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PCa 12 Biopsy 12 taken 8 Positive Questions Please?

Rozanne54
Posts: 3
Joined: Jun 2015

I am thankful I found this site. I am thanking you in advance for any information you can give me from personal experience. 

My husband has just found out this week he has what the doctor told me over the phone is Metastatoc Prostate Cancer  He is 67.  After his PSa went up to 12 (first time they had checked it in over two years!). We found this out in March. It took till 2 1/2 weeks ago to get the biopsy scheduled wiht the VA. It took an enormous amount of phone calls and notes given to the doctors to get any results. We were finally told he had cancer not by his doctor but by the lady that for many years has been the head of the medical team that takes care of him. She looked at his charts and told me.  My third son who is also a vet called the Patients Advocacy group and it is amazing the difference that has made in people giving us answers. My husband is a Vietnam Vet and there is no doubt he was exposed to Agent Orange. They did a bone scan yesterday. Today they called and told him he has an appointment on the 30th with a Doctor at the Medical University here.  I looked him up. He is a Radiation Oncologist. What I have read looks very good. I honestly know very little about Prostate Cancer I have combed the internet and the stuff is all over the place. One article is hopeful. The next other wants me to sit down and just sob. By the way, they also have him scheduled for a MRI on the same day at almost the same time as the radiation oncologist. When I mentioned this to the doctor's office - they told me I would have to get in touch with VA because they call and set everything up.  

First - PSa was 12  it is still 12 (the doctor said it was good that it has not gone up) 

They took 12 - 8 were positive. 5 were the aggressive but she also said only 1 or 2 of them were the top number of the aggressive.  All were on the right side except one which was on the left. She also stressed that all were not the aggressive type.

We meet tomorrow with the VA doctor I just need to know what to ask 

I am married to greatest man in the world. We have been married for 45 years and have 5 wonderful kids.  I want to help this precious man and also make sure everything is done to help him. I want to BEAT THIS STUFF!!!!!!!!!!!  Am I being unrealistic? What should I ask?

Also if anyone out there also has had Prostate Cancer and was in Vietnam - I know there are benefits but I am concerned that my husband will not be able to work - he is a paint contractor. How did you go about getting benefits?

I know this a lot of questions but right all I have is questions. Thank you. I hope this makes sense I am just kind of typing my questions and feelings here. I promise I will get it more together when I have more knowledge.

In Him

Rozanne 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

Wellcome to the board.  I am sorry to hear about your husband's cancer.  There really is not enough information to give an opinion about the cancer.  With only the information that you have, or have been given, there is no telling what is going on with the cancer.    For us layman to give an opinion on the cancer is not possible.  However, it is possible to give an opinion on the treatment and your medical team.  It would appear that no one is giving you the information that you need to have and are entitled to.  You are really being mistreated to a very high degree.  YOu need to get answers from your med  team ASAP.  YOu need to get all results and go to a Urologist and have all explained.   I am surprised that an appointment was made with a radiation oncologist, who will probably recommend radiation.  YOu are NOT in a position at this time to decide ANYTHING, because you are totally in the dark.  There are different ways to treat Pca and you do not want to grab the first straw.  And you do have time. Pca does not require any kind of immediate treatment.  Please sit back, get the information, ask questions here.  I know that Vasco da Gama will answer you here and give you all the information you need.  I am only chiming in until he gets here. 

Do not panic.  Everyone who is first diagnosed goes thru fear and uncertainty and usually wants to make decisions too quickly.  Pca usually can be treated, even in late stages.  And, even when the doctors say the cancer is agressive and very dangerous, often those patients live a lot longer than expected with a decent quality of life.  I am one of those, have lived more that 8 years with matastases, and my initial PSA was 300.  So, have optimism, wait for more information, and understand that you and your husband have been badly abused by your medical team.  DO NOT ALLOW THEM TO MAKE DECISIONS FOR YOU.  You must have patience, make NO quick decisions in a hurry, and YOU TAKE RESPONSIBILITY FOR ALL DECISIONS.  I believe you are NOT in good hands.  Other posters will come to you aid with better information.  Best of luck, love, Swami Rakendra

 

Rozanne54
Posts: 3
Joined: Jun 2015

Thank you so much

I will probably have a 100 questions tomorrow night after meeting with the VA doctors. 

Thank you for reaffirming that we should be getting more information than we are.  

I feel right now like my husband and I have pushed some button and our lives have been placed on hold I do not mind being on hold. i just want to know he is going to be okay and how I can help him.  

Rozanne 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Rozanne,

It is important that you obtain a copy of the pathology report, and all other medical records pertaining to prostate cancer.

Also get a copy of all PSAs that were done and the dates that they were done. This includes past PSA's

Also ask for a copies of all medical notes and records pertaining to prostate cancer.

