The kind Moespy here in the group suggested that I write a post about my upcoming treatment. My RP was in Dec 2017 and I was a Gleason 9...three positive lymph nodes and seminal vesicle involved. While my initial post-surgery PSA was a wonderful .009 it slowly crept up over two years to a .38 in Oct 2019.
After speaking with some of the attending physicians/researchers I was determined to have a Gallium68 PSMA PET scan. I'd really recommend attending one of their conferences if you can swing it...I learned so much!
After putting out feelers for clinical trials and getting no bites I'd decided to go to Germany or Australia (I live in the US...it's not FDA approved yet) and pay out of pocket for the test as well as transportation. Suddenly, just prior to getting the ball rolling on going overseas, I heard back from UCSF in San Francisco...I'd been approved for their G68 trial. My original surgeon had to put in the order and there was a bit of paperwork involved. The test was only partially covered by my employer's insurance since its still (sadly) under review by the FDA and I paid $3300 for the test. I've been told that approval may be just months away...for god's sake hurry up!!
The result of the scan was two lesions were found...each 6mm in size and one each on a lymph node. Now to decide what to do with that information. I was excited by what I'd learned about SBRT/Cyberknife treatment in LA and definitely was considering it as that option is available in my city (Seattle). But then I had a consult with my original surgeon...she was excited to tell me that one of the surgeons in her clinic is doing a study with 1/2 dozen other doctors in the US where they are doing robotic lymphadenectomy for early-onset oligometastatic prostate cancer. I was a perfect candidate it seemed...and after my consult with the surgeon, Dr. James Porter in Seattle, the date was set to attack this surgically. He'll take out the two lymph nodes and nearby nodes and suspect tissue if needed as well. It's thought that the two nodes were already involved but missed in my original surgery in 2017. It's still major surgery...will take about 3 hours and I'll be hospitalized overnight to watch the lymphatic fluid drainage.
Dr. Porter said that his group of surgeons is close to publishing the results of their surgical treatment for early-caught metastases and that the results have been quite promising. I don't know the timeframe of their study so can't speak to that. His plan for me is continued monitoring of my PSA...and when it gets up to a .3 or so then I'll have another PSMA scan and we'll again look at a surgical option. This leaves radiation and ADT as future tools in the toolkit and puts those treatments off until absolutely necessary.
Both the radiation oncologist and the surgeon said I was a lucky guy getting into that G68 trial and that it has likely added years to my life. I hate to throw out such a powerful word but it seems it could potentially be a cure IF there are no other lesions that were undetected. I'm assuming there likely will be more but, according to the study linked below, a cure is potentially possible if those are in fact the only two spots.
My surgery is coming in a few days...wanted to pass this on to those that might find it useful. Best wishes to my fellow warriors!
Great job with the details and finding out ..Wow! Three hour surgery ! Heal up , and recover well ...Im are pulling for all to be successful for you .. live well brother .
There is a similar trial in Vienna Austria I have posted about in the past. The fact is that only very experienced surgeons can do it. My off my head estimation for this is one out of ten. Good luck and keep us posted.
Here in Australia a PsMa Ga68 PET/CT scan costs usd $350, and is widely available.
I was diagnosed Gleason9, inoperable, Psa 6, in 2009. ADT +EBRT held Psa < 5 until 2016, when I had No 1 PsMa scan. PG had a lot of Pca, and 3 upper thorax lymph mets were found, maybe 2mm dia. But next year after another PsMa Ga 68 scan, a lot more mets were found and in 2018 countless mets were found despite Cosadex and Zytiga being added to ADT for awhile until they failed to work, plus some extra IMRT to PG, .
The idea of having any surgery to remove my lymph nodes seemed silly, because there were so many mets.
Well, I had chemo in 2018 and that failed after 4 shots then I had another PsMa scan that showed some new mets so I went to Lu177 which is supplied by Theranostics Australia for about usd $6,500 per shot, and I had 4 shots. The PsMa scans showed that Lu177 should work well, and I began Lu177 with Psa 25 in Nov 2018 and in Nov 2019 after 4 shots of Lu177 Psa was 0.32.
But its now rising again, and I may have more of it, maybe with a little Ac225 added which works better on bone mets than Lu177. I may have next PsMa scan soon when Psa rises a bit more to see the big picture better. I think maybe it will be my 7th PsMa scan.
I am now beginning to glow in the dark after so many scans, and if I drop my glasses on the floor at night, I can pull me trousers down and shine the green-purple light out and find the glasses easily.
Today I cycled 84km, and I felt 27, not 72, so I qualify as the healthiest stage 4 Pca patient at my local public Govt hospital.
The last scans were CT done a month ago with radioactive tracer, and all they could find were 2 small active bone mets. These may be what are generating the Psa that was 1.3 at the time. So at no time has there seemed to be any reason for surgery to chase down mets wherever they popped up because after awhile a man becomes a bundle of scar tissue, and still more mets pop up.
The systemic action of Lu177 seems to be good when there is enough reasons seen in PsMa scan that Lu177 will be effective.
