New to the group
Having said all of that, I am now facing the difficult treatment decisions. I was initially very upbeat about my future, but some hard realities have hit me lately. I have had two back surgeries from which I recovered very well. In both cases, I had the surgery, recovered and never thought of them again. I realize that with this disease, I will never be able to walk away from it. It is something I will need to live with and worry about the rest of my life. I am a generally upbeat person, so I am confident I will cope well.
So here’s my diagnosis and thoughts about treatment. I am 64 years old and in good health. I eat well and exercise regularly. My primary care physician noticed a nodule on my prostate during a DRE at a routine physical exam. My PSA level was only 1.4, but he sent me to an urologist who confirmed the nodule and cancer with a biopsy. He took 14 core samples, the usual 12 plus two directly from the nodule. Both cores from the nodule and both from the right apex were cancerous, as well as one core each from the right Mid and Base. All left side samples were clear. All samples were given a Gleason 3+4. Although he is confident the cancer is localized to the prostate, there is of course no guarantee and he told me I needed to take action. I am fortunate to live close enough to Baltimore, so I was able to schedule an appointment at The James Buchanan Brady Urological Institute at Johns Hopkins University for next week.
My biggest concern is knowing if all the cancer has been eliminated. I now know that no such guarantee is possible with any treatment, but it seems that with surgery I will at least know if it was contained or had spread to adjacent areas. I have talked with three men who had surgery at Johns Hopkins from 4 to 13 years ago and all are doing very well; only one continues to have intermittent slight leakage. However, at the time of their treatment, they were all younger than I am now. I am concerned about recovery from surgery and possible lingering side effects. However, my urologist said that if I chose radiation treatment, he recommends a 5 week course of external radiation followed by Brachytherapy. This course of treatment seems as bad as surgery and I will not know how well the treatment worked. I also worry about long term side effects form external radiation.
Comments
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Welcome
It looks like you have started your trip with the rest of us. My advise is do your research, get second opinions. There are many alternatives out there. See the John Hopkins urology folks then go see their cancer folks. I will tell you this you will get different answers from diverent specialist. You will have to weed through them. Keep us posted.0 -
Twenty years ago
My initial diagnosis was almost identical to yours. PSA 4.0, Gleason score 7 (3+4), age 64. In 1991 choices were limited to surgery, radiation, and watchful waiting. Looking back, I am appalled at how ignorant I was and how quicky I made a decision. I know a lot more now than I did then. I chose surgery because I wanted the cancer out. The surgery worked, PSA dropped to 0. Side effects were tolerable. After 13 years, the cancer came back. In 2005, I took radiation; that did not work. In 2008 I went on hormone therapy. Again, my PSA is undetectable; my urologist says the cancer is in remission. The ride has not been too rocky. I have felt good almost all the time; some discomfort, of course. At age 85, life is good.
Every case and result is different, of course. There are many more treatment options today. Not sure whether I would choose a different one or not.
Good luck to you.0 -
Contained or Localized ?Old-timer said:Twenty years ago
My initial diagnosis was almost identical to yours. PSA 4.0, Gleason score 7 (3+4), age 64. In 1991 choices were limited to surgery, radiation, and watchful waiting. Looking back, I am appalled at how ignorant I was and how quicky I made a decision. I know a lot more now than I did then. I chose surgery because I wanted the cancer out. The surgery worked, PSA dropped to 0. Side effects were tolerable. After 13 years, the cancer came back. In 2005, I took radiation; that did not work. In 2008 I went on hormone therapy. Again, my PSA is undetectable; my urologist says the cancer is in remission. The ride has not been too rocky. I have felt good almost all the time; some discomfort, of course. At age 85, life is good.
Every case and result is different, of course. There are many more treatment options today. Not sure whether I would choose a different one or not.
Good luck to you.
PCCK
Finding cancer upon a positive DRE at a low PSA of 1.4 is rare in 64 years olds. The most concerning aspect of your diagnosis are the presence of Gleason grade 4, and the extent of the microscopic analysis of the two cores taken from the “nodule”. Your doctors opinion on a “localized (confined) to the prostate” diagnosis is suggestive that the pathologist report indicates negative (contained) extra capsular extensions. The percentage of grade 4 within the total positive (6 out of 14) can influence your real status and the choice in the treatment. Your info refers to a T2b clinical stage.
