheme injection because it was considered off label.  While I was at Sand Lake they did an F-18 Pet bone scan also that my insurance covered.  With travel and everything it is expensive but I believe it was worth the cost.  Just my opinion!!!!!!

Good luck

David

Posted 12/20/2012 1:17 AM (GMT 0)

MsWorryWart,

My PSA is 164   Gleason 3 + 3 in 5% of 1 core out of 13

Read and heard good things about MDAnderson.  I had by tests and biopsy

done at Mayo in Rochester, MN.  You would think that they should be able

to do the imaging of lymph nodes and biopsy. 

Thanks for your input,

Phil

Posted 12/20/2012 1:29 AM (GMT 0)

rjp6902,

This is what I wanted to hear about. The reason I contacted Dr Datolli was because I had read so many good things about his treatment.  But I had read nothing about

Sand Lake.  But I have only been researching for 3 months since my diagnosis so probably missed already earlier posts on Sand Lake. 

Thanks

Posted 12/20/2012 1:42 AM (GMT 0)
Concerned4You,

I will be seeing an oncologist for the first time in early January.  Will present these questions to him then. 

Do not know if they will want to radiate yet.  Not sure, but think they can radiate the nearby lymph nodes when they radiate the prostate?

Probably will have to take lupron or firmagon or casodex first.

Thanks

Posted 12/20/2012 2:13 AM (GMT 0)
This is similar to me and I happy to say 3 more IMRT but had them done locally . Started MDA  PSA 33 one postive node. Gleason 7. Mda said we do not need Biospy because localation of node PSA points to Node CA. Plan was add casodex to lupron the six month and wack as many cell with meds. Need a PSA of 0.05 and smaller node. Then we do IMRT. Sounded pretty simple to me.

Six months later PSA 0.06. Node reduced I/2 size So we got diff. PCa with positive. node. Time for IMRT and can now stop casodex. Makes sense to me and I like thing that make sense.

Posted 12/20/2012 2:52 AM (GMT 0)
Learning Quickly,

I have seen a lot of stats in my 3 years of dealing with this disease, but I have never seen a Gleason 6, 1 core positive, and a high PSA. How old are you? Have you had annual, regular PSAs? Have you had a DRE?

I must be missing something here, but why do we think there is lymph node involvement? What makes your doctor not think that the high PSA is from cancer contained within the prostate?

Jerry L.
Posted 12/20/2012 3:47 AM (GMT 0)

Jerry L.,

How do you post all your statistics at the bottom of your post?  I have a fairly long list, although not nearly as long as most.  Recognize that it would be helpful to the person reading my post.

But for now here it is:

All done at Mayo, Rochester, MN

DRE did not indicate any abnormality

Age 72

PSA 164

Biopsy showed Adenocarcinoma of the prostate, Gleason 3 + 3 in less than 5% of the specimen on the left. Other 12 cores were benign.

CT scan of pelvis and abdomen revealed no abnormalities.

Bone scan negative for malignancy

Cystoscopy reveals no tumors or bladder lesions

Uroflow was normal with some residual

Had a phone consultation with Dr Michael Datolli who told me he would NOT do treatment until I went to Sand Lake in Orlando, FL for a lymph node test.  Why he recommends that I am not sure of. But he shot down my idea of seeds and IGRT as a treatment unless I had the test at Sand Lake. He said my high PSA could NOT be caused by TRANSITION ZONE cancer without causing urine flow problems of which I have none.  Dr Patrick Walsh's book "Guide To Surviving Prostate Cancer" says in one of his pages that transition zone cancer is an unusual form of prostate cancer that causes high PSA numbers through the roof as high as 300. It is hard to diagnose because it is smack in the middle of the prostate and cannot be felt during a rectal exam. It is never found by the regular biopsy.  But I read that a Color Doppler or endo rectal coil MRI can detect it.  So I am going to have the endorectal coil MRI done in early January.  Will also meet for the first time with a radiation oncologist on his viewpoint on what I should do.

Like you I am missing something also as the high PSA and low Gleason don't jive.

Posted 12/20/2012 4:06 PM (GMT 0)
Learning Quickly:

To add a signature:

- make sure you are logged into HW

- Click on "My Profile"   (It's under where it says "Donate" and to the right of "Log Off")

- Click on "Edit Profile"

- Update to the right of "Signature"

- Click "Submit"

Posted 12/20/2012 4:12 PM (GMT 0)
Learning Quickly:

Have you had regular PSA tests leading up to 164?  What dates and what were the results?

I would imagine that at age 72, the % of guys that have some level of prostate cancer is very high.  As the saying goes, if a guy lives long enough, he will get some level of prostate cancer.  I would think everything about your stats is normal, except your higher PSA.  Very interesting...

