My Journey

[GerryW]

Roles: Print Materials Volunteer, ‘Community Ambassador, Peer Suport volunteer, 2017, 2022 Kingston Walk Lead – Kingston. Ontario Region Born: 1951

Location: Kingston, 1000 Islands, Ontario
Email: gwrosso2@gmail.com
Timeline: Diagnosed: May 2015, Chemo Fall 2015, Surgery January 2016
Experience: T2b Bladder Cancer, Prostate Cancer, Chemotherapy, Cystoscopy, Radical Cystectomy, Spinal, Ileal Conduit
5’7″ 160lbs

Hi. I’m Gerry. I was diagnosed with T2 High Grade (Gleason6) bladder and prostate cancer in 2015. My journey started in February 2015..
Feb – Visit with GP for other reasons. Requested annual prostate exam a little earlier than usual. Detected small lump for first time. Referred to urologist. Not overly concerned because PSA only 2.4, no pain and not passing any blood.
Feb 25 – First visit to a Urologist who confirmed prostate lump and scheduled a cytoscopy.
June 1 – Flexible cytoscopy to inspect prostate and bladder by chance found tumors. Looked like a cauliflower or large roundish lump of white coral.
July 1 – TURBT and TURPT under general anesthetic.
July 15 – Biopsy confirms “invasive urothelial carcinoma with extension into the muscularis propria that is high grade, at least pT2, prostate Gleason 6”
July 23, 27 – CT and Bone Scan. Bone scan clear. CT clear except some stranding in the perivesical fat.
August 17 – First of potentially four chemo cycles to be followed by radical cysectomy and ileal conduit in January. I decided on the neoadjuvant Chemo/RC/IC solution in consultation with the excellent team at the Cancer Centre of Southeastern Ontario, and because of the high recurrence rate for bladder cancer, relative simplicity, minimal disturbance of intestine, recovery period and the level of activity that I need to maintain. Chemo would statistically improve my 5yr odds of 60% to 65%. (Turned out to be much higher than that after results from my RC showing no metastasis.)
September 14 – Into cycle 2. One week delay because WBC dropped to 1.05 from initial count of 3.6.
Up to 1.6 this morning so getting another round today. Need to find out what I can do, eat or drink between sessions to help boost this count to help prevent further delays.
November 6 – Chemo complete… now to get a final CT, then on with the RC/IC…. git er dun!
November 19 – Good results from final CT scan. Met with surgeon today. Reconfirmed decision and filled out some pre-op paperwork. Operation now scheduled for January 12, 2016. I will be in the hospital better part of a week, and will be able to return to work on light duty 6 weeks post-op. Full recovery expected in about 6 months (July).

I am trying to stay productive during this treatment period by researching, helping my friends know the symptoms of bladder cancer and helping Bladder Cancer Canada through it’s September Walk campaign through casual conversation and my personal home page on the Kingston Walk site.
I am also doing some cardio and abdominal exercises during this period to hopefully speed post-op recovery. My wife and daughter are extremely supportive keeping me out of trouble and well supplied with hand sanitizer especially in the last week since my WBC Neutrophil count has ‘tanked out’ causing two delays in chemo

Limited symptoms prior to diagnosis:
- some cases of cancer in close relatives
– unable to completely empty bladder resulting in frequent urination. CT showed that this was caused by hardening of the lower bladder wall caused by tumor growth.
– diagnosis prior to onset of major symptoms quite by accident
– blood in urine briefly at noon 1x in 2005 attributed to stress or UTI.
– did have increasing episodes of frequent, urgent urination passed off as enlarged prostate due to normal aging
– consistently low PSA of 2.4 raising no concerns
– did get annual prostate exams which triggered a trip to urologist this year

I look forward to being a small part of the sharing of experiences, advice and support in this forum hosted by the Bladder Cancer Canada organization and its members.

August  2022 Update: Six years later. Active lifestyle not restricted by an ileal conduit. Supporting new patients from my experience as a Bladder Cancer Canada volunteer.