At your age and in your fairly healthy condition you describe, the outcome from any treatment would not differ of that from guys in their 50th. You are considered young and the NCCN guidelines recommended radical approaches in such patients.
Surgery or radiotherapy got high probabilities of “cure” in contained cases. In localized diagnosis radiation has an edge over surgery. You may be in the “borderline” between contained and localized so that your doctor introduce you to two modalities.
In cases with low PSA and in the presence of low grade voluminous cancer, other forms of radiation (Cyberknife and Proton beam) are also recommended.
Johns Hopkins is probably the best place for diagnosing PCa. They got the best surgeons but I would get second opinions from other specialists (each type of treatment) before deciding on the route to take.
The side effects and the risks of the treatment should be taken into consideration too.
In my case I had open surgery in 2000 (at 50) and later (2006) had SRT (IMRT) due to recurrence. I never experienced incontinence but got ED from surgery, even if sex still exists at a “lower quality”.
Wishing you find a favourable treatment and peace of mind.
Welcome to the board.
VGama0 -
Fear NotVascodaGama said:Contained or Localized ?
PCCK
Finding cancer upon a positive DRE at a low PSA of 1.4 is rare in 64 years olds. The most concerning aspect of your diagnosis are the presence of Gleason grade 4, and the extent of the microscopic analysis of the two cores taken from the “nodule”. Your doctors opinion on a “localized (confined) to the prostate” diagnosis is suggestive that the pathologist report indicates negative (contained) extra capsular extensions. The percentage of grade 4 within the total positive (6 out of 14) can influence your real status and the choice in the treatment. Your info refers to a T2b clinical stage.
At your age and in your fairly healthy condition you describe, the outcome from any treatment would not differ of that from guys in their 50th. You are considered young and the NCCN guidelines recommended radical approaches in such patients.
Surgery or radiotherapy got high probabilities of “cure” in contained cases. In localized diagnosis radiation has an edge over surgery. You may be in the “borderline” between contained and localized so that your doctor introduce you to two modalities.
In cases with low PSA and in the presence of low grade voluminous cancer, other forms of radiation (Cyberknife and Proton beam) are also recommended.
Johns Hopkins is probably the best place for diagnosing PCa. They got the best surgeons but I would get second opinions from other specialists (each type of treatment) before deciding on the route to take.
The side effects and the risks of the treatment should be taken into consideration too.
In my case I had open surgery in 2000 (at 50) and later (2006) had SRT (IMRT) due to recurrence. I never experienced incontinence but got ED from surgery, even if sex still exists at a “lower quality”.
Wishing you find a favourable treatment and peace of mind.
Welcome to the board.
VGama
PCCK:
Even with a Gleason of 7, you have a little time to study your options. They are many, and most are very effective.
Assuming that you may have similar issues with surgery and combinatiion therapy (IMRT + seeds) is probably not the case. Here are some items to consider:
1. Many guys just want the cancer removed. If you are one of those, your choice is clear, and your mission will be to choose the best and most experienced surgeon possible. If you choose a world class surgeon, the numbers for a long-term cure, potency and contenience are quite good.
2. Combination radiotherapy (IMRT + seeds) boosts the highest long-term (10-15 yrs) cure rates of any other choice for both low and intermediate risk patients. You are classified as an intermediate risk.
3. Proton Beam Therapy and CyberKnife both have a very good cure rate track track record with very few meaningful or lasting side effects.
4. Using any of the above radiotherapy will leave a very low possibility of incontenience. This was huge with me. I placed contenience above potency when decision making.
5. Longer-term potency studies leave a little be be desired. At their worst, surgery and combination therapy cause some issue with about half their patients. This may change a little now that both choices are using proactive measures to boost sexual performance after treatments. Better living through chemistry.
6. As you study and speak with patinets (by the way, speak to as many as possible), the horror stories (worst cases) seem to be concentrated with surgery patients. I am not pushing or trashing any therapy; this observation is just the case.
The talent and experience of person performing the therapy may be the most critical link to success.
I hope this is helpful. Do your own homework, so your decision fits you and is made with confidence. With all the great choices you have, you will be fine.
Good luck!
robert10 -
Kudosrobert1 said:Fear Not
PCCK:
Even with a Gleason of 7, you have a little time to study your options. They are many, and most are very effective.
Assuming that you may have similar issues with surgery and combinatiion therapy (IMRT + seeds) is probably not the case. Here are some items to consider:
1. Many guys just want the cancer removed. If you are one of those, your choice is clear, and your mission will be to choose the best and most experienced surgeon possible. If you choose a world class surgeon, the numbers for a long-term cure, potency and contenience are quite good.
