I was diagnosed with Pca on November 13, 2017. Age 63 at the time. Low PSA 2.6 but DRE indicated a nodule. I am 6'4" tall and weighed about 255 lbs. My internist sent me to a Urologist saying probably nothing because of low PSA. (I watched PSA closely as my Dad died of PCA in 1984 at the age of 60. I was not aware of false negatives with PSA) Urologist expressed immediate concern and we scheduled a biopsy. Test administered on November 3, 2017, and the Dr called on November 13th at 7:30 PM to orally deliver the results. 8 out of 12 cores showed disease with one core Gleason 9, consisting of 4,5. The rest were 7 and 8. Started immediately to do CT scan, MRI, and Bone scan. All looked good. researched and interviewed but I was anxious to "remove" cancer from my body. Opted for RP on December 19, 2017, at the University of PA. Surgeon report said it looked perfect to the naked eye as they removed it. Then I received a call from a nurse on New Years Eve letting me know that subsequent tests indicated significant extra prosthetic evidence of disease on the outside skin of the prostate. No visible involvement of lymph nodes. Waited for return to the surgeon in 90 days to get first PSA post RP. a disappointing. .58 I was looking for .03 or lower. Waited 30 days and it was 1.3. Doubling rapidly.In the meantime I became a strict vegan on November 20, 2017. I only eat things that are antagonistic to hormonal cancers. I have a very vigorous exercise regimen. i was not trying to lose weight but managed to lose 30 lbs or so. I .haven't felt this good in years. MO recommended starting hormones right away and discuss chemo in short order. They recommended radiation of th prostate bed based on a benign MRI they looked at. I talked them into adding a sophisticated auximen PET scan. They fought with the insurance company and we got it approved. a couple of things that were noted before elevated to suspiciouswith mor detail and it was decided there were 3 lesions. I interviewed 2 medical oncologists. I did not connect with either one. The 2nd one wrote the prescription for a starter dose of zytiga in preparation Lupron. called it in to the pharmacy. I drove to the pharmacy, waited in line, and then canceled the order. I needed more time to think. i spoke the radiology team and came for a face to face.
she listened to my concerns and experience, made observations about my personality. We decided that I was not a flight risk so that it was ok to let me engage in the protocols on my time. My decision was to let them fry the lesions with Radiation, see how that works and reevaluate. Radiation took place on my midsection and pelvic area.
I also have been increasing the amount and intensity of food changes, exercise effort, My Dr told me to wait for 90 days to take a PSA reading. I decided to go for a second opinion at Johns Hopkins and got a reading then. 'very disappointing 7.8, was 56 days. I did another at 80 days which is down to. .73 My father (of blessed memory) always said that things that seem too good to be true, generally are. so I am ready for anything and i am searching for the catch. What is the catch? I see the DR next week. I have been cut and burned so far. I am taking the chemical castration off the table until there is evidence of deterioration. i will monitor PSA religiously. I am excstatic with progress since Thursday. Over the moon with success in slowing Cancer down.
does anyone know if i should be looking for other markers that might indicate cancerous growth?
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Philly13
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The 3 lesions that were radiated generated PSA, now this part of the total PSA value declines. However, this treatment may just slow the disease, at one point the PSA value will rise again and new lesions could be seen on a new scan.
That was my reaction as well. Unfortunately, he did not have adjuvant ADT with his radiation, which might or might not have cleaned up the remainder. The question is - what to do about it now. Should he wait for PSA to rise and mets to become visible to begin on intermittent ADT or start now? I believe in early intervention, but the only real evidence I've seen so far for it is the TOAD RCT, and we only have 5-year results so far.
I would view Philly's treatment as salvage radiation. Since he has Gleason nine I would now follow the trial reported by Shipley and take Bicalutamide for two years. Then go from there.
RTOG 9601 used Casodex for 2 years because it was started before Lupron was available. It was also used adjuvantly to radiation - too late for that for the OP.
My reaction is similar but I am going to take a holiday from new programs. It is not a big risk, in my opinion, to wait and continue to monitor it closely. It feels very good to get healthier and stronger every day as I have changed my life quite a bit in this last year. I feel like I have some small degree of control for the moment and an active participant in the battle. I am learning more each day. I am working with my team at Universtiy of Pennsylvania and in addition, a MO from Johns Hopkins in Baltimore. I want to enjoy how good I feel for a while and I will not get complacent, which would be very dangerous under the circumstances. You state the decision points as they are being considered. I communicate with the Doctors regularly. Thanks for your thoughts. I have been lurking on the board for a while now. Your posts are very valuable. Thank you for sharing the fruits of your labor.
You have been using “whack a mole” method. I believe that your PC is already systemic and you’ve treated those that can be detected via current scan technology. What about the ones that are there but still stealthy? From your description, you are healthy and good shape. I am a believer that once the “cat is out of the bag” aka met outside the prostate, you need to attack the known and unknown cancer cells with all the weapon available with full force i.e., chemo + ADT. The time to do this is when you are still strong to withstand the side effects, not later. If these fail years later, then there are targeted and immunotherapy (Provenge, PARP inhibitors, PD-1 immune inhibitors, etc.).
The disease is systemic I am going to take a holiday from starting any new treatment for a while. I will monitor my labs very closely. I happen to be due for an annual physical and it is scheduled for the end of October. My physician sends blood to the Cleveland Clinic for a full workup. We will be looking closely at all of the results this time to see if there is evidence of cancerous growth. He has Pca also and we compare notes all the time. Insurance says they will approve a PSA test every 3 months. I found Directlabs which doesn't need a prescription for blood tests. It costs $44 for PSA test (it was on special in September for $34). They use Quest labs. I will be watching the PSA very closely while I consider all of the options. I am being treated at U of P and went for a second opinion to Johns Hopkins. Like you, they advocate for a kitchen sink approach but have opined via email that surveillance right now is an appropriate response. I was fully prepared to become aggressive by the end of October. The plan has changed. It is very helpful to be able to exchange ideas with people in the "club". Thanks
If there is any evidence of bone metastasis it could affect/raise your alkaline phosphatase level in your blood. Look at your most recent blood work for this marker.
Mine is 63 and it has been like that for 3 years. I didn’t check further back yet. Is this a good number or bad. The limit on the test is less than 130
Systemic treatment is in order..Confusing that the surgeons naked eye did not get clear margins..I thing you have been through a hell of a lot of therapy..
I am not 100% sure if I understand. I will respond to my interpretation of your comment. The surgeon said that it looked like the margins were clear. They sent the removed prostate to be tested and it indicated there was extra prosthetic evidence of disease that was not visible. In my case, there is still no evidence in lymph nodes of disease and the progress seems systemic and traveling through the blood. I had an MRI and then followed with the Auximen (fluciclovine) PET scan.
I’ve become a vegan also but eat seafood occasionally. What foods are you eating that are antagonistic to hormonal cancers? What vegan foods are you avoiding?
Antagonistic is probably a bit of an overstatement. I am focused on foods that are agonistic for cancer. I have eliminated animal-based foods including dairy. I don't do moderation well, so it is easier, for me, to stick with a strict vegan diet than to add things like seafood. No harm in seafood but I choose to do it this way.
Thank you for the response. I look at this website erratically and have not had the chance to check back for a while. I live close to the University of Pennsylvania and that is where I am being treated. I did genetic testing there and was (surprisingly) negative for all mutations. It appears gene mapping may be a different process. I will call Foundation-One to discuss their test and compare it with what I did. Thank you
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