B. SURVIVOR TREATMENT STORY DECISIONS

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TREATMENT SURGERY

 

TREATMENT STORIES - YOUTUBE

• What happens after a prostate cancer diagnosis?

• Prostate Cancer Survivor Stories

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TREATMENT ROBOTIC SURGERY:

• I’m in pretty good shape. Had RP in 2018. Successful. Good recovery. Everything works. But cells at the margins…. So, some fear. My doctor uses the high sensitivity PSA test and I was <0.006 for 18 months. Then something….0.03….Then it has bounced around…0.01, 0.009, 0.02, < 0.014, then 0.03. It’s all over the place, but always below 0.05…..My doctor thinks it’s nothing to worry about. I’ve gotten other options- radiologist and oncologist. They both say it could be cancer, but that the numbers may remain low forever….. My biggest enemy is anxiety, stress…. worry. Which are all common themes with people here. I think I’m just complaining…. Every test takes me to a dark place in my mind and affects my life and the lives of people around me. If my doctor used the standard psa test I would have simply come up as undetectable since RP, and would have been spared so much worry. I’m not sure why some docs use the sensitive test if they don’t do anything when they see really low numbers. What’s the point?! I imagine, in some cases, they do take action, depending on the patient…. Still, I wish I could stop all the worry…. It’s such a waste. …. I’m already worried about my next test, which is months away.

• Gleason 7 PSA 8.2 Upon diagnosis I immediately went to the internet and Facebook to find the answers I needed to make me feel comfortable. Just like you I found nothing but doom and gloom, causing me to consistently challenge my choice. I travel a lot for work and didn't want to have to deal with incontinence and being a man didn't want to be impotent, so spent a lot of time going back and forth on surgery, active surveillance, or radiation. I eventually decided on surgery as my treatment choice. The days leading up to my surgery I contemplated Active Surveillance and was ready to cancel surgery. Family said just get it out and we will support you, but it is my choice and I needed to own it. I went through with surgery and haven't second guessed my decision. I was lucky in that I didn't have any issues with incontinence nor impotency immediately following surgery. To be honest I was having erections while catheter still in and even had sex with wife two days after catheter removal. I am not putting this out there to brag, but to highlight that everyone's experience is different. I just turned 50 when I was diagnosed PSA was 8.2 and Gleason was 4+3=7 in three samples. Surgery in both my surgeon and my opinion was deemed successful. Removed a few nerves on the left side and right side intact with no cancer detected in the margins or ureatha. Post-surgery I deal with a bout of depression but have dealt with it through coaching and medication. In my mind I am not the same person I was before surgery in my eyes, but to my family I am alive and still very much a part of their lives and I couldn't be any happier with my choice.

• I want to share that we are all different and this isn't a one size fits all cancer. I am not in shape and I didn't have a healthy lifestyle, but in my mind came out great. Select the treatment and medical team that you and your caregivers feel most comfortable with.

• Surgery Gleason 6: I developed Left groin pain somewhere around 4 - 5 months post op. I exercise a lot and think I may have overdone it! Of interest, I also developed a swollen lymph node in my left inguinal area. I was very concerned but my urologist expressed very little concern at my 6 month post op check up. He "checked" me for an inguinal hernia. Walking up hills became particularly bothersome and I would have to frequently stop for about 10 seconds and then continue walking. This eventually resolved and has never resurfaced. Not sure what caused it?!?  Be sure to discuss with your MD.

• Surgery Gleason 8: My dad (just turned 77, very healthy) had raised PSA levels, after months of antibiotics and being told it was nothing to worry about (a whole other topic) he insisted on a biopsy. Prostate Cancer with a Gleason score of 8 was found. A radical prostatectomy was performed 6 weeks later and the biopsy showed a Gleason score of 9 (not sure if 1st biopsy was wrong or if it got worse). His first follow up found microscopic amounts of cancer in his bladder and seminal vesicles so we were told radiation would be the next step but we needed to wait to get a new PSA test for accurate results. He got the results today, we were expecting a 0.2 but the result was 2.8. They began hormone therapy immediately and will have radiation treatments 5 times a week for 8 weeks beginning in a few weeks.

