New here: Husband has very high risk localized PCa

Desperate,

You are understandably very stressed.  But decisions based on stress are invariably bad decisions.  You have a period of research and consultation before making any decisions. Even advanced PCa (prostate cancer) is very treatable, and in some cases remain curable. And even metastatic PCa, which he might NOT have anyway, is treatable, usually for a decade or more.  So take a time out and relax for a moment.

PSA guidelines in the US for the last few years have not "directed against" PSA screenings. They have suggested that PSA is overused and led to unnecessary biopsies and treatments.  I never agreed with this attitude, and have criticised it here many times, but all doctors have remained free to make their own clinical decisions.  My own family doctor agreed with the "PSA is overused" approach, and I took my results to a urologist, and she gave me an immediate biopsy, which discovered Stage II PCa.  So I understand your anger.  Similiar insurance-driven attitudes have been published regarding breast cancer in the last few years also.

My PCa was treated via surgery.  But your husband sounds to me like a poor candidate for surgery. We are not doctors here, and cannot offer medical advice, but I'm sure all will agree with me on this.  Certainly I would not assume surgery at this point. You need to consult with at leat one Radiaton Oncologist with extensive PCa treatment experience,preferrably at a promininelt national or regional cancer center.  Surgery for metastatic or very likely metastatic PCa is a poor choice for cure.  What is potentially curative of matastatic PSC is radiation.  Hormonal treatments and chemo are not curative of PCa disease, but especially HT will control it, often for a decade or even much longer. 

You need to consult with some proinent professionals before assuming what will transpire in his treatments.

max

Surgery can have major side effects such as incontinence and erectile dysfunction.

Surgery is generally done toward localized cancer within the prostate. In your husbands case with a high risk Gleason score of 4+5=9 it is probable that the cancer has escaped the prostate, thus surgery would not eradicate all of the cancer and radiation and hormone treatment would still be required. The surgery would be  redundant, and radiation and hormone treatment, or hormone treatment only would still be required.

You need to find a Medical Oncologist, the very, very best that you can find to lead your medical team. This doctor is most qualified to administer hormone treatment.

Also as previously recommend interview a radiation oncologist.

I wonder if your husband has had any imaging diagnostic tests such as a 3T MRI or an advanced PET scan?

"the bone scan involves the use of radioactive isotope that is picked up at the sites within the bone in thee presense of significant bone metastases.

It is recommended for high risk patients. Great that your husbands results were negative.

Basically the MRI provides finer resolution than the bone and cat scans, and is more effective in determining if the cancer is outside the prostate. Recommend that you ask for a multiparmetric 3T MRI so a more informed decision can be made.However, my lay opinion is that  in your husbands case it is  unlikely that the cancer is contained in the prostate.

The T3 MRI  for prostate cancer that is very effective in indicating if there is any nodule involvement, if there is involvement in one or two lobes, will show size of prostate, may show evidence of extracapular extension, will stage the disease. An MRI with the 3.0 Tesla magnet, is the gold standard. 

here are some studies from pubmed about mri's and a high tech pet scan

multiparametric mri t3 

The impact of Magnetic Resonance Imaging on prediction of extraprostatic extension and prostatectomy outcome in low-, intermediate- and high-risk Prostate Cancer Patients. Try to find a standard.


http://www.ncbi.nlm.nih.gov/pubmed/26154571



The impact of multiparametric pelvic magnetic resonance imaging on risk stratification in patients with localized prostate cancer.


http://www.ncbi.nlm.nih.gov/pubmed/24785987



Preoperative 3-Tesla multiparametric endorectal magnetic resonance imaging findings and the odds of upgrading and upstaging at radical prostatectomy in men with clinically localized prostate cancer.
http://www.ncbi.nlm.nih.gov/pubmed/23040223



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PET SCAN

There are various pet scan that provide information about where the cancer may be outside the prostate, so directed radiation can be done. Below is one PET SCAN type. There are others that may be available and more effective.

Detection of recurrent prostate cancer after radical prostatectomy: comparison of 11C-choline PET/CT with pelvic multiparametric MR imaging with endorectal coil.

http://www.ncbi.nlm.nih.gov/pubmed/24434294
This above comparason is looks at a high tech PET/Ct.

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Hormone treatments

There are various hormone drugs that are available. Many of which lower testerone levels and  cause ED and can cause significant a side effects. Often there are vacations from these drugs where the patient may more normally function. My case does not require homone treatment,so I am far from being an competent about this,  but others who post here, who receive hormone treatment here can fill you in based on their experience and knowledge.

Hormone medications, during the last few years have increased geometrically with some of them being very high sophisticated...thus the reason for a Medical Oncologist.

