Mural near Hope Street (hence living ‘off Hope’) Providence USA Photo by Howlzap Cologne
As the shock of the recent recurrence started to wear off I began to hatch a plan of action with my husband. I made an appointment to see my urologist, I talked to the online bladder cancer group I attend monthly. I talked to the group of cancer survivors I do therapy with weekly.
There were a few options:
- radical cystectomy – removing the bladder
- BCG treatment – starting it again
- intravesical chemotherapy treatment with gemcitabine
- a second opinion
Was I living in hope to feel my bladder deserved another chance? Both the online group and my urologist were supportive of a second opinion. My urologist even arranged it by filling in a form and sending details of my 9 year case history to the university hospital. Seeking a second opinion would help clarify my path forward.
At the same time I decided to see a holistic doctor recommended by a friend of mine. He is a qualified doctor who specialises in TCM (Chinese Traditional Medicine) and Ayurveda (Indian Traditional Medicine). He recommended some functional mushrooms tailored to my situation as well as some acupuncture.
The second opinion meeting impressed me, the doctor was knowledgeable without being arrogant and acknowledged both what I knew and what I was doing for my health. He asked pertinent questions about my bladder and about frequency and pain. He talked about HIVEC – Hyperthermic intravesical chemotherapy where high strength Mitomycin C is heated to 43°C and circulated through the bladder. They had run a study there and had had very good results. I was concerned my initial treatment with Mitomycin C for several years and the fact that I’d had cis would disqualify me from this but I was reassured that this wasn’t the case.
HIVEC partnered with the TCM felt like the best option for me so I was back, living in hope!
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Als der Schock über das jüngste Rezidiv langsam nachließ, begann ich gemeinsam mit meinem Mann einen Aktionsplan auszuarbeiten. Ich vereinbarte einen Termin bei meinem Urologen und sprach mit der Online-Blasenkrebsgruppe, an der ich monatlich teilnehme. Ich sprach mit der Gruppe von Krebsüberlebenden, mit denen ich wöchentlich eine Therapie mache.
Es gab mehrere Optionen:
- radikale Zystektomie – Entfernung der Blase
- BCG-Behandlung – erneuter Beginn
- intravesikale Chemotherapie mit Gemcitabin
- eine zweite Meinung
Lebte ich in der Hoffnung, dass meine Blase eine weitere Chance verdient hatte? Sowohl die Online-Gruppe als auch mein Urologe befürworteten eine zweite Meinung. Mein Urologe arrangierte diese sogar, indem er ein Formular ausfüllte und die Details meiner 9-jährigen Krankengeschichte an die Universitätsklinik schickte. Eine zweite Meinung würde mir helfen, meinen weiteren Weg zu klären.
Gleichzeitig beschloss ich, einen ganzheitlichen Arzt aufzusuchen, der mir von einem Freundin empfohlen worden war. Er ist ein qualifizierter Arzt, der sich auf TCM (Traditionelle Chinesische Medizin) und Ayurveda (Traditionelle Indische Medizin) spezialisiert hat. Er empfahl mir einige auf meine Situation zugeschnittene Vitalpilze sowie Akupunktur.
Das Gespräch zur Einholung einer Zweitmeinung beeindruckte mich, der Arzt war kompetent, ohne arrogant zu sein, und erkannte sowohl mein Wissen als auch meine Maßnahmen für meine Gesundheit an. Er stellte relevante Fragen zu meiner Blase, zur Häufigkeit und zu den Schmerzen. Er sprach über HIVEC – die hyperthermische intravesikale Chemotherapie, bei der hochkonzentriertes Mitomycin C auf 43 °C erhitzt und durch die Blase zirkuliert wird. Dort hatten sie eine Studie durchgeführt und sehr gute Ergebnisse erzielt. Ich war besorgt, dass meine mehrjährige Behandlung mit Mitomycin C und die Tatsache, dass ich Cis erhalten hatte, mich für diese Behandlung disqualifizieren würden, aber mir wurde versichert, dass dies nicht der Fall sei.
Die Kombination aus HIVEC und TCM schien mir die beste Option zu sein, also einen neuer Hoffnung!
Bladdergraffiti 
I think living off hope is a good option and you can also try all those other things. I had bladder cancer and it started to go out of the bladder so I had to have my complete bladder removed. That was in 2015.I did write a lot on my blog about it when I first came home from the hospital because I wanted other people to realize what they tell you and show you in videos about the operation and afterwords and all that is ridiculous. It is much harder than that. My urologist was not the best and I have since stopped going to him. It took me about three months before I found an appliance I could use that would not leak. It was very discouraging. Now 11 years later, I’m having other health problems and found that my abdomen was getting bigger. The leaks were starting again and it turns out that I have a large hernia there pressing on the ostomy, causing leaks. I need to have another operation to remove it because it will just keep growing. Of course I do not want another abdominal surgery. I had uterine cancer in 95 and I had to have a complete hysterectomy and then in 20 years later I had cancer surgery removing the bladder. I don’t recommend surgery on your abdomen for any reason unless you have to because it screws up your insides is about the simplest way I could put it. However the option that you have chosen for so many years to me seems like it would be horribly painful and I am glad that I did not choose that but of course I didn’t have that option. No solutions are easy, are painful and require a lot of patience but if you have a urologist that you like and trust then I would go with their recommendations. You have a lot more strength than I do. I would not want to go with years of those painful treatments but there are many improvements in the last 11 years. I wish you luck in whatever decision you make. Feel free to ask me any questions, no matter how personal I will answer them truthfully.
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Dear Rugby what a journey you’ve had! Thank you 🙏 so much for your story and you support. It’s so true that everyone makes different choices based on there situation and what advice they are given. Also things are evolving a bit now with new therapies that weren’t around 10 years ago. That hernia sounds bothersome wishing you all the best for the upcoming surgery. Much love 💗 xx
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