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TREATMENT ROBOTIC SURGERY:

• 22 years ago today, Aug 30, 1999, I had my prostatectomy surgery. I had just turned 48. I was diagnosed July 7th with PSA 4.4. It was detected by my family physician during a physical exam dre (my first in 7 years) who sent me to a urologist for biopsy. My first thoughts were that I would not grow old with my wife - we celebrate our 45th wedding anniversary in a couple months; I would not see my children grow up or see grandchildren - our children are grown and we have 6 wonderful grandchildren. My PSA has remained undetected requiring no further treatment. However, several years after surgery, caused by numerous urinary tract infections, due to incontinence, I developed phimosis (tightening of the foreskin) requiring circumcision prior to having a sling installed, in 2012, to correct the incontinence. Within a year the sling broke requiring its removal. In 2014 I had surgery to install an AMS700CX penile implant - wish I had done it years before. In 2015 I had an AMS800 Artificial Urinary Sphincter installed which has made the world of difference. I no longer have to go out loaded down with pads in case of not getting to a bathroom soon enough or checking a chair every time I got up hoping I hadn't left a wet spot. At the time of my surgery, I joined a local prostate cancer support group and attended occasionally but I was 48 and they were a bunch of 'old guys' so I soon stopped attending - that was a mistake. A few years ago I went back to the group and have become involved in the leadership. I am not there so much for myself but for the 'new' guys who come with questions and fear. I encourage each of you if possible to connect with a local support group or start one. Our group is open to prostate cancer survivors and their families as well as anyone looking for information and support. I joined this fb group a few years ago to learn from you in order to help others as there has been so much progress in the past 22 years. I have recommended this site to several people and see them encouraging others. We must each make our decisions as to the path we take and be comfortable with our decisions. I will soon be taking a break from this site but will check in from time to time. Keep up the good work and be patient with each other as we each face a different path. Each day I thank God for the time he has given me. I don't know what the future holds but I know who holds the future.

• Robotic Surgery Gleason 7: I had no real problems after surgery. Hospital stay one night. Catheter for one week. One day of diapers after catheter removed.  Full standing pee control after one day. My surgery was on Tuesday, on Saturday attended a soccer game with catheter attached to my leg.

 

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COMBINATION TREATMENTS

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IMMUNOTHERAY – RADIATION – CHEMO:​

• GIVEN 9 MONTHS TO LIVE - This is my story and it is a good one

at 50, I had severe back pain went in for a physical.  Results stage 4 prostate cancer,  Gleason 5+5 on all 12 bioposy Psa 3519.  Yes 3519!!! I WAS given 9 months to live, that was may 2017. Now my psa undectable!! Thanks be to God, it’s been a struggle with chemo, radiation, immunotherapy, lupron and xgeva! But I am doing good, still long way to go.

• My story, in 2014, I had a cancerous polyp removed from my throat. In 2015, I had a couple of basil cell carcinomas removed from my face. In 2017, I was diagnosed with t3b prostate cancer Gleason 10. I had a robotic prostatectomy and started hormone therapy, during imaging for salvage radiation NSCLC was detected in my upper left lobe. We switched gears and attacked the stage 3a NSCLC with 8 chemo, 25 radiation sessions and an upper left lobectomy. I was given imfinzi for 6 months after surgery just in case. I developed pnuemonitis, and the lung cancer progressed to stage 4 with mets along the lobectomy scar, my back, medistinial lymph nodes, and in my neck above the clavicle. While on immunotherapy, we had paused the hormone therapy to see if chemo and immunotherapies might have had some impact on the prostate cancer. It roared back and went to my bones in weeks. Now stage 4 with mets to both hips, the sacrum, l3 of my spine and my left femur. I was in real trouble 18 months after my initial diagnosis. We started salvage chemo including keytruda, did 5 rounds of salvage radiation, and restarted hormone therapy with lupron and xtandi. I'm currently also doing maintenance chemo for the lung cancer with pemetrexed. All scans have been clear two years now, but pain from the bone mets is persistent as are breathing issues that have impacted my mobility and stamina. Despite this I've remained employed full time, and am quite happy to see my loved ones every day. Chemo session #47 is on Tuesday and is basically an every three week appointment for life. Hopefully, that will be a few years yet.