2. Combination radiotherapy (IMRT + seeds) boosts the highest long-term (10-15 yrs) cure rates of any other choice for both low and intermediate risk patients. You are classified as an intermediate risk.
3. Proton Beam Therapy and CyberKnife both have a very good cure rate track track record with very few meaningful or lasting side effects.
4. Using any of the above radiotherapy will leave a very low possibility of incontenience. This was huge with me. I placed contenience above potency when decision making.
5. Longer-term potency studies leave a little be be desired. At their worst, surgery and combination therapy cause some issue with about half their patients. This may change a little now that both choices are using proactive measures to boost sexual performance after treatments. Better living through chemistry.
6. As you study and speak with patinets (by the way, speak to as many as possible), the horror stories (worst cases) seem to be concentrated with surgery patients. I am not pushing or trashing any therapy; this observation is just the case.
The talent and experience of person performing the therapy may be the most critical link to success.
I hope this is helpful. Do your own homework, so your decision fits you and is made with confidence. With all the great choices you have, you will be fine.
Good luck!
robert1
Welcome, PCCK. Kudos to you as your post is very insightful and thoughtful for someone newly diagnosed.
While you list the # of cores found positive on biopsy, the %’s of cancer found in those cores is not shared in your post. The % is indicative of the volume of cancer, i.e. the tumor burden. A second opinion pathology report on the biopsy samples from a lab specializing in analyzing PCa slides is a critical piece of information that is needed prior to making a tx decision. J-H has a well-regarded PCa pathology lab (Epstein). The 2nd opinion path report will either confirm, upgrade or downgrade the findings of your initial biopsy report. If not already done, I recommend you obtain this soonest.
My husband’s stats were similar to yours when dx’d in Feb 2010. Age 67, no pre-existing health issues. PSA 2.8 @ dx, no rapid doubling, 10+ yr history of low PSA readings. Nodule found on DRE. Gleason 3+4=7, 9/12 cores positive, many at high %’s. PNI identified on biopsy. After further diagnostic testing, including and E-MRI with Tesla 3, the PCa was determined to be locally advanced, non-mets, staged at T3, intermediate/high risk. Following several months of PCa research, he elected a combination primary tx approach of ADT, HDR-B (high dose rate brachy—different from LDR aka permanent seeds), and IMRT. Ten to 15 years of research and clinical study data exist for HDR-B and RT. All tx’s were completed Jan 2011. I’m happy to report he is doing well, active, healthy and his PSA is undetectable. Our journey, along with the decision making process, is posted elsewhere.
If you elect surgery (either open or robotic RP) as your primary tx, the reason to choose RP is not so that you can obtain a post-op path report to “know” where you stand with the cancer. During our consults with many “state of the art” experienced/skilled uro surgeons, each informed us that the reason one elects RP is not for the post-op path report, but because RP would be the best tx with the highest odds for removing the tumor burden as well as any possible add’l localized cancer, with the goal of obtaining clean/negative surgical margins.
If you elect any of the many form(s) of RT, you’ll need to understand the different dosing (total Gy) protocols (success and failure rates) and whether the prostate bed and/or local lymph nodes will be included in the radiation tx plan along with the prostate, and why or why not. Carefully study all the clinical research data.
I am not suggesting any one tx is better than another. That is for you to decide after a thorough process of self education and research. First, you must be sure that your PCa is accurately (clinically) staged prior to considering which tx(s) might have the best possible outcome with the fewest short and long term side effects. Read, research, attend face to face PCa networking groups in your community where you can personally speak with survivors and ask questions. PCa is a couple’s disease. If you’re married, include your wife in the process. Her education, support and understanding will play an important role in your journey.
All the best,
mrs pjd0 -
Update
Thank you everyone for the support and encouragement. As was pointed out, I did not include details about the core samples in my original post. All 6 cores had a 3+4 Gleason score. Core length ranged from 9 to 20 mm. One core from the nodule had a tumor length of 0.5 mm which was only 4% of the core length. The other 5 cores, however, had tumor lengths of 4 to 13 mm, which represented 44% to 65% of the core lengths. My urologist said he was surprised by the tumor lengths because of my low PSA.
