Prostate Cancer 69 y.o. with ileostomy

[Ollie]

I have enjoyed great health since my ileostomy in 1970, still jogging and active at 69 y. o. As you would expect I had a my colon and rectum removed due to Crohn's diseas, which was the final result after several previous surgeries and treatment. Now I have recently been diagnosed with prostate cancer for which a radical proctectomy would be the best treatment. I know their are other treatments, radiation, etc however stastically in my case removal of my prostate offers best long term survival. I have been told by two urologists that this surgery could be difficult due to adhesions, scaring from previous surgeries, movemnt of intestines for ileostomy, no rectum and not recommended. I will be seeking other opinions.
However I wanted to see if any other men have faced this issue and had surgery to remove their prostate and what results they had.

Thank you

[Thomas99]

Ollie, I had an ileostomy 20 yrs. ago.at age 74 my PHI blood score is indicating the presence of cancer. My urologist is recommending a transurethral prostate biopsy to determine what stage the cancer is.I asked if cancer is present, what treatment ,he suggested radiation. I have not had the biopsy done yet because of poor sampling of cells doing this kind of biopsy. I have not discussed doing a prostatectomy as an alternative to radiation. In your case perhaps Robot-assisted surgery mite be an option. If not I would like the know what the side effects and good results of radiation are.--Tom

[Ollie]

Tom, I had a transperineal biopsy done a Cleveland Clincic 3 weeks ago, no problem. Unfortunately 2 cores had a Gleason score of 8. Although the cancer was detected early Gleason 8 is an aggressive form of prostate cancer. I have beeen consulting on treatment. There is a surgeon who i will consult with at Cleveland Clinic who has done a few robotic perineal radical prostectomies in patients with andhesions and no rectums, like us. However through my research I have found that hormone therapy and radiation are probably as effective as surgery and does not offer the surgical risks that are greater for us. The advantage of surgery would be they could detect if the margins were clear and you might not need radiation but if not clear still would need radiation. I suggest consults with radiation oncologist as well as experienced uroplogical surgeon.
Ollie

[Thomas99]

Ollie,I had not thought of a transperineal biopsy option which is more accurate than a transurethral biopsy. Was a MRI or CT scan used to guide your procedure?. I have not sat down with my urologist since my PHI blood test and a brief tel. conversation. Still in shock,etc. Will keep in touch as to my progress.---Tom

[Ollie]

Tom a CT scan was used to guide the biopsy however I did have an MRI since I couldn't be digitally examined which verifed the tumor (2.3cm.)
Hope this helps

[Thomas99]

Ollie, Thank you for the reply. Not sure if this is the form for us to communicate going forward. I am willing to exchange Emails if would like.---Tom

[Ollie]

Sure, my email is -- use Contact link on right

Moderator edit: removed explicit email address to protect poster from spambots

[Sofine33+]

Ollie,
Just been diagnosed with prostate cancer. Had my ileostomy in 1985.
What procedure did you have to treat the prostate cancer. Seems our options are very limited & many doctors don’t want to treat us. Again, what did you do?
Fred

[Ollie]

Follow up. I now have had a radical prostectomy. This was done 2/14/18. It was accomplished bt two surgeons, a general surgeon, to get thruogh my adhesions from all my previous surgeries, taking the urological surgeon to the prostate which was removed robotically. I am doing great, have blood tests every 4 months for next two years, then 2 times/year and eventually 1 time per year. No issues at this point, however if PSa ever goes up have option of radiation/hormone.

Ollie

[JerryNYC]

Ollie, How did the cutting of the adhesions work for you? (Although it has only been about half a year for you.) I have been considering this because of ongoing serious abdominal cramps, likely from adhesions formed after prior abdominal surgeries. Two surgeons I have consulted have not been supportive because the adhesions are likely to return. One pair of surgeons who are expert in minimally-invasive surgery (laparoscopic) told me that they could not guarantee that they would be able to complete the surgery this way in view of the possible "mess" they might find in my peritoneal cavity. So I would have to agree in advance that if they had to switch to open surgery (laparotomy), I would give them prior approval.

[Button]

JerryNYC:
Laparoscopy is often contraindicated when someone has had prior abdominal surgeries.

The laparoscopic risk comes from adhesions/scar tissue that tethers to the fascia that lines the abdominal and peritoneal cavities (as well as adhesions that anchor to the connective tissue that covers organs and adhesions that tether to segments of the intestine and blood vessels) and the tension that comes when the abdomen is inflated with CO2. The result can be the tearing and ripping of connective tissue and organs and blood vessels and unconfined hemorrhage.

Before you actively contemplate surgical lysis of adhesions, take some time to research the use of deep tissue massage/mobilization to release abdominal adhesions. Physical therapists can choose to attend certification courses and specialize in deep tissue mobilization/massage for abdominal ahesions. There is a combined art and science to fettering thickened bands of tissue.

Google: “release of abdominal adhesions with deep tissue massage.”

One particular technique is termed “Mayan tissue massage.” It is usually covered by medical insurance.

You can also try simple yoga poses to self-mobilize and lengthen bands of adhesions. Poses that incorporate rotation of the torso in relation to the pelvis are particularly beneficial. Long axial elongation of the body is another simple pose that provides benefit (lying on one’s back, raising extended arms up and over the head 180 degrees, enlongating the core body and extremities.