• I have had prostate cancer for just over a year and recently was told that it has spread to my abdominal lymph nodes(3). To give you a general picture of what I am going thru, when I finished radiation therapy 8 months ago, my PSA had gone down from 16.2(when they diagnosed me) to 0.05. Today, it is at 910. To say that I am shocked is a huge understatement. I am very scared and terribly depressed. I recently told my Oncologist that I was going to take an active role in my cancer treatment. That means, I now am pursuing additional modalities, (immunotherapy and possibly clinical trials) I am also seeing a nutritionist, chiropractor, and an Acupuncturist. Both of these are to treat the pain. I was told by my nutritionist to stop all dairy, because I have a lactose allergy. Since I have done this, I have felt much less fatigue.

IMMUNOTHERAPY:

Prostate Cancer Immunotherapy Stories   https://www.youtube.com/watch?v=uaa3RUVfTOg

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ACTIVE SURVEILLANCE- PROTON BEAM RADIATION:

• My Active Surveillance was 6+ years. My Gleason was 6.4 and stayed steady during that time. Once it started rising I had Proton Beam Therapy.

• My initial decision when I was first diagnosed (March 2012) was active surveillance (PSA 4.0; Gleason 6(3+3). I was on active surveillance for 8 years (giving me the time to do all the research I needed.) No need for active treatment unless it’s necessary. Eventually, my numbers (PSA, PI-RADS, Gleason) did start heading in the wrong direction. By then, I had narrowed all the choices down to just one - proton beam radiation treatments w/ADT - which I had during April-May 2021. Have had no significant side-effects from the proton beam radiation treatments. Having heard about possible side effects of ADT, I started on an exercise program (strength and cardio) a few months prior to the first injection. (Here is an informative video from the 2020 PCRI conference about ADT and the physical benefits of exercise:

• Side-effects of the ADT have been minor - mild hot flashes and muscle atrophy. That’s it.  https://m.youtube.com/watch?v=YE61HSAsFb0)

• Gleason 4+3 and had Proton Therapy 8 years ago. Zero side effects and my PSA is down to .43

 

ROBOTIC PROSTATECTOMY-HORMONE-RADIATION:

• Age at diagnosis: 77 Gleason Score:8   Treatment Type: Surgery - Hormone – Radiation I felt healthy, but then found out I had a raised PSA level. After months of antibiotics and being told it was nothing to worry about (a whole other topic) the doctor insisted on a biopsy. Prostate Cancer with a Gleason score of 8 was found. A radical prostatectomy was performed 6 weeks later. At my first check up the PSA was 2.8, then microscopic amounts of cancer were found in my bladder and seminal vesicles. They began hormone therapy immediately and had radiation treatments 5 times a week for 8 week The catheter removed two weeks after surgery. I had already bought in a large supply of incontinence pads before the catheter was removed. The immediate effect of removal was that I couldn't pee at all and the hospital kept me waiting around (drinking coffee!) until I had actually managed to pass some water. After that, all my signals were mixed up and I had no idea whether I needed to go or not.  That night I didn't get much sleep.  Eventually, my body reassociated the signals from the bladder with being full or empty and I was no longer running to the loo only to find there was nothing to pass. I was surprised (but in hindsight it was obvious) to find that I was passing a lot of blood clots with my urine. This continued for several months. Also my penis developed a massive bruise which wasn't painful.  A colleague who'd been through this earlier warned me of this "Purple Ronnie" stage.  As instructed, I did the pelvic floor exercises several times every day. At this stage, I cut out all caffeine and went to de-caf tea and coffee. I stuck with this for about 8 months and then went back to the caffeinated versions. For the first month, although I could control when I wanted to go, any movement or cough or sneeze would release some urine into the pad.  It was a little better lying down, but I still had to wear a pad 24/7 except in the shower.  After about three months, the amount of leakage reduced considerably and I was able to stop using the full size pads and instead buy the much thinner Always Ultra pads instead. By the time six months was up, I was reliably 99.99% continent and leak free, so I stopped all pads; however I carried spare undies and a few spare pads in my briefcase. I only had one accident when I sneezed, but I was right outside a toilet and it wasn't a major incident. After 8 months, I was confident enough to go on a day trip by train, wearing no pads, but still carrying some spares. I made sure that I emptied my bladder every 2-3 hours, just to avoid any build up of pressure. I still kept some precautions when I was sleeping, although I never had any accidents in bed. After a year, I gave up on all precautions and just went on as before.  Since then I've had a couple of very minor accidents, losing no more than a drop of urine each time.  Over the years I've kept up with the Pelvic Floor exercises and the number of these small accidents has dropped to almost zero - in fact, I can't remember the last one. So, really it was a case of continual small improvements over a 6-8 month period. This, I think, is normal for most men.  After surgery, a lot of healing has to take place, and I think that you shouldn't expect much improvement until you've stopped peeing out blood clots. I suggest you start now (before surgery) with the Pelvic Floor exercises, and continue with them for life. One further hint.  When you come home from surgery, you' be given an overnight catheter bag. PUT THIS IN A BUCKET.  Almost everybody forgets to close up all the little valves at some time, and if you get it wrong you end up with a carpet full of **** as you sleep!  It nearly happened to me, but fortunately my bag was in a bucket, and it didn't leak onto the floor. You should also expect to be very very tired after surgery. For two weeks I would wake up... shower, and have breakfast then crawl back into bed until lunchtime. After lunch I could normally watch about an hour of TV, then crawl back into bed again and kip until about 6 pm.  By 10 pm I was ready to go to bed and sleep right through to 8 am the next morning.

