I was diagnosed on November 2, 2023. Gleason 3+3=6, grade 1. One of the twelve cores was 14% cancerous. I was advised that I was a candidate for active surveillance for the next year with periodic PSA checks and another biopsy in a year.
I saw Dr. Catalona at Northwestern University in Chicago for a second opinion on February 12. He reviewed the pathology report along with labs I had done at Northwestern that day and it appears my biopsy results are inconsistent with the labs as well as the digital exam he performed so we had the slides reviewed by their lab.
I spoke to Dr. Catalona yesterday with the results of their review. While they did find cancer in only the one core, it was 50% cancerous. Their lab also assessed a Gleason score of 3+4=7. He went into detail about this score and cited percentages for each number that I don’t yet fully understand. But due to my increasing PSA since May 2023 (7,6,9,11), the updated Gleason score, my alarmingly high (his words) Prostate Health Index, and the seemingly normal digital exam, he has recommended treatment sooner rather than later.
I’m working today to schedule a prostate MRI as well as a PET scan.
Based on the updated assessment, I’m a bit overwhelmed. I don’t fully understand all the numbers and terms yet or how the pieces all fit together so I don’t have a way of determining the urgency for myself.
I’m still sexually active and all the treatments scare the hell out of me.
I've sifted through a lot of information and read several of your posts and stories and I’m grateful to those of you who have shared here. Your posts go a long way to help keep me calm.
I’m open to any advice or experience anyone would like to share with me.
Thank you.
Jeff
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LakeGuy22
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The only thing that is important in determining if you are a good candidate for active surveillance is the volume of pattern 4. That is a product of the volume of cancer in the GS 3+4 core and the percent pattern 4 in that core.
If you decide to get treatment, I recommend you talk to Arica Hirsch at Advocate Lutheran General Hospital about SBRT and to Brian Moran at Chicago Prostate Center about brachytherapy.
It may cost $400 and tell you what you already know. I don't understand what the MRI and PET scan are for. You have favorable intermediate risk PCa - so the risk of distant metastases is negligible. Maybe meet with Hirsch and Moran before expensive and useless imaging.
If I understood Dr. Catalona, the MRI is to determine the size and location of the cancer in the prostate. They’re estimating it to be about a half inch in diameter. I have no idea how they’re able to do this just based on one core and some labs. He wants to do the PET scan too see if it’s anywhere else. Wouldn’t the results of these tests be needed when discussing available treatment options?
Hi - To quickly answer - as I understand it - (a) your core - the 50% one - will have given the reviewing team a stated/suggested diameter. The MRI will follow this up and give a better picture of the complete surround which they can then precisely measure. Given the suggestion of the size of a cancerous lesion/focus you mention I think it is quite sensible that (b) they would want to do either a PSMA PET CT or a PSMA PET MRI scan. This is for your own safely/well being certainly. Once you get these confirmed - or at least arrive at 'more confirmed' figures - (I have come to understand that - at best - prostate cancer is ultimately an 'undefined art') - you will be in a much better place to best define future action. All best wishes in your treatment, LakeGuy22.
Radiation oncologists have to do imaging for their planning studies. They will have specific requirements. PET imaging is a very bad idea for favorable risk patients, and will not usually be approved.