Posted 12/20/2012 5:59 PM (GMT 0)

Jerry L.

Had a couple of PSA tests years ago that were added to my blood tests.

Although they were higher than normal I was stupid and didn't pay any

attention or give it any study.  Always felt good and have always been

active and physically fit.

I wouldn't have had these tests unless I had gone to my regular doctor

about having a hernia repaired.  The doctor said it was much more important

that I do something about my high PSA.  So I thought I would go up to Mayo

and have both taken care of at once.  Didn't know a thing about prostate cancer

when I went up there.  But when the urologist gave me the treatment choices after

I had all the tests I was overwhelmed and couldn't choose what to do.  So she said

I could go on active surveillance and come back in 3 months for another PSA and

DRE and talk to a radiation oncologist. When I got back home I started reading books on prostate cancer and got on this forum and another one from YANA.  When I go back to Mayo in January I will be in a much better position to decide what to do. 

Thanks for telling me how to add a signature..will try it now.

Phil

Posted 12/20/2012 6:43 PM (GMT 0)
Phil,
There are only a few causes for high psa that don't correspond to tumor volume:
1. Transition zone tumor
2. Lymphnode matastitis
3. Infection.
You can eliminate the causes one by one:
Infection, by taking Cipro and seeing if the psa goes down.
MRIs to image a transition zone tumor; be sure it is a Telsa 3.
Lymphnode imaging like Sandlake or C11 PET scans.

If your MRI does not confirm a large contained TZ tumor and Cipro does not reduce your psa then you have to proceed as if you have lymphnode matastisis and the Sandlake imaging would be a reasonable next step. Yours is an unusual case and would be well served by seeing a Doctor like Myers or Scholz who are familiar with "out of the box" cases like this. It may cost more out of pocket, but you have to play the cards that are delt you.
Posted 12/21/2012 12:21 AM (GMT 0)

Hi again John T,

Took your advice and posted here.  Good advice!

Regarding your post I have a question:  Did your 2.5 cm transition zone tumor cause

your high PSA of 40?  If so, is it possible if they locate mine that it could cause my high PSA of 164?  You say that the volume of a transition zone tumor doesn't correspond with a high PSA, right? Does that mean I wouldn't need a very big tumor to cause the high PSA?  Or am I mininterpreting you?  Could lymph node

matastasis cause such a high PSA as mine?

Do you agree with what Dr Datolli said to me that a transition zone tumor could NOT be the cause of my high PSA??  He said if it were that I would be having urinary flow problems which I am not. 

How could I have infection if my white blood count wasn't elevated? 

If I have a failed treatment at Mayo I would then be eligible for the C11 PET scans.

So after the endorectal coil MRI I will be consulting with a radiation oncologist and see what he thinks I should do.  Should I also ask for a medical oncologist to consult with (like you did with Dr Sholtz) and he then could handle my treatment?

Thanks,

Phil

Posted 12/21/2012 5:41 PM (GMT 0)
Phil,
Unfortunately there is not a lot known about transition zone tumors as you already have found out. They do cause a much higher psa than other tumors, but I don't think anyone knows how much. Walsh says he has seen up to 300 and still contained.
With a psa of 164, I don't think anyone knows for sure. A PAP test and a PCA3 test would be helpful in the information gathering and would be a part of putting together a total picture. My PCA3 was low, 41, and my PAP was normal, which pointed to a contained tumor. I also had the Combidex which came up clear so I was fairly confident I was dealing with a contained TZ tumor. I would recommend a good MD (medical detective) like Scholz or Myers who can put all the pieces together. They would most likely not do the treatment, but make recommendations as to the best treatment to persue.
Did your biopsy reflect a TZ tumor?
Mine was contained, as was reflected in my treatment results. My guess is that you have a much larger tumor than a 1 core 5% indicates. TZ tumors are very hard to biopsy and my guess is that the biopsy just hit the very edge of it. Hopefully the MRIS will give you more info. Another option would be to see Fred Lee in Rochester Min for a color doppler ultrasound. Dr Lee and Dr Bahn in Ventura Ca are probably the only two doctors around that can effectively biopsy a TZ tumor transrectally.I recall one poster here a few years ago with a similar issue, but negative biopsy. He went to Dr Lee who found a cronic infection in the TZ that caused the high psa.
The one thing that is clear is that your psa does not match your biopsy results and you must find the reason for this before any treatment.
Posted 12/21/2012 8:13 PM (GMT 0)

John,

What is a Telsa 3?  As in Telsa 3 endorectal coil MRI?  Do I need to contact Mayo and ask if I am getting Telsa 3 or just rely on their expertise in choice?

