I'm new to the board and appear to have a unique situation that I'm hoping someone can offer insight. I was diagnosed with prostate cancer in October 2010, a month before my 50th birthday. I went in for an annual physical, thinking the doctor was going to tell me to drop 20 pounds keep an eye on my cholesterol and come back in year. My PSA was 17. I was shocked to find out I had prostate cancer and upon the results of the biopsy, learned my gleason score was 8. I elected to have laproscopic robotic surgery to remove the prostate, which seemingly went well. Pathology report looked good, margins were negative, the cancer appeared to have been encapsulated within the prostate. However, my PSA level continues to remain elevated. I've had multiple bone scans, catscans, and recently underwent a ProstaScint test, all of which reflected no sign of any metastatic cancer. My PSA levels have tested in the 13-18 level since the surgery. My doctor does not want to move forward with any treatment since they cannot find or see any cancer. I feel like a ticking time bomb. Has anyone experienced anything similar to what I'm going through?
Hi tm and welcome to our Board! I'm sorry you got one of the short straws, but there is a lot that can be done these days for someone in your situation! Unfortunately, your doctor appears not to have the expertise needed to take you on this next part of the journey. (Don't feel too bad or lonely; this is, unfortunately, not that uncommon.) I'll insert some comments in green, responding to excerpts from your initial post on this thead. Please keep in mind that I, like most fellow participants on the Board, have had no enrolled medical education.
Originally Posted by tmbailey
I'm new to the board and appear to have a unique situation that I'm hoping someone can offer insight.
It's easy to feel unique, especially when the doctor is unable to provide a sound path forward. However, a lot of men have gone down very similar paths, and there is some outstanding medical talent out there.
I was diagnosed with prostate cancer in October 2010, a month before my 50th birthday. I went in for an annual physical, thinking the doctor was going to tell me to drop 20 pounds keep an eye on my cholesterol and come back in year. My PSA was 17. I was shocked to find out I had prostate cancer and upon the results of the biopsy, learned my gleason score was 8.
Your story reminds me of my own introduction to prostate cancer, back when I did not know what a DRE was and thought the upper value for a PSA test was 10. I was diagnosed a few years later at age 56 with a baseline, first-ever PSA of 113.6! I knew right away that was not good! (I've often been mistaken for Sherlock Holmes. ) "Fortunately," my Gleason was "only" a 4+3=7, but my prostate was packed with cancer and was already stage 3. Rejected for surgery but offered radiation, I was in the course of preparing for radiation when I decided instead to rely on advanced hormonal therapy. I've been on that intermittently ever since (actually starting single-drug blockade shortly after my diagnosis in late December 1999, which evolved over the next ten months to triple therapy supported by a bone density drug, Fosamax, and lifestyle tactics.).
I elected to have laproscopic robotic surgery to remove the prostate, which seemingly went well. Pathology report looked good, margins were negative, the cancer appeared to have been encapsulated within the prostate. However, my PSA level continues to remain elevated. I've had multiple bone scans, catscans, and recently underwent a ProstaScint test, all of which reflected no sign of any metastatic cancer. My PSA levels have tested in the 13-18 level since the surgery.
All it takes is a lymph node or several, some soft tissue involvement, and/or some bone involvement - all "below the radar" scan-wise, to cause results like yours. ProstaScint is a fairly sensitive scan but not that great with bone, and a "bone scan" is not very sensitive if cancer is involved with about 10% of the bone or less at a given site. CT scans are not very sensitive; it takes a tumor around the size of a pea to show up as I recall it, most of the time. Even with my high-risk features, both the bone and CT scans were negative, and my ProstaScint, in the context of my whole presentation, was considered probably negative (one small, suspicious area in an unlikely location).
My doctor does not want to move forward with any treatment since they cannot find or see any cancer. I feel like a ticking time bomb. Has anyone experienced anything similar to what I'm going through?
Your doctor has not kept up with the field! I don't blame him for not knowing what to do if he is a surgeon, but I'm disappointed that he did not refer you to someone who does have the expertise! (I'm also disappointed once again, but not surprised, that a doctor - probably a surgeon, knows so little about hormonal therapy and other options for advanced recurrences.
