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New here: Husband has very high risk localized PCa

desperate for hope
Posts: 44
Joined: Oct 2016

Hello, 

My husband (age 59) was just diagnosed with very high risk PCa. (PSA 28, GS 4+5, 8/8, 12/12+, N0, M0)

I am extremely upset not only because he has this cancer but even more because the doctor didn't even mention PSA screening at his previous physicals. I've since discovered national guidelines that direct against screening. I'm beyond shocked that men are abondoned in this regard, and receive care only when their cancer is symptomatic. I feel terrible that I knew nothing about PSA. How could I be so stupid? How could we have trusted the family doctor to perform a thorough physical? A simple blood test could have found this cancer early and my husband would have had a good chance of cure.

I have been researching like crazy. I know its likely that there is micrometastisis. At this point, I think the best option is mutilmodal: RP + RT + ADT but no doctor has really laid out a long term plan. Someone told me that RP is safer than RT for high risk because you can add RT to RP but not the other way around.

I expect the pathology report after surgery will not be great. 

Is anyone else in this terrible place? If so, did you begin ADT right after surgery? 

Thank you. 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

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

desperate for hope
Posts: 44
Joined: Oct 2016

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. 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3295
Joined: May 2012

 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?

Old Salt
Posts: 720
Joined: Aug 2014

Yes, as another layperson, it appears to me that surgery should not be included in your husband's treatment plan. As you already wrote, some cancer cells may have escaped the prostate. These can be controlled, or even eradicated, with hormone therapy. And the cancer itself, being confined (at least on a 'macro' scale) to the prostate can be treated with appropriate radiation. Importantly, the radiation plan should include areas immediately surrounding the prostate. An appropriate scan should be helpful in setting up a treatment plan.

As an aside, my diagnosis was similar to that of your husband. I was treated with a combination of SBRT + IMRT on top of hormone treatment (1.5 years).

desperate for hope
Posts: 44
Joined: Oct 2016

Thank you very much. I'm so glad you commented and that you shared your traetment about SBRT and IMRT. Only high dose brachytherapy followed by EBRT were mentioned in the list of options given to us in a brochure for all PCa patients. It seems like your treatment options are not available at the cancer center we went to. 

We are seeing another Rad Onc at a bigger center this week. 

I attended a PCa meeting and a few men told me that if you have surgery, you can always do radiation after but if you start with radiation, surgery is not a likely possibility. Recent literature has reported benefits to survival for RP even for selected metastic patients. 

How have you been feeling since your treatment? 

 

Old Salt
Posts: 720
Joined: Aug 2014

Thanks for your concern. I am currently feeling fine.

Some background might be of interest to you and your husband:

When my urologist told me that I had several Gleason 9 (4+5) tumors in my prostate, I (73 years of age at the time) obviously worried. His proposed treatment plan would be (Low Dose) brachytherapy (to kill tumors within the prostate) followed by External Beam Radiation (IMRT; 45 sessions to hit the prostate in a more uniform manner, as well as tissues surrounding the prostate). Note that he did NOT propose surgery; bless his heart!

Although this treatment plan made good sense to me, I did explore other options. To make a long story short, I settled on a treatment plan consisting of three sesssions of SBRT, followed by 25 sessions of IMRT. Major reasons for this: 1. Much shorter (less expensive). 2. I really liked the radiation oncologist (academic; many publications; many patients) 3. State of the art equipment (CyberKnife for SBRT) at a nationally recognized cancer center.

Note that both treatment plans (urologist and rad oncologist) would superimpose hormone therapy. Initially, the plan was to go for 24 months, but based on recent findings (at the time), this was shortened to 18 months. I did not complain!

My PSA dropped to a low of 0.1 (during treatment) and after my testosterone recovered (this took about six months after the end of the hormone treatment) has held steady at 1.4 ng/mL for a year now. Published papers indicate that the biochemical control rate for the treatment that I received is about 70% after five years for HIGH-RISK patients. This means that I am not 'out of the woods' forever. But for now, I am extremely grateful for the care I received.

The side effects of the treatment were manageable and my current 'Quality of Life' is excellent.

