Newly Diagnosed as "High Risk" and Confused Beyond Words

hopeful and optimistic said:

To emphasize

The side effects of each treatment are cummulative. Surgery is a localized treatment and will not cure in your case. It will be redundant, and can cause additional side effects.

Since prostate cancer is multifocal, the 3T MRI may not be able to detect extracapsular extenstion of small lesions, that is the cancer outside the capsule. As the two surgeons indicated, it is almost 100 percent likely that the cancer has escaped the capsule for the reasons that you stated.

The results from a PET scan may indicate where the cancer is located outside the capsule so the radiologist can direct to that area(s)

FDG-PetScan

https://www.ncbi.nlm.nih.gov/pubmed/27825430

There are various PET scans available to include FDG with Acetate, available in PHoenix, Az, Dr. Alemeda..............VG has studied this more than I, and may provide info on whether the FDG Pet scan that you had on thursday, will be effective in best determining where the cancer is for your situation

 

Regulator, we are here for you

 

Hopeful:

Thanks for your continued support and warm sentiments as well. I'm most grateful to you.

As I told ASAdvocate (above), I will be adding some more testing/imaging details here in a few moments, including the results of the recent FDG-PetScan, so please refer to that posting also for additional details in response to your posting here. But I think your comment that "surgery is a localized treatment" is at the absolute heart of my particular diagnosis and prognosis, and its what makes the impending decisions so difficult. As you will see in the posting yet to come (below), the recent FDG-PetScan results were completely "negative" . . . "no abnormal FDG activity detected" anywhere in the entire head-to-thigh scan, including the head and neck, chest, abdomen, pelvis, osseous structures and lymph nodes. Nothing!

This means that other than the grim biopsy results of 4+4=8 in a single core, ALL subsequent imaging has failed to elucidate extra-capsular anything (!!), not two CT scans, not a bone scan, not two separate and distinct 2T/3T MRI's, and not an FDG-PetScan. So, I ask you . . . wouldn't the average lay person and/or trained radiologist consider that collective array of imaging exercises to be relative proof of "localized" disease? Because if not, I'm deeply, deeply confused.

If in-fact, these various imaging gymnastics are ALL wrong, and the disease is in-fact NOT "localized" (i.e., it has spread and they ALL missed it), then going forward, what possible future treatment process is going to provide confirmation one way or the other, OTHER than surgery? That (in a nutshell), is my dilemma.

Grinder said:

I understand...

We understand your frustration, Regulator.

I, too, was very frustrated over the Parkland shooting recently.

I just had a laser cut a flap off my cornea, shape the lens to exact micro-specifications, then lay the flap back over and heal to perfect vision in a matter of a few hours...

Yet, we have no way to remotely disable and disarm a school shooter. A stun gun won't work because they have to be wired to the power source and are not all that accurate, certainly not as accurate as an AR-15.

40 years ago Star Trek was imagining inventions that were in process... whatever happened to "set your Phasers on stun"?

This should be the #1 priority of American invention, making schools safe.

Its not just the state of medicine.

Great point, Grinder! And I fully agree. Its not just medicine - its literally everything.

Old Salt said:

That's a bit harsh

One needs to realize that just a few cells that have moved beyond their physiological boundary can, IN DUE TIME, give rise to medically relevant cancer (metastasis). 

Yup! Knew that was coming, and I'm good with it ;-),

But lets be fair - you cannot deny me the fundamental point that was made there. I think that you, and I, and virtually everyone else reading this thread, can probably admit that however small or large, there is a distinct likelihood that the reported 'negative' results of this most recent FDG-PetScan are very much like the reported 'negative' results of all previous imaging exercises that I've undergone . . . it could very easily be yet another "false negative". And in my book, as a trained scientist myself, that's a rather "dismal" performance record by pretty much any standard of measure you choose. In fact, in the line of work that I retired from (instrumental/analytical chemistry), if I had reported five-out-of-five 'false negative' results, I would have been terminated on the spot! Fact!

And another point to be made for comparison . . . we often talk about micro-metastasis and single cells as though its an insurmountable challenge to track them or detect them, and unfortunately, at least at the present time, that is quite true. Yet by comparison, using present-day instrumentation, we're routinely able to detect, distinguish (or identify), and accurately quantify a 'single' molecule of PSA floating amidst a sea of 1-Billion or even 1-Trillion other molecules (i.e., 1-ng/mL and 1-pg/mL, respectively). Thus, my point remains - there is considerable room for improvement in present-day imaging technologies, and I trust that someday soon, they will be developed. In fact, I'm quite sure of it! 

VascodaGama said:

Safety first, pleeeeease ......

Regulator,

I agree that today's approved equipments/techniques in image capabilities to locate cancer do not satisfy what we would expect. But if we compare the present modalities against what existed 18 years ago (at the time of my diagnosis) then we may feel fortunate for having been diagnosed today. Systems delivering radiation are also better and there is higher understanding on each treatment outcome.

One problem we all confront is the safety standards that have grown in number and perfection along the years, in all matters of a society. In the medicine, it is common to take ten years (from the invention, through the trials to the approval of the FDA) before we can grab a drug/treatment that we all know to exist already. I can accept the delay but I disagree that we are offered modalities or therapies that are known to be obsolete.

