And it's back...

The melanoma in my right ear lobe is back. I noted a small, irritated lesion in early February. I called the triage nurse at MD Anderson. She conferred with medical staff and told me to see my dermatologist. It took a couple weeks to get an appointment with the dermatologist. By then, there were a number of small lesions on and around my right ear lobe. She said it didn't look like a cancer and prescribed a 10-day course of anti-viral and antibiotic medicines and a steroid cream for the ear. During that time it got continually worse. At first follow up with her, mid-March, she took a biopsy.

I got the results on Thursday, March 30, 2023. Positive for melanoma. By now, the entire ear is inflamed and there are at least 8 lesions on the external ear, plus I have a swollen, sore, red spot on my neck just below the ear. I have an appointment Monday, April 3 at MD Anderson for ultrasonic scan of the head and neck and evaluation by the clilnician. Ironically, this appointment was made in December, as a routine follow up to the surgery which removed melanoma tissue from my ear and three lymph glands in my neck after my October 28, 2022 melanoma diagnosis.

This is my fifth positive cancer diagnosis to date.

Thursday, April 6, 2023 I will go back to MD Anderson, this time for a repeat PSA test and CT scan to see how the possible reaccurence of prostate cancer is faring.

Oh, but the broken rib has apparently healed well -- no pain or problems in that area.

Stay tuned.

The saga continues, and it hasn't gotten any EZer.

Since my last post, I have had surgery and a variety of scans (PET with contrast dye, echo-scan of neck soft tissue, PSMA with contrast) and surgery. The surgery was to remove the lesion that proved to be melanoma in my R. ear lobe. The PET scan and echo-scans were prepertory to that. With part of the ear lobe, the surgeon also took three lymph nodes from my neck on the R side for biopsy. After surgery and post-surgery pathology, they reported 'clear margins' on the ear lobe and negative for melanoma in the lymph nodes. That was done by Dr. Shellenberger at MD Anderson/Banner in late November of 2022. It is now March 8, 2023, and lesions (multiple) have appeared on my R ear lobe. They itch, and like the earlier granuloma, have a tendency to form blood blisters, pop untouched, and bleed profusely. I spoke to the triage nurse and MD Anderson and sent her iPhone photos of the ear lobe. She consulted with Dr. Shellenberger. He said I should see my dermatologist. So I did. I saw Ms. Mack on March 6, 2023. She consulted with another provider, then told me that it did not appear to be cancerous but they were unsure of what it might be. She prescribed Halcinonide cream (topical) and both an antiviral (Valacyclovir) and an antibiotic (Doxycycline), all three to be used for a 10-day course and then reexamine.

The earlier-mentioned PSMA scan was a result of my PSA test showing a positive result on the routine annual re-check on December 13, 2022. The results were low, only 0.03, but it has been non-detect for seven years, and should have stayed that way. I was referred to a different clinic at MD Anderson where I say provider Michael Snyder. He repeated the PSA with the same results then ordered the PSMA scan. The results of the scan were inconclusive -- no sign or active prostate cancer was found, but two spots that might be of concern for other malignancies were noted, and I've been scheduled to repeat the PSMA in April. I have to be sedated for the PET scan and/or the PSMA. They aren't as bad as an MRI for my claustrophobia, but more than I can do without some sedation.

Meanwhile, On February, 24, I fell on the sidewalk and broke a rib rib. Was seen at Dignity Health ER, Ellsworth/Elliot. CT and blood work. Clean break, rib #7 (4th rib, R side), 6mm displacement. Prescribed pain killers (hydrocodone/Tylenol and Ibuprofen) x 5 days. Dr. says will heal, but will hurt. 1-3 months normal for healing. Also on CT, report of gallstones, 'tiny' hiatal hernia, and atrophied pancreas. I discussed those findings with Dr. Klein, my PCP, and he was not concerned. At 11 days after the break, the rib still is excruciatingly painful under the 'wrong' circumstances, such as a sneeze.

