Since Zhou mo ed from Tufts to NYC, is there an address to send pathology slides from a biopsy to him for 2nd opinion now? I will be having another biopsy July 31 that I will want to send to him. Thank you
Dr. Zhou is back to worth at Mt. SInai in NYC. We'll get a full update from him soon.
He shared his new email with me:
My dear friend,
After 5 years at Tufts Medical Center and Tufts Medicine in Boston, I am leaving the institution at the end of June, 2024, to go to Mount Sinai Hospital in New York City. I’d love to stay in touch with you. My new email address:
Staffers in an MD or hospital office cannot legally withhold medical records such as pathology reports or MRIs.
HIPAA requires patients to have access to their records.
I've seen this trick - the doctor tells the patient he can't give the patient his records.
This was in a hospital. It's technically true. The doctor can't just hand the patients his records. What got left out is the patient having to go through the proper procedures through the hospital release of information department.
Patients can file a complaint with the Office of Civil Rights is a provider or institution is withholding medical records
Howard, just a short comment about your 2nd opinion on 2nd opinions. Though I read the article, I can't recall any information you shared about what kind of plan, or what kind of action you suggest if your 2nd opinion is different than your first. If your 2nd path report shows a significant decrease in 'dangersous' or negative information. Is there a danger of getting on a merry -go -round for another and another opinion?
I realize that if there is a difference, you need to re-evalueate the first diagnosis. Is this an area where the expertise of these 2nd opinion Docctors takes presidence over the first Doctors' ? I guess i'm asking you, "Who do you trust, why, and what do you do?" I think I have that question right. mason
I think that the prevailing wisdom is to trust the centers of excellence since they do so much more than the local hospital. I did actually end up with a 3rd opinion and when the 2 centers of excellence agreed and the local hospital was the odd man out, I decided to trust the big guys.
But also keep in mind what you are looking for. I was counseled by a prominent prostate cancer doctor to not worry over the small details. He said what you are looking for is agreement or disagreement over the Gleason Score and the presence of cribriform or other anomalies. Worry less about the difference about the %'s. Though in my case the % difference was large enough to impact the treatment recommendation.
And all the doctors were quick to comment on how imprecise the process is. You are talking about 2 people looking at a slide and attempting to interpret what they see. This is a place where AI could make a huge difference.
Stuart, something you said really rang the bell for me, " keep in mind what you are looking for." What most of us would wish for (( Look for.)) is hearing those two magic words, " All Clear." We can get to a point that what we want to hear, what we wish to hear is NOT going to be in the cards for us. So we need to steel ourselves to hear some not so good news. not written very well. mason
Stuart, Thanks much for the reply. I believe that my question really shows how much of an "intimidating" subject PCa really is. I was thinking about what I had written and kind of came up with a response like yours.-- Don't sweat the small things. Keep faith with Centers of Excellence, and have a cancer team that listens to your questions, and gives you reasonably easy to understand answers to your questions and comments. mason
Like the image of being a captain. Too often a diagnosis of cancer can steal away your power, authority and command. Thinking about it, we have spent most of our lives having doctors tell us what to do. With cancer it can be a different story. mason
We are teammates, Ken. Maybe doctor and patient should be co-captains? I got diagnosed Friday night with COVID-19 using a home kit. I had to learn how to navigate the University of Chicago health system on a weekend. I was linked with a p;rimary doctor on call, who was great. I felt as though she was my co-captain as we figured out how to proceed. I feel like the infection is not too bad but I am worried about my short-ability to speak because of coughing and coughing. Also, worried about potential bronchitis and pneumonia--0I have a history of them. She shared with me her personal experience of getting bronchitis after her first bout with COVID back in April. I was chatting with her at 6 am today--on the phone, not chat. I also discussed the pros and cons of Paxlovid. My brothers both had COVID. One took the medication and was fine. The other didn't because of concerns about a rebound effect. DR. J. and I discussed the risks--which are not high for a rebound--in the context of my having some risk factors, especially age (76), and severity of disease. Good discussion--it took a while for her to wake up. In the end, I was better informed patient and know what I want to do. Take the Paxlovid. (I had to search for a pharmacy that stocks it). I also gave her a rundown on the state of low-risk prostate cancer--the journey, as they say, starts with family physicians.
Take the Paxlovid, the side effects can be annoying, but at your age it can help make sure that COVID doesn't get worse and send you into an even worse place. Hang in there and be patient, the cough can hang on for weeks.
Thanks. AI is making a difference. Did you see my recent story on AI beating out the radiologists? Coming to pathology, too.