 

Twitter: @woodlane_ca
Email: gwrosso2 gmail.com

• This topic was modified 5 years, 2 months ago by GerryW.
• This topic was modified 4 years, 2 months ago by GerryW.
• This topic was modified 4 years, 2 months ago by GerryW.
• This topic was modified 3 years, 2 months ago by GerryW.
• This topic was modified 2 years, 10 months ago by GerryW.

Kingston and the 1000 Islands

[cheryl9]

Hello Gerry

Wow, your year has been busy. Good that you reached out to this forum. There are lots of awesome people here that know all about what you are going through. Remember, you are not alone. Be sure to hug those who are close to you and spend lots of time with them.

Bald spot and sense of humor: years ago I saw a picture of a bald spot and a tiny tattoo of a man with a lawn mower at the edge of the hairline. Have told my husband in no uncertain term that, should he go bald, he has to get one of these tattoos also.

Overall, sounds like you are fortunate that the BC was unexpectedly caught. Could definitely be way worse. You will believe this once you are on the other side of all this and living your “new normal” and yes, you will be able to continue living a life.

Take care

[marysue]

Welcome Gerry to the site that no one wishes they had to belong to. Thank you for your involvement with Bladder Cancer Canada. We always can use new people. But that being said, keep watch over your health status and only do what you are able. Once you get recovered from the removal which will take several months you can gradually pick it up. I speak from experience on this. I tend to jump in with both feet and wonder why I get too tired.

I dodged the bullet on having to remove my bladder being able to do BCG – 21 treatments over about 3 years but that in itself had its own challenges. You sound like you’ve got a great support system and medical team behind you which is the biggest boost you could have. All the best going forward with the chemo and surgery. Keep us in the loop and don’t hesitate to post any questions as there are many here that have gone through the journey you are embarking on. As Cheryl has said, you’ve had one busy year! ((((((HUGS))))

[Gord]

Hi Gerry, welcome to the club no one asked to join. Sounds like you are making good progress and decisions in what is a difficult time filled with lots of decisions. I was diagnosed T2a around Christmas 2012 (at age 52, previously healthy, no risk factors for BC), followed by three rounds of chemo and then an RC with neobladder in June 2013. Two + years later and I am cancer free and very happy with my outcome, and my life. Sounds funny to say it, but after reading the experiences of people with non invasive BC, I am sort of glad I went straight to muscle invasive, got everything over and done with and behind me in less than a year! About the chemo. I had three rounds, 1x a week for three weeks, Mondays, with a week off between rounds. First week was the toughest, I usually did not go into work that week, 2nd and 3rd were easier, worked part time. 4th week was my power week when appetite and energy returned. The hardest thing for me was the fatigue, no other issues really. I actually only had the 3rd week once as my blood counts did not allow me to have it in Rounds 2 and 3. Glad I had the neo-adjuvant chemo. Recovery from the RC/Neo was as expected, long, but fairly much textbook. I was off work 4 months. Have been cancer free from the moment they took my bladder out. Haven’t really been sick a day since, though I was back in hospital for a couple of infections, and to do some maintenance work on my neo. You will find good support on the journey here, and sounds like you’ll be a good support to others too. Hang in there. Will be watching for your posts and updates.
Gord

[GerryW]

Our 2015 ‘B Team’.  Thanks for your efforts raising awareness, helping the cause and possibly saving a life. Over $415,000 raised nationally, $10,415 here in Kingston and we exceeded our goal this year thanks to you and everyone we reached in this campaign! I’ll be bagging quite a few Dahlia bulbs as “‘thank-you’s” in the Spring!

Kingston and the 1000 Islands

[Ieva]

https://www.oncologynutrition.org/erfc/eating-well-when-unwell/white-blood-count-diet/

This is a good article on how to boost WBC.

Ieva

[DDep]

GerryW

Thank-you for the photo of the Kingston BCC walk.