There is one other scan worth your consideration, and I would have been surprised if your doctor knew about it as it is so new. It is known as USPIO (Ultrasmall Superparamagnetic Iron Oxide contrast with high-resolution MRI). The strong-point for the scan is that it is outstanding at detecting tumors in lymph nodes - highly sensitive (great at picking a tumor up if it is present), and highly specific (great at avoiding false alarms). The weak point is that it is not good for bones or soft tissue other than the nodes, but the nodes are a key target for early spread of prostate cancer, so this weakness is not critical in many instances.
Until a year or two ago it was known as Combidex or Sinerem and was available only in the Netherlands. Then the company making the contrast agent ceased production, not long after the FDA turned down approval in the US, and the scan was no longer available. However, the company was soon making a similar contrast agent known as fereheme, and that won FDA approval for another disease, which made it available under "open label" procedures for prostate cancer imaging. To make a long story short, Sand Lake Imaging in Orlando, Florida is now operational with this scan for prostate cancer. In fact, they have had it for about a year, and during this warm-up period they have been scanning patients from a leading radiation doctor and a leading medical oncologist. The scans have apparently been very successful, and the involved doctors intend to submit a research paper for publication. The lead doctor at the imaging site gave a presentation about it in early March, and he said they are now beginning to open the doors for more patients. It's worth considering. If you did this scan and it revealed spread to nodes within the range of radiation, then radiation would be on the table as a possible option. Very likely, with a case presenting like yours, hormonal blockade therapy would be used in conjunction with the radiation, likely starting before and continuing for a year or two. However, on the downside, radiation is often not considered worthwhile if the PSA is already at 1.0 or higher, and you are a bit past that. However, if a specific site in a node or two can be spotted as the likely culprits, that may open up salvage radiation as an option.
Even if radiation is not deemed practical or worthwhile, you still have an excellent option: hormonal therapy, likely, in my opinion, best delivered as triple therapy, plus supporting drugs and lifestyle tactics. That often delivers control of the cancer for either around ten years or indefinitely (my goal, but I'm prepared to move on when I have to). After primary triple therapy no longer controls the cancer, second-line triple therapy can be used; that essentially involves swapping the second drug element - the antiandrogen, for a much more powerful but harder-to-manage and less convenient antiandrogen. Other drugs that now exist can be added, such as Leukine.
In the meantime (meaning the next ten years or more), you can count on continuing great strides forward in therapy for advanced cases. It's quite likely that the new drug Provenge will become available for less advanced cases than are covered in its current approval. The Investigational New Drug (IND) abiraterone had strong Phase III clinical trial results, and FDA approval is expected within the year. A new immune system drug - ipilimumab has won FDA approval for metastatic melanoma, making it available "off-label" for prostate cancer. Moreover, strong Phase III results make it a good candidate for specific FDA coverage for prostate cancer. These are just some of the advances now in the works or anticipated in the near term. In other words, you need treatment that will gain time for the researchers to do their thing. I've got a recent thread, plus off-shoot recent threads, going about advances that were described at the IMPaCT conference held in early March. Check them out, especially the ones about cholesterol and statins. I'll be adding to the off-shoot threads.
I strongly recommend you get three books that are outstanding for patients facing challenging cases:
- "A Primer on Prostate Cancer -- The Empowered Patient's Guide," rev. ed. 2005, Dr. Stephen B. Strum, MD, and Donna Pogliano, activist and savvy wife of a survivor. The section on hormonal therapy is great on the nuts and bolts, plus results from a leading practice.
- "Beating Prostate Cancer: Hormonal Therapy & Diet," 2005 or 2006, by Dr. Charles "Snuffy" Myers, MD. This book is terrific on both elements in the title, and it also delivers a wonderful dose of optimism.
- "Invasion of the Prostate Snatchers," 2010, by Ralph Blum and Dr. Mark Scholz, MD. This one is especially great on hormonal therapy and on countering its side effects, as well as on treatment choice and decision making.
I wish you good luck in finding a talented, experienced, compassionate and thoughtful doctor who can move you to where you need to be.
The Following User Says Thank You to IADT3since2000 For This Useful Post:
Thanks so much for the quick and thorough response. I don't quite feel so alone and am conforted to know that so options are available. I'm making plans to consult with an oncologist and will mention the USPIO test. One day at a time. Thanks