My Prostate Cancer Trip otherwise know as "Twist and Shout"

My Prostate Cancer Trip
1-March 2015..PCP sees elevated PSA of 4.7 on blood work.

2-Scheduled for biopsy.. Local Urologist changes mind that morning…puts me on meds for two weeks.

3- Another Local Urologist . Worst Doc visit ever; rude unprofessional, and hostile. Recommends waiting months to “bring PSA levels down” Doesn’t recommend Biopsy.

4- Check of my PSA by first Uro.. Up to 4.8

5- April 13th ;Biopsy indicates 3 of 12 cores cancerous with two scored at Gleason 6, the third at 7. (4+3) He recommends operation. “I’m sorry .. Seeds are not indicated for your diagnosis.”

6-Radio Report does not rule out spreading.. Something on my left rib.

7-Meet with another Radio Doc..attemps to sell his external beam therapy in a local Hospital. The only therapy offered this Hospital.

8-Visit with PCP..very anxious. When I arrive she states rib abnormality has been seen in previous studies for 8 years. Thank you God!

9- Meet again at Sloan Kettering…second review of slides upgrades diagnoses.. Two 6s are normal. The 7 is an improved 3+4 instead of a 4+3.Question; have men had their prostate removed because of a test error?

10- Meet with Surgeon.. Sales pitch for the operation he performs.

11- Meet with another Surgeon.. Sales pitch for operation. He recommends his procedure.. The “open type”. He doesn’t do Robotic. He does recommend NYC Doc. for robotic.

12- Surgeon (another.)”I’m like the Maytag man.. This is my specialty…you need to explore other options”.

13- Meet with Radio Doc...your prostate is too big (114 g) for seeds. Need 6 months worth of hormones to reduce it’s size. Operation is best.

14- Meet with Oncologist.. Waste of time. He resigns next month.

15-Travel to NYC to see high rated surgeon for operation. While at his office… he reads official report. My prostate is 56g, not whopper size 114g.

16- Back to Radio Doc.. Seeds plus 5 sessions of high intensity radiation.

She reviews my CT and Bone Scans… all clear. Double Check vital!!

17- Another trip to Radio Doc. I have more questions. I’m not pleased with her responses. Seems perplexed when I ask..” what is in my best interests in preventing a re-occurrences and the least the amount of side effects?”

18- Visit ending with Seed Doc in NYC. Best connection with Doc yet. Smart, listens, and pleasant. She confers with another Doc. Two Docs do DRE. What number this?. 37 and 38. I lost count! Women are more gentle;) Recommends seeds without radiation. Radiation would be used as a back up. States I have 95% chance of cure with out radiation. Seeds provide the best chance of all treatments to reduce side effects. Signs me up for special Multparametric MRI (no rectal coil) study to monitor prostate and surrounding area. 6 times within 2 years.

Scheduled Seed Implants on July 10th.

Lessons; Always, always 2nd and 3rd opinions. Always.. have another lab look at your slides, one with an up there reputation. Question; Are men being over-treated? If so based on reasons other than the best interests of the patient?



　

Thank you. The Doc I mentioned from NYC was indeed Dr. Tewari. He didn't push the operation and noticed the mistake in prostate size.
I'm concerned about Dr. Samadi.. he is engaged in much self promotion. possible red flag.
Interesting that your 2nd opinion also down-graded the test results.
I wish you continued good health. We are all together in this fight. God Bless.

Your story really highlights the necessity for taking charge and owning your condition, doing due diligence and questioning any one doctor's judgement and biases.

I also met with several specialists in the NY area and had one out of town phone consult. In my case I did not feel misinformed the way some through ignorance or bias or, maybe, flat out intent to deceive, misinformed you. I did find a couple of the specialists to be somewhat evasive.

I had also met with Dr. Tewari and would have been comfortable using him for surgery if I had decided to go that route.

Best of luck.

Congrats for hanging in there for all three verses of Twist and Shout. The medical community sure doesn't make it easy, does it? While my path was not as torturous as yours, it was also filled with somewhat one-sided advice and some downright non-factual information.

At the risk of getting caught up in nomenclature, brachytherapy (seeds) is radiation, so you are being radiated--just from the inside-out instead of the outside-in. And you're avoiding having your brachytherapy in conjunction with external radiation, which isn't warranted based on your updated biopsy results. All good for you. Good luck to you!

George, welcome to the club. It sure sounds like you made a lot of the right moves that we'd be counseling you to make, on your own. Good for you. Some of us have figured out how to add our 'story' to our signature file, yours is a great one for others to read into the future.