 

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SURGERY and RADIATION:

 

Surgery or Radiotherapy​   https://www.youtube.com/watch?v=CAmOAeRQ0Ps

 

• Age 44: Good evening. I have spent the day trying to decide if I was going to make a post on here and decided maybe I can relate to or maybe help someone else. Sorry for a long post but here goes........ I’m now 45 back in aug of 20 I went to my family doctor for help with wanting to lose some weight. He said let’s run blood work and we will go from there. I got the call a few days later saying my psa levels were high and he was referring me to a urologist. Upon my first visit he says let’s run some more blood work which come back higher than my first test approx a month before Dr says I fell like we need to do a biopsy so the fun began. Come to find out of the 12 biopsy’s 8 show cancer and a 9 and above on Gleeson score. Big red flag dr says wow I have never seen a 44 yr old man with this high of numbers we need to do surgery so I say ok scared to death and have the robot surgery. Well things seem to go well and he tells me that initially cancer was contained to the prostate so things should be great going forward. I will say being 44 years old my biggest fear other than death was not being able to have an erection after surgery scared the death out of me 30 days after things downstairs started working doctor was impressed said he never seen anyone have that come back that fast mark that as a plus. Incontinence has been a fing nightmare A horrible struggle for a man my age having to wear diapers. So at my 30 day mark I had my surgery on September 26 at my 30 day mark which approximately around late October I go in for bloodwork doctor calls me and says I want you to come back in for bloodwork I’m not happy with the numbers I seen and I’m afraid your blood got mixed up with somebody else’s I go into major panic mode thinking what the hell is he talking about. Re-have my blood done and I get the call that no one wants to get he says I can’t explain what is going on but your PSA levels are through the roof and I don’t know that I’ve seen this before so my wife contacts a cancer center close to us in St. Louis. We go and have a special pet scan done and come to find out that the cancer is in my lymph nodes on both sides of my pelvis and Some is by my rectum as well as in the area on the edge of where the prostate was which they say is normal sometimes I began hormone therapy approximately a month ago and will start radiation at around my six month mark from surgery reason being is cancer doctor and radiologist want my incontinence  To be at its best before radiation because that will possibly be all the better it will get after they do radiation so I will do hormone therapy for three years. Anyone having a similar situation  ? Not here for sympathy just wondering how many others have had prostate cancer go this direction I wish everyone the best of luck with whatever they’re going through and hope their journey has a positive outcome

 

SURGERY – HORMONAL - RADIATION:

• Age 77 Surgery-Hormone-radiation Gleason 8. I felt healthy, but then found I had a raised PSA level.  After months of antibiotics and being told it was nothing to worry about (a whole other topic) the doctor insisted on a biopsy. Prostate Cancer with a Gleason score of 8 was found. A radical prostatectomy was performed 6 weeks later. At my first check up the PSA was 2.8, then microscopic amounts of cancer were found in my bladder and seminal vesicles. They began hormone therapy immediately and will have radiation treatments 5 times a week for 8 weeks beginning in a few weeks.