My daughter, her boyfriend and our Kingston friends also took part in the walk.
She enjoyed it very much (Particularly through the forest).
I am very proud of her.

BTW, I too, for some time, had symptoms other than visible blood in my urine.
However, it was only when I had visible blood in the urine that everything “spooled up” and action was taken.

I wish you the very best in your treatment and recovery.

DDep

[millize]

Hi Gerry I too have had both prostate and bladder removal, and now sport a illeal conduit. The recovery will take time, and it is different for everyone.I work, ride motorcycles, play hockey and weight train.Yes there are challanges and changes that can’t be avoided. I make the most of the time I have.l live a normal life (whatever that is) One day at a time ,one breath at a time and take things as they come.

[GerryW]

Just completed Cycle 3 of 4 pre-op chemo. Mid treatment CT after Cycle 2 showed regression of tumor roots. Hair a bit greyer (what there was of it!) . Have overcome constipation caused by anti nausea meds. Memory is sufering a bit… increasingly slow finding words over last couple of weeks into chemo. Currently finding some shortness of breath and acid reflux, but good news is that chemo is almost over and it has had the desired effect.

Kingston and the 1000 Islands

[cheryl9]

Hello Gerry

I am so excited for you! Bet you didn’t think this would be the answer you would get.

I am excited because your mind set appears to be so good. That is so, so important.

tattoo: I think this is awesome! Do you know what tpe of tattoo you are going to do?

Laugh for the day: picture I saw years ago of an elderly balding man with traditional shiny dome and ring of hair on the sides; along the hairline was a tattoo of a little old man with a lawn mower.

Take care

[GerryW]

November 26 – RC/IC rescheduled to Tuesday January 12, 2016. Got flu shot Nov. 25. Returned to work November 30 until RC.
December 23 – Work going well getting back in shape for January. Expecting about a 6 hr operation, 5 days in hospital, then about 6 weeks off work for abdomen to heal. Followed by about 3 months light lifting… ‘no more than 10lbs’. Looking into a source for elasticised briefs to help support abdomen during recovery. Also trying out Holister and Coloplast samples…. Currently having a problem getting Hollister wafers to stay on.
January 7th.. Last 12hr shift today before the ”big’ day next Tuesday. Sitting here at Timmy’s on way in to work. Ready. Tried out appliance…. more practice still needed and some bugs to iron out over next 6 weeks recovery. Saving some ”before and after’ CT pics and maybe be able to get a couple jpgs for a ppt to keep me busy after the procedure. Been working with a very supportive family and some great people through this.
January 14th. – Ist day after successful procedure painful sitting up so rolled to side to get off bed Before/after weights 165lbs, 162lbs. Today half the pain. Still on liquid diet. Started to pass gas overnight indicating bowels starting to function. Hiccups bothersome right now.
Note to nurses… Please inject that post-op blood thinner stuff SLOWLY!!!!…. burns like hell if it goes in too quickly! I know!!!
I’m making an effort to get off those small doses of hydromorphone. Getting first hand experience with the effects of opiods. A couple of really weird dreams and not enough control of my sense of humor in some conversations.
January 18 (6 days postop) – Just some incisional pain being managed with 1mg hydromorphone plus 650mg Tylenol. Minor lung infection being treated with IV antibiotic. More appliance system training today prior to release today or tomorrow.
January 19th – Released home. Awesome life-saving experience. Hardly any pain now. Managing with occasional Tylenol Extra Strength 500mg.

