Glad to be hear PSA 11.7 GS 3+4=7
To All Forum members: Thank you for being here!
This looks like a nice forum for me to learn from others with the wisdom gained through experience.
Age = 61, health = average, no other medical problems identified. So far MRI w/rectal coil at MD Anderson - Houston, TX. Follow up included Fusion Guided Biopsy, 1 out of 11 needles detected prostatic adenocarcinoma, PSA 11.7 GS 3+4=7. Next step (Feb 17 - 18) is for additional scans including bone scan to determine level of containment. After that consultation with Dr. Joh F. Ward III.
Anxiety is an interesting foe.
Any advice given is appreciated.
Regards, Michael
Comments
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It's Curable . . .
Although your cancer was rated GS7, only 1 out of 11 samples were positive and your PSA is still relatively low. So, it definitely seems curable and, although it's difficult, you should try to keep your anxiety in check.
From what you've said SO FAR and although things can change, it does NOT sound like you are likely to die because of this cancer and ALL treatment options are currently available to you -- the array of radiation treatments and surgery.
I'm an outspoken advocate AGAINST surgery and, if you can avoid it, I highly recommend it. Of the various radiation treatments, I received and recommend Cyberknife, a form of SBRT (stereotactic body radiation therapy which "cured" my PCa after treatment over 5 years ago.
Obviously, you need to decide for yourself how you want to proceed. The best thing you can do is to do research on ALL of the available treatments and, after consultation w/your doctor(s) and family, decide what you think is best for you.
We here, of course, are more than willing to provide "advice" concerning the various treatments, when you ask for the same and when we think we have something worthwhile to say, but ultimately it is your choice.
Good luck!!!
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Pathology report informationSwingshiftworker said:It's Curable . . .
Although your cancer was rated GS7, only 1 out of 11 samples were positive and your PSA is still relatively low. So, it definitely seems curable and, although it's difficult, you should try to keep your anxiety in check.
From what you've said SO FAR and although things can change, it does NOT sound like you are likely to die because of this cancer and ALL treatment options are currently available to you -- the array of radiation treatments and surgery.
I'm an outspoken advocate AGAINST surgery and, if you can avoid it, I highly recommend it. Of the various radiation treatments, I received and recommend Cyberknife, a form of SBRT (stereotactic body radiation therapy which "cured" my PCa after treatment over 5 years ago.
Obviously, you need to decide for yourself how you want to proceed. The best thing you can do is to do research on ALL of the available treatments and, after consultation w/your doctor(s) and family, decide what you think is best for you.
We here, of course, are more than willing to provide "advice" concerning the various treatments, when you ask for the same and when we think we have something worthwhile to say, but ultimately it is your choice.
Good luck!!!
Thanks for all of the encouragement and POSITIVE messages posted so far! Pathology Diagnosis pasted below, sample J is the problem. Also pasted below is the Radiology Report. I am encoureged by the reply postings received to date from you forum members. I have had BPH diagnosed since 9/21/04, with a PSA of 5.6 and neg biopsy. On 6/26/09 I had PSA 6.39 and another negative biposy. Between Oct 2010 and July 2013 PSA ranged 5.81 and 8.7 with one spike of 11.1. Then in May of 2015 PSA rose to 12.4 and so far has hovered around 11 - to 12. I posted my results as a means of responding to a couple of questions that were pointed out in tme replies to my initial comments.
Again all comments are welcome in helping me better understand the current data that I have received. BTW - I have made a total effort to increase the nutritional value of my diet and raise my immunilogical strenght through choices in diet as well as increase my exposure to sunlight and more exercise.
Thanks in advance for your time and effort(s) in helping me come to grips with this situation.
PATHOLOGY DIAGNOSIS
(A) LEFT LATERAL APEX:
Prostatic tissue with atrophy and focal chronic inflammation, no tumor present.
(B) LEFT MEDIAL MID:
Prostatic tissue with focal chronic inflammation, no tumor present.
(C) LEFT MEDIAL APEX:
Prostatic tissue with atrophy and focal chronic inflammation, no tumor present.
(D) RIGHT MEDIAL BASE:
Prostatic tissue with focal chronic inflammation, no tumor present.
(E) RIGHT MEDIAL MID:
Prostatic tissue, no tumor present.
(F) RIGHT MEDIAL APEX:
Prostatic tissue, no tumor present.
(G) RIGHT LATERAL BASE:
Prostatic tissue with atrophy and focal acute inflammation, no tumor present.
(H) RIGHT LATERAL MID:
Prostatic tissue, no tumor present.
(I) RIGHT LATERAL APEX:
Prostatic tissue with atrophy, no tumor present.
(J) ROI #1, VOL 0.28, X 2 CORES, LEFT LATERAL BASE: PROSTATIC ADENOCARCINOMA, GLEASON SCORE 7(3+4),
TWO FOCI (5 MM, 6 MM), INVOLVING TWO SEPARATE TISSUE FRAGMENTS.