14 years ago, I took the PSA figuring that would be that, I never expected them to find something. Initially, my first biopsy showed High-Grade PINs, a supposed precursor to prostate cancer and which is largely not heeded today. I got a second opinion from the Great Jonathan Epstein in June 2010, He said my results were ambiguous and suggested I come back for another biopsy six months later.
That's when a single core of 1 mm Gleason 6 was found. The first urologist urged me to have surgery and looked down his nose at AS.
My second opinion at U Chicago--20-30 minutes from my house-- ed to a pronouncement that I was a poster boy for AS.
I think most of us do not have the foresight on our first outing to say I'm going to go to a center of excellence.
I figured it would be one and done. I had largely danced between the raindrops up to that point in my life (age 62).
Many of us don't live in areas with centers of excellence in our backyards. Most of us are happy to deal with the hospital or doctor close to home. It's easier.
Howard, I wish there was some way that patients could see and understand the importance of the facility they choose for treatment. How much is a two day drive worth to you? Would you drive for 2 days if it gave you a 40% increase in maintaning your erections?? How about 48 hours with a 50% lowering of a chance for impotence?? mason
A vote for second opinions. My initial biopsy Gleason grading was done at the local hospital where my biopsy was done. Came back 3+4=7 with 20% grade 4, second opinion from MSK reduced the % grade 4 to 5%. Enough to make a difference in the treatment planning. Oh, and I actually ended up with a third opinion from Weill Cornell that agreed on the 5%. While the second opinion may not always be significantly different than the first, it's relatively inexpensive and quick. And why wouldn't you want it before you make one of the most important decisions you will ever face.
RE: "I hired a nutritional doctor with extensive experience in prostate cancer. He recommended specific supplements and supported my diet..."
My question is: which specific supplements did he recommend...?
Thank you!
Anybody...?
Dr. Zhou just gave me his updated information:
Dr. Ming Zhou
Professor of Pathology
Vice Chair of Oncological Pathology
Chief of Pathology at the Tisch Cancer Hospital
Mount Sinai Health System
Department of Pathology, Box 1194Annenberg Bldg. 15th FL
New York, NY 10029
Email: Ming.zhou@mountsinai.org
Telephone: (212)241-8881
Has he started doing 2nd opinions yet?
Since Zhou mo ed from Tufts to NYC, is there an address to send pathology slides from a biopsy to him for 2nd opinion now? I will be having another biopsy July 31 that I will want to send to him. Thank you
Dr. Zhou is back to worth at Mt. SInai in NYC. We'll get a full update from him soon.
He shared his new email with me:
My dear friend,
After 5 years at Tufts Medical Center and Tufts Medicine in Boston, I am leaving the institution at the end of June, 2024, to go to Mount Sinai Hospital in New York City. I’d love to stay in touch with you. My new email address:
Ming.Zhou@Mountsinai.org
Also, Dr. Jonathan Epstein told me recently he will be back on the job soon. Details to come.
Staffers in an MD or hospital office cannot legally withhold medical records such as pathology reports or MRIs.
HIPAA requires patients to have access to their records.
I've seen this trick - the doctor tells the patient he can't give the patient his records.
This was in a hospital. It's technically true. The doctor can't just hand the patients his records. What got left out is the patient having to go through the proper procedures through the hospital release of information department.
Patients can file a complaint with the Office of Civil Rights is a provider or institution is withholding medical records
Howard, just a short comment about your 2nd opinion on 2nd opinions. Though I read the article, I can't recall any information you shared about what kind of plan, or what kind of action you suggest if your 2nd opinion is different than your first. If your 2nd path report shows a significant decrease in 'dangersous' or negative information. Is there a danger of getting on a merry -go -round for another and another opinion?
I realize that if there is a difference, you need to re-evalueate the first diagnosis. Is this an area where the expertise of these 2nd opinion Docctors takes presidence over the first Doctors' ? I guess i'm asking you, "Who do you trust, why, and what do you do?" I think I have that question right. mason
I think that the prevailing wisdom is to trust the centers of excellence since they do so much more than the local hospital. I did actually end up with a 3rd opinion and when the 2 centers of excellence agreed and the local hospital was the odd man out, I decided to trust the big guys.
But also keep in mind what you are looking for. I was counseled by a prominent prostate cancer doctor to not worry over the small details. He said what you are looking for is agreement or disagreement over the Gleason Score and the presence of cribriform or other anomalies. Worry less about the difference about the %'s. Though in my case the % difference was large enough to impact the treatment recommendation.