There are many impassioned responses to the overtreatment question, and whether it's as big an issue today as it was 15 or 20 years ago. Here's my take:

I don't think there's any doubt that many men were treated for PC unnecessarily starting when the PSA came online and became widely accepted starting in the mid 1980's or so. A high PSA was taken as direct evidence of PC, and many prostates were removed or radiated that didn't need it. Many men suffered and died that way.

More recently, in response to the earlier overtreatment, there has been a move to discourage men, even high risk men, from getting regular PSA tests. My personal opinion is that they're addressing the problem from the wrong end. You're going to miss a lot of early stage cancers until it's too late to do anything positive about it.

My often-stated view is that what we need...and it's starting to happen slowly and in scattered ways....is better diagnostic tools and better understanding of what they mean. I'm talking about the MP-MRI's, saturation biopsies, some of the new tracer studies being worked on, etc. I think the day will come where our sons and grandsons will have tools and treatments available to them that we can't even imagine. I think the day will come, probably very soon, where it will be possible to definitively state to a particular patient, that he has an indolent G6 that won't ever cause a problem. When that day arrives, the overtreatment problem will be over.

A small, but frightening stat.."Dr. Epstein's studies show that 3 out of 200 men have biopsies that show cancer when none is there". I would love to know if the biopsy examples were reviewed by more than one lab? Is there more information of what would cause a sample to look positive when in fact it's negative?
Doc names.. noted. Will not refer to names again. Would however would love to list of name of my Doc after the procedure, especially if.. hopefully... when things go well.
Ordered that very book via Amazon...should arrive any day.
Thanks again for your efforts to moderate, share your story, and provide this valuable resource for those in this fight.

Mission Accomplished!
I now belong to the "Seed Brotherhood" 88 seeds implanted at Sloan Kettering in NYC yesterday. They put me out with general, the first time in my life. one moment they said I wouldn't remember anything in 20 seconds, the next I remember them asking me to take breaths in a gas mask. In what seemed like a second I woke up in the OR trying to take the oxygen tube off my nose. Then getting wheeled to recovery room. The procedure started around 8:30am and I remember the clock in the Recovery Room said 12:20pm. Nothing attached to my private parts!
In a bit of a fog until 2pm. Time to pee... I did! Sono indicates I have too much pee. Do laps around halls.. pee again.. still too much retained. 4pm discharge time changed to 6pm.. not enough pee! Drink coffee. Ahhh pee comes at 7pm. Like milking a cow! Weak, stops and starts.. but it's there. Ask nurses in discharge unit to pray with me.. thank them for outstanding service. White Rolls Royce picks us up at 8pm. The weight from April 13th is finally lifted. Feel great! The word(s) is thank God. Plus extremely GRATEFUL. Doc states I have an 95% cure rate. Life is great! Blessings and much love to all.

Thank you. We are all in this fight together.. count on me sticking around and answering questions for others. God Bless.

Wow, that's quite an upgrade. I went from a 3+3 to a 3+4 on a reread of the biopsy and then a 4+3 on the pathology report. I wonder if your upgrade is significant since you had seeds.

You nailed it, George. Whom to believe? And if you were to have a fourth reading, would it be any more trustworthy than the previous three?

This thread is very unsettling. You did everything right. You went beyond what one might reasonably expect, and then...out of the blue...the possibility that the biopsy should have included a 40 percent core of Gleason 9. What a shocker!

So, is a brachytherapy procedure sufficient for the worst case scenario? Who read the specimens correctly? Where did the inflated estimate of your prostate size originate?

So many "unforced errors" here, and where does that leave you now. I said I find this unsettling. I can't imagine how you're feeling right now. I have no answers, but I wish you well and hope everything works our OK.

George, I dunno if this is a crazy thought or not, or if it can even be done. But i wonder if it's worth investigating whether you could get the pathologist at MSKCC and Dr Epstein, at Johns Hopkins to consult with each other. and discuss this.

That's a huge discrepancy and I'd be curious what the differences of opinion are. When I had my biopsy, my original G8(3+5) from the local lab, was changed to a G6 by Hohns Hopkins. I was able to speak with Dr Epstein. At the least, you might want to call his office and speak with him about this. he does speak with patients, I had no problem getting him on the phone.

Allen - Is surgery still an option? Even post-brachy? I think the OP/George had 88 seeds about a month ago.

George - you might want to talk to Dr Epstein, too. Steve had a phone discussion with him that was helpful. Said he was very down to earth.

Suz

Thanks..good advice. MSK and Dr. E. need to connect. Don't think I can have the operation after seeds. Will phone him tomorrow.