I feel for you. I’ve been there. It is overwhelming- your life plans are making a radical shift. But, in totality, your description of your cancer says your in a good space. Take your time to decide what treatment you want. Get a few opinions about options. Choose carefully- there are plenty of ugly side effects to avoid. But most of all, try and keep in control. It gives you great strength. All the best Jonathan
Hi Jeff! Coming to this group was a great decision. I am 53 and was faced with making the same decision. I too, got very confused from all of the numbers they were throwing at me but in my mind, cancer is cancer and I wanted it taken care of. I am also a married gay man and I was so overwhelmed with all of the treatment options but I too, am still sexually active and I wanted to make sure that whatever option I went with did not compromise that. Based on everything that happens after, surgery was just not option for me. In my opinion, it basically leaves you sexually useless and I was not going to let that happen to me. Bottom line, I decided to go with Cyberknife (SBRT) and I could not be happier. The 5 treatments were no walk in the park but they were tolerable. I am blessed to report that I did not have any side effects during or even now after the treatments. My doctor put me on Cialis before I even started treatments so luckily, I still have no problems there. Although, it's only been a little more than a month, I am still ejaculating however, the amount and consistency has changed a bit. I did not have any bowel issues at all. My doctor implanted a SpaceOAR gel spacer between my prostate and anus to protect it from the radiation so I believe that was a game changer. Now, we wait. The PSA tests begin in April and I have been warned that the first maybe higher than the rest but I am hopeful that everything worked out. Take your time, get multiple opinions and make a decision that works for you. Please feel free to write if I can help in any way!
Thank you for sharing your story, Bill. “Useless junk” is, in my mind, what I would be left with following surgery, too. But after reading stories here of men who chose that option, I have a little more hope that I might be over exaggerating that outcome . Besides, I think, I might spend less time on Scruff and Grindr!
Please keep me updated on your progress and good luck to you!
Hello Jeff, I too am a gay man diagnosed at 54 with GS6. Year one I was on AS, then after the second biopsy they found 3+4 (45%) in one core. Everyone's journey is different and I highly respect Tall_Allen and he has shared an incredible amount of good information to consider over the years. I opted for a couple different Focal Therapies (TOOKAD, Cryoablation) at MSK and am fortunate to report that there has been no reoccurrence and December will be 5yrs. I am pretty sure Tall_Allen will share a document where focal therapy does not always have the best track record, but for me I am happy that was an option that I took. Other than right after the treatments, negligible side effects in my case. You have received great advice from what I have read. Go slow, get other opinions (especially John Hopkins second opinion) and do your own research. I wish you the best in what ever direction you take.
Thank you, Philip. There is so much information to digest. I’m slowly piecing things together. I appreciate you sharing your story and the advice you’ve offered.
Hope this offers you some hope… long time gay man!
I was diagnosed at (age 54) in 2004-5 having PSA of 6.9 and gleason 3+3. At that point i was also sexually active…
There wasn’t much communication about %s, cancerous, etc. I wasn’t familiar with AS back then and don’t remember that it was talked about much…
I had a number of conversation with men having had a variety of Treatments….There wasn’t a lot of focal therapies available…definitely didn’t know anything about HIFU,,cryotherapy, etc…(Sounds like the dark ages when it comes to Pca).
I decided that EBRT (external beam radiation) was going to be a good choice…it turned out well…Ejaculations eventually became weaker as time went on. However, for years afterwards i could still get somewhat “ hard “, etc.
There are a number of different treatments today using different forms of radiation… Many articles are available on the internet as well as youtube videos…
Today, there are more choices which possibly make deciding more difficult. However, i am not looking back…
Love the city! Thank you for sharing your story. You’re right, there are more options today and a lot of information. It makes deciding on the right one for me a little difficult. Have a great Tuesday!
I was diagnosed Gleason 6 Oct 30 2020 & My urologist told me basically that surgery was my ONLY option. He stated that radiation wasn't because of my age and that if the PC returned, surgery wouldn't be possible I was 55 and my psa was 5. needless to say, I freaked! So I did some massive research and found many other treatments available. Of course treatment options are based on your scores - Gleason, number of positive cores, and tumor(s) grade. Active Surveillance is a TREATMENT option - and only when I brought this up to my urologist did he reluctantly acknowledge this! So then I got multiple other opinions - a new urologist, a oncology surgeon and a radiologist - all of whom, after reviewing my scores, stated they would not recommend treatment at this time. The radiologist said he COULD if I really wanted, but didn't recommend it. There are newer treatment options like HIFU - High Frequency Ultrasound and FLA - Focal Laser Ablation, both of which target specific cancer areas of the prostate and don't destroy all the tissue, so men don’t typically have urinary incontinence or ED. The one side effect is dry orgasms - but hey, dry orgasms are better than no orgasms.
