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This member is a YANA Mentor This is his Country or State Flag

Steve L and Susan live in Georgia, USA. He was 51 when he was diagnosed in January, 2017. His initial PSA was 151.00 ng/ml, his Gleason Score was 7b, and he was staged T2b. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

Physical 11/2016:

I went in for my 50 year physical with no issues whatsoever besides maybe a little "flow" issue which was really not even a concern. When asked about it I said, "Yes, maybe a slightly reduced flow and I get up once or twice a night to pee." A DRE was performed and she noted my prostate was enlarged. They did blood work for PSA. They recommended I start Flomax for the flow issues.

(Sidenote: I had a reaction right after I started the flomax... some type of immune response as I woke up in the middle of the night with flu like symptoms... chills/fever and could not get warm. It was like the worst hangover ever. I then got a case of shingles on my right calf area which lasted a few days. I called the office and told them I was discontinuing the flomax. Once the shingles went away, I started flomax again and no issues this time... Just a coincidence I guess but it scared the crap out of me.)

I received a call a few days later that my PSA (131) was extremely elevated and they set up a consult with a urologist for me. A few weeks later I saw the urologist. After going through all the questions/symptoms (everything is working, sex is good) he assumed this was just a case of prostatitus and put me on antibiotics for 2 weeks. New PSA after the antibiotics were done and now we're at PSA of 150. Time to get serious.

BIOPSY 1/2017: I had a prostate biopsy done in January of 2017 (this is the most civil war/caveman surgery/procedure you will ever have to endure). They stick an ultrasound device up your rectum (with a condom and gel on it) and use that to guide a spring loaded needle which grabs the biopsy samples from your prostate. I was wide awake with only some local anesthetic applied. I've heard different versions of this procedure with people having twilight anesthesia or being out completely. I would have preferred to be asleep or shot in the head prior to mine. I couldn't sit down for hours but I know this was a necessary procedure. It may have been the doctor and he just was not gentle at all. All of my samples came back positive for cancer so we were referred to a urologist who could perform the robotic radical prostatectomy.

3/2017 - Robotic Prostatectomy

Dr. Kozinn (Urologist Piedmont Atlanta) did my radical robotic prostatectomy. It lasted about twice as long as expected.

FINDINGS:
1. Extensive extracapsular extension involving bladder neck, nerve bundles.
2. Bilateral extended pelvic lymph node dissection performed.
3. Bladder neck sparing technique utilized.
4. Non-nerve sparing procedure due to what appeared to be gross cancer involvement.
5. Posterior prostate densely adherent to rectum.
6. Rectum able to be mobilized off of prostate without injury, confirmed by sigmoidoscopy.
7. Leak from posterior aspect of anastomosis on table.

Post surgery I was informed due to my advanced prostate cancer and the agressiveness of my tumors, I jumped from T2 to T4. We knew we would have chemo/radiation ahead most likely. One of my stiches ripped at the edge of the bladder neck so I had to keep my catheter for 30 days. Once my Catheter came out on March 31, I started LUPRON injections for hormone therapy. The 3 month injections you will feel for a few days. The first shot (1 month) really didn't hurt at all. So at this point I'm medically castrated and since my seminal vesicles were removed during surgery sex (well, anything involving my little fella anyway...) isn't really an option and it's definitely not my focus. Staying alive and beating my cancer is job 1 at this point.

PSA 4/2017: My first PSA since surgery came back at 5.23. From over 150 before surgery my wife and I feel this is a good place but according to the oncologist I was seeing it should be more like zero. He wants me to do a pet scan asap.

PET SCAN 5/2017: The PET scan was done on 5/3. This is quite fun... they tell you to drink as much water as possible the night before and day of test which I did. Then you lay in the tube for 40-60 minutes. At 24 minutes I have to pee so bad it feels like a knife in my bladder... I decide I'm going to have to utilize the Depends brief that I'm wearing... at least a little bit to take the edge off. Otherwise we have to start the test over from the beginning. NOPE.

RESULTS 5/2017: The Oncologist wants to see us asap to discuss results. Obviously not good news or we'd have been given the all clear over the phone I'm thinking. My hunch was correct. He tells me I now have metastasis in the bone in at least 3 places. My skull, a rib and my pelvic area. His recommendation to us is to start early chemotherapy (6 doses - 3 week intervals) over the next 4-5 months and IF I do that... I may add 2-3 years to my life. Best guess is I have ~5 years with the early chemotherapy. GULP. I'm only 51 years old. The average age of guys dealing with prostate cancer diagnosis is 68. What is going on? We need to make a decision but not today...

SECOND OPINIONS:

I'm a believer in Jesus Christ. A "Christian" ... with a strong faith and knowledge that God is real from a very young age. God has never let me down or failed me. In hard times, I've always seen some sort of sign or gotten an answer to let me know which way I need to move.

We have had people praying for me since the initial diagnosis. Now stuff is getting REAL. Really, Really, REAL. I could not be here in a few years and I have a beautiful wife, loving family and brand new granddaughter etc... I have a LOT to live for! We decide we can do better than 5 years with God's help.

