A Learning Opportunity for Myself As Well The Medical Professionals

As I mentioned in the last post, I underwent the planning session for the 5 upcoming SBRT sessions which will begin next week.  I had urethral pain that evening and quickly resolving discomfort the next two days.  But I was still quite disconcerted about what I perceived as a lack of attention to my concerns as expressed in the email I'd spent a good deal of time writing.  So I decided to express my thoughts about what I perceived as a lack of attention to my anxieties to the Nurse Navigator as well as Department Head.

The Nurse Navigator was out Monday, so the first communication I received was from the Department Head.  To his credit, he said, " It was very clear about your concerns—which, if we had all read it closely, should have been our concerns as well.  You did fine job of communicating, we don’t seem to be listening very well."  This was followed by contacts from the RadOnc in charge, one of the Rad Therapists that worked on me as well as the Nurse Navigator. I'll sum it up with I think my concerns have finally been heard.

What I learned from this experience is that if you have a past sexual trauma in your life that might cause you excess anxiety/fear, tell your new physician upfront, in blunt terms so (hopefully) they can treat you with a little extra care and instruct staff to do so as well.

What I hope the staff learned is that EVERY patient should be treated with the utmost respect and concern for privacy as IF they might have a traumatic episode in their past, as IF they might feel vulnerable.........as if one in every ten of their male patients has been raped at some point in his life.  Medical staff who have years of experience, as the ones treating me do, are the folks you want doing invasive things with your body.  But with years of doing the same job, sometimes humans can forget the little things that might make a HUGE difference in patient experience.

Maybe we all learned from the experience and the next patient's experience will be better.

The Half Day Planning Session for 5 Session SBRT and a Plea for Medical Personnel to Communicate Well (That Means Listening Too)

(1) “The needs of the patient come first.”(2) “Nothing about me without me.”(3) “Every patient is the only patient.”

Today I started the morning at the the gluteal crack of dawn. It began with a 3T MRI after which I switched to water intake for a SBRT planning session. Gotta pump up the bladder ya know. This took place at John Muir Cancer Facility in Walnut Creek California. Moving here and taking care of my health via this network (I use Concord for most everything) has been one of the best things I ever did for myself. The vast majority of the of the staff, techs, physicians, and RNs have been very kind, empathetic, understanding of my fears, patient with them and just down right lovely human beings who are willing to work with my concerns while getting the job done. My specialists (oncology, the 1st radiation oncologist who did the implantations and urology) have been with different practices or have their own practices that are associated with Muir, but virtually everything else I've had done has been at Muir and they really have been quite good. That said, my initial experiences with their radiation oncology department have been less than stellar after couple of difficult situations that I feel were largely failures in communication.

After the new MRI is done with an empty bladder, one switches to a urethral CT scan and full bladder. Now I'd read that having to "hold" so much while the session took place would be really difficult and uncomfortable. I had no problem and, while I could certainly have relieved myself, I was not uncomfortably "full." The insertion of the dye into the urethra was the "worst" part. There was  discomfort and pain, but it thankfully didn't last terribly long. More transparency on that as well as a physician that I'd met more than 45 seconds prior to the injection of stinging/burning substances into the opening to my penis......as I'd requested....more than once, would have been appreciated. Even if he couldn't have met with me while I was clothed and sitting upright, a simple comment by the physician such as, "Hey I did read your email and I understand you really don't care for this and have had bad, past experiences.  I can't promise I can make it painless or without discomfort, but I will do my best to make it quick and I understand your concerns." That was my only real complaint about the physician (I mean we barely spoke for a minute before I was gasping and biting my lip so how do I even begin to know what he's like?). Maybe next week we can take 5 minutes for a conversation while I'm sitting upright and clothed more or less. Communication.

The Rad Onc Nurses could have perhaps payed a bit more attention to consistent, careful draping; I'm not a prude and have gone to nude beaches, skinny dipped with friends, etc, But when one has a life altering, incurable disease, there is not much you have control over. As a matter of fact, hardly a damned thing... and to lay with your genitals uncovered with or without a penile clamp in place really isn't necessary unless the medical professional is working in that area and there were certainly, at times, reason for them to do so as they did their work. I seemed a good deal more ill at ease about it than the 2 Rad Onc Nurses but of course, they do this regularly and have 20 years experience, which I respect and am quite grateful for. But they seemed a little less concerned with draping than I would have liked.  Or if I couldn't be draped for some extended length of time where it really was required, a simple comment of what was taking place would have sufficed. I didn't feel like I got that. Communication.

Please note that these are relatively minor issues, but important to discuss. I spent time writing an email to be distributed to the staff I'd be working with and I'm told and don't doubt that is was shared.  But I feel strongly it was not read or, if it was, little attention was paid to it.  It's no secret that men tend to stay away from the Doc as it is. Because I had the luxury of having the same PCP for well over a decade, I knew he had and always would make every effort to respect my dignity because he understood that was part of trust between a medical professional and patient. Every effort should be made to respect the privacy and dignity of all patients, first because it's professional and secondly, because there are men (and women) who wont go in for intimate checkups if their basic dignity is not respected. I felt there was a fair amount of time spent standing and talking with each other, and ME, while I layed there undraped. Now YOU may do this every day and it may just be another set of genitals to you, but I DON'T do it everyday and these are MY genitals. Do your best to afford me that dignity in the same way I would hope to afford to you if I were the medical professional and you were the patient.  Treat me as if I might have had a sexual assault in my past that makes these procedures difficult for me.  Treat me as if I feel vulnerable in this situation.  Treat me as if something I've brought up more than once might be of more than average concern to me. Communicate.

