Our journey and how we get there

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I haven't posted much but thought my words wouldn't hurt with those in here that walk down the same road I do every day. Not looking for sympathy as you all have troubles and wonder how the next day is going to turn out.

But feeling low, and need too enjoy some wildflowers, and a walk with a breeze behind me. Hey I'm ok, just think about all of you too.

Would like you hear about your journey. If you want

Boom

 

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Hi Boom,

I read your message last night, and I still remembered it this morning. I hope you did take that walk and enjoyed wildflowers and a breeze at your back. Thank you for thinking of the rest of us walking down the same road.

Best wishes,
April

 

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Hi Boom,

It does help to realize that others are walking down the same path and it is comforting to think of wildflowers on the side of the road, with a nice breeze to my back. Thanks for the image.

I have been fighting cancer since March 24th 2014 and thought after the robotic prostate surgery in August 2015 that I was done. Now I am in the middle of IMRT and Lupron salvage therapy. I just have stress incontinence now and am hoping it doesn't get worse with the next 20 treatments and hormone injections. The depression, malaise and mood swings are difficult and I had a bout of sciatica for the past 10 days which enhanced all the emotions. On the positive side, I have a medical problem that is treatable and am attempting to keep a positive attitude about the future. I hope you are doing well. Thanks, again, for the flowers! James

 

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Well, I am not at all familiar with the IMRT and Lupron salvage therapy; however, the emotions, incontinence, and the sciatica I have experienced and can relate.

You are absolutely right to view this challenge as a treatable medical condition and to "soldier on" with a positive attitude. One day at a time is the way. My brother in Denver and I (in NYC) were talking about how much we miss our Dad a few minutes ago. We remember him always saying: "When the going gets tough, the tough get going."

I hope this gets easier for you,
April

P.S. I wish a guy on this site would see your posting and give you encouragement.

 

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Thanks for the encouragement, April. I appreciate your Dad's quote. I miss my Dad too. It has been 26 years since his passing.
I appreciate you responding to my post. I am not looking for sympathy, but a guy who has been down this road with salvage therapy might provide some needed encouragement, as you said. Thanks, again, James

 

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Such kind people you are. Yes April closing one's eyes when your life gets overwhelming does help. And so glad you could feel that.
Yes knowing there is no hope for your incontinence other then deteriorating further makes it hard to find your way. I do have a wonderful caretaker that helps me see the way some days.

James oh yes, its hard for you right now, can understand how difficult the hormone treatments will be, as they do change you and you just have a hard time feeling good for a while. Hope it doesn't take long. But message me if you need a boost. I have trouble down there also. So understand

Aren't wildflowers beautiful!

Boom

 

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Thanks for being there, Boom. For about 3 months after my surgery, incontinence was overwhelming, but Kegel exercises and a medication Imipramine helped a lot. I had almost total control. The hormone and radiation are affecting me some, but, hopefully, after the treatments I will regain my total control and my sanity.

Wildflowers are beautiful and so are you. James

 

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Boom,

I hope you get to see some flowers today and feel a breeze behind you.

James,

Since I am a prostate cancer survivor for 14 years and member of the Maine Coalition to Fight Prostate Cancer support group, I would like to get more info about your prostate cancer if I could. Between the time you learned you had prostate cancer (Pca) in March 2014 and the operation in August 2015, what tests (PSA, biopsy, MRI, etc.) did you undergo? What was your Gleason Score and highest PSA reading? At the time of your operation, did the surgeon say that the cancer had gotten outside the prostate? Did you ask for a copy of your pathology report following your operation, so you knew exactly how serious your Pca was and if it was outside the prostate?

In 2002 I was diagnosed with Pca following a digital rectal exam and needle biopsy. My PSA was and had been a 1.0 for 3 years,and the only sign of the Pca was found by the digital exam. My biopsy result was Gleason 6. (medium aggressive). I had an open type surgery (not robotic). The Gleason score after the surgery was 7 (worse, as is typical) but fortunately my Pca was all confined within my prostate,giving me a type T2a. I have been lucky that there has been no recurrence of the Pca in the past 14 years. I think my surgeon must have been pretty careful not to spread the Pca while operating.

