Good morning and thank you for all you do. On January 28th my oncologist said I had prostate cancer and needed to have a prostatectomy within 3 months. My Gleason score is 3+3=6, my biopsy should 2 positive samples out of 12 with less then 2% in one and less then 10 % in another. My PSA previously was 1.7 and on 9/27/20 it went up to 3.5 after a 10 hour bicycle race which I told my urologist about and he said don't worry about it. Since then after 5 days off the bike, no sex and no digital exam it went back to 1.7. I had a consult at Memorial Sloan Kettering on FaceTime. He told me I was a good candidate for active surveillance. I mentioned that My Decipher report suggested High Risk and I have a palatable nodule on my prostate. However, the nodule according to the MRI responds to a prostatic cyst in my prostate and the MRI says no lesions found. Arthritis in lower back and hips prevalent. I have been considering Proton therapy and would NEVER have surgery! Quality of life is the most important aspect to me. Now the Radiologist says he might want to do Hormone Therapy due to the Decipher results. So I called Decipher and went over everything with him. He said he would never use one result from all the tests to judge what treatment to use and suggested since I'm an athlete to really research Hormone therapy before doing it as it would greatly affect me as an athlete. I think the most frustrating thing is how every doctor is so all over the place from one extreme to the other. I feel some treatment is necessary due to the nodule, whatever it is, the fact that my life expectancy is 10 years or more since I'm 68 and VERY ACTIVE. My symptoms have been ED and difficulty urinating even though according to MRI and other tests my prostate is only mildly enlarged. I know this is a lot of information but I wanted to give as close to the big picture as possible to hopefully get some good advice from someone with similar experiences or with more knowledge on the subject. I have spent hours on the internet, I have read 5 books on the subject , watched many youtube videos and can't seem to get anyone to look at the big picture and recommend a plan. Thank you all in advance and sorry for the long message.
Gary's Case: Good morning and thank you... - Advanced Prostate...
Gary's Case
Yes, I thought that was obvious. I gave the big picture and explained how the doctors have been all over the place as far as what to do. Surgeons want surgery, Radiologists want to do some sort of radiation etc. I'm looking fro advice, recommendations as I said as far as a plan of attack looking at all the data. Thank you
Hello DC,
R U on STRAVA??? My FULL MOON ride thus past weekend strava.com/activities/50252...
FIRST OFF, IMO you need at least a 2nd opinion on biopsy but also keep in mind that a TRUS biopsy samples very little and a 3TmpMRI can still miss PCa as well as the interpretation could be in error. As an endurance cyclist, I'm going out tonight for an OVER NIGHT 100 miler and being diagnosed 6 years ago this week just 2 weeks before IRONMAN70.3FL that I had to cancel, I personally would think more than twice about surgery/radiation IF IN ACTUAL FACT I WAS 3+3 with less than 3% and 10%.
BTW, the ride was on my 40+ pound semi recumbent DAY6 Journey so it was VERY SLOW to the point where I actually nodded off briefly, went into a yard then fell over because I didn't unclip quick enough. My follow-up ride Monday at 3:56AM was to retrieve the coffee flask that popped out of my jersey pocket and thanks to STRAVA I was able to go back to the exact spot.
strava.com/activities/50307...
I just requested to follow you on strata. I have had a 2nd opinion on my biopsy pathology by Dr Epstein. He confirmed it.
Done. Vero Beach = cool. Nice swims. EXCELLENT r.e. Dr. Epstein 👍 I agree with others mentioning AS, just wanted the more experienced here to recommend first. 3+3 = time on your side
Addicted is quite the cyclist when he isn't dodging wild animals. He is an artist on a bike. I am a cyclist and have advanced PC and it is very different than A2C's as is yours. My treatment was also very different than his. I agree with his conclusion you have time to study more, so take it and keep reading and questioning. This forum and the accompanying Prostate Cancer Network has a lot of good information. I found it after I made my decision for Radiation. Radiation was not a problem for me but all of these treatments affect each of us differently. ADT has not been much of an issue and for road cyclists it has some added benefits, loss of upper body muscle unless you keep up with weights, loss of body hair so no shaving legs. More room in your bike shorts cuz the junk gets smaller. Anyway I wish you the best in whatever you decide, ask as many questions as you want, it may take a little while but somebody should respond if they feel they have some insight.
Not sure what a "semi"-recumbent is; I googled, and they looked pretty recumbent to me--perhaps you could post a link to what you have.
