Coping with Prostate Cancer

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Comment by Joe McCleskey on April 14, 2009 at 11:52pm

Aloha,
This has been a rough couple of months awaiting a second PSA test after getting a January value that climbed up from over a year of being un-detectable. What we do to ourselves with worry is so very bad. It remained unchanged, WOW, the PCa aint back yet!!!
I'ed been having a lot of missques with my HMO Urology Dept, and had requested seeing an Oncologist Urologist which was sidetracked some how. So, I sent him an internal e-mail, and he called me yesterday!!!! He agrees that we should not act only on PSA rise, but should also confirm PCa before entering treatment. He set me up with monthly PSA tests, and said to call him if I had questions.
Faith, Hope, & Love,
Joe

Comment by Joe McCleskey on March 31, 2009 at 10:34am

Aloha,
I agree that PC leads to a lot of self doubt, anxiety, & worry. If you do not treat the whole person/family, this can lead to major depression, as it did in my case. My wife & I waited way too long, and when I did ask BHS for help, the first appt I could get was 6 weeks off. Of course they did ask during the phone interview if I was considering doing something stupid, and I said no. In the following four weeks, our world just fell apart, I lost my God & my sanity. My wife, after fhe first ER trip, became my rock, and would calm me back to reality. I wound up not being treated in ER, because broken bodies, get priority treatment, and it was a Saturday night (high school sports). After 3 hrs, I had stopped crying, so we left. About a week before my first BHS appt., my PCP prescribed a SSRI to help calm my obsessive thinking.
When your are diagnosed with cancer, PLEASE check your mental health.
Faith, Hope & Love,
Joe

Comment by Kent Leipold on November 10, 2008 at 6:02pm

I have found the USTOO meetings to be very helpful and informative. I highly recommend them.

Comment by Steve J on November 10, 2008 at 2:46pm

Please forgive this belated reply to Chuck's 10/30 comment re: lab reports.

One thing I was doing was attending the Us Too University in Tempe (pr. tem-pee') Arizona. A most worthwhile meeting and I'm sorry that Chuck was unable to attend to meet & greet as well as to pick up his well-earned Hope Award.

Back to the point: I sent an e-mail to the CEO of the lab. Reason I did that was that I have found that if one wants action, it is usually best to begin at the top. I did the same a few years ago when my bank suddenly refused online access to my accounts. The security had been "updated" by someone who was ignorant of the fact that Steve Jobs invented the Apple computer quite a while ago. Writing to the CEO got prompt action as well as reimbursement for OS update software.

I got action from the lab. A call from his assistant who apologized and promised to have the charge for the incorrect test reversed. Also asked me to advise when my next draw is done so the handling of the specimen can be closely tracked.

Didn't offer to send me a million $ for the mental distress, though :-(

Comment by Charles (Chuck) Maack on October 30, 2008 at 9:51pm

Interesting that the same happened to another patient in the last few days. Whether it would do any good or not, were I you, particularly with this being the second time you experienced an incorrectly performed ultrasesitive PSA test, I would write a letter to the laboratory that made the error expressing your concern and describing the anxiety this has caused you as a prostate cancer patient. Just possibly some corrective action/education/attention will be done at that facility.

Comment by Steve J on October 30, 2008 at 8:32pm

A few minutes ago, I received word that the lab that performs my
monthly PSA tests had, for the second time, reported falsely.

Briefly: I have a 28-day ultrasensitive PSA test. For the past several
months, the results, using the Roche Electrosys process, have been
<0.03 ng/mL (0.864 nmol if I have my numbers right). My October 20
test came back 0.22 ng/mL (6.336 nmol), some 7 times the previous result.

Having been through a previous trauma in which my PSA was falsely
reported as some 400% higher than the previous result, and also
because the latest result seemed to be far too much of an increase
over just 28 days, I ordered another test, which was done on October
27, just a week after the other.

Result: <0.03 (0.864) and I thank whatever gods there be for the
relief. I do NOT thank the lab.

Take-home lesson for all: Do not accept a test result that is far out
of the previous norm as The Word. Have another test performed.

Medics are human. Labs are infested with humans. And we humans are
prone to error. Check and cross-check. Trust nothing and no one to be
utterly and always reliable.

I have cried salt tears over this, as well as the previous lab error.
But I also have learned a valuable lesson.