I started reaching out to Cancer Treatment Center of America and googling other options or doctors who are treating advanced prostate cancer with alternative methods or new technologies. Also looking at Natural/Homeopathic treatments... A cure feels out of the question at this point but surely there must be some treatments which will help and extend my life.

My neighbor is in his 70s and has prostate cancer... I know he goes to the Mayo Clinic in MN occasionally. Something has been chewing at me to talk to him more in depth but we normally only wave across the driveway or as we pass each other on the street. My brother also has a friend who was treated at the Mayo Clinic and texts me his doctors name. Tells me I need to see this guy and to email him with my case as he is treating a lot of guys with advanced prostate cancer. I googled him and it sounds like it's definitely worth the time. This guy is using a new scanner that his own team developed. The solution has a 15 minute lifespan... this is like scifi stuff!

I drafted up a short email that detailed my surgery dates/PSA scores etc. I prayed before I hit send that he would see it and hopefully I could hear from him. I woke up the next morning to an email from him asking his staff to get me in asap as he feels I could benefit from his scanner and their lab/treatments. Then I danced! :)

THERE IS STILL HOPE: So now we have an appointment in June to see Dr. Eugene Kwon at the Mayo Clinic in Rochester, MN. I have hope for the first time in weeks that I may be here for a while. He is using outside the box thinking and combining new treatments with old tried and true treatments and his new imaging / C11 Choline PET scan with great results. Many men with Oligometastatic Prostate cancer have PSA of zero and no detectable cancer after a few years. I really believe my answer to all those prayers is the work this man and his team are doing.

CTCA: My initial feeling about Cancer Treatment Center of America is that it's a for profit hospital (nothing wrong with that) that is very interested in your insurance dollars. I have great insurance and was whisked in... however when I told them that I was going to Mayo first to talk with Dr. Kwon and then I would use them as needed as my local "team", I received a somewhat scathing email back about why I needed to see their team and get my diagnosis from them asap. I am sure they do amazing work. The facility looks amazing and I won't judge them since I have never stepped foot inside but I got a very strong almost cultish vibe that once you get inside... good luck getting out. Unless your insurance won't pay for it ...

That's my story... to this point. We meet with Dr. Eugene Kwon in a few weeks in MN. I am excited and hopeful that he will be able to add to my diagnosis and add some years on to my life. I will post once we have some news/results. Good Luck to you if you're reading this and don't be afraid to advocate for yourself and go get some second opinions! There may be hope or a new treatment tomorrow that is not there today... watch this video to see where my hope came from. God Bless!

https://www.youtube.com/watch?v=NkqizmvqJPo

UPDATED

June 2017

Visited the Mayo Clinic in Rochester, MN and spoke with Urologist Dr. Eugene Kwon. He advised my PSA is still going down (currently 0.45) from 5.2 at the end of April and the Hormone treatments are doing what they are supposed to. He wants to stop hormone treatments and as soon as the PSA starts to rise, we will return to Mayo to get a C11 PET scan, MRI, etc to see where my metastasis are and start treating them with a combination of whatever is required (chemo, radiation, hormone...). I'm glad we got a second opinion and went to see Dr. Kwon. Thank God we did or I'd be pouring poison into my veins right now via chemotherapy. So now we are in a watchful waiting position and will be doing PSA tests monthly until the PSA starts to rise again. The Mayo clinic is absolutely amazing. The campus is incredible and the doctors and nurses there are absolutely the best. Rochester, MN is a beautiful city and an easy drive from the big airport at Minneapolis/St. Paul. I highly recommend it if you have the means to get there. It was not that difficult to get an appointment. If it seems like you've run out of options, go see Dr. Kwon just to make sure you've played all of your cards!

UPDATED

August 2017

My latest PSA shows it continues to fall. 0.09 as of 7/31. Since we are stopping Lupron and 7/31 was to be the date of my next injection, I expect we'll see the PSA rise in the next couple of months. I'm just happy I got a second opinion and have not been doing chemo for the last 8 weeks as was recommended. It may still be in my future but for now my PSA is low and I feel great. We continue to actively monitor the PSA monthly and pray a lot!

UPDATED

November 2017

So we saw Dr. Kwon again Oct 17-19 and did labs, MRI w/coil and C11 Choline Pet Scan. Scans showed the PC was only in the prostate/surgical area at this point and recommendation was to start 6 rounds of Taxotere Chemotherapy asap and get back on the Lupron as well. My PSA was 2.4 on 10/3. It jumped to 9.1 on 10/17 at Mayo and was 18.1 on 11/3 when I started chemo so it is doubling rapidly. It's actually a little concerning how quickly it is rising... Hoping the chemo and Lupron start doing their thing quickly. Outside of fatigue, no bad side effects at this point. I can feel the joint/bone aches that I had previously with the Lupron but nothing slowing me down so much I can't work or play drums etc... If we stay on schedule, I'll finish up chemo late Feb. and return to Mayo for additional scans.

Steve's e-mail address is: steven.lingo AT siriusxm.com (replace "AT" with "@")


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