(K) ROI #2, VOL 0.09, X2 CORES LEFT MEDIAL BASE: Prostatic tissue and ejaculatory duct tissue, no tumor present
GROSS DESCRIPTION
(J) ROI #1, 2 CORES, LEFT LATERAL BASE -Two tan-pink cores of tissue measuring 1.4 x and 1.7 cm in greatest dimension. Submitted in toto in J1.
RADIOLOGY REPORT
Technique: Prostate MRI with endorectal coil acquired at 1.5T. 3 plane localizer, axial T1W FSPGR, and axial DWI of the pelvis was performed. With an endorectal coil, three plane T2WI, axial DWI with ADC reconstruction and DCE sequences were performed focused on the prostate. Motion artifact:
Findings:
Prostate measurement (3-plane): 6.3 x 3.7 x 6.2 cm. (Sagittal by AP by transverse)
Hemorrhage: Mild
Benign prostatic hypertrophy: Moderate. The prostate gland indents the bladder neck.
Dominant lesion measures 0.8cm and is located in the left peripheral zone at the level of the base on:
Image # 10, series 8, 11, 12.
Location: 5-6 o'clock
Mild low T2 signal
ADC signal is reduced.
Qualitative suspicion of clinically significant disease: 4. Likely.
Extra-prostatic extension (EPE): not found
Neurovascular bundle invasion (NVI): not found
Seminal vesicle invasion (SVI): not found
No clear involvement of the bladder neck, distal sphincter, or rectum.
Lymphadenopathy: No enlarged lymph nodes is seen.
Bone metastasis: not found
IMPRESSION:
1. Tiny focal area of abnormality suspicious for tumor within the left peripheral zone at level of the base.
2. No extraprostatic or metastatic disease.<span style="font-size: 8.5pt; font-family: 'Arial','sans-serif'; mso-fareast-font-family: 'Tim0 -
.
michael,
Sorry for your diagnosis. We all go through lots of stress and all those negative feelings for the first few months of diagnosis.
Generally a a 61y/o man with a Gleason 3+4=7 and a PSA over 10 is not eligible for active surveillance.
You did not mention the amount of involvement of the core that was positive, that is , what percent of the core was positive? ....
I wonder if the pathology of your biopsy indicated any other findings.
I strongly recommend that you have a second opinion of your pathology by a pathologist at another world class institution, (ie Johns Hopkins is known for their pathology excelence)...hopefully the Gleason score will be downgraded to a 3+3=6 with less than 50 percent of the core cancerous.
A PSA less than 10 is recommended for those on Active Surveillance. Your PSA is high, however there are other factors that cause the PSA to rise, sex or bike riding before the biopsy, infection, even a hard stool. What is your PSA history, did you have a free PSA test, or any other diagnostic tests.
The MRI is a very good indicator of containment, that is, can show if the cancer is outside the prostate.
..................
It is important for you to do lots of research, interview the various specialists that treat PCa, read books on the subject, attend local support groups...there is an organization USTOO that you can google that lists local support groups....they also have published literature...they have a great one that is issued each month, HOT SHEET
You need to be educated so you can make the best decision for treatment.....Prostate cancer is slow growing, so you do not have to jump to a decision.
We are here for you so keep on asking questions,
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MOREThere are higher PSA numberschoclabs said:Pathology report information
Thanks for all of the encouragement and POSITIVE messages posted so far! Pathology Diagnosis pasted below, sample J is the problem. Also pasted below is the Radiology Report. I am encoureged by the reply postings received to date from you forum members. I have had BPH diagnosed since 9/21/04, with a PSA of 5.6 and neg biopsy. On 6/26/09 I had PSA 6.39 and another negative biposy. Between Oct 2010 and July 2013 PSA ranged 5.81 and 8.7 with one spike of 11.1. Then in May of 2015 PSA rose to 12.4 and so far has hovered around 11 - to 12. I posted my results as a means of responding to a couple of questions that were pointed out in tme replies to my initial comments.
Again all comments are welcome in helping me better understand the current data that I have received. BTW - I have made a total effort to increase the nutritional value of my diet and raise my immunilogical strenght through choices in diet as well as increase my exposure to sunlight and more exercise.
Thanks in advance for your time and effort(s) in helping me come to grips with this situation.
PATHOLOGY DIAGNOSIS
(A) LEFT LATERAL APEX:
Prostatic tissue with atrophy and focal chronic inflammation, no tumor present.
(B) LEFT MEDIAL MID:
Prostatic tissue with focal chronic inflammation, no tumor present.
(C) LEFT MEDIAL APEX:
Prostatic tissue with atrophy and focal chronic inflammation, no tumor present.
(D) RIGHT MEDIAL BASE:
Prostatic tissue with focal chronic inflammation, no tumor present.
(E) RIGHT MEDIAL MID:
Prostatic tissue, no tumor present.
