Rising PSA after RP and Salvage Radiation

Here is a second opinion
RM:
I believe that your recurrence is not dangerous. Your doubling time is impossible to determine since you have increased psa of 50% in two years. You have not doubled. Even if we take this rate and extrapolate to the future, that is a four year doubling and at that rate your disease will be of no risk to you for more than 20 years, with no further treatment. I believe any intervention now with hormones will be an unnecessary and expensive decision with real complications from side effects. And for what?
Those of us in this situation should learn from brothers and sisters with asthma, diabetes, COPD, and other long term chronic conditions that can be dangerous if not monitored. Those people learn to exist, without becoming their disease.

Another Option
The fact that your PSA lowered and stabilized at 0.1 for 19 months suggests that some cancer was left behind in the prostate bed after your surgery. The radiation was successful treating that area, but the disease most likely had already advanced to your lymph nodes. Only a few nodes are accessible during surgery or salvage radiation. Your doctor was almost correct when he advised you that present imaging techniques will not reveal these nodes until they reach a certain size. To complicate matters even more, some nodes may not be treatable after they reach a certain size. Fortunately, a number of doctors in Florida & Virginia have collaborated to develop imaging and treatment techniques that address this problem with considerable success. The techniques are based on the old Combidex technology and are presently not available anyplace else in the country. It requires approximately an 8 week commitment on your part. I know several people who have had this treatment, and I have recently completed the treatment myself. If you would like detailed information about this treatment, email me on this forum, and I will answer any questions that you might have.
Your history is somewhat similar to mine. My history is posted on my profile. I followed salvage radiation with hormonal therapy. There are pros and cons to both hormonal therapy and additional radiation, but having been through both, I would opt for the radiation and hope for a cure early on. I wound up doing it anyway.

Good Luck in whatever you choose to do!

VascodaGama said:

Casey; what were the results from USPIO
Casey

I am very interested in knowing your experience with the USPIO-Feraheme test. Can you share details on the requirements and about any particular preparedness to get the test?
What made you to have it done and what were the results?

I think that you were probably looking for metastases in the lymph nodes. Were you involved in the project of Myers/Dattoli to treat oligometastatic cancer?

I checked your profile but you have not included late developments.

RM,...... I have nothing to add on the excellent comments you received from other survivors above. You may also read my comments to SBJ in a similar thread with similar characteristics.
I wish you luck in your judgements.

Appreciated,
VGama

On My Own
I am a former patient of Dr. Myers, but currently a patient at a major NYC university hospital. I have a friend who went to Holland for a Combidex scan and was subsequently treated at the Datolli Cancer Center for 14 positive nodes. That was 4 years ago. His PSA is undetectable today. I contacted the Dataolli directly in August because I was concerned about my steadily rising PSA. Dataolli sent me to Sand Lake Imaging in late August and I began treatments for two positive lymph nodes in late September at Datolli. No other disease was found. My treatments ended November 30th. I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results. LabCorp tested my PSA in January, 6 weeks after treatment completion at 2.11. I decided not to look seriously at PSA results until I was out at least 90 days from treatment completion. That test was done on March 8th and my PSA dropped to 1.8. It will take time and additional PSA results to fully evaluate the success of the treatment, but I am encouraged. The 1.8 is a significant variance from my PSA trend over the past two years.

I went to Datolli with a couple of things in mind:
1) I am 12 years out from diagnosis and surgery. I don't think that it would be realistic to expect a cure at this point, although a cure would certainly be welcome. I was hoping to knock the disease back far enough to buy an additional 3 or 4 years with hopes that I might get to the next significant breakthrough.
2) I felt that regardless of the results, I would come home with less cancer than I had when I started treatment, and at 71, I am not concerned about long term radiation effects. I had nothing to lose but a few bucks and nine weeks. Actually, we really enjoyed our stay in Sarasota.
3) I had not been fully evaluated for disease progression since my diagnosis in 2000, and I wanted to know where I was in the whole process. I had no idea at that point if I was even treatable.

So it all came down to either continuing to watch my PSA rise (a common NYC hospital practice) or taking charge of my own health and doing something about it. I chose the latter. So far, the results are encouraging, but it is still early.

VascodaGama said:

Casey; thanks buddy
Casey

Many Thanks for the info and for sharing your experiences.
It seems that even with this earlier result the matter is for celebration. Your three thoughts converged and you got a good response.
The cancer cells in those spots may be from strands still naïve to radiation (the NDA strands are not resistant to Gys) and you got a positive effect. I do not know what they gave you at Dattoli but I believe in cyber knife for focal treatment of oligometastases, even if one has done pelvic SRT.

This is a “super” blow and I hope you get more than the 4 years you so wish. May be cure, who knows.
Where you required of any preparedness for USPIO?
Who is the doctor that read/interpreted the results?
Was there any particular side effect from the agent Feraheme?
How is it controlled, by testing the lipids?
And, if you don’t mind, how many bucks were the bucks?

