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Advance PC Diagnosis Advice Needed

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Posted 4/21/2008 12:57 PM (GMT 0)
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

 

Posted 4/21/2008 1:11 PM (GMT 0)
 Hi ~ baerbaer and Loved Ones,   W elcome     to…    ~ HealingWell ~   and   A    “ Special ”    Warm Welcome   to   You !   Knowledge gives us POWER….   POWER takes away the fear.   ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~      ~     Click   on   link   below for important information that will help you ~ help us!!     >>   Welcome New Members ~ to HealingWell   The information (link) listed above is to help you get around the forum!    v        This is a journey best traveled with friends.  Welcome ~ New Friend from all the members here... on HealingWell.com   v       IdahoSurvivor ~   Moderator for Prostate Cancer Forum http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg   v       TC-LasVegas ~   Moderator for Prostate Cancer Forum   v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg
Posted 4/21/2008 1:15 PM (GMT 0)
  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
Posted 4/21/2008 2:30 PM (GMT 0)
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
Posted 4/21/2008 2:49 PM (GMT 0)
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!
Posted 4/21/2008 11:45 PM (GMT 0)
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
Posted 4/22/2008 10:45 PM (GMT 0)
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.
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