I'm still on my road bike (what some recumbent riders refer to pejoritively as an "asshatchet")--the same one I raced on 35 years ago. But post-surgery has been difficult; have tried several saddles. I may try a shorter stem to be a bit more upright--who knows? I may ultimately give up the "asshatchet".
dentaltwin wrote >>> "Not sure what a "semi"-recumbent is... " Think back to SCHWINN TYPHOON days of sitting straight up, over-built bike that weighs a TON compared to recumbents that are lower, meant for more spirited/faster/longer riding.
DAY6 Journey --- day6bikes.com/journey/ JUST scroll down and mine is like the OLDER White one.
Today's ride had the final 30 miles on "FIREBALL" (bike's name since on the first ride at 5:35AM I saw a FIREBALL, reported it and had the siting verified by 41 other people in FL, Ga, S.C. and Al.) after 71 miles riding my 2018 Specialized Roubaix Expert.
strava.com/activities/50510...
Thanks!
Difficulty urinating can be due to enlarged median lobe of prostate which is not felt on a DRE. Medication can help if that is causing your urinary symptoms. If you are getting a testosterone level; get both free and total testosterone levels and a DHT level as well. As Nal says it is important to see entire pathology report as well.
I suggest you keep researching Gleason 3+3, because it is ultimately going to be up to you to decide how threatened you feel by a "lower-threat" cancer. But I would also suggest that surgery (or any other radical treatment) within a strict 3-month time frame is not actually a dire "need" but simply what that particular doc recommends. (As I'm sure your research has now told you, nothing catastrophic happens exactly at Day 100, or whatever arbitrary day he'd like to pick.) How quickly or slowly you take action probably has less to do with the actual threat posed and more to do with your tolerance for the uncertainty that comes with inaction.
Many researchers and docs now suppose that a true 3+3 may likely be indolent and merits close watching rather than immediate removal, radiating or hormonal therapy. Further investigation by you may make you more comfortable with this idea, or less comfortable, depending on which sources you have more faith in. But as you may know, the biopsy is not always accurate, and the surest way to be sure of a true 3+3 pathology is to examine the removed prostate. (Removing the prostate in order to find out if it needs to be removed, however, does not seem like the most logical way to proceed.)
In spite of a "high risk" genomic report, you are still in the lower risk groups. Dr. Chapin says: "I typically don’t use genomic-based testing for Gleason 6 cancer because the pathologic diagnosis of the tumor and the clinical information derived from examining the patient are usually enough to tell me the patient is unlikely to develop metastases or die of his disease."
Have your docs all confirmed with certainty that the symptoms of ED and difficulty urinating are caused by the actual cancer, and will be relieved by treating the cancer as potentially lethal cancer? Are the symptoms progressively worsening and impacting QoL? Because if the threat to your longevity by cancer is of low or very low risk, and QoL is of high importance, one possibility is to just do what you can to best treat those symptoms while actively monitoring the cancer. If the most appropriate treatment for the ED and urinary symptoms turns out to be treatment for cancer, then great.
At least one respected urologist has noted that some docs prefer to treat cancers that are not in need of treatment, rather than addressing QoL and treating patients for the symptoms that are impacting it.
Thank You, that was the most helpful answer so far. When I went to the 1st urologist about 2 years ago he said I had a hot spot on my prostate and it was painful so he put me on Cypro for a month. He also tried relentlessly to convince me to have a Urolift but said there was a 70% chance it would give me a 50% improvement. I didn't like those odds or his sales pitch cause that was the procedure he does. I found out I have a slightly enlarged median lobe which would not be helped by Urolift so found a Center of Excellence that does both Urolift and Rezum. However, after the digital he said there is no such thing as a hot spot and that I have a nodule which we need to find out what it is before we can do anything. So now here we are with the MRI suggesting the nodule corresponds to the utricle caste in my prostate even though 2 samples from the right side came back positive for cancer. So basically I feel due to the nodule, whatever it is, hopefully my life expectancy being more than 10 years and my symptoms that active surveillance was not appropriate. But if cancer treatments are not going to help my symptoms I don't know if any Urologist will do Rezum to relieve my symptoms. It is all very confusing and frustrating. So hard to make a decision especially if Proton Therapy or any other cancer treatments could make my symptoms worse.
