What do you remember when the doc said you have prostate cancer?
I was told over the phone, which is all right, but not offered any other information than I could wait for treatment later, and probably years later.
What happened next …. ?
I said I was intrested in waiting for treatment. Then the urologist told me of the monitoring protocols. A PSA test every 6 months, and a follow up biopsy in one year. I agreed to both of those.
Did the urologist offer support? Did a nurse?
No. No support.
Were you pointed to a support group?
No.
Were you on your own?
Yes.
Can you comment below? Please. Need your help.
Looking back, upon diagnosis five years ago this January, I greatly increased my drinking and went into a slump, My girlfriend said to find a support group. After one year I looked for a support group, found two, tried both of them, and chose one of those two.
Because of advise in the support group, I cut way back on alcohol, changed my diet to mostly plant based, and exercise regularly. I have, for other reasons, engaged in much more social activities, and consider that an important part of my new lifestyle.
The support group has helped a lot. I am the only one on AS, and I think the leader resents my presence, but that is not my problem. The others in the group are great.
After one year in the support group, my anxiety lessened. I find a lot of education on the internet.
Gleason 3+3, January 2017, one core, I can't find what percentage, PSA 8+, up from 4. 12 core transrectal ultrasound
Follow up biopsy february 2018, ASAP Atypical Asinar , 12 core transrectal ultrasound
Prostate size 35 grams, so above 4 needs to be monitored. Last PSA Feb 2022, still 4.4.
After PCa diagnosis in 2018, I started going to 2 different PCa support groups, Sacramento and Yolo County. the groups were open to all levels of PCa. Now I mostly go to the AnCan online support group. I changed my diet too. It seems to have made a difference. I'm 69.
Scott. Sounds like inadequate communications. When were you diagnosed? Gleason 6? No explanation? Did you finally go on AS? Where are you based? Are things better now?
I was told of the diagnosis, and told I could wait, probably wait for years, until treatment. No explaination of why I could wait. No information to help me decide.
11/16/2017 My 1st Medicare checkup with GP/ General Practioner. PSA was 6.65.
My GP thought it could be infection, put me on anti-biotic for 2 weeks.
12/4/2017 my PSA was 4.02 and I was referred to a urologist.
12/7 My urolgist seemed to dismiss the infection posibility. He said I had 10% chance of high risk cancer, 22% chance low risk and 68% no cancer and scheduled me for a biospy.
1/11/2018 After my biopsy (1 coree 20%, 1 core 2%) my urologist said my cancer was very low risk and recommended Active Surveillance
My wife saw an add in the paper for a local PC Support Group meeting. Went to it and since then I have gotten much information and support from several different PC Support Groups, both in person and online.
Scott, Do you know about the AnCam.org AS support group? We're only about AS. Look for the Barniskis room at the website, We meet at 8 pm Eastern on Wednesdays. You should join us. Likewise, go to Active Surveillance International. Go to aspatients.org. Ahain, we are only about AS. The general PCa support groups may not be a good choice. They are more or less sensitive to the needs of AS patients. Where do you live. Please contact me at howard.wolinsky@gmail.com
I went to the appointment, but after considering the hassle and side effects decided to do some research through friends and prostatecancer.net... bottom line, decided to use AS. Tumor was not considered high risk via Prolaris (a test my urologist recommended). Note the radiation treatment offered did not include brachiotherapy, though they did suggest a center about 4 hrs away from me that apparently is a seed-planting factory.
Went to a urinary oncologist for 2nd opinion about 6 months later. UO ordered an MRI and a biopsy, and he agreed AS was appropriate. Made some changes in diet and exercise, and the last PSA was 3.85. Sticking with AS as I approach my 66th birthday.
Not surprisingly, UO and Urologist suggestied the treatment options their centers offer. I learned about brachiotherapy and proton therapy from other patients. Also investigating trials for other options.
What happened when you first were diagnosed with prostate cancer?
I had PIRADS at an NCI medical center out of state in conjunction with a bladder cancer exam. It came back as a 5. I decided to be seen at an NCI facility closer to my home. The PIRADS data was sent to my local area NCI Urology Dept. They re-evaluated the results and recommended biopsy. It was done, and a 3-3 was diagnosed.
We're you offered any support?
No, but I already was on the Inspire PCa listserv by the time of the biopsy. So, it was easy for me to find support.
What do you remember when the doc said you have prostate cancer?
He said the biopsy confirmed the PIRAD results, and he recommended AS.
What happened next …. ?
I went home, kept reading, and found the PCa support lists.