(F) RIGHT MEDIAL APEX:
Prostatic tissue, no tumor present.
(G) RIGHT LATERAL BASE:
Prostatic tissue with atrophy and focal acute inflammation, no tumor present.
(H) RIGHT LATERAL MID:
Prostatic tissue, no tumor present.
(I) RIGHT LATERAL APEX:
Prostatic tissue with atrophy, no tumor present.
(J) ROI #1, VOL 0.28, X 2 CORES, LEFT LATERAL BASE: PROSTATIC ADENOCARCINOMA, GLEASON SCORE 7(3+4),
TWO FOCI (5 MM, 6 MM), INVOLVING TWO SEPARATE TISSUE FRAGMENTS.
(K) ROI #2, VOL 0.09, X2 CORES LEFT MEDIAL BASE: Prostatic tissue and ejaculatory duct tissue, no tumor present
GROSS DESCRIPTION
(J) ROI #1, 2 CORES, LEFT LATERAL BASE -Two tan-pink cores of tissue measuring 1.4 x and 1.7 cm in greatest dimension. Submitted in toto in J1.
RADIOLOGY REPORT
Technique: Prostate MRI with endorectal coil acquired at 1.5T. 3 plane localizer, axial T1W FSPGR, and axial DWI of the pelvis was performed. With an endorectal coil, three plane T2WI, axial DWI with ADC reconstruction and DCE sequences were performed focused on the prostate. Motion artifact:
Findings:
Prostate measurement (3-plane): 6.3 x 3.7 x 6.2 cm. (Sagittal by AP by transverse)
Hemorrhage: Mild
Benign prostatic hypertrophy: Moderate. The prostate gland indents the bladder neck.
Dominant lesion measures 0.8cm and is located in the left peripheral zone at the level of the base on:
Image # 10, series 8, 11, 12.
Location: 5-6 o'clock
Mild low T2 signal
ADC signal is reduced.
Qualitative suspicion of clinically significant disease: 4. Likely.
Extra-prostatic extension (EPE): not found
Neurovascular bundle invasion (NVI): not found
Seminal vesicle invasion (SVI): not found
No clear involvement of the bladder neck, distal sphincter, or rectum.
Lymphadenopathy: No enlarged lymph nodes is seen.
Bone metastasis: not found
IMPRESSION:
1. Tiny focal area of abnormality suspicious for tumor within the left peripheral zone at level of the base.
2. No extraprostatic or metastatic disease.There are higher PSA numbers for those who have larger prostates, since the prostate places pressure on the urethea, SECRETING MORE PSA IN THE BLOOD, AND THUS HIGHER PSA numbers . Your prostate is 144 which is very large.
Since it is this size, I doubt that you have taken an alpha 5 inhibiter, Avodart or proscar, that will reduce the size of the prostate and the levels of PSA.
Probably you have a problem urinating.
A note; those with large prostates are not eligible for radiation seeds.
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The involvements for the two cores that were taken in J....as I understand ( which may be wrong) are 0.28 and 0.09 which are relatively low
So as I understand, there is relatively low involvement of the 3+4=7 in the biopsy results. ....Since you had an MRI guided biopsy,( hoping the biopsy machine that was used was 3 dimensional, and the urologist can go back to the exact area of the core, and biopsy that surrounding area to see how extensive the cancer is, .....this would 
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Doing things coordinately and timely
Choclabs (Michael)
Welcome to the board. I am sorry for you to be here. This is a terrible chapter in your life but you will overcome it.
I was diagnosed in 2000 at 50 years of age. I still do not recall how I returned home from the hospital after hearing the phrase that I had prostate cancer. The biopsy of six needles was all positive. One week after this consultation I returned to the doctor and he surprised me again. He asked if I had made any decision. He commented that it was at my will to decide on a treatment. He only would help me with referrals to various specialists so that I could be prepared to inform him of my choice.
It was a stressful moment in my life and I had to learn about PCa to get treated. At the time there were not many books on the matter and I looked for information in the net. My wife helped me a lot, both reading several numbers of articles and digesting its contents latter. I got second opinions on the biopsy slides and consulted three specialists in each “trade”. It took me two months to get the final decision.
Diagnosed in May and surgery on the 15th of August.Each case has its unique way to proceed. My choice may not be the best to you but it was what I thought being the best for me. I think that one should try getting the best diagnosis of his actual status choosing modern facilities and due physicians. Once comfortable with the information gathered then decide on what to do.
Best wishes and luck in this bumpy road.
VGama
Adding a note in regards to your last post:
I am not an expert but the data from both reports above provide information that may instigate you being proper for AS. In fact many cores involved chronic inflammation which leads to think that the amount of PSA is part produced by causes other than cancer. I wonder if you could choose Active Surveillance as your initial therapy, postponing any radical treatment for a latter attack, if required.