And all the doctors were quick to comment on how imprecise the process is. You are talking about 2 people looking at a slide and attempting to interpret what they see. This is a place where AI could make a huge difference.
Stuart, something you said really rang the bell for me, " keep in mind what you are looking for." What most of us would wish for (( Look for.)) is hearing those two magic words, " All Clear." We can get to a point that what we want to hear, what we wish to hear is NOT going to be in the cards for us. So we need to steel ourselves to hear some not so good news. not written very well. mason
Stuart, Thanks much for the reply. I believe that my question really shows how much of an "intimidating" subject PCa really is. I was thinking about what I had written and kind of came up with a response like yours.-- Don't sweat the small things. Keep faith with Centers of Excellence, and have a cancer team that listens to your questions, and gives you reasonably easy to understand answers to your questions and comments. mason
Well said. Take it slow, demand answers. You need to be the captain of your team.
Like the image of being a captain. Too often a diagnosis of cancer can steal away your power, authority and command. Thinking about it, we have spent most of our lives having doctors tell us what to do. With cancer it can be a different story. mason
We are teammates, Ken. Maybe doctor and patient should be co-captains? I got diagnosed Friday night with COVID-19 using a home kit. I had to learn how to navigate the University of Chicago health system on a weekend. I was linked with a p;rimary doctor on call, who was great. I felt as though she was my co-captain as we figured out how to proceed. I feel like the infection is not too bad but I am worried about my short-ability to speak because of coughing and coughing. Also, worried about potential bronchitis and pneumonia--0I have a history of them. She shared with me her personal experience of getting bronchitis after her first bout with COVID back in April. I was chatting with her at 6 am today--on the phone, not chat. I also discussed the pros and cons of Paxlovid. My brothers both had COVID. One took the medication and was fine. The other didn't because of concerns about a rebound effect. DR. J. and I discussed the risks--which are not high for a rebound--in the context of my having some risk factors, especially age (76), and severity of disease. Good discussion--it took a while for her to wake up. In the end, I was better informed patient and know what I want to do. Take the Paxlovid. (I had to search for a pharmacy that stocks it). I also gave her a rundown on the state of low-risk prostate cancer--the journey, as they say, starts with family physicians.
Take the Paxlovid, the side effects can be annoying, but at your age it can help make sure that COVID doesn't get worse and send you into an even worse place. Hang in there and be patient, the cough can hang on for weeks.
Thanks. AI is making a difference. Did you see my recent story on AI beating out the radiologists? Coming to pathology, too.
14 years ago, I took the PSA figuring that would be that, I never expected them to find something. Initially, my first biopsy showed High-Grade PINs, a supposed precursor to prostate cancer and which is largely not heeded today. I got a second opinion from the Great Jonathan Epstein in June 2010, He said my results were ambiguous and suggested I come back for another biopsy six months later.
That's when a single core of 1 mm Gleason 6 was found. The first urologist urged me to have surgery and looked down his nose at AS.
My second opinion at U Chicago--20-30 minutes from my house-- ed to a pronouncement that I was a poster boy for AS.
I think most of us do not have the foresight on our first outing to say I'm going to go to a center of excellence.
I figured it would be one and done. I had largely danced between the raindrops up to that point in my life (age 62).
Many of us don't live in areas with centers of excellence in our backyards. Most of us are happy to deal with the hospital or doctor close to home. It's easier.
So there is an education process for patients to find their way to these centers. https://www.cancer.gov/research/infrastructure/cancer-centers
Back before I did this Substack, I wrote occasionally in this Medium blog:
https://howardwolinsky.medium.com/in-my-opinion-get-a-second-opinion-c1969549e234
Howard, I wish there was some way that patients could see and understand the importance of the facility they choose for treatment. How much is a two day drive worth to you? Would you drive for 2 days if it gave you a 40% increase in maintaning your erections?? How about 48 hours with a 50% lowering of a chance for impotence?? mason
A vote for second opinions. My initial biopsy Gleason grading was done at the local hospital where my biopsy was done. Came back 3+4=7 with 20% grade 4, second opinion from MSK reduced the % grade 4 to 5%. Enough to make a difference in the treatment planning. Oh, and I actually ended up with a third opinion from Weill Cornell that agreed on the 5%. While the second opinion may not always be significantly different than the first, it's relatively inexpensive and quick. And why wouldn't you want it before you make one of the most important decisions you will ever face.
Just curious, why not use PSAD to help determine the treatment path?
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2816957