I seemed to have Pca that was not much affected by EBRT or IMRT, ie, beam radiation resistant. The beams are X-rays. But Lu177 puts out Alpha or Beta particles, and action is targeted and contained to PG or met sites, particles only travel 1mm or 2 mm so its vastly superior type of radiation compared to the X-rays. But some men may have a lot of mets that express low PsMa avidity, so Lu17 won't work, and they have a real battle to face.
My fight is not over, but I doubt any surgery would be useful.
Cutting out bone mets is not easy, could weaken bones, and not be effective.
The more I consider bone mets, the less afraid I get of them. The main thing is to get treatment to stop them growing big, and thus cause spine vertebra to begin to crack and compress, and causing terrible pains. The biggest bone mets I had were pea sized, but they were inside femur and pelvis and did not extend into hip joints, so there was little bone weakening and little bone pain as they grew bigger. The Lu177 caused the slight pains I did have to reduce to zero. PsMa scan report last august said there was evidence of bone lesions healing. They could heal, but later the lesions could be re-invaded by Pca if not all Pca at lesion was zapped. There's all sorts of things that may be imagined to be happening, but the scans usually show soon what should be done now, based on facts, not imagined anything, which is guesswork.
I’ve had three visible bone mets, one in ‘17 in femur and two in ‘18 in rib and scapula, each hit with 30 grays sbrt . Recent Psa showed continuation of no detectable recurrence of PCa after stopping ADT and commencing estradiol in Feb 19.
I see my oncologist on 30th March, so soon, and I expect Psa to be maybe 5.
I may get PsMa Ga68 scans, and if all they can find is a few small bone mets and no more than was found in CT scans I had a month ago, then I may get IMRT locally here in Canberra, but I may also have option to have more Lu177 in Sydney .
I really don't know if beam radiation works on my Pca; past experience seems to indicate it didn't, but effect of past RT was masked by ADT.
Patrick, thanks for posting your experiences...especially with the Lu177. Most men in the US know nothing about it as it isn't offered here except in, again, clinical trials. US treatment of prostate cancer seems behind that of other countries in many ways. We all have to educate ourselves and be our best advocate!!
After treating the prostate I had three lymph node mets left which showed up on a PSMA PET/CT. I decided to treat these with SBRT and thought I would be done with PCa after that. However, the first radiation was done with an insufficient dose, so these mets reappeared about six months later. Then I had another radiation with SBRT which managed to remove these mets. However, after eight months there were seven new mets on the PSMA PET/CT. So from this experience I believe that treating mets can delay progression significantly but not cure cancer.
Here is a trial which tested the results of treating lymph node mets with radiation or surgery:
Thanks for sharing, GP24! Sorry to hear the SBRT wasn't a success. Good luck to you! It seems in the Ost STOMP trial notes that the best scan at the time was Choline...and the other study is pretty old and is only starting to talk about the benefits of using the 'new' G68 in determining a treatment plan that might involve a surgical option.
In the interview Prof. Ost mentions that he believes it does not make a difference in survival if you treat when you see the mets with a Choline PET/CT or a bit earlier with a PSMA PET/CT. I expect that there are always micromets too small for a PSMA PET/CT to detect, which grow to a visible size after the treatment.
I finally was lucky treating my mets with a cycle of Lu177:
Anyway, good luck with your operation! At the end of the day, 10-year survival with only lymph node mets is 99% according to the American cancer statistics.
My PSA started rising after surgery and had a PSMA in Heidelberg Germany. It found the cancer in a lymph node close to two positive nodes that were taken out during surgery so like you one was missed. I had stereotactic radiotherapy to the node last April and my PSA was 0.013 by November but increased to 0.024 in February. Next test is late May and if it’s up again probably headed for another PSMA scan. I asked about surgery but was told it wasn’t an option as it could develop in other lymph nodes. I would have preferred surgery to radiotherapy. I’m very interested in how you get on and wish you the best of luck.
The PSA value of 0.024 is way too low to see something with a PSMA PET/CT. I would wait for the PSA value to rise above 1,0 ng/ml. Various trials show that you have a good chance to see the mets then.
There’s no plan yet to have one. I know it would need to be higher to find the cancer as I’ve already had one at 0.123 that found the positive node. It was very near the two positive nodes that were taken out during surgery. I’m still hoping it might settle, for a while at least. I’ve been told that I’m not suited to pelvic wide radiotherapy because I have major bowel & bladder issues.
I would argue that even the best PSMA scan is not able to pick up small amounts of cancer in the pelvic lymph nodes, and lymphadectomy of only the detected cancerous lymph nodes is probably not curative. If you can still do it, you can treat the entire pelvic lymph node region with radiation with a boost dose to the known cancerous nodes. The risk of lymphocele and lymphedema are lower with radiation.
Thanks for posting your story and your upcoming treatment. 15 months ago I was fortunate to have a PSMA scan through a trial at NIH. My PSA was 0.7 and a Pelvic Lymph Node lit up. Subsequently had the node biopsied positive for PCa at NIH. 30 days after that at Hopkins I had the entire pelvic lymph node region treated with radiation including a boost dose to the cancerous node. I have now been on Lupron since then for a year and will continue for another year and stop and see if I stay undetectable. I will be following your progress and praying for both of us to have the best possible outcomes. Best wishes on your surgery and a quick recovery!
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