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Hi Joey,
Thank you for doing this research. My GP also said that type of metastasis was very rare. Still, to be on the safe side, I have an appointment with a dermatologist in the very near future. The article made me feel that it was unlikely.
thank you again,
Sue
Thanks Jack. I was just shocked by the brazenness of the person who posted. I guess I feel protective about this site and the people who use it.
Cheryl and Marysue,
You two are fabulous! Enjoy every second with friends and family. Thank you for your positivity… it’s a great Christmas gift to all of us.Sue
I can’t be much help since I have the neobladder and also, I’m female. My feeling from reading the posts on this site is that there’ll be some discomfort, frustration, and experimentation to go through, but then things will steadily improve. I’ve read a number of posts from people who are back not only to work, but also golf, skiing, and other sports.
Sorry I can’t be of more help, but just know that all of us have experienced varying degrees of fear, frustration, and I admit, in my case anger. I also wondered how my spouse would cope, and had I been giving him a report card (he was a primary school teacher), it would’ve said, ‘exceeded expectations… and then some!’ The vast majority give their spouses five stars.
Perhaps you could put a few key words into the search box to find some posts that will be more relevant to your situation than this reply of mine. You can also contact Jack Moon, who can put you in touch with people who have already gone through what you’re about to experience.
In any case, I send support to you and your family!
SueMy RC and Neo were a year ago September. Since last December, I’ve been doing the Tecentriq Phase 3 clinical trial. One more treatment in early December and I’m done. I just got the results of my 4th CT scan since the surgery. All good! Also in early December, I’ll see cytology results during the last follow up with the surgical oncologist.
There were times when all this began that this seemed decades away. Getting more and more accustomed to life with Neo, especially since Neo continues to improve. Taking a great trip to celebrate the end of this leg of the BC journey because I choose to believe the cytology results will be good. (Knock on wood-my only superstition.)
I hope everyone has a good holiday season and I send my warmest support to any and all who are dealing with their BC journey. Also to the caregivers.Sue
Happycappy,
I can second what Sjay said. Sept 21 will be my neo’s 1st birthday / anniversary. I thought I’d never get here, but I am 90% continent, and in fact, when I’m home, I don’t use any protection, except at night. Although I’ll probably get up twice to go, I find I’m dry in the morning. Like Sjay, I don’t watch the clock. I can recognise when I have to go. My precautions are a combo of ‘these things happen sometimes’ and superstition (if I don’t prepare, it’s sure to happen). FYI: I’m a 64 y/o F who was T3bN0.Hi MB,
I meant to send this yesterday, but just to let you know that you’re in my thoughts today, and I hope your appointment goes smoothly, that your questions are all answered, and that you get a little peace of mind.
SueHi Kory,
Congrats to you and Arn… so happy for you! My 3rd CT scan in August was all clear, so I’m getting there! My neo will have its 1st anniversary on Sept. 21, but my 4th (first year) CT isn’t until November, and my last follow-up with the surgeon, or more likely one of his residents, isn’t until December. Those dates are all likely due to the clinical drug trial I’m on, which also ends in December. Not entirely sure I’ll be a believer for another year as right now I feel protected by the Tecentriq. However, onward, onward!
SueMy neo wil be celebrating its first birthday on Sept. 21. I’m very happy with the choice I made. My surgeon left the decision between neo and IC to me. Interestingly, he wouldn’t consider the Indiana Pouch. Maybe it was me, the stage,… I have no idea. Frankly, I didn’t ask because it hadn’t been a choice that appealed to me anyway. Every week or so, I recognise another continence milestone. I thought things had gotten good, and then – wowza – they get even better. Good luck making your choice. It always seems people are happy with their decision.
Good for you! My urologist is great ( as I remember), but I think his secretary has the same personality disorder as your uro’s secretary. Some are so great and some… well. Enuff said.
In any case, I’m glad that you’re on the way to getting some answers. Keep us posted and vent here when needed!
Good thoughts,
SueHi,
I remember feeling the same way. My RC with neo was on Sept. 21 last year, so I guess I’m approaching an anniversary of sorts. I hope it goes as well for Bernie as it did for me. Of course, there were some bad moments, some uncomfortable moments, and some frustrating moments, but all things considered, it really wasn’t bad. Although, if I had to do it again, I wouldn’t cheap out on the room. I would definitely pay for semi-private accommodation!
Anyway, I don’t believe in wishing people about to have surgery good luck, so I’ll just say, stay as positive as possible, and Bernie, remember you get to sleep through it!
With support and best wishes,
SueI think my previous GP went into medicine because he was sick of being bullied. Now, he does it to his patients. He’s sarcastic and dismissive. He refers some people to specialists without their even asking. Me? He didn’t think an ear infection was worth worrying about, so just kept renewing scrips for antibiotics. Long story short… tinnitus for life. I’ve forgotten the experience of silence. This with a few other ‘Too bad, so sad… just put up and shut up’ reactions had me leave his practice and start seeing someone in Toronto. No GPs up here even had an open waiting list at that time. A 2 1/2 hour drive.
Fortunately, my first indication of BC was gross hematuria – pretty hard to ignore – so I went to the ER at our local hospital. The downside of not having a doctor here. But, when they realised it wasn’t an infection, they arranged a CT scan, and after that things moved fairly quickly until I ran into summer vacation times for first the urologist up here, and then the surgeon in the city.
The waiting and the not even knowing when or how I would hear from these people had me absolutely furious and pretty much on the edge of a breakdown. I don’t blame you at all for how you’re feeling. But, contact Jack Moon. He’s wonderful. And continue to stay in touch with this site. It absolutely saved my sanity on several occasions. I hope you can feel better about everything soon. Use BCC, as I did, to help yourself fell more grounded.
Sending a whole lot of moral support your way,
SueWell, my 3rd CT scan tomorrow, one month shy of Neo’s 1st anniversary. In my heart of hearts, I know it will be, “So far… so good!”
I don’t have an answer, but I’m sending hope that it abates after chemo. I had RC surgery without first having chemo . But, I’ve had tinnitus for about 9 years now (thanks to my previous GP), so I know how frustrating it can be during the times you crave silence. Anyway, just wanted you to know that I sympathise with your situation. I wish I could offer you something more concrete.