I would really recommend getting a second opinion and direct look at the biopsy tissue. you can send your biopsies to Johns Hopkins for an addition direct review of the tissue. It costs about $300 and is all done through the mail. Keep in mind this can cut both ways, as they could come back with a higher grade of cancer, same, or lower - all of which can help guide you in your treatment decision. I sent mine there and they came back confirming the Gleson 6 score but downgraded the cancer to one core from three. Overall, it's important not to have a knee-jerk reaction to the word "cancer" and just immediately cut it out. Take your time. Decide what works best for you - not partner not your family or friends, but YOU. You are the one who will have to live with the potentially life long devastating side effects of incontinence and ED - and the emotional toll that comes with it. Input is always good, but ultimately you’ll have decide what YOU can live with. Keep in mind that PC is a slow moving disease so taking a few months to research and get educated is ok. Many more men die with PC than from it.
I am currently still on active surveillance and I've had no change in three years and if I'd listened to my first urologist, I could possibly be suffering through some awful side effects now. That could change, but I'm staying the course for now and monitoring.
one more thing, once you get your MRI images, you might want to consider sending them to Dr. Busch in Atlanta, who is one of the top radiologist in the country. When my last images from UCSF had conflicting information from the annual image before I sent them to Dr. Busch at Busch Center and he basically said the radiologist who read it was wrong, keep in mind a lot of these radiologist just sit in rooms all day and look at slides and there's no personal connection. But when you have a consultation that you pay for you get more personal care and consideration. Dr Busch sent me his opinion which I forwarded to UCSF and they actually revised theirs on vis findings. So unfortunately, it's a constant fight, but it's our fight.
also want to raise the flag about MRI contrast, gadolinium, which they say safe, and is out of your system in 24 to 48 hours, but that's not true My fifth MRI made me really sick which I've been struggling with the toxicity for nearly 3 years and I'm still excreting it in my urine . I won't get more contrast. The new Tesla three or T3 MRI machines have very high resolution and it's not necessary to have contrast to a prostate image accurately. They maytry to push you for contrast, but really, I strongly urge you to request it without contrast.
I had radiation therapy when I was 59. It has been 4 years now. It took many years but my PSA is finally below .4 and it keeps falling. My PSA went from 7 to 10 in about 18 months so based on everything we concluded I needed treatment. Because I had prior abdominal surgery my Urologist did not recommend surgery because the DeVinci machine does not like scar tissue (Thank god), not that I would have listened. 😜 I have not noticed any real difference in erections and I still ejaculate although it has a different texture.
I interviewed two radiologist from two different institutions. I talked with both institutions about brachytherapy and SBRT.
1) One institution only offered "low dose" seed implants, and not High Dose Brachytherapy (HDR) which from what I read had better results. They also offered an older Cyberknife machine.
2) The other institution offered MRI guided beam radiation (Mridian- which was less then 4 months old and is the latest version of beam radiation) -and High Dose brachytherapy.
So my choice was easy and I chose the second institution. But I did not like my radiation oncologist. Luckily, they assigned a social worker, and after one unfortunate appointment where I overheard the radiation oncologist complain about my questions, I talked to the social worker who asked if I would trust her to try another radiation oncologist. I did and got a gay radiation oncologist who was outstanding. I chose SBRT with the new Mridian machine. brachytherapy seemed too invasive and painful to me.
So there are a few different things to consider:
1) Never take the Urologist opinion at first glance. Take appropriate test and refer your data out if you have any doubts. If you don't like a doctor, fire them.
2) Always talk to a radiation oncologist. Ask about all treatment options. Keep in mind that there are a variety of sub-options within options. HDR or seeds, Mridian, Cyberknife or even Proton therapy (If that were an option for you, that would merit a separate discussion as it is still new. I am sure Tall Allen would have comments about it.)
Sounds like you are taking it all in, which is great. Good luck. I have not regretted doing SBRT with the Mridian machine so far.
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