Recently diagnosed & scared

3 years 5 months ago #60034 by DonaldK
Replied by DonaldK on topic Recently diagnosed & scared
RileyNH

Great news, I now I freaked out as I had to wait until my college finals were over before getting my first TURB, so for 5 weeks thought everything was going wrong. :)

As Sara Anne and Alan have said - keep looking at the positives. This is a highly treatable cancer and has great 5 year outcomes, there are many treatment options (BCG is by far the best out there in my opinion).

It's small steps, but definitely talk with both the ONCO and Primary care docs to help you though this.

Most oncology departments of a hospital have a whole host of help available (nutrition, social, psych, spiritual, etc.) - get the referrals and talk with them.

We are with you in spirit, keep checking in.

Ciao

Hi Grade T1 CIS

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3 years 5 months ago - 3 years 5 months ago #60012 by Alan
Replied by Alan on topic Recently diagnosed & scared
In all probability in 6 months, you will look back and it will simply be a bad memory or blip in the road. I am presuming BCG will be the final step and then go on with the rest of your life!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 5 months ago #60011 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
More good news!! Keep it coming!!]

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

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3 years 5 months ago #60010 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Hello everyone, after an excruciating weekend long wait we finally heard back on the full body PET scan this morning and no malignancy was found outside of the bladder. Because of the way PET is done the bladder collects the sugar injected and always lights up no matter if you had bladder cancer or not. I am overjoyed, and as you can tell from my posts did not expect this result. Now need to let that set in and let my body recovery from a long few weeks of high level of stress and anxiety. My 2nd TURBT is scheduled for 10/26 and hope to keep the role of good news coming. Thanks for the words along the way to keep me encouraged. I will keep posting and keep everyone updated as my battle continues to become cancer free.

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3 years 5 months ago - 3 years 5 months ago #60003 by Alan
Replied by Alan on topic Recently diagnosed & scared
It is one day at a time!!!!!!!! You won't know much until the PET scan is read. Let us know what they see or don't see.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 5 months ago #59999 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Trying real hard. Keep repeating the positives and the timeline;

8/22 blood in urine
8/26 ct scan only saw the bladder tumors
All my physical issues started after diagnosis
9/14 TURBT removed tumors. Non-muscle invasive
Symptoms include neuropathy, back pain on spine. Some lower back & flank pain, groin pain and swollen lymphnodes
9/23- primary didn't seem concerned about lymphnodes. Not sure he was truthful.
9/24 - back xray showed normal
10/8 - PET CT

Keep saying anxiety & stress are the majority of these issues. How could this possibly progress so fast?

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