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The Dismal Snake

DW writes about experiences during his first year living with level 0-1 bladder cancer (just lining involve and non-aggressive form). Emphasis here is on the patient experience rather than disease diagnosis and treatment.

Dismal Wizard was diagnosed with low grade cancer of the bladder lining about 16 months ago. American Cancer Society, The Mayo Clinic, and the British National Health Service have good clinical guides describing the disease and its treatment.

Bladder cancer involves well, the bladder so not much is written about the patient experience. After searching high and low for survivor experience, I found little to tell me what to expect on this journey. So to help those following in my footsteps, I decided to write a journal about my run-in with the disease. As always, the juicy stuff follows the led. And always, see your urologist for medical advice and remember that each case is unique.

References

  1. https://www.mayoclinic.org/diseases-conditions/bladder-cancer/symptoms-causes/syc-20356104 This Mayo Clinic article has a good lay explanation of the several forms and onset symptoms.
  2. https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109 This Mayo Clinic article explains the investigative techniques used to make a diagnosis and talks more about the variants.
  3. https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging/survival-rates.html This American Cancer Society article explains the stages: Localized, Regional, and Distant. Localized cancer is confined to a singe site and structure like the bladder. Regional stage is spread to neighboring structures and organs in the body. Distant spread is spread to structures and organs far away from the bladder.
  4. https://www.cancer.org/cancer/bladder-cancer/treating/chemotherapy.html Depending on what you read, you’ll find a bland description of the procedure and protocols or a truly scary side-effects and risks list written by CYA liability lawyers. There’s little in between. And no patient experience stories.

Onset

For me, the clue was urinary tract infection symptoms with clean microbiology.

  • Bladder discomfort
  • Painful urination
  • Urine of abnormal color, sometimes a bit bloody
  • Urge incontinence with pain at penis tip sphincter and inability to wait. This would present when brushing teeth, etc. Or during car travel. The incontinence became progressively worse (the tip off that it wasn’t run of the mill urge incontinence).

Surveillance 1 and Diagnosis

Diagnosis was by the good old Mark I eyeball during an endoscopic exam performed in the urologist’s office. To rule out more extensive involvement of the urinary tract, a CT scan was taken from collar bones to hip joints looking for kidney involvement. There was none.

I had the privilege of watching the endoscopic examination. Initial presentation was of 3 polyps that appeared to be potato roots growing inside the bladder. My urologist scheduled me in for a biopsy during which he removed the polyps and cleaned up down to a good margin.

The first two levels urothelial carcinoma and squamous cell carcinoma follow the skin cancer model pretty closely. Adenocarcinoma involves the muscle structures of the bladder and is much more difficult to treat and manage. A college friend went through this form of the disease in his early 60’s.

Prognosis

If the cancer is localized to the endothelial region and treated, five year relative survival is 96% compared to a similar sample of the population that is free of bladder cancer. If you alert to the symptoms, seek a diagnosis, and follow up on treatment, you are very likely to die with bladder cancer rather than from complications of bladder cancer.

Initial treatment

Treatment protocols for bladder cancer are well established, especially urothelial disease confined to the bladder lining. My initial treatment was by endoscopic outpatient surgery that took about an hour. The urologist, working through an endoscope, used a heated wire to snip off the polyps and to excavate the base down to a clean margin (resection, I believe). In my case, the clean margin was still in the lining. The removed tissue went to pathology to determine what was going on. The pathology report confirmed that my disease was level 0 to level 1, that is in the lining and restricted to the lining.

Recovery 1

Recovery is more annoying by far than the procedure. The bladder sphincters are reactive. When a clot forms and sloughs off, it eventually reaches the sphincter causing a localized sharp throbbing pain and the sphincter opens to relieve the annoyance. The clot pops out with a bit of pink lemonade urine in a feeble dribble. Have a seat!

Post Treatment Pain Management

Following surgery 1, I was slow to catch on so I took ibuprofen as normal per sinus care and alternated acetaminophen in between for my first surgery. By using ibuprofen, I prolonged the clot formation and post-operative misery by a day. Its not the work-site pain, it’s the cranky sphincter that rules recovery discomfort.