First--I did have experience with cancer treatment as a result of my experience with my second wife's 9-year journey in treatment for breast cancer at Dana Farber Cancer Institute in Boston.
As I recall, I contacted a few people I knew who had dealt with PCa. Both had had surgery, but the one with whom I spoke the most did not suggest that this be the first option to consider. He happened to be active with, I believe, AnCan (this was in 2009), and among other things recommended a few doctors to contact at Dana Farber in Boston (eventually I had a 3rd consult with a doctor at Dana Farber, and then went on AS), as well as Dr. Zeitman at Harvard and, looking at my old notes, Dr. Klotz. I did obtain what I thought was a very good booklet which discussed all the traditional options, included WW--but did not get to AS (AstraZeneca, 2002)--and, as I look at it now, I have second thoughts. I came across a reference to UsToo, and looked at the web site, where I eventually was introduced to most of the questions I should be certain were answered before considering any treatment.
My approach probably had to do with my academic background--I did a lot of checking into various resources. I was also referred to a local support group--a nice group of men, representing a broad range of situations, but none of them were on AS.
I am on an e-mail list with UsToo and have submitted periodic reports on the progress of my situation. I have found the information obtained through UsToo to be very valuable--in particular, the reports from PC patients.
Not Much..My PSA haf gone from 4 up to 10 or 12 over a 1 year period.
Was Referred to Urologist in Billings,Montana.4 hours from here. Went to see him,repeated some test,Got blood drawn for other later tests and first day/first appointment he did 15 biopsies on my prostate. Trans rectal approach,under local amesthesia. Did Not Hurtbut havong a numb lower colon/rectal region was horrible.Felt like a giant turd for like 10 hours afterwards. Soo happy when the local anesthesia wore off. Next appointment 3 weeks later looked atbiopsy results All unclear
maybe one site of early cancer???. Also my prostate was smaller and the little lump on one end was gone.. I am a Physician Assistant-Certified for 45 years now.I had a Theory that prostate cancer is related to HPV. I got the 2 Dose HPV vaccine. My PSA dropped back to 4.My Urologist of last 3 years will retire and go play,he and his wife of 35 years. zHe was puzzled he could not fell my prostate at all at last exam in August 2021.I will see a new Urologist in August or September of 2022. In every country with a high cervical cancer rate there is a high prostate cancer rate.
HPV causes Cervical cancer,rectal cancer,throat cancer.Might contribute to skin cancers.and
in British Medival Journal June 2020 4 studies published showing a connection to HPV..
My MRI did not show any definitive results.Probably get another one this year when I see the new guy..At 72 They might not bother.....No counselng,no groups or referrals to anyone. Just self education.. 2021 was a budy year as I cared for my wife as her dementia got wotse.She died in Septe,brr 2021.. We had almost 50 years together January 2020 would have marked that. 48 years married. Now new world and getting use to not having her here.
Guys give their girlfriends or casual affairs HPV,often the gals have no idea they have it,its all inside.
Then cervical cancer kills them in their 20s to 50s.And us guys in our late 40s to 70s.. Adult activity, adult Consequences.. No preaching here Humans are gonna love as we have for thousands of years.. But now we have tools to educate ourselves and our children,grand children..Reduce Cancers for Women and Men.. Blessings to All. Jesse.
It was May of 2009 and my Urologist had done a Biopsy in the week prior and call me to his office to talk about the results. After telling me I had Prostate Cancer and I don't think he even said what degree of Prostate Cancer I had. It turned out later it was a 3+3 Gleason Score. He had his appointment book out and told me when he could do the surgery. I said what is the rush and told him I have to think about it. My father had prostate cancer and had surgery and then radiation so I knew it was not something that was going to endanger my life right away. He lived another 12 yrs. and didn't die of Prostate Cancer. I have been on Active Surveillance for 13yrs. now.
It was March 2019. I went to the lab for a routine blood draw at 7am. At 11am the Doctor called, that is NEVER good. He said my PSA went from 2 to 6 and I should see a urologist as soon as possible. I pondered for a couple hours and made the call to the only local urology practice within an hour of where I live in southern Michigan. The scheduler was very pleasant and happy to chat with a new patient, took my information and said a doctor could see me in 18 weeks.
I said, 18 weeks! They just used cancer and my name in the same sentence and you expect me to wait 18 weeks? That was the best she could do, so I made the appointment.