My friend in Texas, who has the melanoma first found due to the pylogenic granuloma is having a very hard time. Her melanoma spread from a single spot on her leg to an outbreak of cancerous lesions 10 inches in diameter in a matter of weeks. She is being treated by radiation and chemotherapy, and is unable to walk or stand at this time, so can't work. And she's a single mother. Her melanoma was first diagnosed on October 28, 2022, the same day I was first diagnosed with the melanoma on my ear lobe.

Empathy is not always EZ.

I participate in a Facebook-based support group for prostate cancer sufferers, patients, survivors, and their supporting family, friends, and lovers. There have been many discussions of the symptoms and impact on the body of the cancer and the effectiveness and side effects of the various treatments. Side effects that often include urinary incontinence and erectile dysfunction (ED) formerly known as impotence. Everyone's journey through this often fatal landscape is wildly unique and different. Today one of the partners of a cancer sufferer posted a note that ED just didn't matter and implied that forum members should just be glad to be still alive and shut up about that issue. A couple of men (both suffering extreme cancer-related life-threatening problems) posted that, in their dire situation, sex simply no longer mattered to them. The original poster (OP in today's language) then congratulated those two for "being comfortable in your own skin and for having good self esteem and for knowing what a REAL MAN is." I found her words to be insensitive and hurtful, and did not immediately have the words to respond. 

A couple of other cancer-suffering men did chime in and post to the effect that she simply did not understand. One man went so far as to call her patronizing. I'm not sure I'd have used that word. Anyway, after some time pondering, below is what I posted in reply to her REAL MAN comment:

Thank you, Robert and Henry. I wanted to respond to Patsy but needed some time to think so that I could, hopefully, respond in a way that does neither diminish those with greater problems and suffering nor hurt Patsy for her lack of understanding and empathy while making it plain that her words were hurtful.

My dear wife and I have remained committed and faithful for over 48 years. We have raised a great family who are doing well and enjoying life. I am thankful for her and our children and grandchildren, for my life, remaining health, and capabilities, and I have great sadness for those, like [name withheld here] and many others, whose situation is really much more dire and difficult. My PC was originally diagnosed as stage 2 with a Gleason of 4+3 with “excursions to 5.” Twelve of fourteen biopsy cores were positive for cancer although my PSA had never been over 4 and all of my DREs had been unremarkable. The biopsy was recommended because my PSA went from 2 to 4 in a three-month period (followed because I did have BPH, and the PSA increase was verified with a follow up and a second lab). The RP surgery proved the cancer had spread outside the prostate capsule so my diagnosis was changed to stage 3. I have, and continue, to receive what, to the best of my ability to judge, is excellent medical care and I have excellent insurance. My oncologist, supported by post-surgery pathology, believes that all the cancer was removed. At six-months post-surgery, my PSA is ND. I do recognize that in many, many ways, I’ve been exceedingly blessed.

I have no idea how to communicate the loss that my wife and I both feel, other than to say that it hurts. Our hurt in no way diminishes anyone else’s pain. But it is real. We have benefited from joint counselling post-surgery. Depression meds (for both of us) have helped.

I am as “comfortable in my own skin” as I know how to be, take responsibility for my health where I can, and continue to work full-time now that I’m past my initial recuperative period. I provide for my family and provide emotional, intellectual, loving support for my family. I ride my motorcycle regularly. My youngest daughter and I rode our bicycles in a 20-mile fund-raising event for the American Diabetes Association. I’m training for my first 5K running event in support of funding for PrCa research. I try to be supportive to others through this forum and our local chapter of Us Too. I meditate daily and do yoga on non-running days. I share the housework and read to my vision-impaired wife. She and I do enjoy intimacy and I’ve tried to be a sensitive and giving lover within my current capabilities. But our loss still hurts. It hurts her and that hurts me. And, deep down, there are the fears voiced by Henry (Explanatory note here -- Henry voiced fears on Facebook that his wife would leave him for a more capable lover) —and I do not mean to slight my wife nor disrespect her in any way when I voice this. I believe that if you have not suffered the loss of something that, for your adult life, has been part of your being and part of what you could offer in a loving relationship you probably don’t really understand. And for that, you must be forgiven.

So, Patsy, what is a real man?  And how can anyone define that for any other person?

I await her reply.

It's not an EZ road to recovery.

