Looking for success stories
Unfortunately, like most discussion boards, I find the majority of posts here are about the problems we are all having and about looking for answers to resolve those problems. It's perfectly natural. We are all looking for answers, myself included. Once people feel their problems have been solved, they stop coming to the boards. So, when you read boards like this, it can sometimes appear that all is doom and gloom. You rarely see people posting about amazing success stories. I think that's just human nature. I'm into cars, and participate in several forums for various vehicles I own. Again, the vast majority of posts are from people posting about their issues with their vehicles. People never seem to come to the forums to post about how their vehicle is trouble free and causing them no problems. We all like to complain, right?
Yet, I know there are a ton of great success stories out there. I have friends and co workers that have dealt with prostate cancer and been through surgery or radiation and had great success with both treatment and recovery from side effects.
I know I, for one, would really love to read a bunch of success stories as a way to give me hope for the future and confidence that I can beat this cancer and go on with great quality of life.
I am currently almost 4 weeks out from my robotic prostatectomy. I had a great surgeon up in Boston, at Brigham and Women's. He was able to save both nerve bundles. I've posted, in detail, my circumstances, in another thread. My post surgery pathology report was decent. Had some focal extension but my margins were clear as well as the seminal vesicles, bladder neck and lymph nodes all clear. I was a Gleason 7 (3+4). Previously Gleason 6 upon biopsy but intraductal carcinoma was found and decipher score came back as high risk, hence the surgery. PET scan did not show any metastasis.
I feel good and will be off to the gym shortly, to walk on the treadmill and maybe some very light weight machines. Continence has been great. Dry during the day with spotty leakage at night so far. Definitely manageable. Erectile function....eh...way too early to tell. I'm on twice weekly 10mg Cialis. I have had some partial nocturnal erections. I'm planning on purchasing a vacuum device for therapy. Of course, none of that will matter if the cancer is not gone. I have my first PSA test on Jan 16th and follow up with my surgeon on the 17th. I'm praying for good results.
So, I'm asking for those of you that have had great results, whatever treatment you chose, to post your stories and give us all hope that life can go on and that we can overcome these side effects. I think we can all use some good news.
Comments
-
Yes great i agree successs stories my wife’s uncle who is now 85 years old came up with prostate cancer when he was in his late 30s so we’re talking over 45 years ago. He went to Stanford and he had seeds put in. He’s 85 years old and kicking in in great health, another coworker 52 went in and had surgery had a lot of complications but five years in cancer free another coworker older guy 72 went in for surgery. Gave him radiation just to make sure that was 6 years he is now 78 and he still working no problem I just saw another coworker. He was out for two weeks came back and I said where you been said oh I have a prostate removed I had prostate cancer no big deal he actually laughed about walking around the neighborhood, holding the Foley neighbor asked what’s that, and he told him, and he goes here you want taste lol it’s only been a month or two, but he was back to working two weeks. No problem …. I just think people deal with it differently and unfortunately, most of us that are on this form have a bit of anxiety towards it and that’s OK we’re helping each other but I look around and it gives me hope a lot of people that are just fine after having it and that I’m gonna be OK ..
0 -
I did about 18 months AS, had RALP Feb 2022. So far, PSA undetectable, 100% continent and minimal ED fixed with occasional Vitamin V. Some people have it much worse and still consider their own situation as a success story. A positive outlook goes a long way in defining what is successful.
1 -
My take on this is that this Forum is for folks with PCa to discuss their issues, receive valuable information, learn from this information, and along with their medical providers, chart the best PCa journeys available to them. If I want feel good stuff, I would go to Facebook. I'm not a Negative Nelly, just being realistic, as I see it.
Here is the success story: We are all still alive and remain on our PCa journeys, while maintaining the best quality of life achievable. 13 years of the PCa journey for me, and I'm still here.
1 -
My story is summarized under Profile. Yes, that 'section' is hard to find on this forum (need to go to Account and Privacy Settings).
The main point is that I am living a pretty normal life for an older guy originally (ten years ago) diagnosed with multiple Gleason 9 (4+5) lesions.
0 -
I agree that knowing our complete experiences, both good and bad, are helpful to those that are following this forum. Folks do need to know that while both surgery and radiation can have significant downsides; both can also be very positive outcomes. Each of us is so different, no journey will be exactly the same. I too have read the negative comments about both surgery and radiation. If folks do not do the same level of research that some of us have, they could be incorrectly influence by these comments.
My biopsy was a Gleason 8 (4+4) that was changed to Gleason 8 (5+3) based on the post surgery pathology on the prostrate. The tumor on the left side was identified by MRI (Pirads 4); found by biopsy; and confirmed by PMSA PET. The pathology report on my prostrate found a second very small tumor (2mm x 1mm) on the right side that no scan nor biopsy detected.