Your husband will overcome this, but things must be done in a rational manner, based on knowledge.

Desperate

I am sorry you are now a member of this group. Your team approach gives you more issues to consider for treatments and the general effects of each treatment. The success of the treatment plan has a direct relationship to the quality of life you and your husband will experience as you make treatment decisions.

Old Salt, Max and others have made suggestions, based on their treatment choices, all worth considering. My wife and I made decisions in 2016 which have lasting effects; positive and negative; short term and long term.

January 2016, annual physical PSA test at our family doctor's was slightly elevated - 6.1, previous test 4.2 - 63 years of age.

February 2016, referred to Urologist for digital examine and then a 12 core biopsy two weeks later.  9 of the 12 cores were 100% hot, lab returned a sore - Gleason 3+4=7. A MRI and bone scan would follow in the next 15 days. Subsequent X-rays were taken of question areas which were determined to be osteoarthritis. Both the MRI and bone scan were negative.

Mach 2016, research, discussion, and prayer. I happen to work at a large hospital, providing many varied opinions on how to address this cancer.

April 6^th our choice to have the prostate removed was completed robotically. The post-operative pathology report, for us, confirmed we had made the best choice in our situation, in our opinion. The post-operative pathological report of the gland was not what I had hoped for: 70% tumor, Gleason's grade 9 (4+5). Of more concern was the margins: bladder neck - positive bilateral, perineural invasion-positive, extraprostatic extension-positive, seminal vesicles-positive right.

Stage: pT3b. NX.

My cancer was not contained to the prostate only, The link to my specific history can be found in my September 30^th posting “Adjuvant IMRT”.

September 2016, we are now in the middle of Adjuvant IMRT treatments. These treatments were started about as quickly as you can after surgery, only a 5-month healing span. The aggressiveness of my specific cancer has had an impact on our treatment decisions.  

We wanted to remove as much of the cancer as possible surgically, then address any remaining hot spots through a radiation oncologist. There are side effects to surgery we are dealing with; learning to live with. Will these side effects get better, lessen in time, possibly?

This summary is only a reference, a little insight as to our pathway in fighting the bandit, the decisions we have made to date. This site is a great place to glean information, to find outside reference materials. I was not the first, nor will I be the last to fight this battle; study and make the best decisions you can for your situation.  We have found each member of this site to be on our side against this bandit; they will support you and your husband as well.

Will Doran said:

Different Person.

Desperate,

Yes, you do become a different person.  It happend slowly and I didn't notice it, until my Testosterone started coming back up, and now I'm back to feeling like my normal self.  I got to the point I really didn't care much about what was going on around me.  That has all changed back to normal.  My wife and I try to make light of that and laugh about it at times.  Some of the changes were actually for the better.  There are things that I used to really be very particular about. Like clean windows, well manicured lawn, spotless clean cars, etc. I NEVER used automatic car washes.  Now, they do the job just fine, and it saves me so much time.   Now some of those things really don't seem important anymore.  In the end it's not going to make a difference anyway. We work on that kind of stuff when we have time, unless we have something we want to do together to enjoy each other's company.  Like going for drives, fall "Leaf Peeking", and such things. 

There will probably be times when your husband doesn't want to talk about his situation.  I was that way.  My wife was always there and still is here for support, but she never "pushed". Communication is very important.   If I wanted to talk she was and is a very good listener.  My most hated thing was and still is that I really don't want to have to explain my situation to other people and especially family members.  Family members can be the worst.  Especially those who have to know every detail so they can gossip about it to others.  I also get very upset, at times, with those who think I've done the Surgery, Radiation and Hormone Treatments and now everything is done and over with and I should be fine.  Well, as we all know, you are never over this.  Cancer is always the beast hanging over you head.  Given the right conditions it will be back.  This has been a real problem with my mother-in-law.  My wife has had to get rather short at times and tell her mother point blank to "Knock it off" when she's around me.  That didn't go over too well at first, but now, "Mother-in-law" stays out of my face.

And don't be surprise if at times your husband just sits and cries.  If so, please be understanding.  Crying can be good medicine at times.  I did a lot of that when my testosterone was down to 17.  Now, that I'm back in the normal range for "T" levels, Not so much, but sometimes I just sit with a blank stare, and think.

Enjoy every day and moment together and, Think about the Quality of Life.

Love, Peace and God Bless

Will

A PCa diagnosis definitely changes one's perspective, and causes one to realign his priorities. Same thing for the ladies impacted by PCa in their significant other.

mikedayton62 said:

You are absolutely correct, Will

A PCa diagnosis definitely changes one's perspective, and causes one to realign his priorities. Same thing for the ladies impacted by PCa in their significant other.

