HealingWell
Search Close Search
☰

possible lymph node involvement - nothing left to do

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/16/2008 12:50 AM (GMT 0)
went to the urologist today.  got the results of the 6 core prostate biopsy.  negative.  should be good news but the latest psa was 16.37 - up 4 points from a month ago.  dr. says "most likely" in the lymph nodes.  will not do a lymph node dissection.  reason:  won't matter.  the only treatment would be the eligard already being used.  so all is left is to sit and wait and sit and wait and sit and wait.  and take another shot every 6 months.

not too happy with this "treatment plan".  i would prefer to KNOW if it's in the lymph nodes and if there is something that could be done.  can't an ultrasound detect if there is lymph node involvement?  yes, the whole area was radiated but for goodness sake there must be an option.  there are absolutely no symptoms and the thought of just sitting until the big C decides to rear its ugly head somewhere else is unimaginable and intolerable.

help.

Posted 12/16/2008 1:05 AM (GMT 0)
You need to march yourself into a reputable prostate cancer oncologists office. This doctor had signals months ago that you needed to restart the Lupron sooner. I see you had PBRT at Loma Linda...Are you in California?

Tony
Posted 12/16/2008 1:10 AM (GMT 0)
I would imagine if I were in your shoes I would want to know where it is located if possible. Perhaps it would not make any difference to treatment but the "it's in there somewhere" would make me feel a little uneasy. Perhaps a prostascint scan (the one fused with a MRI) may show where it is located. There's a bit of information here:
www.prostate-cancer.org/education/staging/Kipper_ProstaScintUpdate.html
Bill
Posted 12/16/2008 1:18 AM (GMT 0)
If you are looking for advice I would get this thought clearly out of my head:
" so all is left is to sit and wait and sit and wait and sit and wait."

You should as was suggested above immediately find a reputable Oncologist that specializes in PCa.
You should start Lupron, Casodex and perhaps Avodart ASAP (of course after consulting your doctor).
You might want to consider 28 day Lupron as recommended by docotr like Dr. Strum.
Posted 12/16/2008 1:31 AM (GMT 0)

thank you tony, bill and david.  i am interested in where the prostascint scan is done.  we traveled to loma linda for the proton therapy and we will travel again if necessary.  no tony, we're not in california.  hope medicare and my supplemental would cover it.  sitting and waiting is not an acceptable option.  you can see by the psa rise that there is something explosive going on.  at least the eligard is started.  that shot was about 2 - 3 weeks ago.  side effects are starting to kick in.

i read the article you linked, bill.  where is it done?

thanks

Posted 12/16/2008 1:35 AM (GMT 0)
My doctor told me I had 36 months left so I fired him. Do not accept the word of one doctor. I think yours is a bafoon. We choose to take an active role in our treatment or to sit on the sidelines and let others make the call.
Posted 12/16/2008 1:44 AM (GMT 0)
There is an MRI procedure done with iron oxide particles that is done in Holland that will identify lymph node involvement. If you have already had radiation I don't think they can radiate the lymph nodes again.
I agree with Tony and the others; see a prostate oncoligist immediately.
The prostate cancer research institute website has a list of qualified prostate oncologists and there are several in the LA area.
JohnT
Posted 12/16/2008 1:46 AM (GMT 0)
Dear GlassGuy, We have had the best doctors that you can think of in the US , and we are still finding our own way. I heartily suggest, MIGHTEDLY, I may add. that you read "ANTI CANCER" By Dr. Servan schreiber....Pete and I just finished it, and I wrote today a post about it. You can definitely keep the cancer at bay. There is so much HOPE in what you can do. Like David E said:" Do not sit and wait". You must be like War Eagle and Living1963. They are so very strong... like most of the guys and their wives on this post. Tony says it for us all the time: ."..Forge ahead and fight this thing." Drink Pomegranite, and eat lots of Broccoli and Blueberries. We can overcome.... and keep posting and coming back. It is strengthening....Diane
Posted 12/16/2008 1:51 AM (GMT 0)
Glass Guy,
I am located in Australia so I can't help with location. A quick web check turned up a couple who do both MRI and prostascint scans but I can't see if they fuse the two images to obtain the more accurate imaging.
www.prostascintimaging.com/
www.lexingtondiagnostic.com/index.html
By the way, why the name Glass Guy?
Bill

(Edit) Can't read very well can I? This is contained in the first site.
www.prostascintimaging.com/hcp/pie-sites/
Posted 12/16/2008 3:19 AM (GMT 0)

ok, i've spent the last hour reading on prostascint and as it happens i am having retinal surgery tomorrow at a hospital (about 85 miles from here) that does the procedure.  good time to check out the place.  how do i get a referral or find a doctor???  i know for certain that my current urologist would not give me a referral.  he already suggested i go someplace else when i questioned him about doing a biopsy.  that's the bad thing about being new to an area - you don't know who to go to.

has any of you had the prostascint? 

(oh, glass guy because my hobby is stained glass)

Posted 12/16/2008 4:00 AM (GMT 0)
Hey Glass I hope you take Tony's advice and get yourself a doctor that loves and cares for YOU. There are plenty of options on the table and plenty of us guys who have successfully walked in your shoes. This not the end of the story my friend just a new chapter.
Please continue to share with us as to how your journey unfolds. Always feel free to ask anything or even email us privately if need be.

peace and love
Dale
Posted 12/16/2008 4:26 AM (GMT 0)
Well fancy that Glass Guy. I have been operating a stained glass/leadlight business for the last 22 years. I initially got into it as a hobby. Very quiet at the moment though as housing style fashion has turned ultra modern here.
Bill
Posted 12/16/2008 5:34 AM (GMT 0)
Glass Guy,
Where do you live? You may have a known oncologist near you.