At this moment, you can try monitoring the issue using other markers for PCa progression or even get a genomic test to verify levels of aggressivity of the cancer. If indolent, you may even consider waiting for novelty treatments addressing gene type therapy. Here are links for PCa markers and Gene/Molecular testing, that may interest you;
www.yananow.org/Mentors/BonkhoffStrum.pdf
http://prostatecanceruk.org/about-us/news-and-views/2015/7/prostate-cancer-in-your-genes-what-can-genetic-testing-tell-us
https://www.myriad.com/patients-families/disease-info/prostate-cancer/
I would also recommend you to read past threads related to the survival stories of participants in this forum. You can inquire details from these active survivors; HopefulandOptimistic (for AS), Swingshiftworker (for CK treatment) and Max (for Davinci treatment).
VG
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Hopeful & optimistic,hopeful and optimistic said:MOREThere are higher PSA numbers
There are higher PSA numbers for those who have larger prostates, since the prostate places pressure on the urethea, SECRETING MORE PSA IN THE BLOOD, AND THUS HIGHER PSA numbers . Your prostate is 144 which is very large.
Since it is this size, I doubt that you have taken an alpha 5 inhibiter, Avodart or proscar, that will reduce the size of the prostate and the levels of PSA.
Probably you have a problem urinating.
A note; those with large prostates are not eligible for radiation seeds.
.....
The involvements for the two cores that were taken in J....as I understand ( which may be wrong) are 0.28 and 0.09 which are relatively low
So as I understand, there is relatively low involvement of the 3+4=7 in the biopsy results. ....Since you had an MRI guided biopsy,( hoping the biopsy machine that was used was 3 dimensional, and the urologist can go back to the exact area of the core, and biopsy that surrounding area to see how extensive the cancer is, .....this would be in appro 6 months when the prostate heals.....so if the cancer is not extensive you are good to continue Active Surveillance.
Also very important to have , as I mentioned a second opinion of the pathology.
If your doc agrees to wait 6 months for another biopsy........you may wish to speak to him about a prescrition for Avodart which would shrink the prostate, so if you choose SBRT or another radiation, you would lessen the chance of having to use a catheter after the initial treatment.
If your prostate is removed by surgery, you will be also e able to urinate like a race horse.
...........................
MRI ....your MRI was with a Tesla 1.5 magnet, although very good....the best Tesla used in clinical practice is a 3.0....... at any rate the key thing is that there is no extracapsular extension.......which is great.
You mentioned that you are scheduled for a bone scan next week......the American Urological Association does not recommend a bone scan for those with Gleason scores under 8, so I wonder how necessary a bone scan will be in your case.
NOTE: I AM NOT A DOCTOR, JUST A PATIENT WHO HAS AN INTEREST IN PROSTATE CANCER WHO IS GIVING HIS TWO CENTS
...
Life style and diet..........Heart healthy is prostate cancer,,,,,,,,,,,in fact, those of us who have been diagnosed with prostate cancer, who have made life style changes are less likely to die from heart disease than the rest of the population ...basically PCa patientsand others have more to fear from heart disease since this disease is epidemic ......I for one have been eating a veggie based diet with some fish since diagnosis, others here have also made life changes, some eat a mediterranean diet.
Ok -Hopeful & optimistic,
Ok - Thanks for sharing your insight. So 144cu.cm. is somewhat large, BPH diagnosed since 2004. And you are correct that I have not yet been administered alpha 5 inhibitors and I will star looking into side effects of those class of drugs.
So size of enlarged prostate can also increase level of PSA, thanks for that insight. After use of aplha 5 inhibitors then PSA should lower. That with the Gleason of 3+4 = 7 would put me on the borderline of AUA guidelines for the additional scans. I see upside to the next series of scans in that they can confirm the cancer is still encapsulated. Yes I will be out additional dollars minus what insurance pays for. But I look at it as providing a better baseline of information to work with in going forward with my life plans.
Second opinion on Pathology results? I do not know how that would work. If I request this, then would MD Anderson actually send the tissue samples to another lab for their inspection and analysis? Could possible results be that MDA lab would stand by their numbers and throretically Lab B would return a 3+3 = 6 or maybe 4+4=8?
My MDA lab derived GS and the extra scans seem like an aggressive approach to quantifying what level of involvement with PCa that I have?
My current mindset is what I have shared with you. It is not my intention that my mindset appear argumentative to your insight. I look forward to your opinions on any downside to the extra scans. Your reply to my posts has already initiated my research on AUA website and others to better understand any benefits or disadvantages to the extra scans.
Thank you again for sharing your journey and experence based insights with me and all others on the forum!
With High Regards,
Michael Watson
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With the use of the Alpha 5choclabs said:Hopeful & optimistic,
Ok -Hopeful & optimistic,
Ok - Thanks for sharing your insight. So 144cu.cm. is somewhat large, BPH diagnosed since 2004. And you are correct that I have not yet been administered alpha 5 inhibitors and I will star looking into side effects of those class of drugs.