Comment by Charles (Chuck) Maack on October 21, 2008 at 2:52pm

I never thought of myself as "Coping with Prostate Cancer," yet, in reflection, I believe that what I did decide to do was likely my manner of "coping." When I had recurring disease, my initial plan of action was to research and learn all I could regarding what I would be dealing with as an androgen deprivation therapy (ADT) patient. That lead me to an education regarding prostate cancer and its treatment far beyond just ADT. And when other patients sought "my" counsel, I realized that advocacy was needed, and if I were to become an advocate, then I had better do even more research and study of our insidious men's disease. And this is where my "coping with prostate cancer" relieved my personal concern and rather challenged my knowledge to help ease the burden of concern for those men and their caregivers following in my journey. At the same time I joined the local Us TOO prostate cancer support group chapter that had formed just two years earlier and got involved. This long journey of advocacy and leadership roles in keeping our chapter active, along with the abundance of information I collected and saved, has aided in the understanding and treatment of my continuing cancer and made my long journey (since 1992 and advocacy since 1996) so much easier that I don't even consider I am "coping." My concern has moved from me to my brothers and caregiver sisters in the world, and I have absolutely no problem in wearing the "SEA" blue lapel pin and wristband that has embossed thereon what "SEA" in Sea Blue means: "Support, Educate, Advocate." Try it my brothers (and sister caregivers), and you will find advocacy extremely rewarding to your own well being.

Comment by Bill Martin on July 9, 2008 at 11:02pm

This is important. My story is that I choose to tell everyone that I was having surgery - and everyone who was close to me that I was experiencing incontinence and impotence. I am fortunate in that I belong to a men's group and could talk about all of my issues there. I also found it useful to write poetry - helped me to clarify what I was feeling. Finally - I have a wonderful wife. The local prostate group more or less discouraged me from speaking frankly about my struggles with impotence - interestingly, the women at the meeting were encouraging, but the leaders (men) were not. I spoke anyway, but in re4sult, received my best help from my regular men's group and my friends and family.

Comment by Lucy Luusah-Mutuku on July 8, 2008 at 12:01pm

Jambo Dr Arnon,
This is a very important discussion I feel it is therapeutic, although I have not talked t so many men suffering from Prostate but I tell you "cancer is the most scaring thing, well has been all the time, although lately 80 percent an be delt with but as much bad as it can be, I think Prostate Cancer tells the patient very very negative thoughts and I do think to cope well the patient and the imm. concerned must be shown Love from the consultant to the Surgeon to the Grandchildren...(...covering his whole world) from the position of the diagnosis to the options to the possibilities to the chances and tell nothing but "hope" the mind will process positive outputs on its own and that will help in alot of emotions. A man needs to be confirmed that he still rules even if he is dying!
Depression should be avoided at all costs, for sometimes coming out is so difficult. "LOVE" conqures all. All things should be tried to make sure these patients dont sink into these negative emotions.... they should not be left alone to their worries and fears.

Comment by Leah on July 5, 2008 at 12:14pm

Thank tou Arnon. I like the title. But the message I sent about the need for such a group got lost in the shuffle. I think it's important for people to read, especially the "youngsters". So I will repost it.

"There's a major problem with untreated depression (and anxiety) in the PC community. I know it because I've read thousands of messages in the online PC forums and have also read articles about it. Just last night, in a popular listserv, a man asked for help because he said that after 2 years of living with PC, he felt "overwhelmed". I suggested he get prof'l help and if he needed, to look at my blog post, "FYI: Should You Be Feeling Desperate" (prostatecancerblog.net).

There needs to be a multidisciplinary approach to the treatment of PC which includes proper follow-up and emotional support. By that I mean referral to sources of psychological, sexual and spiritual counseling as well as peer support.

Under "PC Diagnosis May Be Dangerous -- Especially to Younger Men", I write on my blog how men under age 54 are particulaly at risk for suicide and "cardiovascular events" after diagnosis. There's also a very recent English study which describes the "pscyhological distress" of men treated for prostate cancer, especially with RP. Again, the problems are worse in younger men. (Ream, Quinnell et al, "Support Care Needs of Men Living with PC in England".) Also, ED is a major risk factor for depression, and many men who are treated for PC end up with ED."

How do I cope? I'm very "scent-sual" (husb says I have a "dog nose"), so I like aromatherapy. I just bought some new "essential oils" from vitacost.com. I put a few drops on a ceramic ring which sits on top of the light bulb in my lamp and it scents up the room. Woodsy fragrances are especially relaxing.

I also use a yogic breathing exercise I learned in college. You just mentally "watch your breath" going in and out of your nostrils, etc. Really calming.

And of course I see a therapist. If you don't have one where I live, you're not considered normal.

Leah

Leah