After publishing last night’s post, I crawled into bed and began searching through my favorite bedtime read, “100 Questions and Answers About Prostate Cancer,” for any information on what to do with the lymph nodes.
There on pages 62 and 63 was the following:
Not everyone needs a pelvic lymph node dissection. When the risk of having positive lymph nodes is low, such as occurs in men with a low Gleason score or a PSA < 10, a lymph node dissection is unnecessary.
- The main risks of a pelvic lymph node dissection are bleeding, nerve injury, and lymphocele.
- Bleeding: …are near large pelvic arteries and veins, called the iliac vessels. Injury to these vessels or their branches may cause bleeding.
- Nerve injury: The obturator nerve supplies muscles in the leg…If the nerve is cut or damaged at the time of surgery and the damage is recognized, it may be sewn back together. If the injury is not recognized, it may lead to permanent inability to cross your leg on the side of the injury.
- Lymphocele: A collection of lymph fluid that collects in the pelvis.
Reading that reinforced what Dr. Indy had said, and that was reassuring. I slept pretty well considering the mode I was in much of the afternoon and early evening.
This morning, I called Dr. Cincy’s office and explained that I had been there last Thursday, and since meeting with him I had some follow-up questions for the doctor. I mentioned that I had them written down, and the receptionist asked if I could send them to her, and she’d get them to the doctor and he’d call me when he had time. I fired off my questions at 9:08 AM.
At 11:04 AM, Dr. Cincy called me to go over my questions. We talked mostly about whether to keep the lymph nodes or not based on what was on page 62.
He was familiar with the recommendation to keep the lymph nodes when there are low Gleason and PSA scores, but he suggested that it’s not just about the scores. He was concerned about the volume of the tumor as well.
Even though my Gleason is 6 and my PSA is 5, with 11 of 20 biopsy samples having cancer in them, he thinks that the volume of my tumor is large enough to warrant checking out the lymph nodes by removing them. That was a reasonable explanation and, to me, showed judgment beyond looking at the studies or statistics.
He said that if I wanted to leave the lymph nodes in, he’d be willing to do that. It would be my call.
The final question that I asked him was, given my status, and given the procedure that he described on Thursday, what percent chance do I have of being cancer free at the end of it all. His answer: 80%. That’s a good number, but a bit lower than I expected. It also makes me want to read between the lines and say now I know why he wants to remove the lymph nodes, too.
I also had some questions for Dr. Indy after yesterday’s visit, and I e-mailed those to his assistant (without calling in advance as I had done with Dr. Cincy) at 9:27 AM. She opened the e-mail at 10:10 AM (return receipt); it’s now 9:11 PM, and no response from Dr. Indy yet.
I will say, however, that one of Dr. Indy’s nurses called around 5:00 PM as a standard follow-up to my visit. She asked if I had any questions that I needed answered, and I told her that I e-mailed them to the assistant this morning. She was unaware of that. She also asked if I was given a booklet or CD describing the procedure yesterday, and I did not receive either. She’ll mail those to me.
This afternoon, I spoke with a coworker who had breast cancer and cancer was found in her lymph nodes. And, just by coincidence, I ran into a retired coworker who had his prostate robotically removed five years ago, and they took his lymph nodes. When they did the biopsy on the lymph nodes, they found trace cancer cells. (I didn’t think to ask him what his Gleason and PSA scores were.) As a result, he went through chemotherapy and radiation, and five years later, there’s no sign of cancer.
The kicker with prostate cancer is that you can look at the Gleason and PSA scores and make the assumption that the cancer is contained within the prostate based on historical studies and statistics for those given scores or combination of scores (Dr. Indy’s approach). But you don’t know how close the tumor has come to the edge of the prostate until you actually take it out and section it in a biopsy (Dr. Cincy’s approach). Only then will you know if you have what’s called a “positive margin,” meaning that there are cancer cells all the way up to the cut edge of tissue removed during surgery. A positive margin indicates that there may be cancer cells remaining in the body.
I’ll have been sewed up and super-glued back together for a week before the biopsy results come back, and then it’s too late to go after lymph nodes or other tissue if there is a positive margin. At that point, they’d have to do some sort of screening (CT scan?) and perhaps another biopsy to check if the cancer has spread. If it has, then chemo, radiation, and / or hormone therapy are all options.
If you take the lymph nodes with the prostate, at least they can be biopsied right away, and you’d get the results about the same time you’d learn whether there was a positive margin. I suspect that you’d have the same result: CT scan and chemo, radiation, and/or hormone therapy.
I guess it comes down to this: If you’re going to get to the same ultimate destination, does it matter which route you take?
I think with Dr. Cincy’s approach, you get there faster. I’ll know pretty much at the same time: Positive margins? Yes/No. Cancer in lymph nodes? Yes/No. If Yes, chemo and radiation begins now.
With Dr. Indy’s approach, you go: Positive margins? Yes/No. If Yes, take more time and scan and biopsy lymph nodes. Cancer in lymph nodes? Yes/No. If Yes, chemo and radiation.
As a data driven guy, I can understand Dr. Indy’s approach. Let the facts at each step of the process dictate what the next steps will be. Why mess with the lymph nodes until you know that you have positive margins? If you have a positive margin, then you proceed with testing and biopsies; if you don’t, then you haven’t removed the lymph nodes unnecessarily.
As you can tell, I can argue both positions pretty well. Before writing this, I would have told you that I was pretty strongly in favor of Dr. Cincy’s approach. But the act of writing this has made me take a second look at Dr. Indy’s approach.
The good news is that I don’t have to make a decision before I go to bed. Or tomorrow. Or Thursday. Or Friday.
I did order a book this morning from Amazon.com that was a “must read” according to the Prostate Cancer Foundation for anyone about to undergo a radical prostatectomy. I splurged for next day delivery, so it should be here tomorrow. Maybe that will provide additional insight…
Thanks for listening to me today and for letting me “think out loud” on this blog tonight.
2 thoughts on “Day 34 – Research & Analysis”
I have just started reading your blog from the beginning as my partner was just Dx with PC. His Gleason is 6 and PSA is less than 5. You mention a book above you ordered from Amazon but don’t name it. I would like to order it as I have been reading everything about PC I can find.
Your blog has so much good information and is helping us both navigate through. I joined several FB groups to try and find out other men’s experiences etc. I think we are going to start off with having the MRI that zeroes in on the prostate through Mayo to find out exactly where we stand. I have been reading with a Gleason score of 6 you can approach it with a wait and see. Your blog may be learning in another direction.
Thank you!! I hope you are doing well.
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Sorry to hear that your partner has joined this club. The book I referred to was “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer.” I know it’s on its 3rd edition for sure, and the 4th edition may be in the works. It’s a good primer on the topic of prostate cancer and treatment options. You don’t have to read all 800 or so pages; I just “cherry-picked” those parts that applied to me, at least initially, and then read the remainder at a more leisurely pace later.
With a PSA less than 5 and a Gleason of 6, it sounds like your partner is very much a candidate for active surveillance. Even if that’s not for you, you definitely don’t need to rush into a decision. Take time to research from credible sources, talk to others who had varying treatments—realizing that EVERY case is different—and then make your decisions.
Wishing you all the best. Keep me posted how things go.