Are Prostate Cancer Doctors Still Clueless?

Dear Doctors of Urology and Oncology,
This letter is not intentionally directed at just one medical professional, it's directed at many. I feel compelled to share some misinformation my husband, I and many other patients received while in your care. The data I collected over the past three years might apply to just a handful of people or maybe a few thousand. At this time I don't know how many people are affected but maybe I'll find out. If someone is ever in the same situation as we are I hope this message guides them in the right direction.

After completing a successful robotic surgery you informed us that my husbands post surgery PSA of 0.1 was "outstanding that's exactly what we wanted." Biopsy results showed cancer was organ contained, margins were clean, negative lymph nodes, no extra capsular extension and the seminal vesicles were clear. We were ecstatic with the news. We made the correct decision to get 'er done and have the prostate removed. We can stop worrying and finally have a life again. Dave beat the beast. I mean we were told countless times that "most men die WITH prostate cancer not OF" so we were good to go.

But.....the PSA began to slowly rise, huh? How could that be? You told us, "don't fret, this is probably your normal PSA level." We were seeing your team of urological specialists, who by the way, you being "the best in the country" who teaches worldwide. Who by the way, you were also the surgeon who performed the prostatectomy, because you have performed thousands of them and were highly recommended.

How could you not now exactly was going on? The PSA continued to slowly rise. Hmmm? We asked you a few times couldn't the cancer have escaped via the bloodstream? Your response "absolutely not, even if maybe a few cancer cells escape they need their buddies to survive and without them they die." Well doc, we have news for you....it's possible and the buddies came along for the ride. You offered no other explanation as to how there were still cancer cells with a perfect post-biopsy. You did mention that we had no worries for at least five years because prostate cancer grows at such a slow speed. You then told us Dave might possibly experience a chemical recurrence. We beg to differ, doc. Something went wrong somewhere. You suggested we see a radiation oncologist.

So....we placed our trust in the radiation oncologist since the "best doctor in the country" had no idea what to do next. Dave went through 39 radiation treatments and handled the side effects like a trooper. Guess what, his PSA continued to rise. Obviously the cancer wasn't in the prostate bed, now was it? Kind of a waste of time and major bucks, wasn't it?

So....Doctor of Radiation Oncology you suggested a bone scan. Imaging showed metastasis to the hip area. You suggested radiation treatment to the hip area. Oh my. Here we go again. We asked you, "doesn't radiation cause cancer?". Your response was, "there's always a chance down the road, in maybe 50 years." Guess what doc, you were incorrect. In the past 3 years we've heard of 4 patients who developed bladder cancer from radiation treatments to the prostate bed. Dave now has microscopic blood in his urine, we'll get back to you if anything should come of this. Fifteen treatments later PSA jumped from a 4.9 to 23.2! Are you serious? Are you doctors truly this clueless? Did you piss off the cancer? What happened?

So....you suggested a urologist to begin Hormone Therapy. It kind of felt like we were being pushed along, like we were on a conveyor belt. Move along now....next! All the while no one really had a clue as to the next move.

We went to visit with the Urological Oncologist. He seemed very confident as to what we should do next. He answered questions thoroughly. He gave us no misguided information and warned us about hormone resistance. We were confident this would work. Dave began Hormone Treatment. First injection was a success. Second injection wasn't. PSA began to slowly rise again. Mind you it's been three years since this roller coaster ride began. Bone scan ordered and completed. Results next week. Trust me, I will keep you posted on our journey that according to you, we shouldn't be on.

UPDATE: 4/28/11 Bone Scan revealed metastasis to spine. We will meet with the Radiation Oncologist on May 10th. We also discovered some shocking information from a new doctor. Why didn't you ever mention to us three years ago .... Dave's Gleason was 4+3 which we knew BUT what you neglected to tell us was that 5% of his cancer was a Gleason 5 which is more aggressive. Hmmmm....this doctor was curious as to why you didn't suggest radiation treatments immediately after his post-PSA went from 0.1 to 0.3. I told him that I mentioned it to you but you thought we should have 3 PSA rises first. NEXT TIME YOU might want to recommend differently. Patients might not have went to medical school but we actually know more than you think we do. It's because of this the 39 rad treatments to the prostate bed Dave were pointless. You had us wait to long and we trusted you.

