Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

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

Brian A and Georgia live in California, USA. He was 40 when he was diagnosed in November, 2015. His initial PSA was 3.90 ng/ml, his Gleason Score was 7a, and he was staged T2a. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

Four months before turning 40, I started getting frequent dull headaches accompanied by dizziness and equilibrium problems. After suffering for several weeks I finally reached my breaking point and visited the ER. The ER docs gave me pain meds and suggested I make an appointment with my primary to and investigate sinus infection. Primary doc prescribed antibiotics and then referred me to an ENT for further investigation. ENT doc conducted several labs/tests and referred me to neurologist. Neurologist diagnosed me with chronic cyclical migraine and prescribed tricyclic antidepressant to reduce frequency and hopefully "break the cycle." While I accepted the neurologist diagnosis I simultaneously began evaluating alternative therapies for headaches.

This brought me to an endocrinologist and naturopath, both suggesting clomid for hormone therapy with the hope that increasing my low testosterone would alleviate my headaches. Both ordered a PSA test before proceeding which initially measured 2.2, but despite being made aware I was taking propecia (Finasteride) for several years, they failed to realize the normalized PSA would have been closer to 4.4. I began taking the Clomid and simultaneously visited a urologist to investigate frequent urination and consider any potential correlations with headache. The urologist was the first to advise me of the elevated PSA and ordered a 4k score test which came back suggesting I had a 18% chance of having aggressive prostate cancer. Although my father had prostate surgery at age 51, I was rather shocked at the possible PCa diagnosis at age 40. I was then referred to UCSF for a 3T prostate MRI which found a clinically significant likely cancer lesion T2a. A week later I was back at UCSF having a prostate biopsy and several days later I learned that I had 8/18 cores test positive for cancer with Gleason scores of 3+4 and 3+3. My initial instinct was of a combination of fear and sincere gratitude at catching this disease and having an opportunity to treat and be cured. Within days I received a copy of the biopsy report and was then spooked to learn there were several cores with Perineural invasion present. Instantaneously I feared my aching legs were a sign of metastatic disease and my anxiety skyrocketed at the thought of leaving behind my beautiful pregnant wife and two young daughters.

After meeting with Dr. Carroll at UCSF and learning about the successful nerve sparing robotic assisted radical prostatectomy procedures pioneered and perfected at UCSF, my wife and I were confident this was the correct choice for our unique circumstances. To be thorough in our analysis we also met with Dr. Mack Roach at UCSF to learn more about radiation therapies available. We found Dr. Roach to be very informative wiht deep expertise that we would not hesitate to be treated by but ultimately decided that surgery gave me the greatest chance of a cure. Approximate 4 weeks later, yesterday morning, I underwent surgery. The UCSF team were incredible and have suggested the surgery went very well. They were able to complete a bilateral nerve sparing surgery and also remove the nearby lymph nodes as a cautionary measure despite no visual signs of lymphatic disease present. I was able to go home the next day with Foley catheter and some pain medication. I have a follow up appointment in 8 days to remove the catheter and review the pathology report. More to follow