 

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

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?

desperate for hope
Posts: 44
Joined: Oct 2016

Thank you for your comments.  I am very confused. The rad. onc we saw last week looked at the numbers and basically said outcomes are same: Radiation vs RP so whatever one you want. She didn't really seem to care actually. 

It seems like everyone acts in silos: Surgeon, Rad Onc and medical oncologist. 

No my husband has only had CT and Bone scan. Would a 3T MRI tell us if there is SVI, extracapsular extension or lymph node cancer? Am I correct that the improved information of a 3T MRI over a CT scan would enable us to make more informed decisions? 

Does ADT also lead to erectile dysfunction? My husband's overall priority is to prolong his life and enjoy his family and grandchildren. 

 

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

"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

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

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.

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

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 for hope
Posts: 44
Joined: Oct 2016

Your comments are much appreciated. Thank you. 

 

rooster02
Posts: 12
Joined: Apr 2016

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 6th 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 30th 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.

desperate for hope
Posts: 44
Joined: Oct 2016

I guess a big part of the decision might relate to your age. My husband is 60 and we have a son just entering high school. 

Did you consider adjuvant ADT at the same time as adjuvant IMRT? Also, what does NX mean? I thought the options were N0 and N1. 

Thanks again. I really appreciate your input

Will Doran
Posts: 207
Joined: Sep 2015

Desperate,

Sorry to hear of your husband's diagnosis.  All of our cases are different.  My case was simular to what Rooster02 stated. However my  PSA was 69, with a Gleason 3 + 4 =7.  I went to oncologists and weighed the options.  Decided on Robotic Assisted Surgery and had that Dec 2013.  Post surgery pathology showed one very small spot in one lymph node.  I was listed as a Stage pT3bN1.  Doctors said they were going to be very aggresive and they were.  I was treated as though I was a Stage 4.   After surgery, I started ADT and two months later started Radiation on the area where the Prostate had been , as clean up.  In two months time my PSA dropped to <0.010. I had 8 weeks of radiation 5 days per week, and two years on Lupron.   They had my Testosterone knocked down to 17.  Normal is 250 - 1,100.  My PSA has remaied undetectable since.  It had been holding at <0.010 for almost three years.  I've been off  the ADT (Lupron) for 9 months now, and my Testosterone is back up in the normal range .  It's now at 320.   With the "T" levels up, my PSA has come up a little bit to 0.035. They still call the undectable.  My doctors say that is OK for now.  If My PSA goes up to 2, then I will have to ga back on some form of ADT.  However we might have to start that sooner if we/they feel I'm in danger of Bone Involvement starting, or other spread.  I've had the same results as Rooster02 stated with followup MRI's.  I have Arthritis in my hips but my bones are otherwise fine, at this point.  I did have some bone density loss from the radiation and am currently on Prolia to help that situation.

Make sure and research as much as you can on side effects, from all kinds of treatment.  As I said and as others have said what works for one of us is not always what will work for everyone.  I've told you what I've been through and how that has worked to this point. That way if your Husband is given these options you may know that I have had sucess from these treatments, so far.  I was originally told that If I did nothing, I'd probaly have two years to live.  After all I've been through I'm 3 years past diagnosis.  My doctors are now talking 10+ years down the road and talking what the next treatments might be, if needed.  However I'm not saying what I did  is the only way to be treated.  Thats' why it's very important to get all the opinions you can and study all the options. 

Know that You and your Husband are in my thoughts and prayers.

Love, Peace and God Bless

Will

desperate for hope
Posts: 44
Joined: Oct 2016

Thank you Will. I appreciate you sharing your experience. I imagine that we will follow a similar course to yours but will wait for surgical findings first. 

Glad to hear your survived the RT and Lupron. I hope it wasn't too difficult. I'm afraid my husband will become another person. 

oldcoach
Posts: 3
Joined: Aug 2016

Will::: i have a similar situation.  After RP in January they found 1 millamenter in one node.  I was staged Pt2C N1  PSA has been undetectable for 9 months.  Dr. Said no further treatment.  all margins clear.  I had periniul invasion but all else ok.   Curious.  how much of a tiny spot did they find in your node.. Also, has anyone on this board know of getting a second opinion after the surgery from the pathology report.  Thanks  old coach

Will Doran
Posts: 207
Joined: Sep 2015

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

mikedayton62
Posts: 22
Joined: Sep 2016

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.