 

 

RADIATION -  LUPRON – CHEMO:

 

• Age 59 Radiation-Gleason 10 When I was diagnosed in October 2014,  I had Stage 4 metastatic diagnosed with PC and given 6 months to live! Thankfully, that was 7 years ago! The cancer had spread to my spine. Since it had already spread to my bones there was no need to remove the prostate, hence no surgery I had 10 rounds of radiation on my spine and left femur, followed by 6 rounds of chemo. I have been getting Lupron injections since I was diagnosed.

 

• Radiation can be time consuming. You can look into a radiation process called "hypofractionation." This just means fewer treatments. Each one is more powerful than standard radiation, which can take 6 or 7 weeks. Hypofractionation can take perhaps only 5 treatments, and that might work for him. With that PSA, it is apparently a very serious case. He should seek aggressive treatment. Hormone therapy alone can slow the disease, but it does ultimately fail. If radiation was suggested, apparently the disease has not spread distantly, so it can be very helpful. All the "apparently" stuff is just my thinking, and making some assumptions, since the detail staging is not available. That would be very useful. In any event, he should try to find the best docs that he can get access to, and include a medical oncologist as well. Good luck on the journey.

 

• There are more choices than you list. My husband, 73, stage 2, Gleason 7, PSA 12, had 5 radiation treatments at a wonderful University cancer center. Follow up is in March, but they were confident that they got it, no organ damage. Very professional, very competent and accurate.

 

• I just saw my oncologist yesterday, three months after my last shot of Lupron and five months after radiation.  Less than .01, which is great, but the next blood test in three months will be the most important test.  I was a Gleason 8, Stage T3A.  Lucky to be alive. 

 

TREATMENT NON-SURGICAL

 

HORMONAL THERAPY:

• Age at diagnosis: 64    Current age 69     Treatment Type: Hormone Therapy

The radiation may have been partially responsible for the surgery I had to have for a fistula from my colon to my bladder. I was hospitalized and was close to sepsis. I then had to have a portion of my colon removed. I had had diverticulitis before the radiation treatments and believe that the radiation was partially responsible. Now two years after my hormone cancer treatment, I still have the side effects. Fatigue, I have to take Flomax, my penis seems smaller, I can have an erection but no sperm, my breasts are enlarged and I am now scheduled for a mammogram next week due to a small lump. Doesn’t seem to end. My boobs have gotten so large due to the Hormone Therapy. Just found there is a way to undo that.  Gynecomastia due to hormone therapy for advanced prostate cancer: a report of ten surgically treated cases and a review of treatment options.

 

• Hormone Treatment Study        https://www.ncbi.nlm.nih.gov/pubmed/1551098

• Hormone & Chemotherapy        https://www.youtube.com/watch?v=Yq1Rr3R6UsM

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SEEDS:

• Age at diagnosis: 69   Treatment Type: Seed Implant 4-9-19

PSA Score | Pre-Treatment: 2.1 to 4.2 to 5.2 over a 1.5 year period

PSA Score | Post Treatment: 1.02 to .27 over a 1year period

Gleason score: 7

• With my treatment having been the seeds being implanted, I was able to fly from Ohio to FL the day after surgery and I never needed to use a catheter. In a nutshell, I seem to be getting along well, with a reasonably quick recovery and continued improvement to “the new normal”.

 

RADIATION :     Radiation Therapy for PC

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

 

 

PROTON THERAPY:

 

• Finished 39 proton treatments 12/31/2018 at UF proton in Jacksonville FL started with PSA 9.4 Gleason (4+3)7 Had hormone shot 2 months before starting treatments another one half way through had ED for about 5 months after last shot last PSA 0.2 no more ED no side effects

• Highly recommend checking out proton therapy 73 years old

• Proton Therapy-Gleason 9, PSA 17 back in 2015. Treatment with Lupron to bring PSA down and reduce prostate size. Proton Therapy was finished May 2016. Prostate cancer recurrent as of April 1, 2021 PSA 2.1. Age 69 at treatment. Only side effects bladder urgency and rectal urgency, but can hold it still ok. On Flomax.. so urinary symptoms would probably be different if not taking that.