UPDATED

January 2017

Today is Post Op day 15 (surgery day is not included). I am happy to share that I'm recovering from surgery better than I expected, but the last 15 days have been no walk in the park. After consulting with several members of the UCSF urologic surgical oncology team, the UCSF radiation team, several personal M.D. friends and a few prostate cancer survivors about treatment options, my wife and i decided the radical robotic assisted prostatectomy gave me the greatest chance of a cure. We came to understand that the patients outcome and level of success was directly correlated to the skill of the surgeon. With great confidence that Dr. Carroll at UCSF was among the nations most skilled surgeons having performed thousands of these procedures (and perfected the nerve sparing robotic surgery) and that should additional treatment be required (radiation or chemo), UCSF was where I wanted to be treated. Since surgery was scheduled within days of receiving the biopsy pathology results and prior to our pre-op follow up appointment with Dr. Carroll, my surgery was delayed for a week to allow the post biopsy inflammation to improve the surgical success factors. On 1/10/17, I showed up at the hospital as scheduled at 630am for 7:30am surgery, eager to begin this process. I was really impressed with everyone i came into contact with at UCSF and the efficiency I witnessed from check-in to surgery gave me further confidence i was at the right place. I was especially grateful that the surgical front desk staff went out of their way to treat my wife with compassion and offered to keep her comfortable and informed while I was in surgery. Thankfully she was allowed to wait with me inside the surgical waiting area as I laid on the hospital bed in gown and met each of the surgical team members one by one before they wheeled me back to the operating room. Honestly, I hardly remember being in the operating room for more than a few minutes before beginning a very comfortable sleep and then waking up in the recovery area with my wife and mother in law at my bedside and experiencing an incredible sensation to urinate. My wife explains that I repetitively told everyone within a short distance that "I needed to pee like a race horse". I guess i was a broken record, but I don't really remember much. Of course I was feeling the unfamiliar initial sensation of the catheter. Little did I know how well I would come to know life with a catheter. In a short while, I was wheeled up to the most beautiful private hospital room with large screen TV and views of the SF Bay Bridge. The nursing staff kept me very comfortable on IV pain meds and regularly came in to give me additional meds I took by mouth, juice/water to treat my severely dry mouth and empty the catheter bag. They also regularly came in and gave me shots to reduce the chances of blood clots but with all the pain meds I was on, and distracted by the gas pains, incision pain and soreness in my perineum area, the shots were a non issue. Surprisingly, by 12 noon the following day after taking a couple of successful walks down the hallway, I was discharged. The drive home from SF (full of pot holes) was pretty uncomfortable but i was happy to be in my own bed. The first couple days home continued to be a blur of occasional short walks through the house, small meals, emptying the catheter bag, and severe constipation. I would have paid big money just to let out a fart. Since the nursing staff advised me that the narcotic pain medication was constipating, I decided to stop those drugs immediately and relied on rotating ibuprofin and tylonal around the clock. Thankfully this led to my first bowel movement on post op day 2 and that was a defining moment in my recovery. As the gas pains lessened, I was able to move more and I think it is critical to get up a move around regularly. The majority of the first 9 days revolved around the catheter they sent me home with. Until the catheter was removed, there was not much more to share, just more of the same. Although I never thought it would come, post op day 9 was a great day. Having the catheter removed was amazing. I guess the removal was a little uncomfortable for a second but I was so ready to have it removed I never even noticed. Life after catheter removal was another defining moment in my recovery. This greatly improved my mobility and I began to feel better quickly. One of the scary aspects of having prostatectomy is the incidence of ED and incontinence. Surprisingly, I've had very little trouble with ED. In the 14 days following surgery I probably experienced 10 spontaneous erection without ED medication. I mentioned this to the surgical team and they cited my age and the success of the nerve sparing surgery with amniofix place on the nerve bundles during surgery. They had sent me home with ED meds and prescribed a small dosage to start the first week. I asked to delay that for the time being in fear of having the dreaded 4 hour erection mentioned on so many Viagra TV commercials. Unfortunately, ive not been so lucky with incontinence but I am making major improvements each day. The day I had the catheter out I had very little urinary control and today (5 or 6 days later) I am only using 2 pads per day for regular but slight leakage, especially if I laugh or cough.

The most important news I can share came yesterday when I received my final pathology results. Despite the cancer being higher grade and further along then expected, the cancer was completely contained in the gland with no positive margins and my lymph nodes are cancer free! Praise God! Thankfully i was able to discuss the negative findings with the doc by phone and come to realize that they become much less of an issue since the cancer was contained in the gland and the gland is removed. They also affirmed my decision to have surgery as I have good reason to hope this surgery was curative. My next follow up appointment is in early March (6-8 weeks post op) when I will follow up with the UCSF team and I remain hopeful my PSA will become undetectable. I will report back.

UPDATED

July 2017

Its been nearly 7 months since surgery. I'm happy to share that my 3 month and 6 month post-op PSA was undetectable. The genetic decipher test performed on the pathology did come back as high risk for recurrence and suggested I consider radiation. Dr. Carroll has ordered some additional information from the test and was optimistic that this may not be necessary. He will be introducing me to a radio-oncologist in any event and moved up my periodic PSA testing from 3 months to 2 months. I'm glad to be more vigilant.

I met with the nutritional consultant at UCSF and was encouraged to eat a plant based diet and virtually eliminate eggs from my diet. I was unaware that eating eggs was correlated to prostate cancer. I've made many positive changes to my diet, but still have a wicked sweet tooth.

I also met with a genetic counselor and had some extensive genetic cancer screening performed. As it turns out, I did have a genetic mutation (RAD50) but there is not a significant link to prostate cancer. There is a link to breast and ovarian cancer which is an advanced warning to my two daughters.

I'm certainly not so far away from this to be "looking back" yet, but to my surprise, I'm beginning to see how this could turn into something positive in my life someday. The sleepless nights worrying and severe anxiety that I've suffered, I wouldn't wish on anyone. But the clarity of what's most important and gratitude for moments of grace are re-shaping my heart. I hope to share more about this over time.