Will Doran
Posts: 207
Joined: Sep 2015

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

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi,

Have you completed all the tests needed to make a final decision yet?  If you don't feel that your doctors are giving you a good shake then I would consult other doctors until you find one or several that you feel comfortable with.  
Big decision to make, be informed, study, study, consult, you and your husband along with all the info can make the right decision for your particular case. PCa comes in many forms(inside or outside of the gland), each one has a tailored treatment designed by you and your doctors.

Dave

3+4

desperate for hope
Posts: 44
Joined: Oct 2016

It seems we cannot get an MRI which I understand might be beneficial to predict local spread to SVI, LN and ECE. We could go to the USA and pay out of pocket. I'm not sure what kind of MRI to ask for. 

Yes, making the best decision is critical because if things don't go well, then we can at least know we made the best decisions we could. 

 

 

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

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
Posts: 44
Joined: Oct 2016

Thanks for sharing this knowledge VGama. 

So is a PET scan better than an MRI for finding localized spread? It seems everyone in the PCa world gets an MRI but here, they are very difficult to get. We have asked many times. 

The good news is that we saw a Rad Onc at one of the best cancer facilities in the country. She was amazing. It was the first specialist we met on this journey that actually seemed to care and to want to do everything to give my husband the best outcome possible. She said she wanted to review the scans and also the pathology. She said that typically for very high risk cases, she'd do ADT followed by high dose brachytherapy followed by EBRT. She examined my husband and said that the prostate was quite mobile and that she didn't feel any nodules. In her estimation, it was a T2. (music to our ears)

Today, she called and said she'd been thinking about my husband. (how I love this doctor!!) and was concered by what appeared to be a bladder neck extension. She said if this was the case, surgery would be the better option. She was having their radiologist review the films and was going to discuss the case in their group meeting today. 

As you wrote VGama, this doc said ADT has a "sensitizing" effect on RT and that's why they're used in combination. Also as you wrote, in her call today she said she wanted my husband to start ADT right away- regardless of the ultimate choice that is made. In fact, my husband did begin ADT with the other urologist, mainly as a means of buying a bit of time, reducing significant stress and hopefully stopping cancer growth. We realize that there is no evidence that neoadjuvant improves outcomes but there is no negative effect either. 

Another thing this doctor said was that it was not exactly correct that failed RP can be fixed by RT but not the other way around. She said it was important to know why there was biochemical re-occurrence and to find the source. She said rarely is the source the prostate if there is a failure after RT but in the rare case that it was, surgery could still be done at their center. 

I can't tell you how much it means to find a doctor who sees my husband as an individual and wants to do her best for him. 

Thanks again for your contribution!

 

 

 

 

 

Old Salt
Posts: 720
Joined: Aug 2014

As I wrote earlier, a triple attack is appropriate: ADT + radiation + boost radiation.

Whereas I got ADT + SBRT + IMRT, the SBRT 'boost' (apparently not available to your husband) can be replaced by brachytherapy. This is what my urologist originally recommended. I decided to substitute SBRT for brachy (see my earlier post), but the fact is that the dosing for SBRT is based on what the radiation oncologists learned from (HT) brachytherapy.

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

Hope,

I call you now Hope because you may be, by now, less desperate and more confident due to the knowledge you have already acquired.

Unfortunately to your husband and many young fellas, GP doctors rarely do screening for prostate cancer. Cancer is mostly found when symptoms arise. Treatment follows typically the same pattern so that men should know a little the basis and demand screening (PSA) starting at their 45 years old. However, rare are those that know the meaning of the word "PSA".
The guidelines provided by the Urologists' Associations should be blamed not only for not recommending the screening earlier but also for their recommendations regarding diagnosis. As you comment above, most doctors get image studies with equipment and techniques that are only feasible to those cases already advanced (probably with apparent symptoms). Traditional CT or MRI cannot detect cancer of small sizes. Most urologists know about this but they follow their institutions recommendations, get the tradition CT plus bone scan and deliver diagnosis with false negatives.