Since my last post I added a second appointment at Johns Hopkins. I will now see a surgeon and a radiology oncologist. My case has also been forwarded to the Multidisciplinary Center at the cancer center of my local hospital. A multidisciplinary group of doctors will meet to review the case, after which I will meet with an oncologist. I have also contacted Penn Medicine at the University of Pennsylvania for an appointment at the Roberts Proton Therapy center.
I continue to struggle with the surgery vs. radiation decision. It seems to me that if the cancer is contained, surgery is the best option to get rid of it. However, if it is not contained, radiation would be a better option. This decision is complicated because my case seems to be boarder line between contained and not contained.0 -
PCCK, forgive me for notPCCK said:Update
Thank you everyone for the support and encouragement. As was pointed out, I did not include details about the core samples in my original post. All 6 cores had a 3+4 Gleason score. Core length ranged from 9 to 20 mm. One core from the nodule had a tumor length of 0.5 mm which was only 4% of the core length. The other 5 cores, however, had tumor lengths of 4 to 13 mm, which represented 44% to 65% of the core lengths. My urologist said he was surprised by the tumor lengths because of my low PSA.
Since my last post I added a second appointment at Johns Hopkins. I will now see a surgeon and a radiology oncologist. My case has also been forwarded to the Multidisciplinary Center at the cancer center of my local hospital. A multidisciplinary group of doctors will meet to review the case, after which I will meet with an oncologist. I have also contacted Penn Medicine at the University of Pennsylvania for an appointment at the Roberts Proton Therapy center.
I continue to struggle with the surgery vs. radiation decision. It seems to me that if the cancer is contained, surgery is the best option to get rid of it. However, if it is not contained, radiation would be a better option. This decision is complicated because my case seems to be boarder line between contained and not contained.
PCCK, forgive me for not giving you a 'welcome' and sorry you have to be here sooner post!
I commend you for the research that you have done allready and will continue I'm sure.
One of your earlier posts you mentioned the concern about getting it all. Yes that is a valid concern. I was pre diagnosis a Gleason 4 + 3 (7) changed to 3+4 (7) post surgery. In my case I still wonder if they got it all since I had a positive margin on the prostate once it was removed and sent to pathology. So far all is good and I have my next psa draw a week from today. Though I won't know the results for one more week. So far it has just been a minor inconveniece of having the PSA Tests more frequent then some. I just passed two years post surgery in Mid August.
Just handle what is sent your way and deal with it by constant research and making the best choices that you can.
Lewvino0 -
You are on the right tracklewvino said:PCCK, forgive me for not
PCCK, forgive me for not giving you a 'welcome' and sorry you have to be here sooner post!
I commend you for the research that you have done allready and will continue I'm sure.
One of your earlier posts you mentioned the concern about getting it all. Yes that is a valid concern. I was pre diagnosis a Gleason 4 + 3 (7) changed to 3+4 (7) post surgery. In my case I still wonder if they got it all since I had a positive margin on the prostate once it was removed and sent to pathology. So far all is good and I have my next psa draw a week from today. Though I won't know the results for one more week. So far it has just been a minor inconveniece of having the PSA Tests more frequent then some. I just passed two years post surgery in Mid August.
Just handle what is sent your way and deal with it by constant research and making the best choices that you can.
Lewvino
PCCK
Those second opinions will provide you the info you are looking for. Deciding on a treatment is a tough job to all of us.
Unfortunately there is no test that can give us the exact location of the cancer. However, based on past cases experience doctors can assume places where the bandit hides. We all confronted a similar situation during diagnosis; is it contained or not?
Image studies are usually not recommended to guys with low PSA, on the assumption that a PSA over 10 is produced by a tumour of 1 mmm, which is just above the tolerance of usual MRIs and CT scans. NCCN guidelines are exactly based on this assumption.
However, your case is different (low PSA was a surprise to your doctor) and for peace of mind you could have some image studies done to confirm the diagnosis. These tests will also serve as “base data” for future investigations when doctors need to compare images.
MRI with spectroscopy (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578527/) is a good tool to check for the anatomy closer to the prostate. Another MRI with higher resolution is the 3-Tesla (http://mrisusa.com/articles_mris_avoids_biopsies.asp).
Recently there is a test named USPIO (Ultra-small Super Paramagnetic Iron Oxide) contrast MRI 3-Testla machine with Feraheme (the contrast). This test is being done at Sand Lake Imaging in Orlando, Florida, and it is known to detect cancer at the lymph nodes. (http://www.ncbi.nlm.nih.gov/pubmed/16101198).