UPDATE: 5/11/11 Radiation Oncologist notified us there is a tumor in the area. He suggested 10 external beam radiation treatments to the spine. CT-Scan tomorrow. Treatments begin next week.

UPDATE: 6/3/11 Radiation Treatments are complete. PSA test to follow in 6 weeks.

UPDATE: 7/15/11 PSA 59.1 .... this is NOT a TYPO. We are still in shock how a cancer could get caught SO EARLY and still be so OUTTA CONTROL.

UPDATE: 8/4/11 PSA 98.7 ... THIS IS NOT A TYPO. We found out today from our new oncologist that our urologist neglected to tell us the ACCURATE PSA OF 98.7! OH MY HOW does a doctor LOOKING AT your chart not share with you YOUR OWN PSA of the test that he ORDERED! He told us the PSA of the test the previous oncologist ordered which was 3 weeks earlier! SO Dave's PSA went from 59.1 to 98.7 in THREE WEEKS!!! The NEW oncologist also suggested against EVERYTHING THE urologist suggested!!! WHY CAN'T THESE DOCTORS WORK TOGETHER AND FIGURE OUT THE RIGHT GAME PLAN and stop using their patients as guinea pigs!!! The urologist also neglected to tell us about lesions on Dave's lungs for a CT SCAN that HE ORDERED but the Oncologist spotted them immediately on the scan!!! OH MY AGAIN!!! Repeat CT Scan in 2 weeks and then decide on the next move. Chemo, Provenge, Zytiga.... the list goes on. YES, I made the urologist aware of his MISTAKE. We have to be our own advocates and ALWAYS right a wrong!!! Update: wrong has been righted. Urologist just phoned me, his staff never entered the latest PSA in Dave's file and the suspicious spots on the lungs weren't in his files either. I believe him. Clerical error.....At least we found out. Everything happens for a reason which is why we heard this info from the oncologist and not the urologist. Began Xgeva injections for bone strength.

Update: 8/26/11 Results of CT Scan was fine. Second Xgeva Injection. PSA is now 189 .... Provenge treatment to begin soon. Dave and I have both decided that PSA is irrelevant at this point. We will no longer allow those numbers to control us. Dave feels great. No issues. He works 40 hours a week and loves life. He's a fighter and my hero.

Update: 9/23/11 Third Xgeva injection.

Update: 10/11/11 Still waiting for Provenge Treatment to start. It's been a LONG wait. Dave has more back pain, less of an appetite (which is shocking), food taste different, more fatigue. Cancer is on the move, I wish the oncologist moved also!

Update: 10/20/11 Provenge Treatment will begin on October 28th at the blood bank for the leukapheresis, followed by the infusion on the 31st at the oncologist. I was tired of waiting for the oncologist office to send us a schedule and I went straight to the top! I was in contact with the Chief Medical Officer of Dendreon the manufacturer of the Provenge Vaccine and he had a schedule for us within hours, not months. Thank you Mark and Beth!!! Dave has lost 9 lbs in the past 3 months. His loss of muscle mass is obvious to me. Fourth Xgeva injection was today. MRI for back pain is scheduled for next week.

Update: 10/28/11 Provenge Treatment has begun. Leukapheresis process went smoothly (4 hours from start to finish) as did Provenge therapy (3 hours start to finish) on 10/31/11.

Update: 11/4/11 Visit to the oncologist. MRI results were good. Weight is steady. Appetite is back to normal due to taking Megestrol which helps increase appetite. PSA is now 559 (WOW)! Testosterone is 28. Up from August when it was 18. Hemoglobin is 8.2 down from 9.2 one week ago. This is a dangerous level and could cause a stroke or heart failure. Blood transfusion is set for Sunday at 8:30. We were warned that the leukapheresis process could weaken hemoglobin levels and as we all know so does cancer. Oncologist suggests we begin Eligard again. YA THINK? I thought we should have 2 months ago, but what do I know since I didn't go to Medical School. Injection is scheduled for Nov. 8th.

Update: 11/6/11 Blood transfusion was today. It went smoothly. We did the Type & Cross on Friday and it did save us some wait time at the hospital today. Transfusion took 6 hours for two pints of blood. Dave is tired from the treatment but feels good otherwise. At this time I would like to do a shout-out to the nurses and staff at Florida Hospital Cancer Institute. Their kind hearts, patience and caring ways to the patients and their family members goes above and beyond. I commend them for their hard word and dedication.