My lay opinion on your husband's aggressive case is that he should check for any metastases in close lymph nodes. This information would weigh in the type of preferred treatment. Exams using techniques that fuse data in 3T-MRImp, using choline based contrast agents, or (still better) in a PSMA PET exam, are the best choice. However, I am not sure if the PSMA PET is viable for HT patients (ADT influence). You need to inquire with the radiologist.
 Another point to consider is that these exams are usually not covered by NHS system (Canada and Europe) so that one must do the exam under his insurance policy or go privately at his own expense (about 2,500 Euros).

The doctor you met seems to be good in both aspects. He/She is up-to-date with newer techniques and therapies, and spends time with the patient explaining details and discussing openly. Trusting our doctor is very important when we know little on the matter.
I wonder about the doctors' comment on the bladder neck extension. Is she referring to cancer? Usually an extension at the base of the prostate (near the sphincter) relates to hyperplasia and it is usually accompanied with urination problems/symptoms (urgency, etc). The protuberance (upwards) can also press the seminal vesicles that could lead to a lack of ejaculation. Can you tell if your husband have had any similar experiences?

A reliable image study is highly recommended to verify if T2 is the proper clinical stage for the choice of surgery. It will also check for such extensions and the results can be used to "map" the proper field for a radiation treatment (solo or adjuvant). Investigate on the possibilities.

Best wishes,

VGama

 

desperate for hope
Posts: 44
Joined: Oct 2016

My family has suffered in the worst way with the system as my daughter died from medical error many years ago. It has meant that trust for us is a huge issue. We used to trust physicians automatically but we don't any more. So this wonderful young, very smart doctor is a real God-send to us. 

She called again, on Friday evenning (imagine that!) to tell me that she was concerned about the bladder neck extension. The radiologist for the TRUS wrote that there appears to be a BPH extension into the base of the bladder and that bladder cancer should be ruled out. She presented my husband's case to the team and there were divided views. She said that if the extension is cancer then surgery would be the better option because she wouldn't want to radiate so close to the bladder. She has spoken to the surgeon and moved up the date of the appt to sometime in the next 2 weeks. She said she'd leave it to the surgeon to do more imagine and/or a cystoscopy. 

The reason I was concerned about the extension was because a publication about very high risk PCa by Mayo included this:  

Our preoperative evaluation for patients with high-risk PC at Mayo Clinic includes bone scan as well as cross-sectional imaging, most frequently with prostate MRI. MRI may be used not only to assess for pelvic lymphadenopathy but also to evaluate local tumor extension, for example, into the neurovascular bundle, seminal vesicle, urethral sphincter, and bladder neck. Such information may then assist with operative planning, for example, as a component of the decision regarding the extent of nerve sparing. As well, if there is a suspicion for bladder neck invasion with cancer based on this evaluation, we perform preoperative cystoscopy.

So I asked the first urologist about this and he kind of shrugged and said he'd "cut wide". I wasn't pacified by that response. We are so very fortunate to have a specialist who cares who is at the top academic, high volume cancer center. 

The doctor told me that there is a very small chance that the prostate cancer has invaded the bladder which could mean removal of bladder but not to worry about that. I told her our greatest worry would be not to have trust or faith in our medical care and we can't thank her enough for being so thorough. She said, "just doing my job". 

My husband experienced urinary problems in the weeks preceding his PSA, which is what prompted him to go to the doctor. His prostate is actually not that enlarged. (45 cc) I researched and found that transition zone PCa can egress into the bladder. Also of note is that he had no external nodes, further suggesting transition as opposed to peripheral PCa. His biopsy numbers are not suggestive of transition zone PCa but I don't think it can be ruled out. 

Thank you again for your comments- I'll tell the surgeon that if there is an image that it not available here, we would pay and go to another country if necessary. 

 

 

 

 

desperate for hope
Posts: 44
Joined: Oct 2016

Thanks again!