Ask if the MRI will have Tesla 3.0 magnet....this is the best used in clinical, and provides the best definition. This is what you need. 

...Ive read that that vets with boots on the ground as your husband qualify for 100 disability. At some point you might want to ask about how to start this procedure.

By the way does your husband have any other physical disabilities?

 

Best,

 

H & O

 

PS Since family members are more likely to develop this disease than the rest of the population, the right thing to do is to share this diagnosis with brothers, sons, even cousins so that they could be tested. A benchmark PSA at around age 35, then annual visits to include PSA and digital rectal exams (finger wave), etc starting at age 40. This is the right thing to do.   Additionally a correlation has been shown between patients of breast cancer and prostate cancer, the women in the family, daughters, sisters, etc need to have those mamagrams.....Since a heart healthy life style is good for prostate cancer and breast cancer, everyone needs to follow this life style.

Rozanne54
Posts: 3
Joined: Jun 2015

As far as disabilities - he does have the skin - burns - red = that had never happened to him till after he came back from Vietnam ...it started probably within 6 months of his return. He was still in the service then.  We just assumed it was from is Scott- Irish background ...but we now know that is also associated with Agent Orange. One night a few years ago during the war just saw a mine blowing up and he was all of sudden back in the war...he has PTSD..that had not happened since right after he got home....now we are careful not to watch movies or the war stories that could trigger those. 

Thank you so much for all your help on this. I have made a copy of this and I am going to high light these key things to ask about.  

Rozanne

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Roxanne,

 

Ask permission to tape record the medcal meeting, and / or take notes.

 

................

The doctor will talk about Gleason scores.......this measures the aggressiveness of the cancer. Here is a quick summary , page 2

http://www.webmd.com/prostate-cancer/features/prostate-biopsy-and-the-gleason-score?page=2

 

Some questions

Which cores have the highest Gleason score(s), and what is the involvement(percent of core) that is cancerous?

How many cores were taken, how many cancerous, what was the gleason and involvement of each?

What does the doctor, now think that the chance is of extracapsular extension, that is that the cancer is outside the prostate.

What treatments are available, and the chances of side effects.

If the cancer is aggressive, say a total  Gleason of 8 , 9  or 10 ask for a referral to a Medcial Oncologist, andask  for a bone scan.

 

 

 

 

 

stoniphi's picture
stoniphi
Posts: 54
Joined: Mar 2015

...pleased to meet you. I will 'cut to the chase' as your husbands case is similar to my own and I have actually been treated for this cancer.

 

I am 64 years old. When I was 62 my PSA went to 11.1 and the urologist felt a bump on my prostate during a 'digital rectal exam' (DRE). I then went in for a biopsy. The results were that 12 out of 12 cores contained acinar adenocarcinoma. This type of prostate cancer is caused by exposure to lead, arsenic or both. That 'flips' exogenetic 'switches' and starts the cancer. The cancer in my core samples was 'scored' at a "Gleason" of G=7(4+3).

 

Further tests at hospital showed the cancer to be "localy advanced" but there was no sign of metastesis. I got "Da Vinci Robot - Assisted Radical Prostatectomy" (RARP) which removed the 35 gram tumor. 1 seminal vesicle was contaminated with cancer, but no lymph nodes were. There were 2 'extracapsular extentions'. The removed sample had "positive margins", which is NOT a good thing. I was 'staged' then as "T3c M=0 N=0" or 'stage 3 cancer'. (M means metastatic, the 0 means it isn't. N means the number of lymph nodes infected, the 0 means none were) 2 weeks after surgery my PSA had gone down to 0.20ng/dl so I was started on "Androgen Deprivation Therapy" (ADT), a form of "chemo therapy". After 3 months of that they gave me "External Beam Radiation Therapy" (EBRT) with what is called a "Cyber Knife".

 

Now, 2 & 1/2 years after I started treatments I am done with them for the time being. I will get blood tests every 3 months for 2 years. If my PSA has not gone up I will get PSA blood tests every year. If my PSA has gone up again I will be in the same boat as our good friend Vasco.

 

A man with prostate cancer can indeed live a long, active and productive life for literally decades with the treatments we have available to us these days. Every man alive can potentially get prostate cancer. His chances are his age/100. I was 62 when diagnosed so my chances were 62/100 of having it.

 

I suggest getting as much information as possible from as many sources as you feel you need, calmly and carefully consider it, then move forward with a plan in place.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

The guys above have provided you w/a lot of infomation and you probably already feel overwhelmed.  What I'm going to tell you won't help reduce this feeling but I hope it will help you get more focused on what you need to do and the quesitons you need to ask.

