I am in the Philippines and wondering about Drs competence.
I have extensive matastases involvement of the bones with evidence in arms, femurS, spine, shoulders, hips and almost all ribs. I am 81, have very strong bones, no pain, and lift weights regularly.
Uro A did the Biopsy three weeks ago. Only one large specimen was taken and submitted for reading. Gleason was 1 + 1. Uro was very upset about this reading and said Pathologist was incompetent, the result was impossible, and to get a second opinion. However, investigation showed that this is the most respected pathologist here and does work in the best hospitals. Uro A encouraged me to start ADT over castration. I do not like ADT side effects.
Uro B did my castration two days ago. I just had received the Biopsy report. He says he has never seen this kind of Gleason score in a patient with my advanced disease, but it is possible. He totally trusts the pathologist, but says to get it checked. Also, my prognosis changes for much the better. He wants to start Zometa, but I refused Chemo. I believe in doing nothing to weaken the immune system, and I do not like the Zometa efficacy or side effects. And, being as I now have no pain, do not want to chance that the Zometa might do something to change this. Uro encouraged castration over chemical castration. I agreed.
Uro C says I have probably had this cancer for many years. I think probably true, as my PSA has been very high for at least 15 years. I was 4 for a long while, went to 8 and I stopped testing. About 8 months ago, it was 34, but I did nothing until it reached 100. Uro C says that something else will get me before this cancer does, and I should live a long time. (Hooray!!!)
Before Biopsy, I had a bone scan. Uro A and Uro B and my oncologist said to expect Gleasons of 8,9, or ten. I think they all assumed this, especially Uro A. Why would Uro A only take one sample??? I have never heard of this. And when it tests 1+1, of course, there will be questions about other sites. My prostate is large and hard and tumors are felt with the DRE. Perhaps Uro A just figured that I would be a 8,9, or ten, so why should he bother wasting time and taking a lot of samples.
For the last 50 years, I have been a Vegan and my diet is very similar to the anti-cancer diet. I am very healthy and strong for any age. The body scan shows no involvement outside of the bone metastases.
We all know that there is no black and white with this disease. Different Drs. have different ideas and treatment methodology. However, my case seems to be well outside the norm. I would greatly apreciate any help as I have exhausted my sources here. Love, Lan 446
I am no prostate specialist but I'll share my thoughts. The Gleason score, in my opinion, is invalid since only one specimen was submitted. Your PSA and bone scan showing widespread metastasis, length of time your PSA has been abnormal, and the physical findings of the prostate gland all give an accurate picture of your disease, so I would just throw the Gleason score out of the picture. The Zometa is not chemotherapy in the sense that it is for cancer treatment per se. It is to strengthen the bones and hopefully prevent pathological fractures in the metastasis sites. When those start to happen, you will have significant pain, so you might want to think about that some more. Also, although exercise is good for you, weight lifting in the setting of multiple rib mets, could cause fractures, which are quite painful, as the chest wall is in constant motion with breathing. Exercise that is non jarring and doesn't stress the bones would be better, such as swimming or stationary bicycling. You want to really avoid falls, so no outside bicycling, please. You are so lucky you are pain free with all the mets you have. I hope it stays that way for you.
There's no such cancer diagnosis reported as Gleason 1+1. Pathology only reports the dominant Gleason grade of 3 or more. If the pathology report is correct (I doubt it), it would mean that your cancer is not prostate cancer, but has spread there from elsewhere. I've never heard of a 1-core biopsy before.
Zometa will help prevent bone fractures. You should get your dentist to clear you for it first. Castration is a good alternative to chemical castration, imho.
I greatly appreciate your replies. First, here is what the net says about Gleason 1+1=2 Apparently it is extremely rare and the lowest value found is usually Gleason 3.