By the way, we just welcomed our third child (a son named after my deceased dad and father in law, John Mitchell). What a miracle to get pregnant before surgery and have a child 3 months post op! Praise God! I've got a lot of motivation to be healthy and vigilant.

UPDATED

May 2018

Wow. Its hard to believe its been 14 months since having surgery. Time is flying by and has never been so precious. The only words that come to mind right now are grace and gratitude. My anxiety has gone down and I'm so very blessed with a wonderful supportive wife and three amazing kids. Grace is 5, Ellie is 2 and John is 1 now. We recently traveled to Disneyland and had a lot of fun. It was especially great to spend so much time playing with my kids and to be able to hold and carry them on my sholders without difficulty. Im so greatful to have this time with them.

Since my surgery, I've had 6 labs to check my PSA every 2 months and every one of them have come back undetectable. Despite my faith in the Lord and knowing in my knower that I am in God's hands and that my fate is already predetermined, I still cant help myself but to get very nervous before each lab and find myself at times thinking about recurrance. The good news is that this is happening less and I'm spending more time in gratitude each day.

I should also mention my post-op symptoms have never been better. If you get me laughing hard I might have a small leak, but besides that all systems are working well. Praise God! And I will keep the men with PC and especially those recently diagnosed in my prayers. Let us find a cure for Cancer and keep fighting everyday!

UPDATED

September 2019

Here I am 32 months post op (radical robotic surgery) and 14 months since learning my PSA showed up at .019 in June 2018. After 12 months of monthly monitoring my PSA rose to 0.046. Some of the men reading this may understand how incredibly low that number is and it's not a mistyp. UCSF labs have an ultra sensitive test that picks up PSA above 0.015%. I believe most labs such detect PSA above 0.05%. Although I would have liked to get a psma pet scan to locate the cancerous cells, it is highly unlikely to detect anything when PSA is below 0.50%. I was given several choices including waiting until PSA increases to 0.50% and get a scan before any further treatmen, combine radiation and hormone therap, or do salvage radiation treatment only (I chose this). I have completed 18 of 40 treatments (7am five days a week for approximately eight weeks). Today is Sunday and I'm grateful for a couple days off to rest. I'm not sure if the radiation or waking up everyday at 5am (long days) are contributing more to my exhaustion. Three kids under 6 certainly contributes also (no complaint). I remain hopeful this salvage radiation therapy will Cure me (undetectable PSA) And that any/all side effects disappear over time.

That being said, the prostate cancer journey has been incredible and surreal. A psychological rollercoaster with surprisbig amounts of love and Grace sprinkled in with the stress and anxiety. fears of metastatic disease with every ache and pain. And lots of compassion from friends family and the medical community. The last month of radiation treatment has been particularly interesting. I've developed friendships with my doctors and nurses at the hospital, and other men on their own personal prostate cancer journey (so far at age 42 I'm still the youngest I've met). And there is a mysterious camaraderie I've come to appreciate. Don't get me wrong, no one would ever sign up to be a member of the club with C. But there are many members with and without C that are a blessing to us all.

Today I received an email notice that my story hadn't been updated in sometime and that it was being moved to a different status. Well, I'm going to re-commit to updating my story and I plan on this being an inspiration to other men going through their own pc journey. My thoughts and prayers go out to all of the men and their loved ones afflicted with this disease. May God bring us a cure soon!

UPDATED

May 2020

A friend was recently diagnosed with pc and I had the opportunity to talk with him today. It reminded me how scary this diagnosis can be and how some of us are unaware of what it means to have prostate cancer and how are lives will forever change. it's scary. The mental health challenges are very real. Remember how I felt in the early days of being diagnosed is what brought me back to YANA to share my update. These stories helped me then. I hope they are helping you now.

after having radical robotic prostatectomy my PSA returned after 18 months or so. By the grace of god I found myself in the care of Dr. Felix Feng at UCSF. Dr. Feng is chair of radio-oncology and one of the leading researchers to find a cure for prostate cancer. He was incredibly patient and caring. Best of all he recommend a course of action that turned out to be spot on. After completing 8 weeks of "salvage" radiation in July/Aug 2019, my PSA returned to undetectable. We are confident this means that the radiation was targeted correctly and I am cured. I will continue to be vigilant and get periodic PSA tests but I'm relieved to say the least. I am back to trail running and have lost 17lbs. The corona virus SIP has reawakened me to the importance of staying healthy and mitigating my comorbidity.

Brian's e-mail address is: baddington24 AT gmail.com (replace "AT" with "@")


RETURN TO INDEX : RETURN TO HOME PAGE LINKS