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Posted 1/20/2019 11:28 AM (GMT -5)
Well I have not posted in a while, a little background I was diagosed with Glease 8 prostate cancer in 2008 had my prostate removed robotic, pathology said organ confined. 2009 PSA was back they found out I had encrusted clips in my bladder from the operation. PSA continued in 2010 had 35 radiation treatments of prostate bed. Still same PSA of a little over 1.5 Dr said cells somewhere but nothing shows up. Now Nov 2018 PSA is doubling fast go for new Aximum Pet Scan that is suppose to be the greatest, for detecting metastatic Prostate cancer it found a 3cm mass abutting my sigmoid colon. Cancer board met they all agreed since this is the only area to light up surgery to remove would be best option for cure. No biopsy they were afraid cells would get into colon. Had bowl resection surgery a week ago, had to stent kidneys for robotic surgery had hard time getting through bladder because of scar tissue. Cath in for a week now urine just runs out of me same with bowl. Path came back benign false positive on Aximum. Has anyone else had one of these scans? I am now in a lot of pain in the groin area not sure if bladder infection waiting to call Dr but since Sunday may not hear anything. Moral of the story get a biopsy before any surgery.
Jerry 1

Post Edited (Jerry1) : 9/20/2019 8:16:41 AM (GMT-6)

Posted 1/20/2019 4:06 PM (GMT -5)
Very surprising that you would get a false positive on such a scan. I thought only PC results in an uptake.

I had the Ga68-PSMA scan last month. The result was 2 spots (nodes) and I will be doing SBRT to those nodes. I have a rising PSA. I never even thought of a false positive.

In your similar case, with a rising PSA, I wonder where your PC is hiding? Is it possible that the biopsy just missed it and the identified area really is a PC?

Mel
Posted 1/20/2019 8:54 PM (GMT -5)
Their was no biopsy they were so sure that the Aximum Scan was correct, they felt it was too dangerous to let cells enter the colon with a biopsy. The doctors also had me tale a cat scan to verify the position of the mass. It was the only place on my entire body that lite up. So now that they say it is benign why is my PSA going up and where is the cancer? They said I cannot have another PSA for 6 to 8 weeks. Right now I have terrible pain from the robotic surgery and no control over urine because of stenting through all the radiation scar tissue. I have been going to the Lynn Cancer center for 10 years where they have multimodality board meeting that only deal with Urological Cancers so all these doctors made a bad call. So just be careful when deciding on treatment. I guess with a Gleason 8 I should be happy I lived this long. Hope to live am lot longer.
I plan on having the pathology reviewed by other pathologists.
Posted 1/21/2019 4:06 AM (GMT -5)
Jerry, I hope the pain is easing off. If not, see someone asap both for pain relief and sorting it out. Don't put it off. I knew someone who had really bad pain and it ended up being both a bladder infection and some fluid build-up. A ct scan showed the latter. Sorted out fast, but not pleasant when it was going on.
Posted 1/21/2019 12:42 PM (GMT -5)
Consider getting a complete workup somewhere else. Maybe Cleveland Clinic or Mayo in Florida. Something just doesn't seen right. Also send your slides to Epstein at Johns Hopkins.

Good luck....you will live a lot longer!
Posted 1/22/2019 8:15 AM (GMT -5)
This scares the crap out of me.... My oncologist suggested that if my PSA keeps going up get a Pet Scan...Now I don't know what to do... I will have to make a decision my April as that is when my next blood test is and if it goes up over .2 then I will have to make a decision on Lupron and Pet scan....
Posted 1/22/2019 3:07 PM (GMT -5)
Thank you all for the advice I am on antibiotics now for bladder infection, and see surgeon again tomorrow for the no sleep an running to the bathroom.
Posted 1/22/2019 3:19 PM (GMT -5)
Been away for awhile and think I am on the same path as you and appreciate the insight to this long journey that for me is starting all over again. Thought I had this under control. Kinda freaking out. Thanks
Posted 1/22/2019 3:21 PM (GMT -5)
Good luck tomorrow, Jerry. Hope you get some relief soon.
Posted 2/1/2019 8:53 AM (GMT -5)
Well it has been 3 week since my colon resection for a benign tumor that I was told was prostate cancer recurrence as per Aximum pet scan BS. I have lost 21 pds just starting to be able to eat.
On all kinds of meds had another cat scan on Wed showed my colon is inflamed they are not sure why. More antibiotics and finally a mild pain killer that just takes the edge off the pain. Unable to sleep up every hour to the bathroom. I wanted to let you all know that this type of surgery without a biopsy is nuts. The Aximum Pet Scan was not accurate, although they charge you a fortune for this test.
Jerry1
Posted 2/1/2019 9:58 AM (GMT -5)
sorry to hear what you're having to endure.

