Prostate Cancer Consultation

It is Wednesday evening and my wife and I have returned from a consultation today at the National Institutes of Health (NIH) to review recommendations for treatment of the prostate cancer discovered on biopsy a month ago. The recommendation is for more testing to best determine how to proceed. There was a sense of concern, but no sense of alarm.

This very valuable consultation is offered by the National Cancer Institute (NCI) at the NIH as a public service, and my urologist had both recommended to me that I engage with it, and had asked the NIC to contact me to get the appointment set up. This is how it works: a multi-disciplinary team is made of a urologist, a specialist in cancer drug therapy, and an expert in cancer radiation therapy work with a radiologist, who interprets the bone scan and CT scan information, and a pathologist who reviews the biopsy slides. A physician interviews me and does a physical examination. The panel meets privately to review information already gathered by my doctors and returns to meet with me and a family member or friend to provide recommendations. This is a huge benefit, and there is no charge and no insurance to manage. An example of your tax dollars at work.

I’ve been working for a week to get information sent to the NCI. My old urologist, a person I’d been seeing at my former residence, sent his clinical summary and old PSA numbers. My new urologist sent his clinical records and the written interpretation of my biopsy slides and my CT scan and bone scan. The center that did the bone scan and CT scan provided a CD that allowed the NCI radiologist to see the study for himself and make an independent reading. It took a few calls and faxes, but everyone coperated. I am very grateful.

The only holdout was the company that did the reading of the biopsy slides. This company refused to send the slides to NCI because they took the view that the slides could only be loaned and must be returned. They claim that the NIH has had a history of keeping the slides and not returning them. So they responded to my request for overnight shipment of my slides to the NCI by opening some sort of dialog with NCI and not sending the slides at all. Rather than the overnight delivery I had expected, and paid for, I received a call on the third day after my order telling me that the company had declined to send the slides. The slides have still not been released. The physicians at the NCI tell me that the slides are my personal property and I should request that they be sent to me to keep, and that I should then provide them, again temporarily, to any other organization I want to consult with. OK. On my to-do list.

Fortunately the failure of the slide folks to do what I requested did not derail the consultation. I arrived at the NIH clinical center, getting off the subway at 9 AM. After going through a security process that is very similar to that in an airport I took a free shuttle to the main building. Inside, very pleasant and polite people updated my registration information, drew blood for another PSA test (51), and I had time left over for a cappuccino at the Au Bon Pain branch in the center atrium before going to the appointment at 12:30. A very pleasant nurse began the process, than a radiation cancer treatment physician reviewed my history, did a physical that included the required digital rectal exam (no nodules) and answered lots of questions. Essentially these points arose:
First – my long history of a high PSA is confusing. The biopsy results themselves suggest a moderate risk that cancer has already extended outside the capsule of the prostate. If the PSA is also considered, the risk appears high. But since the PSA could be explained by either some sort of ongoing irritation or infection, it is hard to understand how to consider it. The importance of this detail is that radiation is a more appropriate treatment if the risk is high, and surgery if the risk is only moderate.

Second issue is that according to the best information available, this cancer, if untreated, is likely to shorten my life by only a year or two. If it is treated, the likelihood ranges from 50 to 75% that it will be cured, and the end of my life will not be a time under treatment for cancer that has spread outside the prostate, but, instead, will be the same sort of end that is in store anyway.

Lastly, chances are about 1 in 3 that this cancer has already extended outside the prostate. This is critical for treatment, because surgery without radiation could be curative, at a 40% risk of lifelong impotence, and radiation therapy could be curative as well, with less likelihood of life long impotence, although a drug like Viagra would likely be needed for about 40% of people. I take this as good news.

After the exam an explanations, the physician asked me to return in about an hour to give the panel time to discuss my case. As scheduled, wife came to the center to join me for the follow up meeting with the panel to hear their combined judgment. The experts were patient and helpful. Their final feelings were simple. First, take antibiotics for six weeks to see if such treatment, alone, drops my PSA levels. If so, it makes cancer spread outside the prostate less likely, and surgery a more appropriate treatment. Second, schedule an endorectal coil MRI for a time about a month from now, to get further information about whether there is any local extension of cancer outside the prostate. This has been set for the week before Thanksgiving. The delay doing the MRI until two months after the biopsy is to give the prostate full time to heal from the biopsy itself. A week after the MRI, and after looking at the biopsy slides independently, the panel will again discuss my case and again meet with me with its recommendations. This second meeting is scheduled for early December. No charge for the antibiotics or for the MRI test or for the consultations. Man, what a great process.

Bottom line. A valuable consultation. There is cancer. It could be aggressive, but even if aggressive it is a slow grower and nothing needs to be done immediately. Second, with more information a better recommendation for treatment is available. The panel is willing to provide this second review and provide its recommendations to me at that time. My wife and I are much more relaxed. There is no longer the sense that life may come to an end in the next few months. A number of options are available. There are experts willing to offer assistance. A good result seems likely. I really can't ask for more. Now I have to do something about getting a hold of my biopsy slides.