You have already been told that your husband has "metastatic prostate cancer" (MCP)  That means that it has ALREADY spread beyond the prostate. So, he is probably has a Gleason 8-9 score (which is an aggressive cancer; the highest is 10) and is a Stage M (mestastic) -- the question is what level of Stage M is he at.  He's also a Stage 4, but that doesn't really tell you anything.

See the following WebMD description of "metastattic prostate cancer" for a general overview: http://www.webmd.com/prostate-cancer/metastatic-prostate-15/metastatic-prostate-cancer.

See the following for a description of the various "stages" of prostate cancer: http://www.cancer.net/cancer-types/prostate-cancer/stages

See the following for a description of how a Gleason score is determined: http://www.cancer.org/treatment/understandingyourdiagnosis/understandingyourpathologyreport/prostatepathology/prostate-cancer-pathology

First, you need to find out from an oncologist what your husband's Gleason score is.  The Gleason score will tell you how "aggressive" the pathologist thinks the cancer is.  The higher the score the more urgent the case is.  Do NOT rely on what the nurse (?) from the medical team told you.  Aggressiveness is rated based on the score of most of the cancer seen combined with the score for the next most common type of cancer seen on the slides.  Doesn't matter if there were even lower rated cancers seen in some of the samples.

Second, you need to find out what Stage your husband's cancer is at.  Your husband is either at Stage M1a (nonregional/lymph nodes), Stage M1b (bones) and/or Stage M1c (spread to other body part). 

Since they've already scheduled a bone scan and an MRI, they probably don't know what level of Stage M he's at.  You need to get the "right" diagnostic tests done to determine the spread in order to plan the course of treatment.  This doesn't mean he can't be given some form of treatment before the test results come in, but the treatments will be more effective if they know exactly (or at least, more or less) where the cancer has spread.

The tests typically done are bone scans and MRI but there are other testing methods as well.  A combined MRI/MRSI scan using a Tesla magnet is the best because it includes magnetic spectrospcopy which can pinpoint the chemical location of choline which is a flag for cancer.  Don't know if the VA has this capability but that's what you should shoot for.

See the following for a discussion of the use of MRI/MRSI imaging in prostate cancer detection: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578527/

Since your husband's cancer has spread somewhere beyond this prostate, your only treatment choices are radiation (if it's localized anywhere), hormone therapy (to try to reduce the growth of the cancer) and chemotherapy (which is a shotgun approach to killing the cancer in your husband's body, where ever it might be). 

Surgery is NOT an option at this point; no point cutting the prostate out if the cancer has spread elsewhere, especially given the debiliitating effects of surgery and its side effects, BUT radiation treatment of the prostate to kill the cells w/in the prostate might be considered in order to stem any further spread of the cancer from there.  Cyberknife is the best radiation treatment but is seldom used on men beyond Stage T2 and Gleason 7; IMRT or IGRT would probably be the methods used to kill the cancer still in the prostate IF that is an option.

Once you get a handle on the aggressiveness of the cancer (Gleason Score) and the Stage of the cancer (M1a, M1b and/or M1c), you and your husband will be in a better position to decide what you need to do.

Good luck and best wishes!!!

PS: There are some ex-Vietnam Vets here (or use to be here) who are familiar w/the Agent Orange & cancer connection and how to get VA medical and disability coverage for it.  The govt use to deny disability coverage but such coverage is apparently now available; just don't know how "easy" it is to prove and get the coverage which is another issue.

See the following for the government's website concerning such claims: http://www.publichealth.va.gov/PUBLICHEALTH/exposures/agentorange/benefits/index.asp

Kongo (his screen name) was one of the most informed about this but he hasn't been on this forum for some time.  You can do a key word search for "agent orange prostate" to find threads which discuss this problem and how to get coverage for it.

Unfortunately CSN's seach function is pretty primitive and, unless someone else here can point you in the right direction, you will have to go through each thread (post by post) to find the info you need/want.  However, a Google search would probably yield better results & will probably include references to CSN posts.

PPS: One word of advice.  Please don't try to do everything yourself!!!  You have 5 adult children, including a Vet.  Enlist their help to get the info and assistance you need, especially as it relates to how to get disability coverage from the government.  That will NOT be an easy process and you should delegate as much of the responsibility for getting the medical and other help your husband needs to others as you can.

Again, good luck and best wishes!

 

Clevelandguy
Posts: 442
Joined: Jun 2015

Hi,

Looks like you had the tests done, now you need to find the best treatment.  When I had my MRI & biopsy the treatment options are kind of overwhelming.  Radiation(external or internal),surgery,do nothing, need to be sorted through on what works best for your husbands case.  I chose Robotic surgery with radiation as a backup if needed. I always like having a backup plan. I am in the recover phase right now(9 mo. later) and making good progress.  I feel this disease can be beat, I will find out over the next fews years.

 

3+4  PSA 5.1

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