Dynamic...The risk of unnecessary, overtreatment is big in your case. Almost half of all oncologists do not even believe that Gleason Grade 6 is even a cancer !Do not rush to treatments. Prostate Cancer esp Gleason 6 type is like a snail which moves very very slow. You have enough time to watch its behavior and then make decision about how to treat it.
In the mean time, continue your amazing physical activity, eat a lot of cruciferous vegetables (sulforaphane rich) like Cauliflower, brocolli, Radishes , mustard etc.
Also, cooked red tomatoes daily, Garlic and Onions, Dark red grapes . Reduce or eliminate red meat.
If I were you, I would do ACTIVE SURVEILLANCE with close active monitoring of PSA and Bone ALP. Watch Dr. Mark Sholtz YouTube video on Active Surveillance or go to PCRI.org web site.
Protect your prostate gland with all your might.. until you read the book "invasion of prostate snatchers" (amazon has it). Good Luck.
I think a big problem in your case (and many others) is the word "cancer" means almost all attention by docs (and often patients, too) goes towards considerations for potential treatment or non-treatment of the cancer. That means less attention is paid to a direct resolution the specific problem(s) causing distressful symptoms, which may OR may NOT be the cancer itself. I am in no way qualified to suggest that you need treatment for BPH only, just suggesting that it seems to be a possibility. Non-lethal BPH is VASTLY more common in men your age than lethal PC.
Yes, there is often a problem that a doc may be pushing whatever procedure HE happens to do. But it seems you need to find a doc you trust, where together you try to separate the cancer issue from the symptom issue and discuss the different cost/benefit potential for treating one versus the other (or both, or neither). I do agree with LearnAll that time is on your side, and you can fully consider options with the knowledge that any PC progression is almost certain to be on the slower side and can be readily addressed if and when it happens.
Sorry if I'm on the wrong site. I didn't realize it was for advanced. Anyway, I had my pathology after the 1st reading sent to Dr Epstein and he confirmed the 3+3=6. The 1st report said Right Base: <2% Adenocarcinoma 1 of 3 cores. Right Lateral BaseAdenocarcinoma 10% 1 of 2 cores. Dr Epstein's report was basically the same but stated "the diagnosis of carcinoma is supported by the failure of immunoperoxidase staining for high molecular weight cytokeratin and the p63 to demonstrate basal cells in the atypical glands. Also favoring the diagnosis for cancer is that stains for racemes (a marker preferentially expressed in prostate cancer) are positive. Also stated for both was Grade group 1(most favorable)" which I'm assuming is a good thing.For me it is not just about sexual function since I'm also an athlete and really don't want to be incontinent or impotent. I'm a retired NY City firefighter with too many friend who opted for surgery and now regret it and have told me to do anything but surgery. Everything I read seems to sound the same way. I'm just really trying to narrow it down since I have doctors on the far extremes suggesting what ever their profession dictates. Again, I'm sorry for being on the wrong site and maybe you could suggest another for me more appropriate to my results.
Thank you
WOW!!! Very impressive. My last blood test on 3/18/21 when my PSA went back down to 1.7 my Total T was 526. I know in the past many years ago I did have issues with low T but I don't know why or how they straightened out. So the Proton radiologist is sending me for a bone scan tomorrow. On the last blood work they also did Alkaline Phosphatase which I believe is supposed to indicate if there is any bone issues. Mine was 44 in a range of 35-144 which I'm assuming is good from what I've read. It's all so confusing.
You do not have advanced prostate cancer. You may get better and more appropriate response from this forum:
healthunlocked.com/prostate...
MSK is one of the world leaders - do whatever they say. Active surveillance seems appropriate. Within a year, you will have a multi-parametric targeted biopsy that will sort things out better. You can decide whether it is a good idea to stick with AS then.
Is there any history of prostate or breast cancer in relatives? Father, brothers, mother, sisters, grand parents, aunts or uncles.
Unfortunately my dad died at age 64 of an aortic aneurysm. Other then that there is no real evidence in my family of cancer.My MRI states prostate is only slightly enlarged in the transition zone despite the overall normal size of the gland. No dominant lesion but a prostate utricle cyst posterior superior aspect which could possibly correspond with the palpable abnormality measuring 10x5x3mm. 2 samples tested positive, 1 with <2% and one with <10% on the right lateral and right lower quadrant. All this information always has me wondering about the cyst and is that causing my symptoms but all doctors refuse to address it saying it is inconsequential. I have read it is at the largest size for this type of cyst but there is no good treatment for it so maybe that is why they don't want to address it. I still worry about the nodule whatever it is and due to that, my symptoms and my life expectancy being hopefully more then 10years I'm considering Proton therapy.
