New Member - 4+ Years In, What Would You Do?

I'm the wife of a man with prostate cancer, and this is my first post to the forum (although I've reviewed many of your helpful posts over the last several years). I sincerely thank you for the generous and compassionate advice and support you give! After trying to learn about this disease over the last four years, I'm often frustrated and humbled about how ignorant and uncertain I feel.

As I hope the signature indicates, my dear husband Tom was diagnosed with PC in 2011 at age 60. His father died at age 65 from PC in the 1980s. Tom had RP in 2011 and then radiation in 2012. As you can see, his PSA began to rise afterwards, and just took a massive and frightening leap in the last three months. Tom has no other symptoms at this time. His oncologist rather casually recommended Lupron last week, after a very quick appointment. The doctor kept us waiting for 90 minutes and then seemed to approach this like discussion about whether to get a flu shot. We were confused because at the previous visit (before the PET scan), we thought he indicted Tom might qualify for one of the immunotherapies. Perhaps because the PET scan was clear that was off the table? In any event, communication between us and the doctor isn't good, which I'm sure we bear some responsibility for. We sat in the parking lot feeling uncertain. I think a patient should leave an appointment with a good level of clarity, being able to say: I'm doing A because of B. If X happens, I'll do Y, etc.

As we've read more about the issue of whether hormone therapy should be started early vs. after the onset of symptoms, we're feeling very confused. I just reread Dr. Walsh's chapter on hormone therapy, which makes a lot of sense to me. But perhaps the rapid PSA rise is enough to make the hormone therapy a no brainer? Are there other tests Tom should get? Should he get a second opinion or a new oncologist who is willing to communicate better? Should we consider seeking out one of the national specialists? We understand his situation is serious.

Many thanks for any advice and input you can provide! Cincy12

Sorry to hear about the PSA doubling time. Some clinical trials require a patient to be castrate resistant. That would require HT treatment that no longer works. Provenge also requires HT failure.
My 2 cents is to do HT now. Good luck.

In my opinion his PSA should never have been allowed to get to this point before deciding on a treatment plan. I suggest you find a medical oncologist that specializes in prostate cancer and can demonstrate successful treatment of high risk and advanced cases.

That he has had both surgery and radiation indicates that the cancer is probably systemic and requires hormone therapy. There may be some scans that can find the cancer and then spot treat it. In any event, you need an expert. As for immunotherapy such as Provenge, it is currently only used when the hormone therapy is no longer working. Where are you located.....The Queen City?

I vote for a second and even third opinion, however many it takes to make it completely transparent for you. Dattoli is a good suggestion. At times, the rising PSA is still attributable to the presence of cancer in 1 or 2 lymph nodes, which can then be radiated if accessible, and a cure can be attempted, although everyone is really careful to use that word. Remission is also great. Hormone therapy may also accompany radiation because of increased effectiveness of radiation in combination with HT. There is a school of philospohy among PC oncologists to attack the cancer with several means or combo therapies in order for cancer to have a harder time mutating to its resistant form. This makes sense, and if I was in your hubbys situation, and of good general health, and knew my risks, I would throw everything at it. Best to you, and glad you wrote here.

SpecialLady & Almost a 10 - Since Tom is indeed in general good health, I'd like him to consider the type of aggressive approach you outlined. Job one, in my mind, is to get a doctor that can help us evaluate the options and develop a plan.

And many thanks for taking the time to respond! I'm hoping I can learn and get to the point where I can be of at least some help to others on the forum.

Thank you for the welcome, Beth! I'll definitely check out the caregiver's thread.

Mel, We're in Cincinnati. Any and all suggestions are welcome. Many thanks!

Mel, We can and would travel where needed. The only real limitations are the demands of work, but they have probably received priority for too long at this point! Tom got a second opinion at Cleveland Clinic back at the beginning, and they'd definitely be an option for him.