I sent my family doc a note to see if he had any alternatives. He said everyone would probably have a long wait like that, but that he would help if I wanted him to. I googled the University of Michigan Hospital Urology Department, made the call and two weeks later I was in Ann Arbor talking to a urologist. The result was a scheduled random 12 pin rectal biopsy scheduled for 2 weeks after that.
I called a former boss of mine who I knew had prostate issues a few years earlier and brought him up to date. He said STOP! You have TIME! We scheduled a lunch and he brought books, articles and white papers on anything prostate. He told me there are lots of treatment options and even biopsy options. I started talking to other men. Several had their prostate removed to get the cancer out and were happy they did, despite the side effects that seem pretty undesirable to me. Others also said to STOP and get the procedure you are most comfortable.
I decided I wanted an MRI targeted biopsy. The U of M only does that after you are diagnosed with prostate cancer I was told. I cancelled their biopsy and made an appointment at the University of Chicago Medical Center, which is actually almost an hour closer than Ann Arbor.
The biopsy went well. I went back and it was confirmed that I have a Gleason 3+3, clinical stage T1c, very low/low risk cancer. The urologist asked for permission to send a sample to get a Prolaris test, which I agreed to. The test results came back and the doctor immediately knew it was incorrect. They had used my highest ever PSA score of 20.9 (after a UTI) instead of a more representative PSA of 6.79 a few weeks later. They sent me the second report at my request and it confirmed the very low/low risk diagnosis.
I went back in to review the Prolaris score and the urologist opened with three treatment options I should consider, including radiation. Then he started to go over the Prolaris scores. His report did not match the report they had sent me. He was using the original score that he had rejected due to the error he had found earlier. Needless to say, I was disappointed.
At that point we scheduled another MRI and biopsy a year later to look for changes. Then the pandemic hit and it was postponed. That is about when I came across Ancan and chose to forgo the biopsy and enter Active Surveillance (AS). I send in my PSAs and will avoid another biopsy until there is a change or I have some other issue to look at.
My family doctor was not aware of AS and cautioned me to follow the urologists advice, but has come around after doing more reading.
Were you pointed to a support group? - No. Rick Davis attended a Zoom meeting I was at on WEGO Health and he suggested Ancan.
Were you on your own? - Never. I am blessed to have a large support group of friends, former coworkers, and family. I am also a man of faith which gives me great strength.
Thanks, Fred. Who did you see at UChicago? What year was it? When I started in 2020, I was ony own. There was no support for AS. Glad you found support. We had to invent support for AS only.
I received a call after my biopsy and said I had a gleason score of 6 and I should come in to discuss the diagnosis. I was at my computer while I was on the phone so I had to look up what he was talking about. At the appointment, the doctor had a resident in tow. The doctor spent the next 10 minutes explaining I had prostate cancer and gave me what seemed 8 options ranging from something something and all the way to a prostatectomy. He gave me a book to review of all of the options and asked what I thought. I did not know what to say or do. He gave me the name of his nurse and said if I had questions, she would be the best person to reach out to. About a week later the nurse called me and asked me what I would like to do. I expressed my displeasure in such a question. I informed her I thought the doctor would give me a game plan based on my score and biopsy. She said they really don't do that except try to educate the patient. I spent the next 15 or so minutes getting educated by talking with her. The nurse had given me more information and guidance than what the Urologist had done. I thanked her for her help and told her I appreciated her taking the time to help me since the Urologist did not do much of anything.
Thanks, Corey. What year was this. I had similar experience in 2010. The doctor listed everything BUT AS. Did you go on AS? Would you have wanted more support or sa support group? Where are you based?
I was diagnosed in November of 2021. AS was part of the discussion but it was more of an option versus a discussion on it being a viable option. As a patient, you need to be a advocate for yourself. The Urologist may have thought he was giving me the correct information but for a person who is not familiar with anything that is being discussed, it truly was overwhelming. The nurse became my resource. But as stated, I had to be my own advocate since they were not going to give me a roadmap to follow. The nurse did give me the name of a local US Too Chapter in the Appleton WI area. My searching for more information has lead me to your group which has been helpful in understanding AS. Thank you!
What do you remember when the doc said you have prostate cancer?
I was told over the phone, which is all right, but not offered any other information than I could wait for treatment later, and probably years later.
What happened next …. ?
I said I was intrested in waiting for treatment. Then the urologist told me of the monitoring protocols. A PSA test every 6 months, and a follow up biopsy in one year. I agreed to both of those.
Did the urologist offer support? Did a nurse?
No. No support.
Were you pointed to a support group?
No.
Were you on your own?
Yes.
