CSN Login
Members Online: 9

You are here

New to Forum

jullo123
Posts: 5
Joined: Jul 2016

Hello,

My partner has just been diagnosed with Prostate Cancer.  No DRE was done but his PSA quadrupled in a year ( now 41) and we have just received

the results of the bioposy.  I am just getting on board to try and understand the information. He had 12 samples , 5 came back positive with "perineural

invasion." One came back " suspicious for lymph-vascular invasion with a 5+4 =9 Gleason Score. The VA doctor has recommended cryoblasty(?)

For reasons I won t go into I believe it is best that we leave the VA system ( one being no DRE done) . We 're looking into whether or not the medical bills 

will be paid if not in VA system. I've also read that agent orange is linked to agressive prostate cancer .

I know these bioposy results are not good. My main question is would anyone know which direction we should go? We are waiting for the VA to schedule

MRI/bone scan. I just read on the site about Tesia 3.0 MRI. Should we request that he have that kind of MRI? Does it matter? 

Thank you so much for your time and feedback,

Julia

PS Sorry , I couldnt find the place to delete double-spacing and didnt have the patience to keep looking !

 

foamhand
Posts: 72
Joined: May 2016

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.

jullo123
Posts: 5
Joined: Jul 2016

Thank you for writing and giving me your input. Just waiting now for the appt for scan/MRI.

Your encouraging words helped!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3205
Joined: May 2012

Julia,

I'm very sorry about your partner's diagnosis.

I am a Vet, and in the past have used the VA System myself, and also have worked for the VA as a vendor (never as a medical professional, however).

I believe that exposure to Agent Orange will qualify any vet to automatic, full coverage for prostate cancer --basically no questions asked. There are NUMEROUS cancers for which this is true (that the VA will treat the patient, with no "proof" that Agent Orange actually caused the disease).  I'm sure the VA website lists these cancers.

Where I live, oncology is outsourced: the vets are sent to civilian cancer centers for their treatments.  This may vary by location.

His disease is advanced and serious: PSA over 40, a Gleason Score of 9.  I would not read too much into them not doing a DRE, since they already know that he has advanced disease. Good scanning is quite important now.

"Perineural invasion" means that the cancer has exited the gland via the nerves that pass through the gland.

"Lymph-vascular suspicion" means that it appears that cancer has also gone from the gland into adjacent lympy nodes.  These two results mean that he is almost definitely Stage IV, but there is some remote poossibility that he might be advanced Stage III.

I would get face-to-face with his VA doctors soon and make a decision on this.

My experiences under VA were all excellent....

max

 

jullo123
Posts: 5
Joined: Jul 2016

Thank you for your input and explaining some of the medical terminology.

The DRE was not done last year even though high PSA. I know my energy needs to be on the focus of what is the best course of action now.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

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!!!!

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3205
Joined: May 2012

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

jullo123
Posts: 5
Joined: Jul 2016

The doctor - he is a urologist- also did not do a DRE when PSA levels were high. He mentioned crotherapy and decried other methods such as taking the prostate out. I am still very ignorant about all of this and have only tried to figure out what the bioposy means as the doctor didnt explain it. 

The VA only did a bone scan on Friday . They seemed to have " forgotten" to do the cat scan. The doctor told him they found some " worrisome " spots on the scan. 

That s all we ve gotten so far. Its been two weeks since he called us into the office. He is now all set for a seconed opinion and the cat scan is happening tomorrow. He feels very well , is in good shape. Still we dont know what s going on... I m trying to understand this... 

Thank you all for you time.

Old Salt
Posts: 720
Joined: Aug 2014

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).

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

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
Posts: 5
Joined: Jul 2016

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.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3205
Joined: May 2012

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

Subscribe to Comments for "New to Forum"