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Diagnosed, removed, waiting on biopsy report

6 years 10 months ago #43193 by shihtzudaddy
Thanks for the replies. Sucking the joy out of things is a very good way to put it. Right now, 6 days from the 2nd scope and catheter for 5 days, he feels the urge to pee NOW. No BCG yet and he's having to jump and run. Is that normal?

We know his bladder if very spasmodic. Hard to believe it was in spasm while in surgery and fully drugged! Toby started reading this last night. I hope he will soon take the wheel here.

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6 years 10 months ago #43192 by CatherineH
Feeling tired may not mean you are necessarily depressed but that your body is just tired. Please give yourself permission to rest when you are really need to. That doesn't mean lay in bed and feel sorry for yourself (which we all have likely done in our more down moments), but give yourself some extra time to adjust to the stress of your diagnosis and the introduction of BCG into your system. You may have to adjust your activity level for a while and go/do at a slightly lessened pace.

It is hard to wrap your mind around the fact a doctor has said you now have bladder cancer. For a while, it sucks the joy out of nearly everything you do (at least it did for me). At some point in the near future, you will turn a corner and decide that BC is NOT going to get the best of you. You and Kathy will be a strong team and your doctor will do all she can to make sure your treatments do their job.

There is no magic diet that I know about that helps with BC. In the beginning I wondered about everything I started to eat... was it good for me, bad for me, did it contain harmful ingredients, etc. until I made myself crazy. Finally I settled on what Sara Ann just said... a generally healthy diet and lots of water.

Hope you're feeling much better very soon...
Catherine

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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6 years 10 months ago #43190 by sara.anne
I think you hit the nail on the head....depression. The tired feeling and "may as well give up and go to bed" are typical. You would do well to DO SOMETHING FUN...easier said than done, I know. But it is disturbing to have such a diagnosis and the better you feel the better you will be able to fight this.

Don't think that bladder cancer affects your taste buds, but when you do not feel good things do not taste good. Just be sure to eat a healthy diet and drink lots of water.

You will do fine.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 10 months ago #43189 by shihtzudaddy
Sara you are wonderful, as are others who take time to explain in clear terms. My doctor seems very up to date on making alterations to the BCG doses. I just can't get past the tiredness. Should I just give in and go to bed or should I try to do something so I don't end up in a depressive mode? How did you handle this?

After having the first surgery nothing tasted good. It's hard to find foods that appeal to me. Not sure if that has anything to do with having CIS or not. Is there a link to benifical foods for bladder cancer? Herbs?

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6 years 10 months ago #43188 by sara.anne
OK. We have a definitive diagnosis. As you said, you need to be careful in interpreting what you find on the internet. There is "carcinoma in situ" and then there is "carcinoma in situ." Yes, I typed in the identical terms there!. For example, with breast cancer there is even some debate as to whether carcinoma in situ is really cancer or just a "pre-cancerous" condition. In bladder cancer, it is TOTALLY DIFFERENT.

CIS is a high grade form of bladder cancer. Yes, it is still confined to the surface of the bladder, but has the potential to spread. The good news is that BCG can, in many cases, practically cure this. And BCG is very do -able...While it does have its issues, it is nothing like the chemotherapy given for other types of cancer. It is instilled directly into the bladder, whereas traditional chemo is given systemically and causes all kinds of side effects. If you look on this forum, under
"Non-invasive", there is quite a thread on BCG.

When I was finally diagnosed with CIS, the urologist told me that this diagnosis explained many of my symptoms, which included fatigue and a loss of weight. After a few BCG treatments, I started to feel better.

Sounds as if your uro is up on BCG treatments...she can reduce the dose significantly if it becomes a bit much. However, a reaction is what you want...it tells you that it is working to kick up your immune system. Hope she is considering maintenance treatments as well; research as shown that they do increase the effectiveness of the treatment.

You CAN do this. And you will feel better when the BCG treatments are over.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 10 months ago #43186 by shihtzudaddy
Admittedly I'm the wife of shihtzudaddy (shihtzumom - aka Kathy). I started this post and spoke for him and will continue to do so until he is ready to start typing. So let's continue as you are talking to shihtzudaddy - he's reading.

We met with the doctor yesterday and were told I have Carcinoma in Situ. I googled that to learn it means 'cancer that has stayed in place'. We have scheduled a CT Scan for next week. I will start in 3 weeks, on wednesdays, to get my first BCG regiment that will go 6 weeks. She will adjust as needed depending on how I do with the strength of BCG and general health.

Now I'm just tired, very tired. I'm 66 (typeO in the first post) and to 'on the go' to let this get me down - but I'm just to tired. I know stress is some of it. I see things I want to do but just can't get into anything.

Doc said if the BCG didn't do the trick she would add another dose of something with the BCG to give it an extra boost and maybe go another 6 weeks.

I have read about the burning, pain, etc with BCG but need to hear it from people who have experienced it and will be reading the forums. I know you must be careful not to read outdated or poorly documented information that will scare the life out of you.

Right now I just don't know what to feel, what to do. I can't just lay in bed because I'm tired.

We could really use words of wisdom, truth, facts, etc.
shihtzudaddy/mom

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