Prostate Cancer: The waiting to get going on treatment is killing me

Posted by Bob Butler @robertjohn, Apr 8, 2015

I just received the diagnosis of prostate cancer from my urologist on March 25. PSA 4 months ago was 5 and gland felt normal. Then a month ago PSA jumped to 14 and they found a bump during the DRE. Then the biopsy. High Gleason score of 10 indicating aggressive at that spot. I have been checked yearly and at 6 month intervals for 7 years. I sit here 14 days later and still have not had a face to face with the Dr. He is on vacation. I am thinking of just heading to Mayo and get this process rolling. Shouldn't I have had more concern here from my docs to get moving? Or am I impatient? I feel the waiting is killing me and my family. The bone scan is done as well as the CT scan. Bone scan is good, CT shows slightly enlarged lymph nodes in the pelvic area. Could be just swollen. Insurance company denied a further PET scan and now I am waiting again. What an ordeal to deal with and no one seems to be as concerned as me. Any thoughts.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Kelsey Mohring | @kelseydm | Apr 8, 2015

Hi Bob! I'm so sorry to hear you are going through that, and I know all that waiting must be really frustrating. You are certainly not being impatient, it's natural to want answers and action in a situation like this. If you decide you'd like to see a new doctor, we'd be honored to take care of you at Mayo Clinic. To set up an appointment please call one of our appointment offices (Arizona: 480-301-8484 Florida: 904-953-0853 Minnesota: 507-538-3270) and let me know if you have any trouble!

hamhock ellis | @hamhock | Jul 14, 2015

My prostate cancer has reoccurred after having seed implants as indicated by a rising PSA. I am now on Lupron which initially took the PSA down to below 1.0. It's climbed back up to 3.15 and is increasing about .50 every six weeks. No metastasis so for. Anyone with Lupron depot experience? Also my doctor is considering putting me on either enzalutamide or abiraterone.

Marky | @giddyup1 | Jul 17, 2015

<p>HI, I just found out today I have prostate cancer. My PSA is 175.I am really scared.</p>

Rebecca McRoberts | @rebeccamcroberts | Jul 20, 2015

In reply to @giddyup1 "HI, I just found out today I have prostate cancer. My PSA is 175.I am really..." + (show)

Hi Marky. I'm so sorry to hear what you're going through. If you reach out to your doctor or nurse, they should be able to provide some reliable sources of information to help you understand what to expect from treatment. There are several complementary medicine techniques that may help you cope with your anxiety, including exercise, music therapy and relaxation techniques - you can learn more at the link below. http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/alternative-medicine/con-20029597

Please feel free to reach out with any questions you may have.

Paul Dickie | @BuckyFestoon | Apr 7, 2016

To: @robertjohn @hamhock @giddyup1

In July of 2011 my PSA was over 25,000 (you read that right), I was jaundiced, My liver was failing, my kidneys were failing (you can read my detailed story on my Hope Digest Facebook page). I went to my local MN hospital and they didn't have a clue. I called The Mayo Clinic and they told me to send my medical records to Dr. Eugene Kwon in the urology department. When I saw Dr. Kwon and his team for the first time they weren't sure I would make it to my 2nd appointment BUT their attitude was if there was a way they would find it. They started me on Lupron and I had a double nephrostomy. 8 weeks later my PSA was down to 103. 2 major surgeries and 4 month regimen of chemo got my PSA to 0 and all of the cancer gone. Now I am 3 years removed from my last surgery my PSA remains undetectable. I have 2 PET scans every 6 months including the C-11 Choline PET scan (which Dr. Kwon was instrumental in developing, is the best scan available to detect prostate cancer early AND is currently the only place in the US you can get it is Mayo Clinic Rochester). I am cancer free today, on no meds, am working full time and can do anything with no restrictions because of Dr. Kwon & The Mayo Clinic!!!! No one else thought I had a chance.

So my advice to you is if possible get in to see Dr. Kwon (Urology Dept., Mayo Clinic Rochester). Tell him Paul Dickie sent you if you have trouble getting in. IMHO and that of many others that I have met in the 5+ years I have been getting treated by Dr. Kwon, he is the smartest man on the planet when it comes to prostate cancer.

If you want detailed information from me regarding my experience you can private message me on the page I mentioned earlier in this post. All my best to all of you!!! Keep up a POSITIVE Attitude, Surround yourself with supportive, positive praying people, plan your future (what are you going to do when its over), get great doctoring and develop a close personal relationship with Jesus. Those are my tips to almost guarantee success. Keep in touch.

Paul Dickie | @BuckyFestoon | Apr 7, 2016

In reply to @giddyup1 "HI, I just found out today I have prostate cancer. My PSA is 175.I am really..." + (show)

See the post I wrote to you below!!! Paul Dickie @BuckyFestoon

Paul Dickie | @BuckyFestoon | Apr 7, 2016

In reply to @hamhock "My prostate cancer has reoccurred after having seed implants as indicated by a rising PSA. I..." + (show)

See my post. Paul Dickie @BuckyFestoon

Marky | @giddyup1 | Apr 7, 2016

In reply to @giddyup1 "HI, I just found out today I have prostate cancer. My PSA is 175.I am really..." + (show)

Hi my psa was 175 in August 2016.Its now 253 in March. I am a little scare.

Marky | @giddyup1 | Apr 7, 2016

In reply to @BuckyFestoon "To: @robertjohn @hamhock @giddyup1 In July of 2011 my PSA was over 25,000 (you read that..." + (show)

@BuckyFestoon

To: @robertjohn @hamhock @giddyup1

Jump to this post

Hi thank you for your email. I have prostate cancer and it spread thru out my body. My psa is 253.They started me on hormone treatments. I go to the VA Hospital because I have no health insurance. They are not giving me much hope.

Paul Dickie | @BuckyFestoon | Apr 8, 2016

Marky -

Three questions:
1. What hormone treatment(s) are you on? Lupron, Firmagon, Casodex (bicalutamide)?
2. When did you start on them?
3. Have they determined whether it is contained in the prostate or has spread?

One comment: Most Dr's aren't in the business of giving you hope!!! They have seen a lot and though they mean well are going to be realists based on what they know (or think they know). You are going to have to find your somewhere else and get enough of it to get you past any negativity you get bombarded with.

Again my tips for the best chance for a positive outcome are:
1. Keep up a POSITIVE Attitude. For example focus on positive stuff, don't read a lot about prostate cancer and the side effects from the drugs. Don't worry about stuff you have no control over, just control what you can a day at a time.
2. Surround yourself with supportive, positive praying people
3. Plan your future (what are you going to do when its over). The plan for your future will refocus your thinking beyond your current situation and turn it to positive. For example if you like to travel plan the trip of a lifetime for sometime in the future.
4. Get the best doctoring you can
5. Develop a close personal relationship with Jesus.

All my best and keep in touch.