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Newly diagnosed and confused!!

3 years 10 months ago - 3 years 10 months ago #48126 by anicra
Sandy, I'm sorry for your troubles. Seems like you've had a lot done in your 3 years. I know what you mean about finding out what you have. This is primarily a man's disease, I thought, as well as those who smoke. I never smoked but did live in a house with parents that each smoked 3 packs a day. Does second hand smoke cause this? Don't know but boy was I surprised. I'm now playing the "hurry up and wait" game. The doc doesn't know when the BCG will be back in stock and his office doesn't seem to be concerned. How long is too long to wait? Not getting any return calls from the doctor. I will follow up next week.

I like the idea about a blog. Thanks!! I had both my knees replaced 8 weeks before this diagnosis. I have a friend in NH who has to have her's done so I basically did a "Dear Diary" to here every week or so.

You mention going to Boston - where are you located? We had a vacation place in very southern Maine for about 30 years and actually lived there for 12 years. We moved down the Poconos about 10 years ago. It's as cold here as it is in Maine!!

Thanks for your support!!

Joanne

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3 years 10 months ago #48125 by anicra
Sara Anne, My trip is for March 13. If I can start the BCG on this coming Wednesday, I will finish 2 days before my trip. I wish I knew how long it will take to get the BCG back in stock. I'm not really a "hurry up and wait" type of person!! LOL. I'm sorry you missed your trip to Africa - how exotic that seems. I have another trip planned to Disney World at the very beginning of July. My daughter and her family are going and since we just came back from there with our son and his family, I really want to go. Of course, that's another let's wait and see.

I'm complaining a lot about trivial things. I know my diagnosis is not bad at all and there are so many people who have it much worse. i need to remember that!!

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3 years 10 months ago #48124 by sara.anne
Joanne, unfortunately, I have become a "mini-expert" on having to change trip plans! I was booked on a trip to China which was supposed to start several weeks after I was diagnosed with high grade CIS. My uro did not want to wait two months to begin BCG so I had to cancel. Like you, fortunately, I had insurance.
Then two years ago the night before a friend and I were scheduled to leave for southern Africa her husband became seriously ill. She had to cancel. Again, since we both had insurance, she got her money back and my single supplement charge was covered!!

BUT do not cancel quite yet. Depending on exactly when you are going there is still time for the BCG to arrive and get in your treatments. IF you have to cancel, you have to do it.

Will be keeping fingers crossed that the BCG arrives SOON

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 10 months ago #48123 by slocapo
If I have learned anything with these surgeries and treatments… is go easy!
I am on vacation now from my TURB Dec 23rd and I really thought I was ready for bike rides and golf… and I was …. my little bladder was not..

Go on vacation… but just go easy on your bladder… drink lots of water too.

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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3 years 10 months ago #48120 by anicra
Sara Anne,

I can't thank you enough for your informative reply. After reading your answers yesterday, I sat down and cried. My husband asked what was wrong so I had him read your reply. I so totally understand your words and they make so much sense. I think they were tears of relief and finally getting a someone to listen to me. Although my doctor is right on with his diagnosis, he is a man of few words and I think because I don't have a long term relationship with him (yet), he is hard to read.

I'm also still recovering from having both my knees replaced at the same time. This is a brutal surgery and the recovery takes about a year. Being basically helpless for so many days and although I have had a remarkably smooth recovery, it still takes it's toll on the whole family, My husband has been taking care of me and doing everything for the first week weeks after the knees and I've been running to Physical Therapy and my doctor for what seems like forever. I was just getting my life back in order and then WHAM.

I usually take a head on approach to everything but now waiting for the BCG to be back in stock has again put me in this suspended life state. My husband as well as our very good friends have a cruise planned for mid-March. This has been planned for over a year. While I want to do this, I want the bladder cancer gone more. I am more than willing to cancel my trip - we do have insurance. I would feel bad about spoiling part of our friends vacation but health comes first and they understand that. When I found out about the BCG backorder, I asked the nurse to ask the doctor if I should cancel my vacation. I'd rather cancel it sooner than later. It's been 3 days and I have not heard an answer. I know it's trivial in the grand scheme of things but it's important to me and it's difficult not to feel anxious about the next few months.

Any way, I run on with my thoughts. Again, I thank you so much for your caring and understandable reply.

Joanne

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3 years 10 months ago #48113 by slocapo
you sound a lot like me!
I was told of this almost 3 years ago… I just finished with my 5 turb… surgery I call them.. on Dec 23rd
I am 56 and never even heard of bladder cancer!
Every 3 months I go into Boston to be checked. I have had 2 6 week treatments of BCG… last one was with the big backorder… I did finish… I am not sure if it makes it worse… Since my first round in Jan of 14 I ended up with more tumors… high grade 2 and 2 more surgeries…. Oh I could go on…. I am in Key West at the moment and ended up clotting so bad from what I though was healed enough to ride my bike and golf… I ended up in ER for 4 days

But I know of a good friend that had this once… over 5 years ago and it has never returned…

deep breaths… chin up… and write a blog… I did one and it helps for your memory as well…
Sandy Locapo

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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