Can you comment below? Please. Need your help.
Looking back, upon diagnosis five years ago this January, I greatly increased my drinking and went into a slump, My girlfriend said to find a support group. After one year I looked for a support group, found two, tried both of them, and chose one of those two.
Because of advise in the support group, I cut way back on alcohol, changed my diet to mostly plant based, and exercise regularly. I have, for other reasons, engaged in much more social activities, and consider that an important part of my new lifestyle.
The support group has helped a lot. I am the only one on AS, and I think the leader resents my presence, but that is not my problem. The others in the group are great.
After one year in the support group, my anxiety lessened. I find a lot of education on the internet.
Gleason 3+3, January 2017, one core, I can't find what percentage, PSA 8+, up from 4. 12 core transrectal ultrasound
Follow up biopsy february 2018, ASAP Atypical Asinar , 12 core transrectal ultrasound
Prostate size 35 grams, so above 4 needs to be monitored. Last PSA Feb 2022, still 4.4.
After PCa diagnosis in 2018, I started going to 2 different PCa support groups, Sacramento and Yolo County. the groups were open to all levels of PCa. Now I mostly go to the AnCan online support group. I changed my diet too. It seems to have made a difference. I'm 69.
Scott. Sounds like inadequate communications. When were you diagnosed? Gleason 6? No explanation? Did you finally go on AS? Where are you based? Are things better now?
I was told of the diagnosis, and told I could wait, probably wait for years, until treatment. No explaination of why I could wait. No information to help me decide.
11/16/2017 My 1st Medicare checkup with GP/ General Practioner. PSA was 6.65.
My GP thought it could be infection, put me on anti-biotic for 2 weeks.
12/4/2017 my PSA was 4.02 and I was referred to a urologist.
12/7 My urolgist seemed to dismiss the infection posibility. He said I had 10% chance of high risk cancer, 22% chance low risk and 68% no cancer and scheduled me for a biospy.
1/11/2018 After my biopsy (1 coree 20%, 1 core 2%) my urologist said my cancer was very low risk and recommended Active Surveillance
My wife saw an add in the paper for a local PC Support Group meeting. Went to it and since then I have gotten much information and support from several different PC Support Groups, both in person and online.
Scott, Do you know about the AnCam.org AS support group? We're only about AS. Look for the Barniskis room at the website, We meet at 8 pm Eastern on Wednesdays. You should join us. Likewise, go to Active Surveillance International. Go to aspatients.org. Ahain, we are only about AS. The general PCa support groups may not be a good choice. They are more or less sensitive to the needs of AS patients. Where do you live. Please contact me at howard.wolinsky@gmail.com
Handed a booklet and advised to see a radiation specialist. Nothing more.
That sounds bad. Did you have radiation? Were you ultimately treated or go on active surveillance? What year were you diagnosed? Where do you live?
I went to the appointment, but after considering the hassle and side effects decided to do some research through friends and prostatecancer.net... bottom line, decided to use AS. Tumor was not considered high risk via Prolaris (a test my urologist recommended). Note the radiation treatment offered did not include brachiotherapy, though they did suggest a center about 4 hrs away from me that apparently is a seed-planting factory.
Went to a urinary oncologist for 2nd opinion about 6 months later. UO ordered an MRI and a biopsy, and he agreed AS was appropriate. Made some changes in diet and exercise, and the last PSA was 3.85. Sticking with AS as I approach my 66th birthday.
Not surprisingly, UO and Urologist suggestied the treatment options their centers offer. I learned about brachiotherapy and proton therapy from other patients. Also investigating trials for other options.
What is your age? And where do you live?
What do you remember when the doc said you have prostate cancer?
I don't remember him saying all that much other than telling me what my numbers were after the biopsy.
What happened next …. ? Not to much other than scheduling a PSA in six months and getting a Genome test to see how aggressive the cancer is.
Did the urologist offer support? Did a nurse? Not really and no support from a nurse.
Were you pointed to a support group? He mentioned a support group of elderly men who met once a month and talked about their prostate cancer.
Were you on your own? Yes, totally on my own.
What happened when you first were diagnosed with prostate cancer?
I had PIRADS at an NCI medical center out of state in conjunction with a bladder cancer exam. It came back as a 5. I decided to be seen at an NCI facility closer to my home. The PIRADS data was sent to my local area NCI Urology Dept. They re-evaluated the results and recommended biopsy. It was done, and a 3-3 was diagnosed.
We're you offered any support?
No, but I already was on the Inspire PCa listserv by the time of the biopsy. So, it was easy for me to find support.