The fact that you are getting radiation (IMRT) and hormone treatment (Lupron) to both kill the Pca and reduce the testosterone that helps it grow shows that your Pca was outside the prostate at the time of your robotic operation, or some other means spread it outside later. Did your family physician have you get an annual PSA and digital rectal exam? How was your Pca discovered?

Thanks for your answers which will help me as I counsel others with Pca.

Swanee

 

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Swanee,

Congratulations on your 14 year cancer survival and the work you are doing in helping men with prostate cancer.

My internist had monitored my PSA via annual blood tests and velocity-wise it had increased from 2.86 in 2011, 3.12 in 2012 and to 4.81 in 2013. At that time he recommended that I find a board certified Urologist for an exam, which I did. The urologist repeated the PSA and did a Free PSA and both were basically within normal range. He said that he could feel a nodule on my prostate and because of that, he recommended a biopsy. The biopsy of 3-14-14 found 2 cores of 13(15%) were malignant, which pretty much blew me away. It was a Gleason 3+3, T2a. He said I could opt for surgery, radiation or active surveillance and I decided on the ladder, after reading and studying for weeks.He prescribed Avodart for me and I had an allergic reaction to it, breaking out with rashes on my feet and legs. He changed me to Proscar, which I tolerated well. I made some diet changes, such as eating meat only 2-3 days a week and drinking pomegranate juice. I began to avidly read articles and publications about prostate cancer. My PSAs in 2015, taking the Proscar, were 2,53 and 2.62 and I felt good about having chosen active surveillance. The urologist had scheduled me for 3 month rechecks. The second biopsy was done on 6-19-15 and I was shocked when he discussed the results. Ten of fourteen cores were positive, 2 were 4, 7 were 7 and 1 core was 8, a Gleason 4+3. I think he was surprised too. He said that at this point I had to decide between radiation and surgery. After much more research and talking to men who have had both, I opted for Da Vinci Robotic surgery. The main reason was having read that if a man requires radiation after a prostatectomy, it is fairly routine and can be employed, whereas, if one has radiation and it is not effective, the surgery at that point is very risky. I also watched videos on the internet, such as some by Dr. Samadi, which reinforced my decision to have surgery. My surgery was scheduled on 8-24-15. My surgeon was very experienced having done several hundred Da Vinci surgeries and hundreds more open surgeries. I had the utmost confidence in her. Well, she thought the surgery went well, but I was surprised at how traumatic it was for me. I had the operation on a Monday and was permitted to go home on Wednesday. I certainly experienced much more pain than I had anticipated, having watched Dr. Samadi's videos. I certainly was not going to jog around the block any time soon.The Foley catheter was removed after 10 days. I ended up having one of the incisions that was not healing properly and I believe I incurred a hernia next to my navel where the robotic arm was inserted. I also developed a yeast infection which lasted several weeks and was pretty tenacious. I had quite a lot of post-op pain in my stomach and perineum area. I took off 3 months from work to heal and am glad I did because that is about how long it took to become fairly continent again. The pathology report showed a Gleason 4+3=7 a small focus of Gleason 5, tumor quantification 15%, tumor size 1.9 cm, no extraprostatic extension identified. There was microscopic seminal vesicle invasion in the proximal left seminal vesicle margins. The tumor was identified in the proximal left posterior margin, exquisitely close at left apical margin.The surgeon said that she did not identify any lymph nodes to biopsy. Perineural invasion: identified. The tertiary pattern: focal Grade 5. The pathological Staging (pTNM): Primary Tumor (pT)T3b: Seminal vesical invasion, lymph nodesNX. Additional findings: +High-Grade prostatic intraepithelial neoplasia (PIN)+ Acute inflamation+ Nodular hyperplasia. I had my first follow-up PSA in October and it was 0.08, second in January 2016 and it was 0.16. The third was in April 2016 and was 0.29. So, with this velocity change, the surgeon recommended salvage IMRT and the Oncologist and Radiooncologist recommended accompanying Lupron therapy. At this point, I received a Lupron shot (7.5 mg) on 5-23 and began the IMRT then. I had requested a 1 month shot in order to see how I would react, since I was allergic to the Avodart. I had also read terrible things about Lupron. I will get my 18th radiation session next Monday and am scheduled for lab work and probably another Lupron injection on 6-23-16. I have, as mentioned in the blog from before, experienced some urinary and bowel changes and have had mood swings and sciatica. I have read that many individuals who have had Lupron injections, have experienced sciatica too. I purchased a TENS device which seems to help some. I am hoping that last 23 radiation sessions go as well as the first 17 and I am also hoping that I only have to get one or two more Lupron injections and not have to continue with it for a year.