• I was all set for proton therapy with a Gleason 6 but a high-risk genome score. Decided to do more research because it would not take care of my BPH and would make my urinary retention worse till things settled down and then it would only come back to where it is now which is unacceptable. I think Proton therapy is great, I have read a lot about it. At some point I will probably come back to it after resolving my urinary retention issues.

 

RADIATION – LUPRON:

• 2013, Gleason 7-10 in 14 cores. 40 rounds of radiation and Lupron for 18 months. So far, PSA is under .20

 

 

CHEMOTHERAPY

• Hormone & Chemotherapy
  https://www.youtube.com/watch?v=Yq1Rr3R6UsM

 

 

CYBERKNIFE:

• I am seeing a new urologist. Very, very happy that I am. I learned a very important lesson. When it comes to your health, especially prostate cancer, YOU have to be your best advocate. No one is going to take care of you better than you. Lesson learned. Because of my age, PSA, and other factors surgery is not an option. So I am going with radiation therapy. Now to my understanding, and please correct me if I'm wrong. There are two types of therapy, one is similar to a biopsy except they inject a certain amount of radiation into the prostate effectively killing the cancer and the prostate. It requires an overnight stay in the hospital. The other is going in for treatment 5 days a week for 3 months. This treatment will also damage the surrounding organs. I would opt for the first treatment except that I live in Los Angeles. We are currently the hardest hit by Covid. The hospitals are at capacity and it will probably get worse before it gets better. I also have AIDS. These things combined my doctor is very reluctant to have me admitted to the hospital. Even just overnight. The chances of getting exposed to Covid are just too great. So do I go with plan B, 90 days of treatment with my kidneys, liver, etc being damaged, or do I wait it out for a month or so and hope that things get better and can go with plan A? I am really on the fence about this. It is not something that has to be decided today. I still need a bone scan, a cystoscopy, and a referral to a radiation oncologist

• My hubby was diagnosed early July 2021 at age 54. It's not easy! Research, research, research. Be your own advocate. Don't let any doctor push a treatment onto you that you are unsure of. His father died fairly quickly from a rare aggressive form of prostate cancer that spread quickly. So, of course we were scared to death. We live in a growing, but rural area and the only hospital is a joke. After his biopsy was done there the Urologist was very cold and callous. He said that my husband needed surgery immediately and had already set up an appointment in that hospital with an oncology surgeon. He too said there should be no other option than surgery for an active 54 year old man. After doing all the research I had extensive questions that he obviously didn't want to answer and didn't like the idea I knew my shit! We left. I immediately called a great teaching hospital and made appointments with 2 doctors there but there's actually a whole board of doctors that looks over everything which made me feel a lot better. My husband is still freaking out at this point thinking he needs surgery. I had told my husband about a radiation procedure called Cyberknife which is state of the art pinpoint size mri guided Lazer that only treats the cancer. It doesn't get off trajectory and cause injury to other parts of body. I had also read about spaceoar. Spaceoar is a protective gel ring inserted before any radiation (if you ask for it) and it goes between the prostate and rectum to protect the rectum during radiation. It's naturally absorbed by the body later on. You have this done one to two weeks prior to Cyberknife or whatever radiation you decide. Cyberknife is a stronger form of radiation in only 5 treatments compared to 15-40 with traditional radiation. The sickness is minimal and it has high ratings. He's not a candidate for brachy because his prostate is so swollen. That was our first choice until I found Cyberknife and researched the hell out of it. For now, we are doing Active Surveillance and he'll be checked every 3 months. And, at any given time if he feels he wants treatment it's our choice but right now we are waiting as he has a low score. His number one job right now is to quit smoking and he's been smoking since he was 12. I pray he can do it! There's so many options out there that will benefit cancer. Do extensive research. Write down any questions you guys have and make sure your doctor answers all those questions for you. 

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D. W. 
Age at diagnosis: 64
Gleason Score: 5
Treatment Type: Robotic Prostatectomu