11/11/11 and 11/14/11 2nd Leukopherisis and Provenge Treatment.

11/17/11 - Oncology appt. Hemoglobin is 10.6! Great news! Weight is stable! Xgeva injection.

11/25 and 11/28/11 3rd and final Leukapheresis and Provenge Treatment. Except for the one blood transfusion the Provenge treatment went smoothly. No problems. We won't know if it was successful for a few weeks.

12/1/11 MRI for knee pain. Results were arthritis. A knee replacement is needed at a future date.

12/16/11 FIRST PSA since Provenge treatment. Results 323 which is superb considering that his pre-Provenge PSA was 559 and his oncologist repeatedly warned us NOT TO PANIC because the PSA will DOUBLE after Provenge!!! Hmmmmm. Still clueless I presume? We are thrilled. Hemoglobin is low at 8.6 we go for a recheck on Monday. Xgeva injection. Next oncology appt is 1/5/12 we will see what happens with chemo then.

12/19/11 Hemoglobin is 7.9 ... another blood transfusion is needed on 12/20/11

1/5/12 PSA is 315 Hemoglobin is 10.9

1/26/12 Hemoglobin is 9.3

2/2/12 PSA is 302

2/10/12 Hemoglobin 8.3

2/16/12 Blood transfusion.

3/19/12 PSA is 384 and Hemoglobin is 8.3 Potassium levels are also up.

Another new treatment begins today. Zytiga along with prednisone. Normally after the Provenge treatment steroids should not be used for at least a year. Under Dave's circumstance he doesn't have a choice. So we will never really know if Provenge was a success. We do know that it lowered his PSA for only three months.

3/22/12 CT Scan - Chest

3/23/12 Bone Scan

3/29/12 Hemoglobin 8.7

4/6/12 Multiple X-Rays to hip, spine, shoulders

4/13/12 X-Rays show activity in areas, not sure if it's Provenge or Zytiga in action or cancer mets. Hemoglobin 7.0

4/14/12 Blood Transfusion. Three units needed instead of the usual two.

5/4/12 Hemoglobin is 8.2 ...

5/7/12 Procrit Injection for anemia (These injections will be performed weekly to help build up the hemoglobin)

5/10/12 PSA is 617

5/11/12 Blood transfusion....Two units.

5/21/12 Procrit injection

ONE DAY AT A TIME.

What's up doc? It would be nice if you were all on the same page. Don't sugar coat a diagnosis. We want the facts. Don't procrastinate. If we don't ask that "magical question" that you are waiting for us to ask, tell us the answer anyway. You took the oath to save lives, do your job. Thank you.

Disclaimer: This memo is not intended for all doctors, just a select few. Based on my opinion if you encounter a overly confident medical professional with an enlarged ego, seek another provider immediately.

For additional support from fellow patients and caregivers visit http://www.facebook.com/BeatProstateCancer?ref=ts

Eligard Injections
Feb. 19, 2010
Aug. 20, 2010
Feb. 21, 2011
March 4, 2011

Oncologist ordered a break until further notice.
Break is over. November 8th will be next injection. 2 months since the last one.

Casodex (added fuel to fire, use caution with this drug)
Oncologist ordered a break until further notice due to low enough level of testoterone.

Provenge is a vaccine that helps in the fight against Advanced Prostate Cancer and is created from your own immune cells.

It's administered before chemo. It requires six visits. Three visits to a blood bank and three visits to your oncologist. The blood bank takes your blood (2-3 hour visit with no movement). Your blood is then flown to Dendreon (the manufacturer) for treatment. 2-3 days later you visit with your oncologist for the infusion (blood is placed back and takes about 2 hours).

Normally, as in my husbands case and in other patients who have been through the provenge treatment chemo will follow.

Update: Chemo hasn't been administered yet (4/14/12). We will never really know if Provenge worked or not because his PSA began to rise and hemoglobin began to fall 3 months after his last Provenge Treatment. He then began the Zytiga and Prednisone treatment. Steroids usually shouldn't be taken for at least one year after Provenge, but we had no choice.