Connect
Are all treatment options given at diagnosis?
First, I want to wish all of you a very happy Father’s Day!
I’m posting today because there is a recurring question on my mind that I wanted to open up to the group. When I was first diagnosed with prostate cancer, the doctors did a great job explaining that I had a very low-grade type. However, they didn't really walk me through the alternative treatment options.
I’m not necessarily saying I would have made a different choice—I am comfortable with having chosen active monitoring over immediate treatment. Still, it bothers me that I wasn't told what those other treatments were, or what I would be up against if my cancer ever progresses past a certain stage.
Even though I can’t change the past, I still find myself wondering if my choice would have been different if I'd had all the facts. Has anyone else experienced this kind of gap in their initial diagnosis? How do you handle those "what if" thoughts?
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
I remember 5 years ago on my initial visit for endocrine and urology issues. The urology issue was growths on both kidneys for which removal was the treatment. At that time the options were surgical removal or cryogenic [freezing] treatment. When the time came I chose surgical since cryo was about 95% effective and could resuult in retreatment.
As my RO told me, we doctors are making educated guesses. By the way, she was trained at a center of excellence as were all the doctors that I reached out to for multiple opinions. Doctors are dedicated but they absolutely make mistakes, sometimes at the expense of their patient. My suggestion is seek multiple opinions, with whatever tests you have done, utilizing video telehealth calls. Most hospitals offer "second" opinions that way.
-
Like -
Helpful -
Hug
2 ReactionsSimilarly, my urologist didn't walk me through all the alternative treatment options.
When I was diagnosed with prostate cancer in April 2012, my first comments to my urologist were, “I don’t know anything about prostate cancer so, I’ve got a zillion questions to ask before you cut anything out of me, or bombard me with radiation, or inject toxic chemicals into me……” That set the tone for our future discussions and my priorities.
Having chosen active surveillance (I was on active surveillance for 9 years), I found that it was up to me to ask the questions, do the research, self-advocate, share in the decision-making, and ask for referrals.
Urologists know mostly about surgery, radiation oncologists know mostly about radiation, etc…. So, I asked my urologist for referrals:
> focal therapy (cryo; HIFU; laser ablation)
> internal radiation (LDR; HDR)
> external radiation: SBRT (Cyberknife; TruBeam), IMRT, & Proton.
I spent much time and researched the treatments, interviewed the specialists, became a “student of prostate cancer” (as I call it), and ultimately made my own treatment decisions, as well as coming up with a tentative plan in case of recurrence.
In the process, we had quite a few discussions. We weren’t always in agreement on the treatment path. When their argument was stronger than mine, we went with their recommendation; when mine was stronger than theirs, we went with my recommendation. We all worked together. I had the final sign-off with any action we took - self-advocacy and shared decision-making.
This (I found) was just part of the learning process, just as I’ve done for any other illness, disease, or illness that I’ve had in recent years (and had the time to research, like there almost always is with prostate cancer).
Having been fully informed, I’m confident I’ve made the right choices given the information that I had available at the time.
Never any “what if” thoughts.
(“You go to war with the army you have, not the army you wish you had.”)
-
Like -
Helpful -
Hug
4 Reactions@brianjarvis
I did not get any options from my urologist nor was I told the grade of my cancer.
@pesquallie That does happen sometimes. So, after researching my diagnosis, I asked. Much of the details were already right there in my PSA test report, MRI report, and biopsy report. Beyond that, it was up to me to ask.
As patients, it’s up to us to ask questions.
For my kidney grwoth the options were few, but definite. Excise while it's possible or face losing the kidney. Cryosurgery wasn't 100% assured that it wouldn't come back. Got one on the the other kidney that's on the watch list.