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

I don't know where you live in Canada, but in Arizona, there is a high tech pet scan, better than the vast majority of PET Scans that is available, I think for about $3,000.00. You could probably call Dr. Almeida or his staff for more information

Here is information about this pet scan. I live in CA. and I know many who have gone here for imaging.

http://paact.help/update-c11-acetate-petct-in-prostate-cancer-fabio-almeida-md-2015/

There are other locations in the US that offer high tech PET SCANS. Another location is the Mayo Clinic. I personally do not know anyone who has used this facility, but here is information from them. Note that they use choline instead of acetate....for some reason I remember reading that the acetate is better.

http://www.mayoclinic.org/tests-procedures/choline-c-11-pet-scan/details/mayo-clinic-approach/orc-20157001

 

 

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VascodaGama
Posts: 3013
Joined: Nov 2010

Hi Hope,

My comments above match what the doctor told you regarding the enlargement of the prostate upwards. This is the missing information for your she-doctor to decide on the RT protocol.

I think you should request her to help you in procuring/obtaining the proper image exam, not just a suggestion. Tell her about the 68ga PSMA PET or the Mayo’s fusion 3T-MRI mp (multi parametric) using choline (C11 or F18 flurocholine). I believe she (a radiologist) knows about these tests and their efficacy in clear doubts, including the info on lymph nodes “infestation”.
Please note that she might think difficult the access to those clinics making the studies out of Canada. Her referral will be required (just my guess). Do your best investigating possibilities. Use diplomacy when talking with her.

Prostate (base) protuberance upwards is typically benign hyperplasia. TRUS done will color (Doppler) may identify if there is any probability of being cancerous, but it wouldn’t provide a clue on other localized tissues. A cystoscopy will provide a view of the inner bladder walls and neck (sphincter) but cannot identify cancer. It will just confirm the anomaly.

Regarding your comment on the transition as opposed to peripheral PCa, please note that the negative DRE cannot access the whole capsule. I think that the biopsy does not provide info of the particular area so that she has demanded further investigation by the urologist. In any case, being all cores positive it means that cancer is found at all zones including peripheral. The prostate size of 45cc is above normal (25 to 30cc); the increase is part due to hyperplasia, inflammation and cancer. The pathologist may have included in the report such findings, but only from the sample tissues. The urologist can opt for an image study or an extra needle biopsy of the tissue in question.

I would recommend you to take notes of the conversations as the volume of information increases and may become confused.

Waiting two weeks for the appointment is comprehensive. Meanwhile you can continue your good work investigating if there are clinical trials for sophisticated image studies running in Canada. Many of this exams are only available in trials. You could contact in advance some clinics (in Canada or outside) and gather info for the next meeting with her.

Best wishes.

 

VG

desperate for hope
Posts: 44
Joined: Oct 2016

Thank you VG. 

I don't suppose the TRUS was done in color or the radiologist would not have written that cancer needed to be ruled out. I realize that the prostate is larger than normal but based on the calculated volume, the predicted PSA was 6 which was much smaller than the actual of 28. I know that low volume (for PSA) is not a good indicator. 

The hospital has a 3T-MRI mp and PET  but not PSMA PET. I googled to find out more and low and behold I found an newsletter article by the urologist we will soon see and just as you wrote, he stated that the only way to get a PSMA PET is through a clinical trial. (How do you know so much VG?) He concluded by writing that if you are interested in a trial ask your doctor for guideance. 

I did find a clinical trial - https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/view?cdrid=761748&version=HealthProfessional&protocolsearchid=6411918

 Are these new PET scans not available even if a patient pays?

The urologist spent a few years at Sloan-Kettering so he's on current with all that's new. Is the patient generally responsible to pay for transportation to the clinical trial? 

Regarding transition vs peripheral, is it not possible for the tumor to start in the TZ and spread outwards such that all cores would be positive? 

So much to learn! I can only read publications on "very high risk" for so long before it becomes depressing. I know it could be worse but the fact that GPs didn't mention PSA twice in the last 5 years during physicals makes it difficult not to be consumed in anger. 

Thanks again VG. 