Other tests to look for possible extra capsular extensions are the Collor Doppler which can localize new blood vessels at the outer shell of the prostate (possible activity of cancer at PIN); and Prostascint Scans and Positron Emitting Tomography (PET), which were unreliable in the past but now are done with newer contrast agents.
Just type the names in a web search engine for details.
You can add in your doctors’ list of questions inquires on the possibilities of these tests to find details on your diagnosis.
Hope you get that peace of mind.
VGama0 -
Hi :
i just had dinner with
Hi :
i just had dinner with one of thier top research guys at JH. Your dead on with your assesment. I gotr diagnosed on Friday gleason 3 +4 and 1 of 15 samples with 95%involved. The sample that was involved was at a difficult place to obtain a sample and most other places would have never got it and I would have obtained a false negative. My friend is a brilliant PHD and MD. I think your going to a great place and they have a great tem. Who will be your doctor there? Good luck. BTW, they doing bone and CAT scans on you?0 -
Similar Dilemmalewvino said:PCCK, forgive me for not
PCCK, forgive me for not giving you a 'welcome' and sorry you have to be here sooner post!
I commend you for the research that you have done allready and will continue I'm sure.
One of your earlier posts you mentioned the concern about getting it all. Yes that is a valid concern. I was pre diagnosis a Gleason 4 + 3 (7) changed to 3+4 (7) post surgery. In my case I still wonder if they got it all since I had a positive margin on the prostate once it was removed and sent to pathology. So far all is good and I have my next psa draw a week from today. Though I won't know the results for one more week. So far it has just been a minor inconveniece of having the PSA Tests more frequent then some. I just passed two years post surgery in Mid August.
Just handle what is sent your way and deal with it by constant research and making the best choices that you can.
Lewvino
PCCK,
Thanks for sharing the add’l info. PJD had a similar dilemma: was the PCa contained or locally advanced, outside the gland, i.e. was there extra capsular extension (ECE)? That is the million $ question for men with a dx of intermediate/high risk PCa that has been confirmed by a 2nd opinion pathology biopsy report.
PJD felt he needed this info in order to better evaluate which primary tx option (or combination of options) offered the best chance of successful outcome with the fewest side effects. His bone scan and CT w/contrast were both negative for distal mets to bones or organs. These negative results are often the case unless PCa is very advanced, since those tests won’t pick up sub micro PCa mets. You probably already know that sometimes, a low PSA in the context of a higher Gleason, especially with high volume PCa, MAY be indicative of a more aggressive form of PCa. The reverse MAY also be true: a higher (within a range) PSA may not always be indicative of PCa--BPH, infection, etc, may be potential culprits.
On our own, we sought out two add’l diagnostic tests from two different medical venues. One was the E-MRI (endo-rectal MRI) with spectroscopy using Tesla 3 technology. The other was a color doppler ultrasound. Both test results confirmed what we knew might be possible based on the preliminary info in clinical biopsy path reports...that PCa was identified locally, i.e. ECE, in one seminal vesicle. None was “identified” in the local nodes.
This was devastating news, but it was the info PJD needed in order to help better evaluate his tx options. We found that research data specifically relating to T3 intermediate/high PCa is more challenging to locate since there isn’t as much data available for this PCa stage as there is for either low or high (advanced) risk PCa. This fact only complicated the already difficult and confusing task of evaluating the tx options for “borderline” intermediate/high risk PCa cases.
Based on our experience, if possible, I recommend that you seek out these two imaging tests. Of the two, IMO, the E-MRI with Tesla 3 is the more important test. The E-MRI is not the same as a standard MRI and we found its availability is usually limited to large teaching hospitals/medical centers. It is important that the doctor reading the image study is knowledgeable and experienced. We asked for it to be re-read by the Dept Head. If you have the test done, as with any imaging studies, ask for a written copy of the report as well as a copy of the disk (with the imaging). You may need both of these if you’d like it to be re-evaluated at a different medical venue, as we did.
BTW, while J-H has an excellent reputation as a world class medical center, a man whose knowledge about PCa I greatly respect, has expressed the opinion that J-H PCa doctors are often inclined to recommend RP for most PCa cases and stages (excluding the most advanced). You may want to keep this in mind when attending consults with J-H physicians and ask your questions accordingly.
I hope you choose to update the forum as your journey continues. Good luck.
mrs pjd0
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