New here: Husband has very high risk localized PCa

VascodaGama said:

Insist in a reliable image study for final decision

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

 

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. 

VascodaGama said:

Clinical Trials for image study

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

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.