 

 

 

 

 

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

Hope,

I like to read your posts. You have advanced a lot in the diagnosis investigations touching the wound. Now you need to look about the treatment, their risks and the side effects.
My wife and I went crazy reading everything with two piles one foot high of internet outputs and two books that lead to a final decision. It took us two months of investigation and second opinions. Diagnosed in May and surgery in August 15, 2000. You can do it. Your husband is fortunate for having you so involved in his care.

Your guessing in regards to the PSA is correct. Gleason pattern of 4 and 5 cells produce lesser amounts of the serum. They are poorly differentiated and deformed without any healthy cell characteristics. The nucleus may not exist already. The excess PSA (above 6) could be from those cancerous cells of lower Gleason patterns, also existent. The pathologist only indicates the two most voluminous and aggressive types he found. The high PSA is very indicative of extra capsular extensions that could have colonized in the travelling route used by PCa. First stop: the Lymph nodes.

The biopsy needle bores a piece of tissue about 2.5 cm long (the diameter of the prostate not only half of it), therefore includes all zones. However, 12 needles (planned strategically) extract only a tiny portion (in percentage) of the prostate. The in between tissues could be benign or of different Gleason rates. The pathologist report (I hope you have filed a copy for use in second opinions) indicates findings by percentage of each needle, including their location.

In the past 5 years there have been huge jumps in the “discovery” of newer image study techniques and compounds (contrast agents and radiotracers), more reliable than the traditional exams. The equipment capabilities also have improved a lot in regards to better image resolution and software (creating images as close as the real setting), in terms of sensitivity and specificity. These have been put into trials (solo or combined) for checking safety and outcomes. Typically, clinical trials pass three phases till obtaining its approval for the use in the open. Some guys luckily find clinics doing the exams “off-label”.

In any case there are already exams that have finished phase III trials, now in practice. The data is reliable and many can have them at particular clinics where they accept insurances or private payments. Clinical trials are free of charge and safe but are conditional. The trial link you provide above is the phase 1 still confirming doses. It also requires two years of surveillance that may prohibit any earlier treatment. Surely one can have the picture and give up in the middle of the trial to pursue what one most wants or needs.

Results in images differ among used contrast agents, but these newer image exams are all much better than the traditional. You can find articles in the net regarding the trials together with notes comparing the results, therefore providing ideas from where to choose. We have discussed the matter here before in these links;

https://csn.cancer.org/comment/1544651

https://csn.cancer.org/node/305239

https://www.ncbi.nlm.nih.gov/pubmed/26112024

https://www.ncbi.nlm.nih.gov/pubmed/26795286

http://cancerforum.org.au/forum/2015/november/advances-in-the-imaging-of-the-prostate-in-the-setting-of-elevated-psa-levels/

https://clinicaltrials.gov/ct2/show/NCT02611882?term=thomas+hope&rank=1

C11 and F18 choline are widely in use already. The F18Sodium Fluoride PET is the best for scanning bone metastases but the PSMA PET with radiotracers, such the 68 Ga (Gallium) and the LU-177 (Lutetium) can do the job in both; bone and soft tissues. There are several other radiotracers on the drawingboards, being one of them the DCFPyL of the trial you indicated above. These tracers combined with one positron-emitting isotope, such as the fluorine F 18, provide accurate location of prostatic cells. ProstaScint is the oldest in the market of image studies. There initial techniques provided may false negatives or false positives. They have launched a newer radiotracer with success but I have no details.

Lu-177 traces and kills the cancer on the spot. I expect Lu therapies to be the future in cancer treatments. There are several clinics doing this expensive therapy in Germany. Here are locations and prices just for reference;
https://bookinghealth.com/programs/treatment/urology/prostate-cancer-with-metastasis-lutetium-177-psma-therapie/germany?gclid=CLWtzsPf4c8CFUE_GwodKIAN5A

 

Sorry for the extensive and confusing information that may cause you more stress. Go slowly.

Best wishes.

VGama

desperate for hope
Posts: 44
Joined: Oct 2016

Thank  you. So much to absorb. Fortunately, I have access to journal articles. Today we had a new curve thrown at us. I'll start a new post

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VascodaGama
Posts: 3013
Joined: Nov 2010

refer to above

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Did it to me too in another thread.  Save the message but haven't tried to resend it yet.

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