I've joined a support group for prostate cancer victims on Facebook. I also attend a live support group that meets once a month. Here is a description of my experience that I have shared with those groups.

I'm 65 yo, reasonably healthy but about 10% over ideal weight. I had the DaVinci radical prostatectomy on 3 December 15. 12 of 14 biopsy cores had been positive, Gleason of 7 (4+3 with "excursions" to 5) and some evidence of extra-capsule malignancy. Both the radiation oncologist and the surgical oncologist (and second opinion) agreed surgery was the best first choice for me, as it can be followed by radiation if not fully successful but, for some reason, it's less desirable to do surgery if the radiation doesn't fully work. I spent two nights in hospital, had next to no pain, painkillers for only two days post-discharge. I took the month of December off (slept  and went back to work 1st workday of January. Will go back for F/U with first post-surgery PSA early February. The surgeon was able to do "nerve sparing" surgery on one, but not both sides, of the prostate area. They took the seminal vesicles and samples of the lymph nodes as well. Pathology after surgery was good with all "clean edges" but it did show some extra-capsular malignancy which was removed. At this point, I'm finding that I still have excess fatigue and tire VERY easily. The incontinence is my big gripe, very demoralizing, and I've not seen any improvement, yet. I had a catheter for one week. Since it's removal, if I'm standing or walking, I'm leaking. I can hold it no problem sitting or laying down. Coughing, sneezing, laughing no problem unless standing. I'm using "prompted toileting" using the timer on my iPhone to remind me to void every hour while awake. I am receiving rehabilitative care once a week with biofeedback on the Kegels and electrostimulation for the pelvic floor muscle. I find I do better on holding the urine when I'm fresh than when I'm tired. I've been prescribed daily Viagra and issued an expensive pump, but there's no sign of life there yet. My wife is demonstrating the meaning of patience. A deciding factor for me: every Dr. I consulted said side effects are initially worse with surgery but they get better -- with radiation, side effects are minimal up front but a significant number of men so treated have onset of incontinence and impotence later on and the side effects then get worse over time and never get better.

---

It's more EZ at home

Well, here I am at home. Prostateless post-surgery and wearing a catheter. while I have been prescribed some pain killer, the pain is not really bad. The catheter is uncomfortable, but it should go away in about 10 days.  I have a long list of do and don't items. Get lots of rest. Walk a lot. Avoid stairs, etc.  I may be back later for a bit more discussion, but now that I've walked a bit, I feel the need for some rest.

Positively EZ or easily positive?

October 20, 2015

My biopsy was collected on the afternoon of September 24, 2015, by Dr. Duffey in the urology clinic at the Brooke Army Medical Center (BAMC) within the San Antonio Military Medical Center (SAMMC). As I dressed afterward, Dr. Duffey said, "Make an appointment to come back in two weeks. I don't share results over the telephone -- good or bad, I do it face to face."

My appointment for receiving the results was made for the afternoon of October 8th. It was a convenient time, as I already had an appointment scheduled at the ophthalmology clinic on the morning of that same day. For at least 10 days prior to my appointment I found that I was unable to accomplish anything and could not concentrate for 10 minutes. I couldn't read, I couldn't write, I couldn't watch TV or a movie. I did not know why until I realized that at some level I was frightened. Upon that realization, I went and talked to a friend, really opening up. That helped.

I checked into the urology clinic after lunch on the 8th and was directed to the waiting area to see Dr. Duffey. As I sat on the slippery vinyl I tried to anticipate my appointment and receiving the feedback that the biopsy was negative. I mean, after all, I'm not sick, I have no pain, must be no problem, right? What, exactly, would I tell my family? Would I write about it in my blog? Would the doctor ask me to repeat the biopsy at some future date? With these thoughts in my head, I drifted into a light sleep.

"MR. MOYES!" Oh. My name. My appointment. Shaking my head to awaken, I stood and received my direction to Dr. Duffey's office, where I was greeted and seated.

Dr. Duffey did not mince words: "Your biopsy was positive."