Will wait and see the outcome of the above and what the radiation oncologist has to say about what to do. 

One would hope that Mayo could handle this and that I won't have to travel to California to see Scholz or Virginia to see Myers or Michigan to see Fred Lee.  We shall see. But I value your expertise and advice and will keep them as options.

My biopsy didn't say the cancer was in the TZ. Just that it was in one of the specimen on the left.

You didn't respond to my question on lymph node cancer being able to produce such a high PSA? 

If Dr Fred Lee found a chronic infection in the TZ wouldn't that cause an elevated white blood cell count?

Posted 12/21/2012 9:21 PM (GMT 0)
Learning Quickly,
John T has provided you with outstanding advice..His input has been highly valued in this forum and at least 1 other that I reviewed..You are located in Iowa near Mayo in Rochester, Mn and will have whatever treatment is agreed upon there I assume..Due to the time, distance, and money involved I recommend that you assemble your "combat" team at one of the most highly rated medical institutions in the world..As an example, have Fred Lee present when you meet with your oncologist in January and ask them to put a plan together for you and contact you when that is done..For difficult cases like yours I know that a panel of doctors may need to be convened to provide you with the plan..If the imaging (if needed) cannot be provided by Mayo have the recommendation be put in writing for insurance purposes... Hopefully, your case is not rocket science.--Good luck.
Jerry L--Thanks for the "signature" information--Yes, I'll use it later.
Deros---Don't forget to "drink the water" and direct some vets to this forum--Merry Xmas.
Bill--Age 7---A "seasoned" vet
Dx'd Sept 2010--psa 4.89--5 G8's and 4 G7's out of 10 cores..epe and high volume..IMRT completed in Feb 2011 w/6 months casodex and 3 years lupron--1 year to go..After rads--psa .06 and now<.03
Posted 12/21/2012 10:29 PM (GMT 0)
Phil,
Lymphnode involvement can certaintly cause high psa. With someone who has a high psa this is the first place one would look, especially with a higher gleason grade. Lymphnode involvement would be very rare with a G6, so this is why your case is so confusing.
A Telsa 3 MRI is a higher power MRI. Most MRIs are T1.5 and are not very good at looking at the interior of a prostate. I had a T1.5 endo rectal MRIS at UCSF and it showed nothing. A year later I had a T3 without a coil and it confirmed a 2.5cm tumor that the color doppler had identified. I asked why the T1.5 didn't show anything and was told by the best prostate MRI researcher in the world that the 1.5 could only see the surface of the prostate and was poor in identifying anterior or TZ tumors. I would find out what Mayo is using before wasting your time. If possible there is a newer MRI, a multiparametric MRI that fuses the images of an ultrasound with an MRI and is supposed to give much clearer pictures of the prostate. I know UCLA is using this, I don't know if Mayo has it yet.
Posted 12/22/2012 3:54 AM (GMT 0)

Gunfighter,

Not sure what you mean. You recommend I assemble a "combat" team at Mayo with Dr Fred Lee present when I meet with my radiation oncologist for the first time?  How could I possibly get Fred Lee to come to Mayo just for this?  I would like to add a medical oncologist from Mayo to my team, but have not requested that yet...will do that when I have my first meeting.

They have the endorectal coil MRI scheduled for 10am. Then at 2pm I meet with the radiation oncologist.  Don't see how they can have the results of the MRI by the time I meet him. 

Posted 12/22/2012 2:43 PM (GMT 0)
Learning:  Just for your info.  Dr. Dattoli has a Color Doppler at his place, you have received excellent advice from John T. and others, I would put his experience and education at the top of the list of posters here.  The only issue I would take is that it sounds like a lot of fingers may get in the pie.  

Sand Lake would give you the answers you need but it can be expensive.

Good luck

David 

 

Posted 12/22/2012 5:18 PM (GMT 0)

David,

I know Dr Datolli has a color doppler at his place along with other high tech equipment.  I considered going there and had a phone consultation with him.  He told me before he would do treatment I would need to have the lymph node test at Sandlake in Orlando.  So my first post is about lymph node testing in general and whether anybody had it done at Sandlake along with their opinions.

Certainly agree with your views on JohnT. His posts have helped me tremendously. 

As for a lot of fingers in the pie the problem I have with that is that at my age it is harder to travel to multiple places rather than just having the whole treatment at one place.  Have no wife to help and what happens if I get sick while so far away from home? 

What treatment did you have and who did it?

Thanks,

Phil

Posted 12/22/2012 5:54 PM (GMT 0)
Phil,

some useful information on MRIs that may help.

http://zerocancer.org/education/testing/MRI/

 

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