I know that aggressive, high GL PCa is challenging at best. I'm glad I've found a team that I think understands and is in synch with MY goals and needs. While I do have this stringent criticism, I did feel that I was in the hands of professionals with over 20 + years experience.  My criticism is not of knowledge, but rather "bedside" manner, making every effort to know your patient and practicing simple elements of respect.  But most of all.......

communicate.

Next week, on to the 5 SBRT sessions. More to follow.

And Yes, We’re On. No! Really!

 After a couple weeks delay based on insurance and hospital goof ups and, admittedly a weekend delay on my part as I did additional research, I am now scheduled for this Friday at the gluteal crack of dawn. MRI at 7:30 AM. Probably done by about nine or so. Then on to the planning session where I must have consumed I forget how many cc of water but it’s a lot. There we will take CT scans of my pelvis, we’ll do what’s called a mini urethrogram (Kind of sounds like one of the least loved Disney characters, doesn’t it?) to delineate the base of my bladder, the penile bulb and, obviously, the urethra in hopes of minimizing any damage to these organs. I’ll also get some sexy tattoos on my pelvis so that in addition to the gold inside my pelvis, Ill also have a visual on the outside to line things up with. Accuracy is important here. I’ve always wanted tattoos but never have gotten any so maybe I can get them to do like, I don’t know, little stars or something.  I have also can I go on by the theory that the more markers that everybody has to look at both inside me and outside me, the more likely they are not to miss like say, I don’t know, if somebody (me or the tech) sneezes or something.

I’m in a pretty good frame of mind about all this. Apprehensive? Yes. A bit anxious? Yes. Not crazy about anything being inserted in my urethra? No not really at all. Concerned about complications immediately following the five sessions as well as long term? Very much.

But I’ve done my research and I know that I need to do this to hopefully prevent far worse treatments and or surgeries down the road.

*Deep breath’s and big smile*

14+ Studies and a Decision That Can Change Everything

When we last spoke, I'd just had gold implanted as well as a biodegradable gel in preparation for radiation therapy to decrease the size/scope of the prostatic tumor that presses on organs in my pelvis.

Due to insurance/hospital bureaucracy, I had (was able to take) some extra time and go down to UCSF Medical library and be guided by a research librarian on how to pull up THE most recent data on my choices and I will always speak highly of research librarians.

When I crunched data and read the studies (BTW, I really had to up my knowledge of radiation measurements/dosages/terminology......but it was so vital to do so), I came down to about 14 studies I could put on a spreadsheet and really compare.  There are no "good" choices when dealing with an aggressive, rapidly expanding tumor that is not curable.  But here's what I came down to.

The 5 session SBRT radiation treatment makes the most sense. While there tends to be a spike in GU toxicity in the first 1 to 6 months post treatment, it tends to get back to baseline for the overwhelming majority of men by 3 months.  Sexual function takes a hit but that's true regardless of the treatment.  But this seems to be less so with this hypofractionated treatment and is usually treatable with those famous meds we've all seen advertised again........and again........and again..........and again.....and again.......ad nauseum. Trust me, if I get a 4 hour erection, I'm buying a Superbowl ad to announce it!

Colon function, as long as we get started quickly, probably shouldn't take to much of a hit due to the SpaceOAR and the accuracy of the machine they use. And any hit it does take, according to studies,  should resolve quickly. I'm not too concerned there.

But I'd be lying if I said I wasn't anxious about treating my body with radiation.

I am.

But it seems to be the best choice of the ones available to me and one of the few that I am willing to introduce into my physicality.

I have to do something.  I hurt. Not just discomfort, but pain.  My joints and peripheral nerves have hurt for some time.  Now I have perineal as well as pelvic pain, which are new experiences for me and it's quite different. So I have to bite the bullet and try to kill off as much of  that damned tumor as I can, which means pretty much killing my prostate as well as assorted nerves, to relieve (one hopes) some of the new pain and keep me out of the operating room within a few months when surgeons would be trying to re-plumb things.

Chemo and the 8 months of Lupron (wretched stuff) really did damage my body in 2014 and doctors have often said I should have been on Lupron this entire time but I said no.  I chose supplements, lower stress, cannabis in various forms, gentle exercise in various forms, avoidance of conflict  as well as responsible attention to pain control.

The physicians have often said how "unusual" my cancer was and how it "didn't follow a normal pattern."  Well, this is when it gets kind of normal in the sense of a rapidly expanding tumor that threatens to invade vital organs. One might say shit just got real.......but it's always seemed real.

So the decision is made.  Just have to schedule an MRI and CT scan "simulation" session where they make a mold of my cakes (I'm gonna auction it off after this is done.....some foundation could use the $2-3!).  Oh, I also get to have a urethrogram during the CT.......look that up if ya feel like it :) . I am SO excited (emphasis on sarcasm).

But, I'm really at a good place mentally with all this.  Much better than I've been at times in the past.

So......

Color me grateful but still anxious :)   Onward!

PS:  If anyone would care for a link to the spreadsheet of studies I found most helpful, please leave a comment with a gmail address and I'll gladly share with you.