I am glad for knowing that there are no far metastases. I wonder what the FDG-PET exam identified. Can you provide a copy of the report? In terms of SUVs, what was the distribution?
In localized cases, where several therapies may take place, one needs to consider the quality of life after treatment. Balancing is important.

A note on your comment about the Voyager-1, I am also fascinated with the progress and improvements done on space explorations, we have been assisting along the 40 years since Voyager's deployment. The more resent Rosetta affair (2004-2014) that set foot on a moving Comet with 4Km wide (ball of ice and dust), is an extraordinary accomplishment by man. I wonder if a portion of the budget used in such space exploration, has been placed in medicine researches, we would have get rid of cancer for good today.

Well, one can think that the bandit will also enjoy a trip to Mars and beyond.

Best,

VG 

VG,

Personally speaking, I'm afraid I don't quite know what to make of the 'negative' results from the recent FDG-PetScan. Given all of the gloom-and-doom language and dire predictions that I've experienced from multiple medical professionals since my initial diagnosis in February, I have essentially been put 'on-edge' about the validity of ANY imaging results. In other words, doctor after doctor has repeatedly forewarned me that given my high Gleason score, the high PSA, and the quick PSA doubling time, I should essentially "expect" bad news at each and every turn, including to "expect" reports of metastatic disease of some form from CT scans, bone scans, MRI's and PetScans. However, in practice, that has not proven to be the case, which causes me to question the accuracy/validity of this most recent PetScan. In other words, given the expectation that this PetScan is highly specific and should have been 'positive' in some way or another, I am now concerned that the 'negative' result in this instance may simply be another 'false negative' of some kind, and that perhaps there is in-fact some form of metastasis somewhere yet to be identified.

And this fear would seem to be well-founded for several reasons:

First, most of the other imaging exercises that I've completed to-date have resulted in 'negative' results. Although the recent 3T-MRI test did a marvelous job of defining the size and location of the 2.6 cm (1.0") tumor at the right base of the prostate, it showed "no extra-capsular involvement", and the initial CT and bone scans were also both 'negative'. Now, we have yet another scan (an FDG-PetScan) which purportedly shows "no abnormal FDG-activity" in the head, neck, abdomen, pelvis, osseous structures or lymph nodes. To be clear, I have yet to discuss these findings with my oncologist(s), but significantly, the report makes no mention whatsoever of any FDG-activity in or around the prostate itself (??), which seems extremely odd to me.

If the prostate itself has an exceptionally large (1.0") nodule at its base (which was confimed by 3T-MRI on 6/4/18), and it is literally a "furnace" of cancerous activity, that is cranking-out cancerous cells en masse as well as super-elevated levels of PSA at a very brisk rate of speed (i.e., rapid doubling time), then one would certainly think that cells throughout the entire prostate gland would have absorbed the F18-glucose-based (FDG) isotope and lit-up like a Christmas tree when scanned. Yet there is NO mention of any FDG activity in and around the prostate itself. Why? This lack of activity at the very core of the cancer (at the very heart of the tumor itself), seems highly suspcious to me, and tends to bring the overall results of the PetScan into question, in my view.

The only "positive" hypermetabolic FDG activity witnessed or cited in the entire PetScan report was in the "Chest" area. It indicated multiple foci of increased FDG activity (as noted in fully quoted text of the radiologist's report below), but the radiologist concluded that these "posterior pleural based opacities and nodules" - "favor infectious/inflammatory process and are less likely to be isolated prostate cancer pulmonary metastases."

~~~~~~~~~~~~~~~~~~~

Per your request, here is the fully quoted text from the radiologist's report for the recent FDG-PetScan:

BEGINNING OF REPORT

"FINDINGS:

HEAD/NECK

No abnormal FDG activity.

CHEST:

Multiple foci of increased FDG activity noted correlating with dependent pleural based soft tissue nodules including: Semi-solid 8mm upper right lobe, SUV max 5.2. Superior located hyperdense 7mm right lower lobe, SUV max 6.6. Superiorly located ground-glass 6 x 9 mm right lower lobe, SUV max = 3.4. Noncalcified superior aspect of the left lower lobe measuring 11 x 10 mm in dimension, SUV max 5.8.

ABDOMEN AND PELVIS:

No abnormal FDG activity.

OSSEOUS STRUCTURES:

Additional noncontrast attenuation CT findings: No significant cervical lymphadenopathy. No mediastinal lymphadenopathy. No focal airspace consolidation in the chest. There are multiple posteriorly pleural based nodules as described above. No acute intra-abdominal process. No significant retroperitoneal mesenteric lymphadenopathy. No acute fracture or vertebral end plate destruction. No lytic or blastic lesion.

IMPRESSION:

1. Multiple foci of FDG hypermetabolism correlating with postyerior pleural based opacities and nodules. In the setting of no demonstrable mediastinal or hilar lymphadenopathy, finding favor infectios/inflammatory process, less likely isolarted prostate cancer pulmonary metastases.

2. No hypermetabolic masses lymph nodes are identified to suggest metabolically active disease. However, FDG PET has limited sensitivity in the setting of prostate cancer."

END OF REPORT

~~~~~~~~~~~~~~~~~~

Max Former Hodgkins Stage 3 said:

Don't read a lot into it....

regulator,

PETs and CTs for PCa metastasis are of little value, except in extreme cases of massive, late involvement.  