So size of enlarged prostate can also increase level of PSA, thanks for that insight. After use of aplha 5 inhibitors then PSA should lower. That with the Gleason of 3+4 = 7 would put me on the borderline of AUA guidelines for the additional scans. I see upside to the next series of scans in that they can confirm the cancer is still encapsulated. Yes I will be out additional dollars minus what insurance pays for. But I look at it as providing a better baseline of information to work with in going forward with my life plans.
Second opinion on Pathology results? I do not know how that would work. If I request this, then would MD Anderson actually send the tissue samples to another lab for their inspection and analysis? Could possible results be that MDA lab would stand by their numbers and throretically Lab B would return a 3+3 = 6 or maybe 4+4=8?
My MDA lab derived GS and the extra scans seem like an aggressive approach to quantifying what level of involvement with PCa that I have?
My current mindset is what I have shared with you. It is not my intention that my mindset appear argumentative to your insight. I look forward to your opinions on any downside to the extra scans. Your reply to my posts has already initiated my research on AUA website and others to better understand any benefits or disadvantages to the extra scans.
Thank you again for sharing your journey and experence based insights with me and all others on the forum!
With High Regards,
Michael Watson
With the use of the Alpha 5 inhibitor, Avodart, the prostate size is reduced, and the PSA is artificially reduce by about a half....there is a study "Reduce study" that document that taking this drug; may have a positive effect in abating prostate cancer progress. Many on Active Surveillance use this drug. So it's probably a good idea for those on Active Surveillance who have a large prostate to take this drug......Avodart can have side effects of heart disease, ED and breast tenderness and enlargement....(In my case where my prostate is average size I considered taking the drug, however my doc and I finally decided not to take it(to be honest it was close to a coin flip for me...)theAvodart does reduce the PSA level, but;my laymans opinion is that the size of your prostate is the main contributor to cause your PSA to be higher than usually, not the cancer
When you say the next series of scans are you referring to the bone scan, or another MRI. If;a bone scan, studies have shown that the cancer is unlikely to go to the bone with a Gleasons under 8. Your MRI already showed that the cancer is not outside the prostate
In order to have your slides sent to another institution, I found that the easiest way is to simply call your doctors office, and ask them to send the slides to the pathologist of your choice. J Epstein at Johns Hopkins or Bostwick;are choices of excellence;The review may confirm or have a different reading... if there is a difference in the readings, you can cross the bridge when you come to it, there are various next steps to include but not limited to a Genomic Gene test. Remember the institution that you will send the slides toare the expert's expert for Prostate Cancer pathology
Michael, I do not in the least find you argumentative. You are simply asking excellent question for which I and the others at this site are more than happy to answer. In fact, the opposite is true, ;I appreciate your questions, and get something out of sharing with you0 -
I looked at the Dr. Jonathanhopeful and optimistic said:With the use of the Alpha 5
With the use of the Alpha 5 inhibitor, Avodart, the prostate size is reduced, and the PSA is artificially reduce by about a half....there is a study "Reduce study" that document that taking this drug; may have a positive effect in abating prostate cancer progress. Many on Active Surveillance use this drug. So it's probably a good idea for those on Active Surveillance who have a large prostate to take this drug......Avodart can have side effects of heart disease, ED and breast tenderness and enlargement....(In my case where my prostate is average size I considered taking the drug, however my doc and I finally decided not to take it(to be honest it was close to a coin flip for me...)theAvodart does reduce the PSA level, but;my laymans opinion is that the size of your prostate is the main contributor to cause your PSA to be higher than usually, not the cancer
When you say the next series of scans are you referring to the bone scan, or another MRI. If;a bone scan, studies have shown that the cancer is unlikely to go to the bone with a Gleasons under 8. Your MRI already showed that the cancer is not outside the prostate
In order to have your slides sent to another institution, I found that the easiest way is to simply call your doctors office, and ask them to send the slides to the pathologist of your choice. J Epstein at Johns Hopkins or Bostwick;are choices of excellence;The review may confirm or have a different reading... if there is a difference in the readings, you can cross the bridge when you come to it, there are various next steps to include but not limited to a Genomic Gene test. Remember the institution that you will send the slides toare the expert's expert for Prostate Cancer pathology
Michael, I do not in the least find you argumentative. You are simply asking excellent question for which I and the others at this site are more than happy to answer. In fact, the opposite is true, ;I appreciate your questions, and get something out of sharing with youI looked at the Dr. Jonathan Epstein, JHMI pathology lab write up. And he "wrote the book" on interpreting prostate tissue pathology reports. So I wrote my urologist and asked him to have his staff respond to me on insurance coverage and sample preparation for a second opinion. THANKS!
Yes my radiologist med team stated that they observed no cancer present outside of my prostate upon their review of my MRI images. And yes I am scheduled for more scans and a bone scan this Thursday in contradiction to AUA guidelines. MDA may just be acting out of extreme caution or since they have pre-approval from my insurance company, they might be acting out of fiscal responsibility to generate revenue? I'll pay my co-pay share to have extra information captured now versus the possibility that I have no insurance in the future to cover such attention to details.