What do you remember when the doc said you have prostate cancer?
He said the biopsy confirmed the PIRAD results, and he recommended AS.
What happened next …. ?
I went home, kept reading, and found the PCa support lists.
Did the urologist offer support? Did a nurse?
No and No. I didn't ask.
Were you pointed to a support group?
Were you on your own?
First--I did have experience with cancer treatment as a result of my experience with my second wife's 9-year journey in treatment for breast cancer at Dana Farber Cancer Institute in Boston.
As I recall, I contacted a few people I knew who had dealt with PCa. Both had had surgery, but the one with whom I spoke the most did not suggest that this be the first option to consider. He happened to be active with, I believe, AnCan (this was in 2009), and among other things recommended a few doctors to contact at Dana Farber in Boston (eventually I had a 3rd consult with a doctor at Dana Farber, and then went on AS), as well as Dr. Zeitman at Harvard and, looking at my old notes, Dr. Klotz. I did obtain what I thought was a very good booklet which discussed all the traditional options, included WW--but did not get to AS (AstraZeneca, 2002)--and, as I look at it now, I have second thoughts. I came across a reference to UsToo, and looked at the web site, where I eventually was introduced to most of the questions I should be certain were answered before considering any treatment.
My approach probably had to do with my academic background--I did a lot of checking into various resources. I was also referred to a local support group--a nice group of men, representing a broad range of situations, but none of them were on AS.
I am on an e-mail list with UsToo and have submitted periodic reports on the progress of my situation. I have found the information obtained through UsToo to be very valuable--in particular, the reports from PC patients.
Not Much..My PSA haf gone from 4 up to 10 or 12 over a 1 year period.
Was Referred to Urologist in Billings,Montana.4 hours from here. Went to see him,repeated some test,Got blood drawn for other later tests and first day/first appointment he did 15 biopsies on my prostate. Trans rectal approach,under local amesthesia. Did Not Hurtbut havong a numb lower colon/rectal region was horrible.Felt like a giant turd for like 10 hours afterwards. Soo happy when the local anesthesia wore off. Next appointment 3 weeks later looked atbiopsy results All unclear
maybe one site of early cancer???. Also my prostate was smaller and the little lump on one end was gone.. I am a Physician Assistant-Certified for 45 years now.I had a Theory that prostate cancer is related to HPV. I got the 2 Dose HPV vaccine. My PSA dropped back to 4.My Urologist of last 3 years will retire and go play,he and his wife of 35 years. zHe was puzzled he could not fell my prostate at all at last exam in August 2021.I will see a new Urologist in August or September of 2022. In every country with a high cervical cancer rate there is a high prostate cancer rate.
HPV causes Cervical cancer,rectal cancer,throat cancer.Might contribute to skin cancers.and
in British Medival Journal June 2020 4 studies published showing a connection to HPV..
My MRI did not show any definitive results.Probably get another one this year when I see the new guy..At 72 They might not bother.....No counselng,no groups or referrals to anyone. Just self education.. 2021 was a budy year as I cared for my wife as her dementia got wotse.She died in Septe,brr 2021.. We had almost 50 years together January 2020 would have marked that. 48 years married. Now new world and getting use to not having her here.
Guys give their girlfriends or casual affairs HPV,often the gals have no idea they have it,its all inside.
Then cervical cancer kills them in their 20s to 50s.And us guys in our late 40s to 70s.. Adult activity, adult Consequences.. No preaching here Humans are gonna love as we have for thousands of years.. But now we have tools to educate ourselves and our children,grand children..Reduce Cancers for Women and Men.. Blessings to All. Jesse.
It was May of 2009 and my Urologist had done a Biopsy in the week prior and call me to his office to talk about the results. After telling me I had Prostate Cancer and I don't think he even said what degree of Prostate Cancer I had. It turned out later it was a 3+3 Gleason Score. He had his appointment book out and told me when he could do the surgery. I said what is the rush and told him I have to think about it. My father had prostate cancer and had surgery and then radiation so I knew it was not something that was going to endanger my life right away. He lived another 12 yrs. and didn't die of Prostate Cancer. I have been on Active Surveillance for 13yrs. now.
It was March 2019. I went to the lab for a routine blood draw at 7am. At 11am the Doctor called, that is NEVER good. He said my PSA went from 2 to 6 and I should see a urologist as soon as possible. I pondered for a couple hours and made the call to the only local urology practice within an hour of where I live in southern Michigan. The scheduler was very pleasant and happy to chat with a new patient, took my information and said a doctor could see me in 18 weeks.