Mike,

Yes, at times I think this is harder on the wives than on us.  We just have to do what is suggested and let the treatments do their job.  The wives have the constant worry of the future.  My wife has had to take on some jobs that I used to do.  Especially with work in the yard.  We now go out there together,  Me on my tractor to cut the grass and her with her light weight rechargable weed whacker and we do the yard.  She has had to add some of these jobs onto all of what she always did on a day to day basis.  She's been a real trooper through all this.  I'd be a total wreck if it weren't for my wife. 

God bless all of our wives,

Will

Desperate,

Survivors above have provided you with great information. They are great members of this forum and provide the best opinions to follow. Their status were similar to your husband's but any treatment protocol you chose can differ from the outcomes above posted even if you decide on the same option. I think your best shot in confronting the problem is what you are doing in being as much informed as possible, reading about the cancer, the treatments and their side effects, gathering evident data on his status through tests and exams (the best available type of techniques) and from second opinions done by PCa specialists. 
The last "action" will be to get together and discuss about a solution that both feel comfortable in. You need to include considerations to family finances, your young child schooling and the quality of life. 

Surely you can go the sequential you have commented in your first post. However, you need to consider the risks and side effects your husband will be confronting. In other words, avoiding treatments that can not assure cure and opting for something not perfect but that can assure similar results at lesser risks, may become a better choice.

Above you say that "My husband's overall priority is to prolong his life and enjoy his family and grandchildren". At the moment from the info you share here, I cannot see any reason for such wish not being achieved. There is no indication that you are confronting the worse case. Surely it is not also contained. Your info of 12/12+ (all cores positive) and the Gleason score 9 confirms the title of your thread; High risk localized case, and this means you can look for a treatment aiming at cure, not just in prolong his life.

The negative Bone scan also rules out far bone metastases (M0). The CT result is most probable a false negative. If you want to confirm the existence of localized extracapsular extension such as lymph node involvement (N1) you should opt for an image study done by modern techniques using the latest contrast agents and PET scans. N0 M0 is just the answer by his physician on the results of the image studies. NX would have been more appropriate indicating that the data on lymph nodes is not available/recognized.

In respect of the above, I think that aiming a radical is feasible, but surgery (RP) would be used only for the purpose of debulking. Radiation (RT) seem to be more appropriate providing a higher chance at cure even without surgery intervention. To such extent a better image for locating cancer hideaways would help in planning a better field of RT attack. We cannot throw arrows in the dark and expect them to hit the bulls eye.

Hormonal treatments (HT, ADT) are palliative so that their inclusion in the combined therapy would only be useful for improving RT action. Surely you could also chose HT as the prime and solo therapy if you give preferences to extended life at lesser risks, but no cure. HT can also be used to pospone a RT therapy at no loss of treatment efficassy, this means that your husband can start already HT while investigating on a type of radiation, however, if surgery is an option than discuss firstly with your surgeon; he may not like to operate under HT effects.
HT provide long periods of control in the advancement of the cancer if the cancerous cells are hormone dependent. One can get a clue of his own type of cells through a genetic test similar to the Decipher test.

I recommend you to forget about those comments regarding RT before or after RP as means of a decision, or even in chosing surgery for the sake of obtaing a pathologist report. It is better to continue your researches collecting reliable data before deciding. Do things coordinately and timely. A PCa case does not become worse overnight. The majority of Gs9 patients spend tow to four months in the process of decision making, from diagnosis to therapy.

Best wishes and luck in his journey. You are simply wonderful.

VGama

desperate for hope said:

Thank you for your response.

Thank you for your response. We did consult with surgeon and Rad. Onc. The Rad Onc seemed said it didn't matter which way we went, the outcomes were similar. However, I've been reading that RP + RT + ADT might lead to the best survival outcome. I wondered about the treatment that others with similar cancers had. 

I live in Canada and the guidelines for PSA screening are NOT to have an informed discussion but screening but rather not to mention it. If the man brings it up the guidelines encourage informing him of all of the negatives associated with it. 

 

 

 I believe what the radiation oncologist was referring to when he told you, "it doesn't matter which way you go" (surgery or radiation) is the outcome of either of those two treatments being employed agains all first-line PCa patients.  Nothing else makes sense.

But: most first-line (ie, never before treated) PCa patients begin with incipient, early disease; no the sorts of results that your husband has.

Several guys who did begin with terrible numbers have shared their inspiring and successful histories.  As Vasco noted below, do not assume the worst in this; keep fighting for answers. And you do need oncologists who are expert in advanced disease .  I would ask them directly: What do yo know about late-stage treatments?