Oncologist? You mean Urologist, right? Urologists make their trade in surgery. It could be good or not so good..... interview people who had had surgery and intervenes people who have had radiation, Brachytherapy or external. Good luck.
GD
Dynamic Cyclist, consider an infrared blanket like Bio Mat brand, which takes heat up to 150 degrees. PCa cells die above 99 degrees. I believe that it was a major factor in more or less clearing my spine of a heavy infestation of prostate cancer cells. Before this, I unwisely went with an experimental traditional route, having "small amounts" of chemo injected surgically, then taking chemo pills daily for several weeks after. After doing this 5 times. My PSA went from 320 to 750, I was in almost unbearable chronic pain, and a bone scan showed I had cancer all along my spine. Likely just a few weeks from becoming an invalid and dying, I cut the allopathic cord and went to Bio Care Hospital in Tijuana for 3 weeks last fall, arriving there in a wheelchair. My PSA had topped out at 870. Not a penny of the cost was reimbursed by my medical policy, but sometimes, moving the odds needle on surviving seems to be more important than holding onto all the lucre one has been able to accumulate over the years.
A rigorous mx factor approach took my PSA down by 50% and started rebuilding my immune system, which had been almost totally destroyed by the chemo. Even after returning home, I was quite ill for a few weeks, but I could feel that something "beneath the radar" was going on.
I have had 18 consecutive weeks of declining scores - last week it was 6.6 - and no back/leg pain.
Most readers on this site will likely be upset or at least dismissive at hearing that someone defied the orthodoxy most other men readily accept, but for me, the results speak for themselves. I value the quality of life/living even more than quantity under constantly deteriorating conditions which -in many/most cases - takes the patient out after the immune system, subjected to an ongoing series of chemo-radiation-hormone therapy and surgical insults - just can't take it anymore.
Currently, I am resuming my martial studies, continuing to work at two + writing positions, researching and investing in the blockchain/bitcoin and uranium stocks, and looking forward to my 74th birthday next month. Oh, and did I mention that a few weeks before heading to MX, I had a heart attack, had three stents inserted, and now have my normal heart pumping capacity restored to 59% from the sub-40 before surgery.
So, yes, allopathic treatment CAN work, but it's not the cure-all for any/all maladies - certainly in the realm of PCa - as the statistics and my personal experience so far seem to indicate. The Spartan motto was "Come back with your shield or on it." My metaphorical shield and sword have dealt devastating blows to what tried to take me out, and were not left on the field of battle. My intent now is to encapsulate those reprobates who remain, so that their influence will forever be restrained, allowing me to be taken out by something more esoteric down the line. It seems to work for many Japanese centenarians...
A surgeon will recommend surgery, a radiologist their treatments, etc., etc. I had a Gleason 9 six years ago. My sister-in-law is an oncologist and recommended that I do not have surgery, chemo, or radiation. Casodex for a year and a half and when the PSA started to really rise, I had LU 177 in Germany. My PSA is 2.1 now and I have my prostate and a normal life. In my humble opinion, you do not need anything at the moment except active surveillance. In the mean time, there is a ton of new stuff out there that will become available soon. Check this site for new, less invasive therapies as they are being trialed. Also look at what's coming out of Australia and Israel). As my trusted doctor told me, (and I suggest you find one) the game plan is to stay alive and intact long enough for these new treatments to become available. And stop fretting, with your Gleason score and PSA, you'll be fine.
If I were in your situation I’d follow your docs advice on active surveillance. However, when time comes for more aggressive treatment I would definitely consider proton beam therapy. I applied at University of Florida site in Jacksonville and they sent me a packet containing two books written by guys who had the procedure that I found very enlightening, as well as a bunch of other information. It turned out that I was too advanced and had to many mets for PBT treatment and had to move on the ADT and chemotherapy. Before I was diagnosed I was suffering with BPH and had much difficulty urinating. My urologist recommendation a procedure called a Urolift . It’s an out patient procedure to relieve urinary restrictions caused by BPH and can be easily reversed if it doesn’t work as expected. He also gave me a script for silodosin which helped some to. Due to COVID 19 restrictions I never had the Urolift performed and since having chemotherapy all urinary issues have cleared up. Good luck with your journey. With your early diagnosis it looks like your chances of being “cured” are high. Stay safe. Stay strong. 👍💪🌈
Thank you,
I am not a Dr. I have advanced disease with few options. If I was you I would try a few alternative therapies, first. At 68 with very minimal disease, I would not rush into surgery.
