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I am a 47 year old female who is diagnosed with High Grade, Carcinoma in Situ. My sysmptoms started in Oct 2011 and felt like a severe bladder infection. After several antibiotics and no improvement my GP scheduled an appointment with Dr. Kim, Cambridge Urologist.
Cystoscopy in May 2012, clear CT scan in Jun 2012, followed by TURBT in Aug 2012 confirmed the diagnosis. A second look TURBT in Sept 2012 confirmed it was Non Muscle Invasive. BGC Therapy 1 x per week for 6 weeks in Nov-Dec 2012 was followed up with a Cystoscopy in Jan 2013. Due to continued redness, Dr. Kim did another TURBT in Feb 2013. I am very grateful that he supports new thinking that treatment of High Grade,Carcinoma in Situ should be “aggressive” and referred me to Dr. Shayegan. The pathology from my Feb 2013 TURBT continued to show High Grade Cancer,Carcinoma in Situ.
Doing significant internet research on this type of cancer and failure of 1st BCG Therapy prepared my husband and I for the discussion with Dr. Shayegan. Watching Dr. Shayegan’s paitent meeting presentation on YouTube regarding treatment for Bladder Cancer helped. As Zina mentioned in her posts, Dr. Shayegan makes assessments and takes action. He provided us with the information we needed to move forward with RC. It was the first time along this journey that my husband and I felt a sense of relief.
Dr. Shayegan will do a cystocopy on Mar 20th so we can determine the appropriate Urinary Diversion. I am expecting RC surgery in April/early May.
I look forward to learning and sharing experiences.
DawnGlad you shared your story, Dawn. Thanks for joining us. Bobby Shayegan is one of the top uro-oncs in Canada and you are sure in good hands. Sorry you have to go through an RC but he’s the one to have doing it in your area. Feel free to ask any questions here as there are folks (particularly women in your case) who can help. You mentioned Zina and she is a good advocate to have in your corner.
Keep us posted and ask questions. We’ll walk through this with you as those who have been where you are .
GregDawn, I haven’t had to go down the road you’re on but would like to wishj you the best for your upcomng surgery and yes Zina is a good advocate for women in this situation. Keep in touch and let us know how you are.
Hello Dawn! You seem to be in good hands and that is a great bonus and should help you feel a bit more at ease. Easier said than done though, right? Loved your subject ‘No one fights alone!’ That is most applicable to places/forums such as this one. To have so many others on your side, experienced, newcomers, well wishers.. they are all here.
Please do keep us informed of how things are going..
HUGS!Hello Dawn,
A little over a year ago, at the age of 45, was diagnosed with one papillary tumour that invaded the lamina propria and lots of CIS. I was BCG failure as well. However,that was not known until my final pathology after RC showed many areas of CIS in the bladder. I had asked my urologist to remove my bladder during my initial round of BCG treatments. I also believed/believe in an aggressive approach. My urologist would have recommended RC after one BCG failure. I had my RC last July. I have had no complications from my urinary diversion, so far, and I hope that continues. I love sleeping through the night! Something I was unable to do the last few years due to urinary urgency and frequency symptoms caused by the cancer. I do everything I did before my surgery. I wear the same clothes. Life is good! If you have any questions, I would be more than happy to answer them. Take Care!
Tracey
Hi Dawn, I had an RC last December and already my ‘quality of life’ is better.
My ‘old’ bladder was very painful and it’s function was deteriorating after several years of biopsies, cystoscopies and two rounds of BCG, so it was a relief for me when my doctor recommended an RC after my cancer returned. I now have a Neo Bladder which I’m gradually getting used to. I don’t have any pain or discomfort. I do leak a little still but that to me is easier to deal with than what I was dealing with before.
I hope this helps you a little. I’m so glad I went through the surgery – it wasn’t easy but to me it was well worth it. I’d be happy to talk to you if you would like.
Carolyn
Hi Dawn. I had CIS back in 1992. I had one TURB and cystos every 3 months for 2 years and then every 6 for 2 years then yearly when it was discovered again 17 years later. Another TURB and tried BCG which made me so sick I would have discontinued it but I went with it for 8 weeks. then a 2nd opinion which found CIS again and an RC was advised. My uro decided to try Valstar and after about 2 years I have been clear. I think CIS is almost always high grade but mine is essentially stage 0 so I will keep having cystos. It it recurs we plan on another round of Valstar before going to an RC. As I understand it Valstar is not approved for use in Canada. I wish you well and will keep you in my prayers.
Thank you all for sharing your story and best wishes.
It helps so much to get insights from others who have had RC. I look forward to communicating more next week – I find out what urinary diversion I will have on the 20th March.
The future is bright if I am able to sleep through the night again. The journey is still long, but knowing an RC is in the near future is very comforting.Dawn
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