Thanks again. Hope for the best.
VGama

The Right Stuff!
Casey,

First, thank you for a very informative post. From you CSN “about” profile, it would appear your PCa is HR/CR. Yet, I offer congrats: on completion of your most recent test and DART tx; on being a veteran CSN member of 10 yrs and; most of all--on being a 12+ yr PCa SURVIVOR! I’m sorry you’ve faced so many PCa challenges but, in my book, your perseverance, positive & fierce attitude are the RIGHT STUFF!

If you’re open to sharing more info about your recent RT tx, I have questions that your profile did not answer/include. Rewind to 2000: What factors first lead your MD to recommend biopsy that subsequently found G 3+4? At initial dx pre RP, what was PSA, T stage, PCa volume, # & % of positive cores? Any post RP path findings of PNI, PMs, or PNs? Did SRT in ’03 include bed AND nodes or prostate bed only? Fast forward to 2011/12: Where were the two positive nodes identified/located, distal, local, specifically? Were the nodes biopsied (laparoscopic) after being found on the Feraheme MRI (Tesla 3?) before RT? Can you describe more about Varian’s DART technology of IG/IMRT that was used to deliver rad to the 2 positive nodes? What was total Gy delivered to each node? Were other diagnostic tests ordered to rule out distal tumors to bone or other soft tissue?

Thank you for this and any add’l info about the Feraheme MRI & RT protocol, etc. that you might be willing to share so that I, and other patient advocates, as well as patients, might learn from your experience. With all the newly approved FDA PCa drugs and those in the medical pipeline, if you are otherwise healthy, there is every reason to believe you will make it far beyond any time limit prediction that you or others have set.

All the very best,

M (mrs pjd)

caseyh said:

A few answers
Where you required of any preparedness for USPIO?
No special preparation. The Feraheme is administered intravenously for a period of about 15-20 minutes. It was developed for use with renal disease and I believe that it has been well tested. It was side effect free for me. There were a number of USPIO patients at Datolli. Nobody reported adverse Feraheme effects.

Who is the doctor that read/interpreted the results?
Dr. Stephen M Bravo interpreted the results. He was involved with the clinical trials for Combidex at Mass. General. Interpreting USPIO images is both an art and a science. Dr. Bravo's reports are detailed and extensive. It seems that he lists and measures every lymph node in your body. The positive nodes are identified on images ported directly to the Datolli Cancer Center. I called Datolli after receiving Dr. Bravo's reports and they interpreted the results over the telephone.

How is it controlled, by testing the lipids?
It is a one shot deal with no followup testing.

And, if you don’t mind, how many bucks were the bucks?
That's a good question. I never really calculated it until now. My out of pocket was minimal. About $1000 at Sand Lake and probably less than $200 at Datolli. Total cost of both procedures was about $110,000 based on the insurance filings. Of course the insurance companies slash these amounts to half or less. So it really depends on your coverage. You may be requested to agree to pay certain bills that might not be covered by your insurance. I have Medicare and a very good United Healhcare secondary policy that paid for almost everything. I did incur considerable travel expenses and a nice condos in Sarasota don't come cheap. IRS allows you to write off $50.00 a day for rentals required for medical reasons.

Casey; Thanks again
The "bucks" may be too many for the ones without a good insurance. I am not so sure if the bill you commented includes the 14 spots RT.
I hope the test becomes common practice in all clinics to give a chance to the many in our boat.
Please let us know about developments.

Wishing you a continuous success.

Thanks.

VG

mrspjd said:

The Right Stuff!
Casey,

First, thank you for a very informative post. From you CSN “about” profile, it would appear your PCa is HR/CR. Yet, I offer congrats: on completion of your most recent test and DART tx; on being a veteran CSN member of 10 yrs and; most of all--on being a 12+ yr PCa SURVIVOR! I’m sorry you’ve faced so many PCa challenges but, in my book, your perseverance, positive & fierce attitude are the RIGHT STUFF!

If you’re open to sharing more info about your recent RT tx, I have questions that your profile did not answer/include. Rewind to 2000: What factors first lead your MD to recommend biopsy that subsequently found G 3+4? At initial dx pre RP, what was PSA, T stage, PCa volume, # & % of positive cores? Any post RP path findings of PNI, PMs, or PNs? Did SRT in ’03 include bed AND nodes or prostate bed only? Fast forward to 2011/12: Where were the two positive nodes identified/located, distal, local, specifically? Were the nodes biopsied (laparoscopic) after being found on the Feraheme MRI (Tesla 3?) before RT? Can you describe more about Varian’s DART technology of IG/IMRT that was used to deliver rad to the 2 positive nodes? What was total Gy delivered to each node? Were other diagnostic tests ordered to rule out distal tumors to bone or other soft tissue?