As an offshoot on what JNF said:

I did the HT. It knocked the heck out of my PC. It is not a cure at all. I was able to go off all drugs after a year on HT. Unfortunately, my vacation lasted 9 months. When my PSA started rising rapidly during this vacation, I went to see Dr. Kwon at Mayo. They did the C11 scan and it was found in one pelvic iliaac lymph node (very small amount). Regardless, I had to go back on HT. I could have tried surgery (rejected that due to previous abdominal surgeries resulting in a lot of scar tissue) or radiation (decided not to do that at the time).

So, the HT again has knocked the heck out of my PC. I am set to start my HT respite on 12/1. When it comes back, I'll re-do the scans. If it shows up again in 1 or just a few pelvic nodes, I may take that shot at a cure via radiation. I did not do it the first time because the RO said I had only a 10% chance of a cure (and a VERY small chance of severe SE). I am going to revisit that and consult with an SBRT expert, if my scans just show a few spots.

I do see a superb oncologist specializing in PC, Dr. Lam. He is in with Scholz and Turner. That is all they do (PC). But they are in Marina del Rey, Ca. For me, it has been well worth the travel to see them once a year. They do phone consultations in the interim.

I would recommend Dr. Lam, and if scans are appropriate (probably are), then hook up with Dr. Kwon.

That's my input, but of course it involves a bit of travel and related expenses

Mel
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Hi Cincy12,

Welcome from another caretaker. My dh, Jim, is in somewhat the same position as yours..failed surgery in 2011 with PSA stil over 6 three months post-op. He went right on to Lupron and salvage radiation was not suggested as an option.
Traditional PET and bone scans couldn't find any residual cancer at that time. Since then he went interrmittent with the lupron and got into a clinical trials at NIH in Bethesda and most recently has seen Dr, Kwon at Mayo clinic in MN. Choline scans at Mayo showed only one cancerous lymph node and Dr. Kwon suggested extended lymph node removal... somewhat controversial and not without risks. Post-op pathology revealed only one marble sized cancerous node and the other 20 or so nodes were all cancer free. OUr follow up after this surgery is next week and we get a PSA to see if the surgery worked.
We been through a lot but like you, we're not happy with "standard operating procedure" I'm not suggesting this route for you all. You may wish to consider some advanced scans to find out where that PSA is coming from before the Lupron shrinks it.
Our email is active if you want to talk or vent. We've had our share of uncaring doctors too!

Marie and Jim
(who will update sig after Nov. 19 appt..)

Hey fellow Cincinnatian!

if you're still looking for a new med onc, I'll throw in a local option: we've had very good experience with Dr. Phil Leming (affiliated with Christ Hospital). I don't think you'll walk away from conversations with Dr. Leming not understanding the game plan, or having felt rushed. He's clearly a busy man but makes an effort to spend the time needed to listen, explain and make sure you understand.

We also saw Kwan and liked him (he's out of our insurance network though, so although we miss that team approach and the speed you get with Mayo, we haven't gone back).

If you'd like to discuss docs or just PCa in general, I'd be happy to communicate offline, or even in person since we're neighbors!

The standard treatment would be to go on ADT..Many Oncologists start with just Lupron or one of its clones..Then they monitor the response. The quicker and more complete the better..After a year or two, if the PSA starts creeping up they add Casodex which usually gives a good responce. Only after this tried and true therapy (HT) stops working will they move on to the more advanced treatments and drugs..Insurance companies pretty much set the stage for this protocol...Of course, if insurance payments are not an issue, you can demand and receive almost any treatment you want and work completely outside the box.....

Cincy,

One thing came to mind since our email...Though it would be great to get the scans now with the PSA at its high point, it wouldn't hurt to get the lupron to get through the holidays. Just get the 1 month version and schedule scans when PSA rises again and you've had time to talk to oncs. We held off on the scan until Jim was Medicare eligible in case our Insurance wouldn't cover it (Cigna did. Mayo did a good job of being sure of insurance coverage) Like i mentioned earlier, we were not interested in waiting for the standard treatment of Lupron to fail before moving to other therapies. Dr. Kwon was thorough in questioning Jim about the undesirable effects of hormone therapy. And i believe that he did it in order to make sure insurance covered the more than 66K additional lymph node surgery.

Marie