hoping that you start getting better results soon.
Posted 2/1/2019 9:27 PM (GMT -5)
Sorry to hear about your experience. When my PSA rose to 0.9, I had an Axumin scan that still found nothing. I am on the waiting list for a 18F-DCFPyL PET/CT scan, which is supposed to be one of the most sensitive. My plan is to spot radiate what they find. If I can't get that, then I will settle for a Ga PSMA scan (both are more sensitive than the Axumin). I will keep your experience in mind if/when they find something. My PSA just jumped to 1.46 in the past 6 weeks.
Jeff
Posted 2/3/2019 8:52 AM (GMT -5)
Im_Patient
Have they talked about Lupron to you. My oncologist said that he wants to do a Pet scan if my PSA keeps rising. I thought by the time it hits .2 that you are considered "reacourance" .
Posted 2/3/2019 2:25 PM (GMT -5)
Thanks for the comments I will probably end up on Lubron but wanted to avoid that is why I choose surgery looking back not a good idea.
Posted 2/3/2019 11:31 PM (GMT -5)
Steve, my oncologist is on board with my plan. I plan to find whatever I can via scan and then radiate it, with the intent to avoid HT for a couple of years if the PSA drops. Yes, my doc has asked if I want to start Lupron, but I want to delay as long as I can manage. Just trying to delay the inevitable.
Jeff
Posted 8/31/2019 9:51 AM (GMT -5)
Well got the results of the Axumin Per Scan cancer is same place had not spread but grew from 3cc to 5cc. Not responding to Hormone treatment. Dr whants my wife and I to met with Radiation Board on Thursday to discuss possible treatments, does not sound good.
Jerry 1
Posted 8/31/2019 2:30 PM (GMT -5)
Jerry1, sorry that this has happened to you. It's clear that the surgeon missed the mass when he took out the colon segment. I would expect that radiation will be helpful and even with a mass that large you can still hope for a cure. I would certainly go for it myself. It will depend on the exact location of the tumor relative to where you have already been radiated. Maybe your MO will try some of the other available drugs, too.
Posted 9/1/2019 7:43 AM (GMT -5)
Just had the axumin F18 PET scan myself 3 weeks ago. 2 pelvic lymph nodes lit up like stars in a darkened sky. Last PSA was 2.47, next blood test is this coming week.

I will also be making an appointment with the RO to see if they can be cooked, am scheduled for Eligard + Xtandi as well, kind - of playing it by ear now. If the spots can be cooked I will wait on the chems, if not I will do the do. sad

The standard for 'biological reoccurence" used to be 0.5 ng/dL, not sure if that counts as that any more.
Posted 9/3/2019 8:47 AM (GMT -5)
I had a positive Axumin scan with a spot on my spine and one lymph node.

A follow-up MRI didn't find anything so my Onco said it was a false positive.

I'm a G9 and I guess with my PSA at the time 1.4, I had an 8% chance of FP.
Posted 9/9/2019 9:14 AM (GMT -5)
Well met with my oncologist and tumor board at Lynn Cancer center and they all agreed to late for radiation and hormone treatment not working. Need to have open operation to take out tumor so they and see and feel it. Latest PSA 70.8 tumor size 5.2cm and growing very aggressively. I have an appt with Cleveland Clinic on Monday.
Posted 9/9/2019 9:44 AM (GMT -5)
Jerry,
Thanks for the update. Good luck for the surgery. Have the doctors indicated a prognosis?
Posted 9/10/2019 12:03 PM (GMT -5)
The doctors at Lynn feel if they remove the tumor that she cure it since it is not showing anywhere else but you know how that goes. I meet with the surgeon at Cleveland clinic on Monday so will know more.
Jerry
Posted 9/10/2019 12:43 PM (GMT -5)
Sounds promising Jerry.
Good luck!
Posted 9/10/2019 3:39 PM (GMT -5)
Steven Wexner and Eric Weiss are said to be the two best Colorectal surgeons at Cleveland Clinic - Weston. Be very careful, as others differ in experience and specialty, and don't worry about their sometimes lacking bedside manner. ;-)

Best of luck!
Posted 9/20/2019 9:15 AM (GMT -5)
Well I met with surgeon at University of Miami, he is one of their top colon-rectal surgeons he felt the operation to remove the tumor would be very dangerous, he said he would do it but I may not be happy with the outcome. Then I met Eric Weiss at Cleveland Clinic who was in touch with my Oncologist and had a lot of background on my case. He was very positive about surgery and then scoped me right there. He was able to see the damage done with my previous surgery and a bump where the tumor is pushing into my colon. He said if the tumor is not removed the tumor could block my entire colon. Went yesterday for MRI and have another 80 minute MRI on Thursday he wants to be sure there are no other tumors before it presented it to his tumor board for discussion. So now I am just waiting to see what happens.
Jerry1
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