Avodart - thank you for your information regarding this class of drugs. I am not yet up to speed on this approach and will weigh heavily on the side effects and disruption or impact that these strong drugs will have on my body.
Regards,
Michael
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.choclabs said:I looked at the Dr. Jonathan
I looked at the Dr. Jonathan Epstein, JHMI pathology lab write up. And he "wrote the book" on interpreting prostate tissue pathology reports. So I wrote my urologist and asked him to have his staff respond to me on insurance coverage and sample preparation for a second opinion. THANKS!
Yes my radiologist med team stated that they observed no cancer present outside of my prostate upon their review of my MRI images. And yes I am scheduled for more scans and a bone scan this Thursday in contradiction to AUA guidelines. MDA may just be acting out of extreme caution or since they have pre-approval from my insurance company, they might be acting out of fiscal responsibility to generate revenue? I'll pay my co-pay share to have extra information captured now versus the possibility that I have no insurance in the future to cover such attention to details.
Avodart - thank you for your information regarding this class of drugs. I am not yet up to speed on this approach and will weigh heavily on the side effects and disruption or impact that these strong drugs will have on my body.
Regards,
Michael
Bone Scan, My experience and source:
Seven years ago when I was first diagosed with a low volume, low aggressive disease( feel free to click my name to read about my case), the urologist who did the biopsy told me that there was a one percent chance the cancer escaped the prostate, and I was able to constder any and all treatments to include Active Surveillance.
I decided to interview specialists in different treatment types. The first person that I spoke with was a radiation oncologist who was at a local hospital near where I live in So Ca.. This **** told me that there was a 50 percent chance that the cancer had escaped the prostate, that he wanted to do an MRI and bone scan, and was recommending that i have both IMRt and braky therapy. My lady friend is an advanced practice nurse with a masters in oncology.
I also had appointment scheduled for two weeks after this local appointment with a top surgeon at UCLA.
My lady friend advised me not to take any of the tests, the MRI or bone scan at the local hospital because a lot of hospital like to have tests at their facitity . She also directed me to the guidelines of the American Urological Society which indicated that Bone Scans were not advised for Gleason under 8.
I met with the urologist who told me that the oncologist and other doctors are unscrupulous. He did advise that I have an MRI with a spectroscopy,to double check, and told me that I was a perfect candidate for Active Surveillance...he, to his credit, refused to discuss surgery with me. In fact he told me that he was a "World Class Surgeon" but I did not need surgery....I asked him to manage my case which he did for a while.
By the way I have been in an Active Surveillance program for seven years now. A couple of years ago, I have had a second opinion by a pathologist who said that the Gleason in one of my cores was a 3=4=7, not a 3+3=6 as initially found. To this date I still have not been offered a bone scan by any of my doctors.
............
There is a book that I refer to that I misplaced, "A Primer on Prostate Cancer" Strum https://www.google.com/imgres?imgurl=http://t2.gstatic.com/images?q=tbn:ANd9GcS6uid2Nn9qNVaYh9yC2As_j3TR0tFfJwxezy_IFwjw0bq1ALIr&imgrefurl=http://books.google.com/books/about/A_Primer_on_Prostate_Cancer.html?id=g4WfIs4CPIkC&source=kp_cover&h=615&w=401&tbnid=arXLcWFG7I4tDM:&tbnh=110&tbnw=71&docid=kzFDCV5AyLlHwM&itg=1&usg=___unDCxk-UONek9Tz34ltqXGMWcg=
In this book there is a chart that provide a summary of men at various levels of Gleason scores who receive bone scans......basically the amount of cancer to the bones at the varios levels of Gleason is very infrequent, 3+3=6 being the least.......Dr Strum in his book mentions that many docs prescribe bone scans as a money maker.
................
The above is my story, and results of the research that I have done, but you are you, and I am I...best of luck in your decision.
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Yes do research about the Alpha 5 inhibitors. , and do research about the various active treatments. My biased opinion is to really look into SBRT....Speak with your doc to get his input to hear what he has to say about your case.....I'm sure that he is no fool, since he is associated with the world class hospital for prostate cancer where you are a patient.
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Johns Hopkins 2nd Opinionchoclabs said:I looked at the Dr. Jonathan
I looked at the Dr. Jonathan Epstein, JHMI pathology lab write up. And he "wrote the book" on interpreting prostate tissue pathology reports. So I wrote my urologist and asked him to have his staff respond to me on insurance coverage and sample preparation for a second opinion. THANKS!
Yes my radiologist med team stated that they observed no cancer present outside of my prostate upon their review of my MRI images. And yes I am scheduled for more scans and a bone scan this Thursday in contradiction to AUA guidelines. MDA may just be acting out of extreme caution or since they have pre-approval from my insurance company, they might be acting out of fiscal responsibility to generate revenue? I'll pay my co-pay share to have extra information captured now versus the possibility that I have no insurance in the future to cover such attention to details.