Thank you for this and any add’l info about the Feraheme MRI & RT protocol, etc. that you might be willing to share so that I, and other patient advocates, as well as patients, might learn from your experience. With all the newly approved FDA PCa drugs and those in the medical pipeline, if you are otherwise healthy, there is every reason to believe you will make it far beyond any time limit prediction that you or others have set.

All the very best,

M (mrs pjd)

Additional Info
What factors first lead your MD to recommend biopsy that subsequently found G 3+4? At initial dx pre RP, what was PSA, T stage

My (no longer) GP missed a nodule on my prostate during a annual physical approximately 6 months prior to it being discovered during a visit to my gastroenterologist. He advised that I get a biopsy ASAP. My PSA was 2.6 at the time. That was my last PSA reading prior to surgery. The postoperative pathology report revealed an actual 4+3=7 prostatic andenocarcinoma, predominantly involving the left posterior quadrant with small focus in the right anterior quadrant. There was no perineural invasion or extracapsular extension appreciated. The surgical margins were free from tumor. The pelvic lymph nodes (8 were biopsied) were negative for metastatic spread.
____________

Where were the two positive nodes identified/located, distal, local, specifically?

The radiologist's report describes the nodes as bilateral axillary, mediastinal, right hilar and right retrocrural lymph nodes
_____________

Can you describe more about Varian’s DART technology of IG/IMRT that was used to deliver rad to the 2 positive nodes?

From the Datolli website: DART using all methods of 4D IG-IMRT...strict immobilization is required using an individualized "alpha cradle". A SonArray 4D Ultrasound Guided System is utilized moments before each treatment to ensure that the organs are exactly positioned for the DART "beamlets."- Even the simple motion of breathing can shift the position of the prostate, which is tracked and corrected by a special respiratory gating device. These and other tools allow us to take the 4th dimension of motion into account, ensuring that the right dose is delivered at exactly the right time.
_____________

Were the nodes biopsied (laparoscopic) after being found on the Feraheme MRI (Tesla 3?) before RT?

No
_____________

Were other diagnostic tests ordered to rule out distal tumors to bone or other soft tissue?

The scans done in Orlando are as follows:
Whole body 18-FDG PET/CT scan
Whole body F-18 Sodium Fluoride PET/CT bone scan.
CT of the chest without & with contrast
CT of the abdomen and pelvis without & with contrast,
MRI of the pelvis without & with contrast
MRI of the abdomen without & with contrast
MRI of the neck without & with contrast.
3-D color flow Doppler of prostate bed (Done at Datolli)

mrspjd said:

Curious
Casey,

I may have misunderstood some of the info you posted and was wondering if you would help clarify a few things. I’m aware of the PSA “bounce” effect in post-PCa RT tx, understand that reaching nadir can take time (yrs), and that PSA results from different labs and assays may vary but, there’s a lot I don’t understand.

In a post above on April 9, you indicate: “LabCorp tested my PSA in January, 6 weeks after treatment completion at 2.11. I decided not to look seriously at PSA results until I was out at least 90 days from treatment completion. That test was done on March 8th and my PSA dropped to 1.8. It will take time and additional PSA results to fully evaluate the success of the treatment, but I am encouraged. The 1.8 is a significant variance from my PSA trend over the past two years.” On January 21, 2012, in another thread http://csn.cancer.org/node/234304#comment-1185285 you comment “I am 12 years out with a PSA <1.0.”

Curious re the 2.11 PSA reading in January and the <1.0 PSA reading, also in January: it would seem that the 1.8 reading in March might be interpreted as a rise/bounce up from the <1.0 January reading? Don’t mean to be discouraging but it’s a little confusing and thought you might be able to shed some light.

Considering the many different imaging tests you had in Orlando, how much waiting time was required between the different diagnostic tests due to the use of various different contrast agents, including the Feraheme agent? Was the whole body FDG and F-18 PET/CTs given as one combined test with a contrast cocktail or as two separate imaging tests with different contrast agents?

I’m not sure I understand the findings on your radiologist’s report re the # of positive lymph nodes identified. Were more than two positive nodes found but two were treated (as you indicated)? What was total Gy delivered to each node?

Thanks for any add’l info you can provide.</p>

Exactly why I made that point
"I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results."