I was plagued by adhesions and recurrent small bowel obstructions during the first few years post ileostomy. A naso-gastric tube was usually placed to decompress my gut and facilitate intestinal squirming to unkink the offending adhesions. When conservative measures failed and the obstruction persisted, I agreed to an open laparotomy for lysis of adhesions.

I practice simple/gentle/restorative yoga for about 45-60 minutes a day. I have not had a problematic SBO since making a commitment of yoga/Pilates my daily routine.
Karen

[Ollie]

To: Fred and Jerry

Fred, to follow up with you again my surgeries were done in NYC and as I said previously with 2 surgeons. If you would like thier names please let me know.
Jerry to answer your question I had laparoscopic surgery not to release my adhesions but rather to allow the urological surgeon to get to my prostate by having the genreal surgeon disect through my adhesions. I have had an ileostomy since 1971 and have had many abdoninal surgeries which as you state result in adhesions. Fortunately I have had only 2 blockages; one from eating partially cooked green beans too quickly about 5 years ago and one post op from my prostectomy. The general surgeon who did the laproscopic surgery explained the risks and said if he could not get through laparoscopically he would attemt an open procedure and if that was not possible they would just close me up. The post op blockage was explained as a possibility because of the manipulation of my small bowel as he was disecting. Fortunately both blockages were also resolved by placing an NG tube. I know that more adhesions probably formed but I have returned to normal activities and feel fine, one of which is weekly pilates. I chew my food slowly, have only had small amounts of rufage.
I see you live in NYC I would be happy to give you the general sureon's name that did my surgery at Mt. Sinai. He is a wonderful person, a skillful surgeon and gives you all the time you want for questions.

Ollie

[dwv]

Greetings. I just wanted to provide one more experience here, just in case someone lands here via Google as I did. I've had a Kock pouch since 1982 (from UC), with a couple of minor revisions along the way. In mid-2019 my experience was very similar to Ollie's. One of the Carolina university hospitals near home attempted a transperineal biopsy of my prostate and unfortunately they missed, and the biopsy was all scar tissue. After that, I went to Cleveland Clinic where they performed an MRI and CT guided transperineal biopsy. Two cores showed aggressive cancer with a Gleason score of 8.

The same concerns regarding scar tissue were all there for robotic radical prostatectomy via the abdomen. However, things sometimes progress in medicine to our favor and timing is right. Late in 2018, one of the surgeons at Cleveland began performing "Robot Assisted Single Port Perineal Radical Prostatectomy" procedure. This offered the following benefits in my case: Shortest distance from incision to prostate (least scar tissue), less nerve trauma, no surgery near kpouch, faster recovery, and the #2 Urology program in the U.S. Google - "Single-Port Robot-Assisted Perineal Prostatectomy". The pouch team @ Cleveland also had concerns about the possible impact of radiation and other treatments on my K-Pouch

The surgeon did have a lot of scar tissue to remove to clear the robotic port to the prostate, but it didn't present any significant complications other than additional time. Thankfully, post-op my margins were clear, and six months later, my PSA is near zero, and the healing has gone well. I am thankful for, and highly recommend Dr. Kaouk and his robotic surgery/Urology team in Cleveland. He literally has written the book on this updated approach.

Best of luck,
David

[Bogg]

Hi, I've just had a bowel screening test and they've found blood. I have had an Ileostomy since 2006 due to UC. How long did they take from diagnosis you until it was treated please?
Thanks

[MrMatt]

Hi,
Thanks for describing your stories; they are illuminative. I have a similar situation to you all.
I had an ileostomy in 2013 at UPenn (Dr. Najjia Mahmoud) due to pre-cancerous polyps, after total colectomy (with J-pouch) 1992 for familial adenomatous polyposis (FAP).
I have tested often, and had rising PSA over the past decade, now at ~11. My local uroligist says it's time to treat it; maybe.
I had a trans-perineal biopsy (Penn-Presby. Hosp.) in 2011 (8 cores). Cores came back for a tiny 3+4=7 Gleason in one sample. Two others were 3+3. We did watchful waiting for a decade.
Since rise in PSA, I had a second transperineal biopsy December 2021 (12 cores), this time at Jefferson Univ. Hosp., Philly (Drs. Lallas and Halpern). One small lesion is 3+4=7, two others 3+3. Not much larger than before, seem to be contained in the prostate.
I now seek a treatment that does not affect my (well-performing, luckily) ileostomy. The single-port DaVinci removal technique seems quite interesting, though it's also quite new. I of course must have alot of scar tissue after all the surgeries/lysis of adhesion work back in the '90's, so it could be advantageous.
I have been warned against consider brachy (seed) therapy, specifically because of ileostomy/rectum removal and proximity of small bowel to the prostate. Others - thermal (cold, hot, steam, infrared, ultrasound) or ext. beam radiation (proton, etc.) have their own concerns with 'toxicity' (such a euphemism!) to local small bowel and other local tissues.
I'd rather not have a radical, at this point. What to do?
Thank you for the name of Dr. Kaouk at Cleveland. I would like to seek someone here near Philly.
Best of luck to you all.