To me, the "success story" is I acted fast once my PCP recommended a urologist because my PSA was going up. I'm very blessed that the pathology conformed that the cancer was contained in my prostrate. My first PSA is on January 16th which I pray for a good result.
Prior to my surgery I read a comment in this forum that stated "good doctor + good facility = good results". I can only speak to my surgery and experience, but I can confirm this statement is true for me. My 4 - 4.5 hour surgery was performed at MD Anderson in Houston. My surgery was December 7 and for me, the results were the best I could hope for. I have never been incontinent. On one of my daily walks I had to "stress" the hold system until I got back home and it held for the remaining mile I needed to walk with no leaks. As far as ED resolving, I'm very hopeful since it seems to be. MDA has a urologist that specializes in sexual dysfunction. Met with him last week. My wife, who has been an outstanding nurse and support to me, and I followed his advice. Best way to tactfully state it is that both my wife and I were surprised / shocked at the excited size this morning. It's almost back to normal.
I do not think I am an outlier; MDA will hook you up with a survivor if you want to. I have spoken to him a few times. He had the same surgeon as I did with the same results. It all comes back to do your research including the surgeon or radiologist you are going to use. Find that good surgeon or radiologist where ever you live. While understanding the general statistics from the various PCa sources is good; ask them about their patient statistics/outcomes.
I know that the cancer can still be lurking in me. As I have stated before, my feeling is not to complain about the cards I have been dealt; but play the hell out of the ones I have.
I cannot say I'm a success story yet; but I wanted to share to others that may be reading this thread as they begin their journey so they too have hope of beating or at least keeping this beast in check.
1 -
Hi,
I guess sometimes a higher source is looking out for you. Had my cancer diagnosed and the biopsy showed 3+4. Had my Prostate removed by Robotic surgery back in 2014, the autopsy of my Prostate detected plural neural invasion. I think if I would have waited much longer my cancer would have escaped big time, so fast forward to 2024 and I have measured less than .1mg on the super sensitive test. Still drip a drop once in a while and my ED is not too bad, still have a useable member. In my opinion not bad sacrifices if I stay in remission. Review the data with your medical professionals chart a course, and get it done. Learn to live with the results and if needed correct the discrepancy from other treatments. Life's too short for coulda,shoulda,woulda.
Dave 3+4
1 -
@Clevelandguy those are great results for you. I do have to say "thank-you". It was you and others in this forum that helped me get started on this journey that led to where and how to focus the research for me. Reading the posts as well as reading the various links provided, as well as our own research helped us decide on the treatment I felt was best for me; as well as, think of focused questions I wanted answers to regarding surgery (incontinence, ED, penile shortening). When I met with my surgeon at MD Anderson one of the questions I asked was "how have you improved the operation at MD Anderson". He provided a great response outlining several improvements. Specifically in the context of incontinence he mentioned how he sutures a large vein complex under the pubovesical ligaments and anchor them to the pubic bone. This keeps the dorsal vein (?) ligation tight and minimizes trauma to the urinary control muscles. Sorry I may not have all of the correct medical words he used. My wife is fantastic and an excellent note taker but we did miss a few of the medical terms. When I ask about the results his patients experienced he responded that recovery of urinary function occurs in >98% of the patients using a loose definition (dry to mild/occasional stress incontinence) and 85% if using a stricter definition. In small percentage of cases; around 0.4% for my surgeon’s patients, long-term incontinence is severe needing a surgical correction such as a sling or sphincter. He was very open and I feel honest. My surgeon has performed thousands of RARPs. He still conducts research. To me, you need to find out as much as you can about the doctor treating you.
It is as you said, "good doctor + good facility = good results".
0 -
Hi DaveTX,
Glad that myself and others on this forum with a lot more knowledge than me can help folks navigate the disease and potential treatment paths. Kinda, and I said kinda make this whole disease seem a little less scary when you can review experiences from people who have already been down the road. 👍
Dave 3+4
0 -
I'm with @Josephg on this one - being alive and active is a success story in itself.
It's all about context.
We all know people close to us who have been run over by the proverbial bus, or taken their own lives, or have been cruelled by other things beyond their control. A former colleague of mine suffered a severe stroke at the age of 52 at the same time as I was recuperating from my RP and he has suffered every darn minute of his life ever since. He can barely talk. I got off easy.
To me, being diagnosed with prostate cancer nine years ago, having RP and follow-up SRT, experiencing biochemical recurrence, ending up incontinent, having corrective surgery for that, and now facing ADT, is a walk in the park. It's just a blip. I can still hop skip and jump and be a husband (sort of), father, grandfather, brother, son etc.
I feel successful!
2
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards