New to Forum

Nobody likes having the Pca diagnosis but there are many knowledgeable and compassionate people on this site. I too am relatively new here with a diagnosis of agressive (Gleason 9 over 90% of prostate) Stage 4 D1 spread (no distant spread yet). A lot has happened for me in just 2 & 1/2 months. Went from diagnosis to intensive testing (CT, bone scan etc.) to acceptance in a very promising clinical trial at Huntsman Cancer Institute. At first, when the ton of bricks hit me and the crying was done... I made the decision to go on working and live my life as fully functional as I possibly could even though I supposedly automatically qualify for disability. All 5 of my doctors told me there are a lot of tools to fight this bandit and being relatively young (55) and in good health otherwise, I have a good chance at a long survivability rate. I am telling you this to hopefully give you two encouragment that this disease can be fought successfully.

I'm sorry I have never been involved with the VA so I don't know about your question, but I'm sure someone here will be able to help you there. My one small bone metastasis showed up on MRI and bone scan but not CT scan so I would recommend MRI and bone scans but don't know about the Tesla 3.0. Whatever standard MRI was done on me showed my small bone met.

I wish you the best.

foamhand.

As Max already pointed out, I just want to emphasize that coverage may be available for former military who might have been exposed to Agent Orange (e.g., in Vietnam).

Swingshiftworker said:

Cyrotherapy for PCa?

I am not a vet and cannot speak to any issue about the VA or its coverage for PCa BUT I am very confused about why they would recommend cyrotherapy for PCa, especially for a case so advanced as your partner's where the cancer has already very likely spead to other parts of the body.

Cyrotherapy is actually a very rare form of treatment for PCa and when used it almost always causes ED permanently and incontinence temporarily and sometimes permanently.  It can also cause penile numbness, damage to the urethra and/or fistula between the urethra and the bladder leading to infections and other problems.  

It is NOT a procedure to undergo without doing considerable research on it and other alternatives.  I suggest you do this ASAP!!!!

 

 

I agree with SSW that this form of treatment makes no sense, given the particulars of his cancer.  It sounds like the doctor who was speaking with you is not an oncologist, actually.

max

Jullo,

I am appalled for the way your partner's care has been taken. I have read many reports from VA patients in this forum complaining about the "loose" style VA doctors look upon PCa cases but also read that some go private under the expenses of the VA system. Some guys managed to get consultations with specialists out of the system (probably introduced or at the recommendation of the VA doctor), and then get the treatment via the VA system.

VA do not cover all types of exams and treatments but it covers typical therapies good enough for your partner's case. The VA doctor got the masters position in the care. He decides on what to do and signs the papers for its execution. I would try to discuss such a possibility with him before deciding on anything. Surely you can always consult a specialist and contest the VA doctor suggestions.

From the data you have shared, i imagine your case being aggressive (Gleason 9) and advanced (high PSA, lymph-vascular invasion and positive bone scan). Such a status is never recommended for cryosurgery. Radiation would be his best shot but even this therapy will depend on the extent of the spread. If far metastases are confirmed then your partner may benefit from a neoadjuvant chemotherapy protocol.

All of the above is subjective to is clinical stage. He needs to get proper and more testing/exams to verify the real status. Agent orange affected personnel have special benefits from the military, that would pay sophisticated therapies. The AO condition makes treatments to fail or and difficult to treat. You need to get a second opinion from a medical oncologist.

Even if his case is very advanced, he has time to find about the best route to take. Just don't get loose on the matter and get on the move. Get copies of all data collected up to now including the bone scan and CT images from the VA assistant, and then request an appointment for a consultation at your local hospital with a PCa specialist, to get his opinion on the data and subject, even if you have to pay out of your pocket. Then try to "connect" the VA doctor with the specialist.

Best wishes and luck in his journey.

VGama

jullo123 said:

Thank you so much for your feedback.

He is going to get a second opinion and I only wish I had made it two weeks ago. However, the other hospital needed the reports.

We have the radiology report now , and not that I understand medical jargon but I have read that the cancer is in other parts of his body. 

The urolgogist has now recommended Hormone therapy. 

I will be get him another appt ASAP.

 

Thank you again.

 

Jullo,

Do not blame yourself for his initial doctor being somewhat slow. You are driving this response very well.  And understand: two week's time had NO ROLE in his current stage;  PCa just does not move that fast. 

A second opinion from an oncologist  (not a urologist) is exactly what he needs.  It is now virtually certain (as was stated initially) that he has metastatic PCa.   The HT merntion was reasonable and likely to follow. Hormonal therapy is often highly effective against even advanced PCa, and even  for years or sometimes decades.  But as Vasco mentioned, he may benefit or need radiation and/or chemo also, depending on several specifics. The order in which these are given would have to be figured out by a medical oncologist.

Be aware at this early point in learning about the disease that metastatic PCa is not curable. But it is controllable, often for many years (or even a decade or more, as I mentioned), and with good quality of life.

max