Advance PC Diagnosis Advice Needed

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baerbaer
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/21/2008 5:57 AM (GMT -7)   
Hi all
 
I am new here. I'll try and shorten this as much as possible. My Father in law was diagnosed several months ago with prostate cancer. At the time they said a lymph node was involved, but they gave him an experimental "shot" treatment that he was to have every 6 months. I don't know the name of it. They said he wouldn't need any more treatment than that. it didn't seem right to me at the time, but he seemed positive about it.
He went back to the urologist and his numbers were great, way down..so that was evidence the treatment was working.
about 5-6 weeks ago he began itching inside..it kept him up all night and wouldn't subside. It went on and the doctors couldn't find out WHAT it was...they were stumped. Finally decided that he was alergic to the treatment, and would have to wait for the shot to wear of. SO he went home to suffer it out and was getting weaker by the day.
They decided it was best since the treatment supposedly wouldn't be able to be used, to remove the testicles. An appointment was made for the surgery but the night before, his legs swelled up. The surgery was put off until they could figure out why that had occured. only then did they give him an MRI..which showed his gut FULL of advanced lymph cancer. It is between his kidneys, and so far looks like major organs are not involved as much as it has taken up space everywhere else.
We have an appointment later this week with an oncologist, but they basically told him to go home and get his affairs in order.
I am LIVID that they didn't know the itching was a sign of internal lymph cancer. We google-d it and it popped right up. No more trusting doctors blindly. We are doing our own research.
Does anyone have any advice or hope for me? Any one had an advanced stage that has left the prostate that has had luck with certain treatments? We are on the East Coast so any suggestions for the best specialists would be appreciated too
 
thanks in advance
 

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/21/2008 6:11 AM (GMT -7)   

tongue  Hi ~ baerbaer and Loved Ones,

 

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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/21/2008 6:15 AM (GMT -7)   

tongue  Hi ~ baerbaer,

We have several members who will be touching base with you soon... but until then I hope this message gives you a little breathing space.

The Power of Hope

click here

 
It is important to gain all the knowledge you can and you've come to the right place for that extra strength that you will need to keep moving forward.  It's a journey best traveled with friends who know where you are!  Some detailed information would be helpful as your time permits... maybe you could get a "Signature" together...  This will help others to help you.  Follow the path to the link in your Welcome Letter above.
Keeping you all close as you continue to move forward.
In Friendship ~ Lee & Buddy

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

4th PSA 2-13-2008 (23 months) Less than 0.1 Non-Detectable :)


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 4/21/2008 7:30 AM (GMT -7)   
Since your FIL was diagnosed I have to assume he had a biopsy on his prostate. Do you know what the Gleason Grade or how he was staged? Knowing his PSA level was pre treatment and after would be helpful. Did they biopsy a lymph node to determine the spread of pc to the lymph nodes?
You mention he was given a shot - this must have been Hormone Therapy? I'm assuming it was as you said his numbers are down (PSA) and that is the purpose of HT.
They've determined he's allergic, the next choice to stop the production of testosterone, which feeds the PSA, is to do an orchiectomy (removal of the testicles).
Even though his cancer has spread to local lymph nodes, it's still prostate cancer so they will treat it in that way.

You have your work cut out for you and thank goodness, your FIL has you to help. It's a difficult task to wade through all the information available, but it can be done. I guess I'd say the main thing is to have your questions ready for the oncologist visit. Make sure your FIL's records will be at the doctors office - either you get them (you should have copies of everything anyway - always!) or request they be sent there - and then call to check! AND if someone could go to this appt. with him and your mother-in law, to take notes, to ask questions, to be that extra pair of ears for them. It's extremely helpful.

My husband has been on HT since '06 with success. There will be others who will post who are much more educated that I am on other treatments.

I wish you all the best, I really do. The group of people here are a caring and informative bunch...you'll see.
Please continue to post,
Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
PSA - Undetectable since 6/07/07

Link to journey:
http://www.healingwell.com/community/default.aspx?f=35&m=826731


baerbaer
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/21/2008 7:49 AM (GMT -7)   
Thank you for the info! He was not actually allergic to the treatment, they just thought that. What the itching was is one of the top symptoms of internal lymph cancer, which they totally missed unfortunatly until it has spread a great seal. So maddening!

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 4/21/2008 4:45 PM (GMT -7)   
Baerbaer-

I'm so sorry that you had to learn about not taking any doctor's word for something without getting at least one "second" opinion in this way.

That being said, it's time to march on. In my thinking, the first urologist is a non-entity. Therefore, the oncologist you are going to see is the first valid opinion you're going to get (hopefully). After seeing the urologist, if you are financially able, through your own means or insurance, I would strongly suggest you contact either Johns Hopkins in Baltimore, H. Lee Moffitt in Tampa or M.D. Anderson in Houston. Each of these very well respected hospitals has a website which will enable you to ask them to refer you to one of their doctors.

I'm in New Jersey and have chosen M.D. Anderson as my primary oncological center.

I wish you and your father-in-law all the best. It's not an easy fight, but it is winnable.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.


goody5
Regular Member


Date Joined Mar 2008
Total Posts : 66
   Posted 4/22/2008 3:45 PM (GMT -7)   
Baerbaer,
My Uncle's has also left the prostate. I just posted his update on what we are doing for his treatment.
Maybe it is time to order the book by Dr. Charles "Snuffy" Myers
He is a urologist who had node involvement and is doing very well.
You can get it from his website.
Check out my posts to see the journey we have already been on.
Cheryl
Father diagnosed 13 years ago @ age 63
Watchful waiting until PSA jumped from 6 to 10
Cancer found in 1 core
Gleason score 6
Seeds implanted
PSA has been low since (don't know exact numbers)
 
Uncle (mother's brother) age 68
PSA jump from 2 to 8 in 18 months (2/08)
DRE was normal (2/08)
Biopsy (3/08) Cancer found
Bone scan (clear) 
CAT scan showed 1 enlarged lymph node
Fine Needle Lymph Biopsy (Positive)
Gleason Score (7) 4 + 3
9 of 12 cores positive
 
 

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