Well, that is probably more than you want to know or even expected. I am interested in your take on my situation. I guess my cancer is a lot more aggressive than I initially thought when I decided on active surveillance, but how does one know. Swanee, I hope this information helps you with your counseling and I look forward to hearing your comments and any advice. Thanks so much, James

 

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James,

Thanks for sharing your journey of prostate cancer non-treatment and then emergency treatment. It can be very tempting to try active surveillance, and some urologists recommend it with a man who has a Gleason 6. I would never do that for one simple reason: most pathology reports following a surgery are higher Gleason score than what the presurgery needle biopsy shows, because the needle biopsy can only reach a portion of the prostate, whereas the pathologist has access to the whole prostate, and sometimes more. My presurgery Gleason was a 6, but my post surgery was a 7. In 2002 I did not have the wonderful tool, the prostate MRI, to give a more detailed picture of my prostate than even a needle biopsy can, since the needle biopsy misses things that the MRI can see. I had to go by what my biopsy said, so I decided to go with surgery, which turned out to be the best decision looking back.

I am so sorry you had the 3 problems following the robotic surgery. Usually this does not occur. Evidently some prostate cancer got outside the outer margins of the prostate before your surgery, because you had a T3b staging. T3b means that cancer occupied both sides of the prostate and was growing outside the capsule.

I just read a very interesting article with the title "More men with early prostate cancer are choosing to avoid treatment" in the N.Y. Times. Even more interesting than the article are the 312 replies to it at the end. One man said he was able to do rechecks of PSA and biopsy every 6 months for 3 years, then in one 6-month period his cancer went from Gleason 6 to a stage 4 cancer and he had only 5 years to live. Science is not sure why a cancer can be slow growing for years and then all of a sudden take off like a fire, but it can. I am going to give you the link to the article and I guarantee you will get a tremendous education from reading first the article, and then reading as many of the replies as you have time for. I have a new respect for prostate cancer after reading them. I think active surveillance should be reserved for Gleason scores of not over 5, and that a prostate MRI should be done instead of the needle biopsy. Then a man stands a chance of avoiding surprises that can be gotten when men depend on needle biopsies. They are too undependable.

Here is the link: http://www.nytimes.com/2016/05/25/h...l?smid=nytcore-ipad-share&smprod=nytcore-ipad

I have had stress incontinence, just like you, for the past 14 years. Immediately after my surgery in 2002 I was using 1-2 guard pads per day until I had to have back surgery in 2005. Before the operation, the surgeon was unable to insert a catheter, and had an outside urologist come in and enlarge my bladder opening. Following the back operation, my incontinence increased to 4-5 pads a day (the urologist probably removed some scar tissue that had grown after my 2002 prostate removal). I looked into doing either an Advance Sling operation or having an artificial sphincter installed. I opted for doing the sphincter since the surgeon at Lahey Clinic in Mass. felt that would leave me drier. For family reasons I chose to have the operation done in my home state in Portland, Maine by a surgeon who had only done a few of these operations per year (big mistake). He accidentally punctured my urethra, and had to remove the 3 hardware pieces he had just installed the previous month! I finally healed up OK and am satisfied now to still use 4-5 guard pads per day. No more elective surgery for me! Lesson: if you ever chose any kind of surgery, be sure the surgeon does dozens or even hundreds of your type of operation every year, so they are expert at it.