Your observation is exactly why I made that point. The <1.0 reading was a typo. It should have read >1.0 (actually 1.11), and was the last PSA reading that I received from the FL lab. prior to making that post. That reading was considerably below the 1.6 result of a test performed 6 months earlier in NYC, but at that point, I believed it to be valid. It wasn't until I received LabCorp results later that month that I concluded that the variances were so extreme that it had to be due to lab error. Had my PSA continued to grow at the same rate as it has for the previous two years, it should now be 2.1(matching the LabCorp results.) Very often, PSA tests are not ordered until at least 90 days after treatment completion. The 1.8 reading 90 days out is reason to be optimistic, but when you have been doing this as long as I have, you learn to temper your expectations and take nothing for granted. Time will tell.

bdhilton said:

I'm not a doctor but it is
I'm not a doctor but it is interesting that your doc when to salvage with out more of a history of increases....I am starting to believe that these test for metastatic disease are really worthless unless you are full blown PCa.... I would tend to be more conservative than aggressive on future treatments because e the next is a real life changer i.e HT....This is also the hammer I am waiting for but in the mean time I am enjoying life to the fullest ands perhaps I will never need to do anything...all the best-B

It's a good fit for me
Your thoughts are entirely reasonable. I decided not to do the Combidex scan 4 years ago for similar reasons. I did do salvage radiation 10 years ago, and HT about 8-9 years ago along with several other drug therapies. Nothing has stopped the steady progression of my disease. The "game changer" for me at this point is that I am beginning my 13th year of dealing with the disease. Not many people get out this far and even fewer reach 14,15,16 etc. This is the point where things can get nasty. So as explained in previous posts, I have rolled the dice. I've met a number of patients with very serious disease because they made a mistake in judgement somewhere along the way. I don't want to find myself some day saying, "If only I had..." We all have to deal with it our own way.

caseyh said:

Exactly why I made that point
"I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results."

Your observation is exactly why I made that point. The <1.0 reading was a typo. It should have read >1.0 (actually 1.11), and was the last PSA reading that I received from the FL lab. prior to making that post. That reading was considerably below the 1.6 result of a test performed 6 months earlier in NYC, but at that point, I believed it to be valid. It wasn't until I received LabCorp results later that month that I concluded that the variances were so extreme that it had to be due to lab error. Had my PSA continued to grow at the same rate as it has for the previous two years, it should now be 2.1(matching the LabCorp results.) Very often, PSA tests are not ordered until at least 90 days after treatment completion. The 1.8 reading 90 days out is reason to be optimistic, but when you have been doing this as long as I have, you learn to temper your expectations and take nothing for granted. Time will tell.

Exactly why I made that point, too
You emphasize: "I have not mentioned my PSA results because over the past six months, three different labs have been involved with varied results." With all due respect, Casey, you have indeed shared your PSA results, although they have been limited to the last few months.

I cannot guess if someone has made typos such as a < or a > or typed a 9 when they meant to type a 0. Therefore, I have to take what I read in black and white at face value. I did not understand the PSA info you posted and that is exactly why I made a point of asking for clarification, not only on your PSA history but other aspects of your PCa journey as well. Questions arose both from your posts and your profile (and still linger).

“…three different labs have been involved with varied results." Three different labs? There are bound to be variances between labs, assay used, lab errors and varied results if three different labs are being used. Even if a patient divides his time between living in three different states, using 3 different labs seems like overkill, at least to me. Nothing wrong with changing labs or even changing docs or seeing other docs for 2nd opinion consults but, do you use three different PCa oncologists, also? After 12 years of survivorship with recurrence, it would seem that one would have at least 1, maybe 2, reliable, reputable, professional labs that could be trusted to analyze ongoing PSA monitoring with some assurance of accurate results.

While I share some of the same concerns expressed by another user here on a different thread (about why your posts were taken down & removed from another internet forum site), I have no reason to doubt that you’re a PCa patient. You may have a wealth of PCa experience to be shared with others. Whether you do so or not is entirely up to you. Good luck.

M

caseyh said:

Thanks Tarhoosier
I have shared a lot of personal information in hopes that it may be of some help to other members of the Group. Unfortunately, the thread had deteriorated from useful information about USPIO to speculation as to why I used three labs. If it is that important, and I don't believe it is, why not just ask me why that was necessary at the time? The answer is really quite simple. I think that when things reach this level of activity, it discourages the exchange of personal information and ideas by patients and is counterproductive to what the group is trying to accomplish. I also think that we don't check our right to privacy at the door when we join a group. We all have a right to keep some facts to ourselves until we are ready to share them.

In my opinion, this thread has run it's course. Therefore, I have decided to no longer respond to posts on the thread. Thanks again to you and all who have been supportive. I remain a passionate USPIO supporter and would be more than happy to share any information I have with Patients who contact me via CSN Email.

caseyh

Although I have not been part of this thread, I read your comments with great interest. Thank you.
I agree that we have a right to share or not share as we wish. That we do not have to respond to questions that we believe are intrusive, not appropriate or germane.
I personally ignore noise that I come across at this site, and in life, and just keep focused doing my thing I believe that others see what is happening, and appreciate any good efforts. I appreciate your contribution.
I hope that you keep on contributing at other threads, or wherever.