I found the following on the net:
Hence, the Gleason score can range from 2 (1+1) to 10 (5+5). The following are the basis of the assignment of the Gleason grade numbers at the primary and secondary site. From Prostate Cancer Central
Gleason Grades 1 and 2: These two grades closely resemble normal prostate. They are the least important grades because they seldom occur in the general population and because they confer a prognostic benefit which is only slightly better than grade 3. Both of these grades are composed by mass; in grade 2 they are more loosely aggregated, and some glands wander (invade) into the surrounding muscle (stroma). From Prostate Cancer Info Link
Also, different countries may have their own way to look at grading Gleason. It would seem impossible that in my case, a Gleason 2 would be possible. Also, as there are no other specimens to compare, it would seem my biopsy would have no clinical value.
I have checked the internet and have found no instance of a biopsy being done with one specimen. The Philippines has almost no Medical fraud laws. I am now thinking about getting a new biopsy done.
First, I want to thank you pros and everyone for the very loving replies. I have been stressing a lot from this experience. Now, the problem is solved. LITERALLY EVERYTHING IN THE PATHOLOGY REPORT IS WRONG!! The doctor who signed the report did not do the biopsy. Report says one specimen was received in one container. There were twelve specimens submitted. The diagnosis of Gleason 1+1+2 is normally never given, and even a Gleason 3 does not matastasize. It would be easy to assume that my Gleasons will be at the other end of the scale, 8,9, and 10. I waited 15 days for 12 biopsys and recieved one, which was a farce.
The problem? One of the pathologists is an 85 YO senile man who has great seniority and it is difficult to push him out. He is the one who did the biopsy. It was these 85 YO eyes that judged Gleason 2!!!
I very sincerely hope that this has not been a total waste of time. What I have learned is that often what it seems to be, or what I think about this disease, turns out to be something quite different. I have to be more cautious in my judgements. My doctors are following all the prescribed treatments and have done everything correctly.
Also, of those patients at my stage, only 28% will survive for five years or more. But who will go and who will not go? My bet is the first to go will be the aged with weak immune systems, the overweight, the smokers and drinkers, the sugar and meat eaters, the eaters of all the chemicals in the food today, those with heart disease, diabetes, high blood, and those who do not take all measures to fight this affliction. Those who may survive will be those who have long taken care of their health, who have not trashed their immune system, and have healthy living habits. Statistics are deceiving. Everyone of us has the oportunity to extend our lives by studying and doing as many things as possible to combat the disease, there is simply no black and white as to what to expect in the future.
Your posts have helped me enormously. Thank you, your advice is very much needed and apreciated. I paid $500 for the biopsys including hospital and anaethesia, which was the Michael Jackson sleeping pill. My drs seem to know what they are doing, and I am embarassed by my doubting and misunderstanding. Dr office visits here are $10, and it seems half of the time there is no charge. My orchiedectomy was two days in hospital, total cost about $2000. All procedures have been with no pain, except for IV needles which collapsed my veins and had to be inserted several times. The hospital room is new, very atractive and about $75 a day. Nurses are gorgeous, do a good job, and must get paid about $300 a month, or less. If I can possibly be of any service to anyone on this board, please ask. love, Rakendra
I'm very glad you got to the bottom of this report, which didn't make sense. I have found over my years of experience, that when something doesn't add up or fit, it is likely an error, and to investigate. It is a shame that this added stress to your situation. But please don't beat yourself up, we assume when things are done, they are done correctly, but lots of errors and oversights occur in medicine just like any other arena, unfortunately. You might consider calling the hospital patient advocate service and explaining what happened, and get them to write that 500.00 off or reimburse you for the cost. I'm sure they'll do that since it was an error on their part.
Aside from that, I hope you do well, and beat the statistics with your healthy lifestyle and positive attitude. The hospital lab probably still has your pathology specimen/ slides on file. I would call them directly and ask for them to be reviewed by a different pathologist, with report sent to you and your doctors, so you have correct info and don't go through another biopsy. If the actual slides aren't available, the pictures should be on file at least. The patient advocate could navigate that process for you as well.
Last edited by ladybud; 04-22-2013 at 10:13 AM.