Hope this helps. I am going to attend a prostate cancer support group tomorrow, and I will ask if anyone in the group is doing Lupron or IMRT as salvage therapy. If there is, I'll try to get back to you. I know there is one doing androgen deprivation hormone therapy and some are on various kinds of radiation.

Swanee

 

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I am urinary incontinent because of Marfan's Syndrome, a genetic disease. It attacked my spinal structures, resulting in a neurogenic bladder with painful bladder spasms. A urinary sphincterotomy pretty much ended the pain, at the expense of continual bladder leakage. More recently I have developed gastroparesis, in which my stomach, small intestine, and colon are partially paralyzed. I manage this with diet, several of medications, plus laxatives, suppositories, stool softeners, and enemas. My management skills are imperfect, leading to occasional bowel accidents.

 

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Boomersway,
My bladder-control problems are the result of unexpected, very serious bleeding following abdominal surgery when I was 14 years old. Following the surgery, we discovered the hard way that I have an hereditary bleeding disorder similar to hemophilia. After nearly bleeding to death, I developed a life-threatening infection and ended up being in hospital for three months. I eventually recovered fully except for the fact that something about the ordeal affected my bladder control.
Since those days, I have never been reliably dry at night and have always needed to wear a diaper to sleep in. Initially, I was totally unable to control urination and had the extremely unpleasant experience of having to wear cloth diapers and plastic pants to high school for three years before I managed to get enough daytime control to go without a daytime diaper provided I was able to get to a bathroom quickly whenever an "urge" arose. That continued through university and my early professional career. However, when I was in my forties, my bladder control diminished again, and I've been in diapers 24/7 since then.
By far the worst thing about urinary incontinence is the emotional distress it causes. When I was a teenager, wearing a diaper seemed like one of the worst disasters that might have befallen me. And having to go back to daytime diapers when I was in my forties was also very tough, although not as bad as it had been earlier. However, I've come to realize that incontinence is much less of a problem than many, many other disabilities in that it need have no effect at all on most areas of your life. When you get past the emotional turmoil, needing to wear a diaper isn't that much more of a nuisance than needing to wear glasses.

 

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Swanee, Thanks for your response. I am on IMRT # 28 of 40 and they are focusing on the prostate bed for 28-40. The focus was on the lymph nodes for the first 27 treatments. I was told by the radio-oncologist that the lymph node focus would cause some bowel and urinary changes, which it did. It was not overwhelming, but just different-more urgency and frequency. The first one, however, focusing on the prostate bed, caused pretty severe diarrhea for a couple of days and I had to take a medication to reduce it. I also did not feel well, but that has subsided. I am fortunate that I caught mine early, with a max PSA of 4.8. I maybe should have opted for surgery from the get go, but thought I might just live years with a very slow-growing cancer. I am hoping the remaining IMRT sessions don't elicit more side effects, as the first session did. I will find out this week. I think my urologist/surgeon was surprised that I was receiving Lupron injections also, but, from what I have read, it generally causes the radiation to be about 20% more effective. The oncologist said it was optional, but I decided to do it. Whatever it takes, I am ready to get back to "normal". Thanks, again and for the link. James

 

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Hi Boom,

I read your message last night, and I still remembered it this morning. I hope you did take that walk and enjoyed wildflowers and a breeze at your back. Thank you for thinking of the rest of us walking down the same road.

Best wishes,
April

Yes, I did April and many more, and today I could smell the wonderful smells in the summer breeze. I walked and thought about all of us trying to figure what direction to take in the fork in the path of life. And thought I hope we all can stay together and hold hands on this walk. Warm hugs to all of you

 

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Hi All-I had forgotten to mention that my lab results turned out very good at the half-way point and the PSA was down to 0.12. I am hoping for an "undetectable" PSA at the end of the IMRT/Lupron therapies in about 3 weeks.