Take it slow, look at all the options, try the least invasive ideas, natural therapies etc, first.
For various reasons, I went on ADT and radiation, and continuing ADT, the oncologist says for 2 years. Minimal side effects from ADT, PSA unmeasurable, but T at 7 has lowered my biking speed on Zwift by about 2-3 mph. I could do a metric century OK, but probably not a century - too slow. Did lots of centuries before ADT. Note, that I am 81, with Gleason 3+4 PCa. Problem with Zwift, is my butt gets sore before legs do. When weather gets better, maybe outside biking on longer rides will get my speed back up. Exercise helps mitigate ADT side effects. Biking is not bone building, so walking every other day is also a must.
I'm not a doctor, I'm a survivor. In my opinion, PSA under 4 should not lead to treatment of any sort other than watchful waiting.
Find a new doctor. Ask for recommendations for one in your area (assume NY since you mentioned MSKCC). It sounds like your doctor has a Porsche payment due (nothing against Porsche owners, I own 2 elderly ones..)
I was a nationally ranked triathlete when diagnosed as a Gleason 9, (5+4) when I was 58. Had hormone treatment and radiation. Tried to do a few tris after radiation and just could not be competitive. However, I have learned to just enjoy swimming and working out....Never had a high psa....had metastasis to bones at one time. Dr. Myers worked wonders with me....Found out there is more to life than winning races.
I Cycled in Santa Barbara for 35 years. There were 26 riders in my Club. 5 have had Prostetechtomy’s. 3 open/2Robotic. 3 of those guys have done the RAAM (Race Across America). One of them rides 200 miles per week. With Robotics as good as they have now become, DO NOT BE AFRAID of cycling after Surgery (given a good 8week recovery of course). Important: Find a Surgeon who has done at least 500+. Ask the question !
Go to Inspire.com prostate cancer there is a guy there, Northern Virginia I think, that will give you multiple links to consider/research. You have time do not make a decision until you think it is best for you based on your research. YOU are in charge of the treatment you choose, not your doctors. You can get second and third opinions. There is a lot of advice available but you have to be comfortable with your decision as you will have to live with your choice.
Watchful Waiting................ Hint: when inflating your tires save some air for your blow up doll.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/01/2021 9:48 PM DST
why did you have a biopsy in the 1st place? For 68, yours is a low PSA..... There is little if any evidence that Gleason 3+ 3 will ever be the source of metastases!!! Did you ask Epstein about your pathology and suitabiity of AS. JH has a big AS program...with EXCELLENT results!!! You had an MRI.....were PIRADS 3-5 lesions founds? If so, they wer biopsied, and you end up with only 3+3!!! Congrats.....these biopsies aren't perfect, and so somehting may have been missed...sothat is why you commit to AS...at this point , I would never have treatment !! Accept your good luck. I have 100 cc prostate pr MRI, and more than fearful of what will be found in a few weeks when I have fusion biopsy....don't think I'll have your luck!!!
Sometimes...let well enuf alone!!!!
Enjoy today, and tomorrow..why risk treatment SEs, when 3+3 has rarely if evr been proven to kill men!!! It is the 4 that is somehow missed that will do the damage... you could always have a saturation biopsy down the road...if you want 95% + confidence level.
I have a NODULE on my prostate!!! My PSA went from 1.7 to 3.5 in a matter of months. Yes it was due to a 10 hour bike race and came back down after the biopsy. The reason this all started was due to my symptoms. I had difficulty urinating, weak stream, double stream and failed urine flow test miserably with 300 cc's left in my bladder after urinating, ED for a few years. Symptoms sent me to a urologist. He found a nodule and recommended biopsy after 4K blood test, MRI, CT and several other tests. So from what I have read and researched with a nodule, symptoms as I have and a life expectancy of more then 10years you SHOULD treat with something. As you eluded to in your message, maybe the biopsy missed something??? I went originally because I wanted to possibly do the REZUM procedure to reduce my symptoms but then the urologist found the nodule. AS sounds very tempting however there are a few things that concern me about it especially the nodule. I unfortunately feel the need to do something especially since MSK in a phone consult said if I do AS I should have a biopsy every year. In my opinion that is stupid from everything I have read. BLIND BIOPSY is what they call it now and I don't want to subject myself to that again. If I ever go for my again it will be an MRI Fusion biopsy if I can find someplace that does it. Your thoughts now please?