If you use acetaminophen for pain relief, the clots will eventually hold and the bladder will calm down. For me during recovery 3, this happened about 9 hours post procedure.

Ibuprofen significantly reduces clot quality and will prolong the period of clot sloughing, incontinence, and painful urination. So believe your urologist when he says acetaminophen only.

Bladder Pain Management

Nothing other than getting a good scab stops the cranky sphincter pain. You can trim a day or two off the incontinent period by following Doc’s home care guide.

Right after procedure you may need something a bit stouter, especially if a lot of rooting around was involved. Typically, your urologist will send you out the door with 5 milligrams of Oxycontin on board and a prescription for a days worth of Oxycontin, 5 mg. I found that one dose was sufficient and made it through the night with only acetaminophen which I normally take for sinus miseries. Again, surgeon knows best. Follow the home care protocol and pain management guidelines in it. Use the Oxy if good old Tylenol is leaving you with a good ache.

Use the stool softener along with the Oxycontin as directed to prevent constipation. Opioids slow bowel transport resulting in hard to pass stool.

Skip the Aspirin 81

Skip the cardiologist’s Aspirin 81 as directed in the pre-surgery prep and continue to skip until clots are holding

Home care alerts

Bleeding as opposed to discolored urine and a dribble of blood following ejection of a clot. Call for help. Call the ER for help.

Infection with fever greater than 101.4F or 38.6 C if you use a Celsius thermometer like I do. Call your urologist for help or ER if nobody is on call.

Persistent diarrhea likely indicates you picked up C-Diff in hospital. If it does not resolve in 24 hours, call your urologist for guidance. C-Diff can be antibiotic resistant. If nothing else works, opt for fecal transplant to re-establish a healthy colon microbiome. Adjust diet as recommended to maintain a healthy gut microbiome.

Constipation that does not resolve itself in 24 hours or so. Follow home care guidelines for what to eat and how much. Bowels should restart during the first day and something should come out within 24 hours if you follow the eating guidelines in the home care instructions.

Call urologist if any milestones in the home care recovery guide are missed, like prolonged incontinent urination or clots don’t hold.

Healed Clots Pass

Somewhere in week 2 or week 3, the bladder lining clots will have done their job and will pop off and be passed. It’s painless but a bit startling the first time. The clot will pop out like a pea leaving a pea-shooter.

Post-operative Follow Up

Once healed up, your surgeon will perform a post operative follow up exam, another endoscopic inspection of the bladder looking for expected behavior at the work locations, and looking everywhere for new developments. For me, everything looked unremarkable. So we fall back to the regular surveillance schedule.

The followup is about 2 weeks after surgery.

Surveillance 2

Surveillance is a periodic examination of the bladder looking for changes in the bladder, particularly new lesions to be investigated. In my case, three pimply lesions had been developed so another removal and biopsy procedure was scheduled.

Treatment 2

Treatment 2 proceeded much as treatment 1 did. Conditions were as expected and cleaned up quickly

Surveillance 3

Surveillance 3 found some new growths in the area cleaned up during treatment 2. This is a lot like pulling weeds in the garden. You pull the weed. If you leave enough of the root behind, the weed returns. There was a polyp erupting on the back wall of the bladder and the rework area had pretty pink things that looked like skin tags, I hope, not hook worms. They wouldn’t be there, hooks would be in the gut.

Treatment 3

By this point, this post is reading like Ground Hog Day, the movie. Tomorrow is just like today or this surgery was just like the one before. So Doc removed the new polyp and removed the new pink things to send off to pathology.

He added chemotherapy during this visit, Mitomycin with 5-FU applied as a bladder fill. The agents soak the lining and suppress the actively growing cancerous cells. After an hour, the catheter is pulled, the medications are collected as hazardous waste, bagged in yellow poly, and trundled off for hazardous waste incineration.

Because the chemotherapy is external, it’s like applying bactracin ointment to a cut. Very little is absorbed so side effects were minimal. For me, chills and a swollen lymph node or two that resolved within 24 hours of treatment.