No images on a PET is no proof against metastatic PCa disease.  Your most authoratative data are PSA and Gleason, and they are what must guide you, prior to other definitive proofs. If I had been your oncologist, what I would have told you pre-PET would be to expect "no hits at all on the PET, regardless of metastasis."

It seems you have exchanged many thousands of words regarding this issue above. This report, in my read of your situation, changes nothing at all.  I would guess that you have at least some degree of micrometastasis at this time.  An educated GUESS.  That is, the same thing our doctors use.

max

Max,

Thank you, and in retrospect, I couldn't agree more. Personally speaking, I mistakenly put far too much faith in the value of advanced imaging and its ability to provide definitive evidence of the presence or absence of "containment" (i.e., metastasis), and in the end, that single mistake cost me a great deal of value time. I'll quote myself here from a recent posting on another thread, because this pretty much explains how I got caught-up in it:

"Chucket:

As a recently diagnosed high-risk patient myself, I am days away from a final decision on my first-line of treatment (i.e., RP/ADT or RT), and I have just today begun initial but long overdue treatment with Casodex. However, if I have ANY regrets at all, its the misguided faith that I put into advanced imaging techniques and their potential to clarify things with respect to metastasis.

VascodaGama said:

Almost there

I agree with you. The results are not satisfactory and do not accomplish the purposes. FDG is known to be less effective in indolent prostatic cells for the low consumption of the glucose. A tracer with Choline would have been more specific. In any case, I wonder if the exam was done properly. The time of administration of the substance must coincide with its half-life. FDG-F18 has a half life of approximately 110 minutes. The scan usually is portioned in two major areas (the pelvis and the whole body) so that the timing for the drugs administration is spaced. Usually they start at the pelvis as soon as the radiopharmaceutical is administered, and then the patient waits at a quiet separate room for about 45 minutes returning to the machine to continue the scan. The resting period allows the assimilation of the substance throughout the body. The last lot starts in the head, then the chest, abdominal and pelvis. The exam takes about three hours. Can you explain if my example is similar to what was exercised in your exam.

You have received several ideas from the survivors here. I think that you should do your judgment based on all findings including those that are possible erroneous and chose an option. Remember that even if you got a none contained case, surgery can be used to debulk the bigger tumor (the whole gland). You can then wait while recuperating and check the PSA during a period of four to six months. Later you can proceed with a combination of ADT plus RT if and when the PSA shows aggressivity. You will confront more side effects but the unmasked PSA will provide you with a realistic aspect of your status.

What ever you decide, chose the best in terms of facilities and experience of physicians.

Best wishes,

VG

I understand and appreciate your skepticism surrounding the recent 'negative' PetScan results, and whether or not the imaging test was even conducted properly. This too has been a concern of mine from the very beginning. To help answer your question regarding the procedure itself and how it was conducted, including the timing of the intravenous injection of radioisotope and subsequent scanning, here is the quoted text from the radiologist's summary report:

"PROCEDURE:

The patient was evaluated with a dedicated PET/CT scanner. Upon arrival, the patient's fasting fingerstick blood glucose level was 119 mg/dL. 16.4 mCi of 18-FDG was injected IV at 11:42 hours, and 87 minutes post-injection, CT attenuation-correction images and then subsequent PET images (attenuation-corrected and emission-only images) were obtained from base of skull to thigh. PET, noncontrast-attenuation CT, and fused PET/CT images were then reformatted and reviewed in the axial, sagittal, coronal and 3-D maximum intensity projection planes."

In closing, despite my rather extreme biopsy and PSA particulars, I am still holding out hope for RP surgery, and I have several more appointments in the days immediately ahead, but one way or another, that decision will be made for me by circumstances, within the next 10-14 days.

Thank you again for your continued contributions, expertise and support.

hopeful and optimistic said:

.

Heart healthy life style  is prostate healthy and diabetics healthy.

As you realize heart disease is epidemic. We, those who are diagnosed with prostate cancer as well as those who have not are most likely to die of heart disease.

Additionally there was a study among men who have had prostate surgery. The men who ate high fat dairy and meat had more aggressive cancer when there was recurrance than men who ate in more healthy manor.

http://csn.cancer.org/node/315030

http://csn.cancer.org/node/312744

I for one have changed my life style, so I exercise every day, and eat a veggie based diet; no meat or dairy....I do eat some fish.

Hopeful,

Thank you! There is no doubt that nutrition is a critical component to overall health, and although it is likely to be of no real consequence in reversing, impeding or even mitigating the present state of one's disease, there can be no doubt that it becomes especially important in moving forward after diagnosis. Accordingly, I am focusing quite hard on making meaningful adjustments to my daily diet and eating habits. Thanks again.