I said, 18 weeks! They just used cancer and my name in the same sentence and you expect me to wait 18 weeks? That was the best she could do, so I made the appointment.
I sent my family doc a note to see if he had any alternatives. He said everyone would probably have a long wait like that, but that he would help if I wanted him to. I googled the University of Michigan Hospital Urology Department, made the call and two weeks later I was in Ann Arbor talking to a urologist. The result was a scheduled random 12 pin rectal biopsy scheduled for 2 weeks after that.
I called a former boss of mine who I knew had prostate issues a few years earlier and brought him up to date. He said STOP! You have TIME! We scheduled a lunch and he brought books, articles and white papers on anything prostate. He told me there are lots of treatment options and even biopsy options. I started talking to other men. Several had their prostate removed to get the cancer out and were happy they did, despite the side effects that seem pretty undesirable to me. Others also said to STOP and get the procedure you are most comfortable.
I decided I wanted an MRI targeted biopsy. The U of M only does that after you are diagnosed with prostate cancer I was told. I cancelled their biopsy and made an appointment at the University of Chicago Medical Center, which is actually almost an hour closer than Ann Arbor.
The biopsy went well. I went back and it was confirmed that I have a Gleason 3+3, clinical stage T1c, very low/low risk cancer. The urologist asked for permission to send a sample to get a Prolaris test, which I agreed to. The test results came back and the doctor immediately knew it was incorrect. They had used my highest ever PSA score of 20.9 (after a UTI) instead of a more representative PSA of 6.79 a few weeks later. They sent me the second report at my request and it confirmed the very low/low risk diagnosis.
I went back in to review the Prolaris score and the urologist opened with three treatment options I should consider, including radiation. Then he started to go over the Prolaris scores. His report did not match the report they had sent me. He was using the original score that he had rejected due to the error he had found earlier. Needless to say, I was disappointed.
At that point we scheduled another MRI and biopsy a year later to look for changes. Then the pandemic hit and it was postponed. That is about when I came across Ancan and chose to forgo the biopsy and enter Active Surveillance (AS). I send in my PSAs and will avoid another biopsy until there is a change or I have some other issue to look at.
My family doctor was not aware of AS and cautioned me to follow the urologists advice, but has come around after doing more reading.
Were you pointed to a support group? - No. Rick Davis attended a Zoom meeting I was at on WEGO Health and he suggested Ancan.
Were you on your own? - Never. I am blessed to have a large support group of friends, former coworkers, and family. I am also a man of faith which gives me great strength.
Thanks, Fred. Who did you see at UChicago? What year was it? When I started in 2020, I was ony own. There was no support for AS. Glad you found support. We had to invent support for AS only.
I see Dr Shalhav at U of C. I saw him in 2019 and had a tele-visit in October 2021 where he suggested I consider another MRI and / or Biopsy in 2023.
I received a call after my biopsy and said I had a gleason score of 6 and I should come in to discuss the diagnosis. I was at my computer while I was on the phone so I had to look up what he was talking about. At the appointment, the doctor had a resident in tow. The doctor spent the next 10 minutes explaining I had prostate cancer and gave me what seemed 8 options ranging from something something and all the way to a prostatectomy. He gave me a book to review of all of the options and asked what I thought. I did not know what to say or do. He gave me the name of his nurse and said if I had questions, she would be the best person to reach out to. About a week later the nurse called me and asked me what I would like to do. I expressed my displeasure in such a question. I informed her I thought the doctor would give me a game plan based on my score and biopsy. She said they really don't do that except try to educate the patient. I spent the next 15 or so minutes getting educated by talking with her. The nurse had given me more information and guidance than what the Urologist had done. I thanked her for her help and told her I appreciated her taking the time to help me since the Urologist did not do much of anything.
Thanks, Corey. What year was this. I had similar experience in 2010. The doctor listed everything BUT AS. Did you go on AS? Would you have wanted more support or sa support group? Where are you based?
I was diagnosed in November of 2021. AS was part of the discussion but it was more of an option versus a discussion on it being a viable option. As a patient, you need to be a advocate for yourself. The Urologist may have thought he was giving me the correct information but for a person who is not familiar with anything that is being discussed, it truly was overwhelming. The nurse became my resource. But as stated, I had to be my own advocate since they were not going to give me a roadmap to follow. The nurse did give me the name of a local US Too Chapter in the Appleton WI area. My searching for more information has lead me to your group which has been helpful in understanding AS. Thank you!