Comments

Wow, I can't imagine how you feel. The news sounds really good.

Everyone I've ever known who has been diagnosed with cancer had it removed as soon as possible. I didn't know that there were cases where a month or 6 weeks would pass without any surgical removal of the cancerous tissue.
 
Thank goodness! What a helpful process and I'm so glad it's all looking so much better. What a relief.
 
Great news! Great to know too about the NIH arrangements. More waiting, why is it always the waiting ... although it sounds like a reasoned approach and a thoughtful decision on all sides. Stay strong man! We are with you.
 
what legal grounds does the company that READ the slides have for refusing to release them?! this outrages me. i would begin litigation over this at once.

my GOD the numbers and percentages (to me) are dizzying of 'if you take this route then the percentages of this result are thus and such' and 'if this....then that.." and so on. that would agitate me, but you seem to be doing remarkably well with all of it and my hat's off to you to handle it so well.

that is fantastic news and a good step to try the anti-biotics first. this is VERY good news and reassuring about so many people being so methodical about so many courses of action in order to determine the one that will yield the best result for your health and well being. this is a huge relief.

i am confused though: how can a cancer be aggressive yet slow growing? i thought aggressive in cancer speak = fast growing? i will look that up but happy to know that even if that is the case of it being aggressive that it won't = fast growing.

and pitbull is correct. they can duplicate the slides they have and unless you signed something stating they OWN the slides then i would raise a wall-eyed fit and demand them. that really pisses me off. i wish i was able to make a phone call and bring that to pass.

the good news - and thank you for sharing this journey and educating us all on it - is that you are relaxed, and hopeful and knowledgable more now than you were before.

the process of knowing how to treat the disease is almost more daunting than the disease itself. keep up the good work and stay positive.
 
I echo all the above sentiments. Thank you for sharing both your story and the information. I agree that it's outrageous that some company "owns" your slides. As if you don't have enough matters to consider without these jackasses giving you unnecessary grief!

I'm glad you have obtained so much help and advice about the various options and possibilities. Hang in there. Hope you can hear the cheers of support from Down-Under!
 
Again, my thanks to everyone for the very helpful and supportive comments here. I'm very grateful.

Pitbull and goodwood express my annoyance with the lab who made and read my biopsy slides. Getting in the way of the consultative process is basically inexcusable. I've contacted them twice (last Thursday and Friday) but an extended holiday weekend seems to have put the one person I should talk to out of reach. The slides, I was told, remain in the file and have not been sent anywhere! I expect the pragmatic solution will be to pay the lab for second cuts of the specimens and get those off to NIH. Then I'll deal with the question of getting one of the sets for myself that I can provide to any others who may need it (like the Veterans Administration).

For petite, the issue of "aggressive" in the prostate cancer world seems to be related to the likelihood of spread, more than the speed. Some prostate cancers that look, under the microscope, pretty much like normal tissue, may percolate along for several decades and never cause any trouble. You die WITH this cancer, but not OF it. The more aggressive cancers, that look nothing like normal tissue, more likely to spread to other parts of the body and to require treatment that reaches many parts of the body. These cancers shorten life, but not by much. They also get you involved in aggressive treatment that has lots of side effects. So the difference is important. I'm hoping that the risk that this has already spread is fairly low and that treatment will not have to be too extensive.
 
First, I wish you the best in this process... continued good news and successful treatment.

Second, thanks so much for writing this down and posting it. I'm sure I'm not the only one who is getting a useful education on this topic because you are sharing so much information. And I'm glad you are also including comments on how you feel. You write well, and what you are writing has an impact, at least on this reader.

Regards,

HB
 
Hey hungryboi -- definitely happy to hear that the blog has an impact on you, and I hope it's not because you have some concern associated with a climbing PSA score. I'm learning a tremendous amount here, and happy to pass it on. I'm also feeling confused from day to day. In particular, however, I'm finding this to be a time to look at my own priorities and to really celebrate the strength of my marriage. This is particularly tough on my wife who has always worried that I'm going to get killed by a truck while bicycling, or drown while diving or somehow be lost to her through misfortune. I always figure she's worrying necessarily but now we've got something concrete to consider. The worry collapses under direct action, however, so we're good for now while we take direct steps toward a resolution.

Thanks for your comment and your support.
 
I am so glad you were able to go right to the National Institutes of Health (NIH). Most people here will never have the privilege of there expertise and vast knowledge. I am happy you have great doctors and a wonderful wife helping you through this journey. Thank you for sharing everything with all of us. You are teaching us all with your experiences.
 
Lgtrmusr, your observation that "the worry collapses under direct action" is wonderful! I really like this way of putting it.

I think it was Bob Dylan (but I could be mistaken) who, when asked for advice, said "Just do something." When pressed for specifics, he indicated that it didn't matter what you did (in life), as long as you did something.

When this point of view is applied to a specific situation, I think it resonates with taking direct action: one of the benefits is "the worry collapses". I like it.
 

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