Avodart - thank you for your information regarding this class of drugs. I am not yet up to speed on this approach and will weigh heavily on the side effects and disruption or impact that these strong drugs will have on my body.
Regards,
Michael
Jonathan Epstein did the 2nd opinion on my biopsy slides.
I submitted them directly to Johns Hopkins and asked for Drl Epstein to do the assessement, which he did. The cost at the time was nominal -- around $175, if I recall -- which I paid out of pocket. The cost has now gone up to $250, which still isn't that high but if you can have your insurance pay for it, all the better. I just didn't bother becuase I was with Kaiser at the time.
You can find the necessary forms/information here for submission of your slides to Johns Hopkins:
http://pathology.jhu.edu/department/PDF/patientshaveslidesnHIPAA111213.pdf
Good luck!
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Proton therapy appointment???????Swingshiftworker said:Johns Hopkins 2nd Opinion
Jonathan Epstein did the 2nd opinion on my biopsy slides.
I submitted them directly to Johns Hopkins and asked for Drl Epstein to do the assessement, which he did. The cost at the time was nominal -- around $175, if I recall -- which I paid out of pocket. The cost has now gone up to $250, which still isn't that high but if you can have your insurance pay for it, all the better. I just didn't bother becuase I was with Kaiser at the time.
You can find the necessary forms/information here for submission of your slides to Johns Hopkins:
http://pathology.jhu.edu/department/PDF/patientshaveslidesnHIPAA111213.pdf
Good luck!
I wake up this morning and now have a Proton Therapy appointment scheduled! With NO as of yet consultation with my urologist. My next appointment with him is Thursday morning the day after additional scans including bone scan. Then later that day at 2:00pm he has me already scheduled for Proton therapy.
Like you I am a bit cynical towards the additional scans (more money for MDA) but have come to terms with the additional monetary costs to me. I have VERY LITTLE time getting to know what Proton Therapy is and more importantly WHY I NEED IT.
To my urologists credit, it is scheduled after my consultation with him, so I could actually reschedule after we receive a second opinion from Dr. Epstein.
I am just a bit dismayed that I am being scheduled for radiation therapy with no consultation with me nor my wife prior to the day of proposed treatment.
Comments appreciated.
Michael
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MDA Proton Therapy info.choclabs said:Proton therapy appointment???????
I wake up this morning and now have a Proton Therapy appointment scheduled! With NO as of yet consultation with my urologist. My next appointment with him is Thursday morning the day after additional scans including bone scan. Then later that day at 2:00pm he has me already scheduled for Proton therapy.
Like you I am a bit cynical towards the additional scans (more money for MDA) but have come to terms with the additional monetary costs to me. I have VERY LITTLE time getting to know what Proton Therapy is and more importantly WHY I NEED IT.
To my urologists credit, it is scheduled after my consultation with him, so I could actually reschedule after we receive a second opinion from Dr. Epstein.
I am just a bit dismayed that I am being scheduled for radiation therapy with no consultation with me nor my wife prior to the day of proposed treatment.
Comments appreciated.
Michael
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Prostate size correctionchoclabs said:Further investigation of my Dr. notes indicate that the Truss prostate volume 86cc and the MRI prostate volume 84cc.
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choclabs said:
Proton therapy appointment???????
I wake up this morning and now have a Proton Therapy appointment scheduled! With NO as of yet consultation with my urologist. My next appointment with him is Thursday morning the day after additional scans including bone scan. Then later that day at 2:00pm he has me already scheduled for Proton therapy.
Like you I am a bit cynical towards the additional scans (more money for MDA) but have come to terms with the additional monetary costs to me. I have VERY LITTLE time getting to know what Proton Therapy is and more importantly WHY I NEED IT.
To my urologists credit, it is scheduled after my consultation with him, so I could actually reschedule after we receive a second opinion from Dr. Epstein.
I am just a bit dismayed that I am being scheduled for radiation therapy with no consultation with me nor my wife prior to the day of proposed treatment.
Comments appreciated.
Michael
.....the final decision for treatment facility and choice is up to youYOU ARE THE ONE WHO HAS TO LIVE WITH THE RESULTS OF ANY TREATMENT, NOT THE DOCTOR.........the doctors work for you. I am surprised that an appointment for one possible treatment type is made before the review of the results of your diagnostic tests with the urologist.
I think that it is a good idea to interview doctors in the various specialties.
Here are some sites about proton bean therapy, where you can gather information for your meeting with the doctor. You may in fact wish to postpone your appointment until you are prepared for the meeting.
By the way it is a good idea for your wife( it is a couples disease) or another person to be with you during the meeting. You may wish to ask the doctor if you can record the meeting for future review.