Sample Flow rates:
5hrs. overnight 900ml
8 hrs overnight 1300ml
7 hrs overnight 1100ml
5 hrs overnight 1100ml
8hrs overnight 700ml (less drinking yesterday)
8hrs overnight 900ml
10hrs overnight 1100ml (need to drink more)
9hrs overnight 1200ml (drank a bit more)
10hrs overnight 1100ml
January 23 (11 days post-op) Two+ easy BM’s per day . Black until today, now looking more normal.
January 26 – No Tylenol today. Hardly any discomfort.
January 28 – Continuing to gain strength.
The small, vertical incision is almost healed externally.
February 1 – Stints removed. Received biopsy results….. 0000 except for minor on prostate which was removed anyway. Great news!
Appliance training:
January 12 – Appliance installed post-op
January 19 – (7) Appliance change
January 25 – (6) Appliance change. Minor rash.
January 31 – (6) Leak. Rash. Self-change.
Februay 1 – (1) Leak. Rash. Self-change. Put tape around appliance to keep edges from lifting after shower.
February 5 -(4) Leak. Rash. Self-change. Tried Convatec system but would not adhere. Went back to Hollister. Put some salve on rash.

Tried 2nd Convatec Natura moldable 413418 and got 5 days out of it with no leaks!!!
I like not having to use scissors with the moldables.

Now trying Coloplast before making a final desision..

FEBRUARY 23 – RETURNED TO WORK! Light duty. Not more than 10lbs lift to July when incisional healing should be complete. I find that I just need to remember to feel fullness of pouch every few hours because there is no sensory feedback anymore like I got with my old bladder. No more frequent or urgent needs to urinate. Pouching system is hidden…and I am gradually increasing my lifting capacity paying careful attention to best ergonomic practices.

March 22 – Coloplast Mio’s lasted 4+ days, then one blew out the side and I had a bit of redness. Now trying Hollister 8460 single piece. Have got almost 4 days out of it sofar. Picture attached. No paste used… that is my solution to getting longer life out of the appliance.

Best performance to March 23 2016..
Convatec Natura Moldable 2pc 413418 cloth surround 5+ days.
Coloplast Mio 2pc 10512 great flow. plastic surround 4 days to blow out.
Hollister 8460 1pc cloth surround 4 days and counting. No belt support clips.

I prefer the 2 piece because it lets me use a support belt to better hold the pouch in place and put inward pressure on the stoma to help prevent a stomal hernia (my thought). I have a stoma cup to use a belt with the single piece.

Question.. Anyone using moldable wafers with their urostomy??? I’ve heard that moldables are meant more for ileostomies and that they tend to break down from the higher acidity of urine.
Answer…. No… For me they disolve snd fall apart from the acid in urine.

Thank goodness for samples. Pits waking up at 1am to a failed appliance. Lessons learned sofar… no paste and use a stoma protector to prevent belt from weakening the appliance seal.

Showing yellow… My cost of most likely working in autobody repair shops as a teen without protection from enamel paint fumes and dust.

Goal: Appliance change – 5 days, pouch change – 7 days.

June 17th…. Finally getting 5 to 7 days reliably between changes. Solution for me was going to larger (2-1/4″) wafers (Hollister 14603) that let me apply pressure to the wafer centers before attaching the pouch, no paste or powder, and longer skin drying time before application. I know the skin is dry enough if I fan on it and don’t feel any coolness.

Kingston and the 1000 Islands

[cheryl9]

Congratulations Gerry

The mindset for the journey can make such a difference on the recovery. Your recovery and the rest of your life will surely be awesome.

“I like living. I have sometimes been wildly despairing, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing.” Agatha Christie, unrefuted queen of the murder/mystery novel.

Take care

[Marie 1]

Gerry, it is wonderful that your recovery is progressing so well. You went through so much in 2015. I Hope the years to come will bring to you all things good!

God bless
Marie

[Jack Moon]

Hi Gerry

All seems to be going well my friend. All the best going forward.
Jack

[KIOWA]

Hi Gerry. I wonder if we should begin a tattoo post section. As much as I like your tattoo I don;t want one. I am glad you have gooten through this and I believe your positive attitude and your sense of humor will pull you through the rest of the way. I think it’s time for another tattoo, one done in a tattoo parlor this time. I really want to know what you would get and where you would put it. I know Jack wants a golf club tattoo with golf balls. Not sure where he would put it but I have an idea. And I think I will leave it at that. Best of luck to you Gerry. Glad they found that cancer when they did.

Kiowa

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