Tony
Posted 12/16/2008 1:29 PM (GMT 0)

hi tony.  we're in tennessee.  i am sending a fax with the biopsy results to loma linda this morning and telling them we are willing to come back to california if they can help.  i also sent a self referral to vanderbilt university in nashville since i saw their name on the prostascint site.  i cannot in my wildest dreams imagine being told to sit and wait and then just sitting and waiting. 

maybe today in the light of day we will be able to locate someone.  we're rural and there is not too much around us.

Posted 12/16/2008 2:29 PM (GMT 0)
Glass Guy-

If it's feasible, I highly recommend Dr. John Araujo MD, PhD in the Genitourinary Clinic at M.D. Anderson Cancer Center in Houston. When I gave up on my local oncologist, I contacted MDA and asked them to recommend one of their doctors to me. As it turns out, one of our other posters here swears by him and the two of us have convinced a third to see him. His appointment is this Thursday.

M.D.Anderson has been rated the #1 cancer hospital in the U.S. for (I think) 7 years in a row by U.S. News and World Report.

Good luck.

-Les
Posted 12/16/2008 4:42 PM (GMT 0)

Glass,

I concur with Gordy,

if you are willing to travel, MD Anderson is much closer and Grade A.  Right now you need what they offer.  Loma Linda is a specialist in one treatement type.  MD Anderson is a specialist in everything cancer.

I wish you the very best!

Tony

Posted 12/16/2008 11:23 PM (GMT 0)
MD Anderson. I've been there and continue to go there every 6 months. I have some lymph node involvement but the Lupron and Casodex have knocked my PSA down to a .3   Earlier this year it was 344.  Expect to outlive this disease.

Posted 12/16/2008 11:26 PM (GMT 0)
Aspen4-

You're the poster to whom I referred.

-Les
Posted 12/16/2008 11:50 PM (GMT 0)
Glass guy,
In addition to combidex, which is a lymph node imaging agent only performed in Holland , there is a new agent, trophex, that should be available in the US with in two weeks. I'm now trying to find out where it is performed and as soon as I get the info I'll passs it on to you. You may want to have your doctor track it down. If they suspect lymph node involvement I would think you would want to have a test that specializes in that rather than prosta-stint.
JohnT
Posted 12/17/2008 3:08 AM (GMT 0)

i even know about md anderson.  just didn't think about it last night.  and it would be closer than california.  meantime i set up an appt with a urology-oncologist at vanderbilt university cancer center.  wish i'd have remembered md anderson before i set up the appt.  does anyone know anything about vanderbilt?

even the screener who took my call at vanderbilt sounded incredulous about my urologist's reaction.

Posted 12/17/2008 6:27 AM (GMT 0)
It's OK Glass,
You have time to decide where to go. But you need to get passed the decision and get to that big center. MD Anderson, MSK, Johns Hopkins, Mayo, anyone of them is a great place to start and then transfer to Vandy for pallitive care. Vandy is very reputable, but I would start in Houston if I lived where you do. Again, Loma Linda is a great PBRT facility. But they have a ways to go when you start talking about elite facilities for cancer oncology. (I know I just made a couple friends mad). You are at least on Eligard and that is a good step.

BTW. Why did your urologist switch from Lupron to Eligard when Lupron was effective when tried? I know they are both LHRH agonists, but I find that interesting. Also I don't see Casodex mentioned and as FLHW suggests Proscar. The last one is debatable, but Casodex is effective at reducing the DHT in your body.

Hang in there. There are many things you can do. I am not sure what you urologist was thinking, but he was well against the mainstream if he suggested that what he did was all that could be done. And your signature alone raises questions that are surprising to me. Why he didn't suggest monthly monitoring at .7 is silly to me. And your PSA was climbing rapidly and a bone scan and CT scan was all he did?

Tony
Posted 12/18/2008 4:13 PM (GMT 0)
Dx: ***hole MD. Tx: New MD, STAT
Posted 12/19/2008 5:50 PM (GMT 0)

Glass Guy,

"Beating Prostate Cancer: Hormonal Therapy and Diet" by Dr Charles Snuffy Myers has an excellent section on lymph node detection and treatment. You can get it on Amazon or through Reva Health. You have an excellent chance of cure or at the least control for a number of years if treated correctly. Don't get discouraged.

JohnT

Posted 12/19/2008 6:59 PM (GMT 0)

Glass Guy,

   This article came out on Dec. 15, 2008.  It caught my attention because of a neighbor who has had much the same experience as you have had.  A 6 core only sample is pretty unusal to hear about.  Even a 12 core sample is like finding a needle in a hay stack.  'Prostate Cancer Discovered In 40% of Men Who Test Negative For The Disease' is the article title and it may be worth persuing. Hope this helps.

http://www.cnbc.com/id/28241818/site/14081545

Jerry

Posted 12/21/2008 1:33 AM (GMT 0)

Gordy

I wish you and all men on this site the very best. How would you rate your experience at MD Anderson. Just curious if your experience of the place agrees with mine.

Be Well

✚ New Topic ✚ Reply
12