This is what we are talking about...correct?
healthline.com/health/mens-...
I'm sure it was biopsied, and evidently only 3+3 found. Is there a consensus among Docs you have consulted re the future ramifications of leaving a 3+3 nodule alone? I assume eventually ECE will appear...if not already? Is the nodule in an area that is causing the urination problems? Same question re the ED......possibly interfering with nerve function?
I suppose there are times...eg high volume....when treatment for 3+3 is the statistically-wise best decision.....beyond my unpaid grade!!
I share your concern, and desire to get to the bottom of your symptoms! I was unable to tolerate just the inserrtion of the probe when I attempted to have a fusion biopsy...I'll try again in 2 weeks D-day..this time with sedation.....I asked for and was refused the 1st time!! Frustrating...to say the least! Also frustrating......neither of 2 urologists seemed to have any interest in investigating the reason for my failure to tolerate the probe...which I understand is VERY rare situation....on the other hand, I would like to know waht underlying condition made the probe so intolerable for me. Had little problem with a previous digital exam, nor the digital exam before insertion of probe.. hmmmmmm?
I'm going to follow replies to your post......hope you will give us updates re anything more you learn about your situation re cause of symptoms and need to treat that nodule> if you have the $$$$ for cash paymeent, have you checked TULSA PRO abalation for that nodule, or maybe laser ablation, or HIFU ablation?
At Inspire.com, lots of men will give you referrals for Docs that do those type of ablation......I believe HIFU would be least $$$$, and all have restrictions as to who qualifies for the treatment.
I'm I the process of trying to contact TULSA PRO HIFU Ablation at UCLA for their clinical trial and The Mayo Clinic here in Florida. Haven't heard yet. YES, urologists don't seem to like to dig or investigate including the Radiologists I'm dealing with for Proton therapy. I ask everyone if the positive biopsies came from the nodule area since the MRI states it corresponds with a utricle cyst. But, no one wants to answer that or investigate it enough to find out. I know from my pathology report the positive biopsy came from the right and lower right but no test or person is telling me of the location of the nodule as it relates to the biopsy. Very frustrating and leaves a lot to be desired with our medical professionals which is why we are all here on this site.
did your biopsy Doc do the digital that detected the nodule. Also, I assume nodule seen on MRI? My understanding that digit-detected nodules are always biopsied!!!! what you are saying re your urologists and radiologists seems incredible!!!!
Yes, you're right about my doctors. I fired my urologist because I went to him because he was a center of excellence for REZUM but then he found the nodule. As soon as his practice realized I wasn't going to have the REZUM or allow them to do a RP they dropped me. I couldn't get medical records from them without 4 or even 5 phone call and written requests. The story continues but I won't bore you. It seems impossible to find a doctor who wants to connect the dots and see if the nodule was biopsied and if that is where the cancer is. My MRI states the nodule corresponds to a utricle cyst in my prostates that makes things even more confusing. I'm now considering trying to find a place to do an MRI infused biopsy and if 3+3=6 is all they find and can clear things up about the nodule I will do AS. BUT, I really don't want another biopsy. Still have issues from my 1st one.
Scratching my head!!! Can you talk to the radiologist who read the MRI? Did he communicate with the urologist re the nodule? I assume that urologist did the fusion biopsy? The urologist is to work with the radiologist to help assure that all necessary sampling is done re targets...plus the standard 10-12 core TRUS "blind" cores....not really blind of course...more appropriately systematic cores from the peripheral zone.
as far as I know, such a lesion would always be sampled, and the sample appropriately labelled. You need to talk to the reading pathologist, as well as the reading radioloogist. If these folks at that "center of excellence" will not be helpful, move up the chain of command. They will be responsible for any further costs you endure because they are unwilling to cooperate!!! and liable for any consequences ( sepsis, etc) if you are forced to endure another biopsy simply because they will not help after they have already been paid for their services...communicating with patient is their responsibility. If you are explaining this correctly, their inaction is inexcusable!!
Or, do I expect too much????
The first question any patient would ask.....did you find cancer within that nodule felt digitally? It was seen on mRI.....was it sampled? what did the sampling show. ELEMENTARY Dr. Watson!!
I would have to go to California and get a Psma scan to see what it would find.
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