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Consultation or Treatment?choclabs said:Proton therapy appointment???????
I wake up this morning and now have a Proton Therapy appointment scheduled! With NO as of yet consultation with my urologist. My next appointment with him is Thursday morning the day after additional scans including bone scan. Then later that day at 2:00pm he has me already scheduled for Proton therapy.
Like you I am a bit cynical towards the additional scans (more money for MDA) but have come to terms with the additional monetary costs to me. I have VERY LITTLE time getting to know what Proton Therapy is and more importantly WHY I NEED IT.
To my urologists credit, it is scheduled after my consultation with him, so I could actually reschedule after we receive a second opinion from Dr. Epstein.
I am just a bit dismayed that I am being scheduled for radiation therapy with no consultation with me nor my wife prior to the day of proposed treatment.
Comments appreciated.
Michael
Is your appointment for consultation or treatment?
If it's a consultation, I don't see the harm in going to talk about it but, I'm curious, who set up the appointment with you without consulting w/you about it 1st? Very odd. If it's for treatment, you should REFUSE to receive treatment until you are fully informed about it and the other available alternatives.
FYI: Proton beam therapy isn't offered at many places (beause of the need for and cost of a cyclotron) but it has yielded pretty good results in the past. I considered it at the same time that I learned about CyberKnife (SBRT) back 6 years ago now.
The best (perhaps the only) book on the subject that I've seen/read is: "You Can Beat Prostate Cancer (And You Don't Need Surgery To Do It)" written by Robert J. Marckini (2006). I got a free copy of this book from Loma Linda Medical Center when I was inquiring about PBT. You can probably still get a free copy of it from them now.
I chose CK over PBT because:
1) CK was covered by my insurance (Blue Shielf CA)
2) CK was available at UCSF near where I lived; I'd have to travel to SoCal for treatment.
3) CK requires only 3-4 treatments over a week's time; PBT required treatment 5x's a week for 8 weeks which would requireme to live in SoCal for 2 mos.
There were other reasons I chose CK over PBTwhich I am told may no longer apply.
1) Back then, they had to fit you for a body cast that you would lie in so that there would be no body movement during treatment; CK can adjust for both body and organ movement during treatment.
2) You had to have a water filled balloon inserted in your recturn to protect the rectum during treatment; not required for CK. Post-PBT patients formed an organization called BOB - Brotherhood of the Balloon, which builds upon this common experience among post-PBT patients.
Good luck!
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status update post meeting at MDAVascodaGama said:Doing things coordinately and timely
Choclabs (Michael)
Welcome to the board. I am sorry for you to be here. This is a terrible chapter in your life but you will overcome it.
I was diagnosed in 2000 at 50 years of age. I still do not recall how I returned home from the hospital after hearing the phrase that I had prostate cancer. The biopsy of six needles was all positive. One week after this consultation I returned to the doctor and he surprised me again. He asked if I had made any decision. He commented that it was at my will to decide on a treatment. He only would help me with referrals to various specialists so that I could be prepared to inform him of my choice.
It was a stressful moment in my life and I had to learn about PCa to get treated. At the time there were not many books on the matter and I looked for information in the net. My wife helped me a lot, both reading several numbers of articles and digesting its contents latter. I got second opinions on the biopsy slides and consulted three specialists in each “trade”. It took me two months to get the final decision.
Diagnosed in May and surgery on the 15th of August.Each case has its unique way to proceed. My choice may not be the best to you but it was what I thought being the best for me. I think that one should try getting the best diagnosis of his actual status choosing modern facilities and due physicians. Once comfortable with the information gathered then decide on what to do.
Best wishes and luck in this bumpy road.
VGama
Adding a note in regards to your last post:
I am not an expert but the data from both reports above provide information that may instigate you being proper for AS. In fact many cores involved chronic inflammation which leads to think that the amount of PSA is part produced by causes other than cancer. I wonder if you could choose Active Surveillance as your initial therapy, postponing any radical treatment for a latter attack, if required.
At this moment, you can try monitoring the issue using other markers for PCa progression or even get a genomic test to verify levels of aggressivity of the cancer. If indolent, you may even consider waiting for novelty treatments addressing gene type therapy. Here are links for PCa markers and Gene/Molecular testing, that may interest you;
www.yananow.org/Mentors/BonkhoffStrum.pdf
http://prostatecanceruk.org/about-us/news-and-views/2015/7/prostate-cancer-in-your-genes-what-can-genetic-testing-tell-us
https://www.myriad.com/patients-families/disease-info/prostate-cancer/
I would also recommend you to read past threads related to the survival stories of participants in this forum. You can inquire details from these active survivors; HopefulandOptimistic (for AS), Swingshiftworker (for CK treatment) and Max (for Davinci treatment).
VG
Gentlemen - Muchos gracias for all the support, both comments and suggestions! I'm going to start a new thread to provide a brief summary of wher I am at post MDA meeting.
Thanks!
Michael
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