There was more; a lot more, and I think I actually recall most of it, but I don't need to write about it here. The summary: of fourteen needle biopsy samples two were negative for cancer, four were questionable, and eight were positive. Of the eight positive samples, some had as much as 60% of the cells cancerous. This cancer, prostate cancer, is rated for risk using something called the Gleason Scale rated from 2 - 10. I recall that Dr. Duffey was professional, positive, and kind. He had earlier, before the biopsy, explained carefully that prostate cancer is not a death sentence -- it is generally not aggressive and most men of my advanced years that are diagnosed with prostate cancer die with the disease, not of the disease. And it is common: nearly half of the men who reach their mid-60s will have prostate cancer. With a Gleason score of 7, I am a patient of "Intermediate Risk." Dr. Duffey outlined my options: (1) Watchful waiting; (2) Prostatectomy by surgery; (3) External radiation therapy; (4) Implanted radiation "seeds." I, the patient, must decide which course to follow.

• Option 1, watchful waiting is not a good choice for a Gleason 7, Dr. Duffey says.
• Option 2, surgery is Dr. Duffey's choice, but he is a surgeon and admits to prejudice here.
• Option 3, external radiation is, he says, also a good choice and tells me I'll consult with a radiation oncologist before I make my decision.
• Option 4 is not done at BAMC.

So that leaves options 2, surgery, or 3, external radiation. Dr. Duffey assures me that I don't need to make the decision right away but again stresses that I will have to make the decision. He explained that I (and my wife) would be enrolled in their comprehensive prostate cancer clinic whereby we would receive broad counseling from every medical and helping specialty known to man. I was introduced to Janet, who runs the comprehensive cancer clinic and she enrolled me (us) and gave me a verbal overview. In addition to the counseling, we will meet with survivors and current patients and have group sessions. Our first appointment for the comprehensive clinic is scheduled for the 28th of this month. Only after meeting with and being briefed by surgeons, radiation oncologists, nutritionists, psychologists, financial counselors, and the kitchen sink will I have to decide on a course of treatment. I left the clinic on the eighth of October with a bagful of reading assignments: books, leaflets, pamphlets, sheets, and a long list of internet links.

So, I have cancer. Cancer that is common and is not normally considered to be aggressive, not normally considered to be fatal. But my particular cancer is on the more aggressive side of the scale for prostate cancer, hence the Gleason score of 7. I have cancer. It does not have me.

I will have to make a treatment choice. Right now I'm leaning toward the surgery, but I won't make a final decision until after I speak to the range of counselors. Modern surgery is much less invasive than in recent past years. They use an orthoscopic technique with robotic assistance. The doctor says convalescence is normally comparatively short and most men are back to full function within about three months. Some men experience a loss of sexual function with the prostatectomy. Some don't. There will be other side effects with surgery and with radiation therapy. We will deal with those as needed. This is so new to me, because, you see, at age 65, I've never had any invasive surgery; never been hospitalized, and rarely ill beyond a head cold, so I've been blessed up until now. I did have a small skin cancer removed from my upper back a couple years ago, but that was outpatient, quick, and painless.

Now I'm reading the book, "What helped me get through" written by and about cancer survivors. I have shared the news with close friends and family. I don't see any reason for this to be a secret, but I don't think the world needs to know, either. But I need to clarify my thoughts, and writing is one way I do that, so I'm writing. I'm working. I'm scheduling and attending events with my family. I'm enjoying things that I want to enjoy.  I've also told my three sons that they are at increased risk of prostate cancer (their uncle, my eldest brother, is a prostate cancer survivor, so the tendency is definitely in the family) and advised them to ensure they talk to their doctors and get their checkups.

Over the next weeks (months?) we will be busy with appointments and procedures. We will deal with it and do what needs to be done. I thank our Father in Heaven for the good years I have had and for the good days I am having now. My last two blog posts are about family and friends time. It seems sweeter now than ever before and I am thankful. Friends and I are working on an idea for founding a nonprofit organization that should do a lot of good. I am thankful for the opportunity to contribute in a small way. I think I'll take the initiative to do my home teaching, visiting the few families in our ward congregation that I've been called to minister to. I am thankful for that opportunity.

And with this, and for now, I wish you all well. Guys: Talk to your doctor. Have your exam!!