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Woman on a roller coaster with a bladder in the car behind her

What Now?

Two years ago, I was diagnosed with Bladder Cancer. While it has been a rollercoaster on top of my Lung Cancer, it has been manageable. I initially had tumors on the wall of my bladder, and a TURBT took care of it, followed by BCG. We immediately realized it was probably not safe for me to have BCG alongside my Opdivo since both are considered immunotherapies. There have been years and years of research on immunotherapy; however, upon further research by my medical team, it was determined there is no research pertaining to taking two immunotherapies simultaneously!

We didn’t know if you could take two immunotherapies at once

To be safe, we stopped the BCG immediately. In the three-month follow-up cystoscopy, we found more tumors. Again, another TURBT. This time, knowing I couldn’t have BCG, we went with the only other drug available which was Mitomycin. Unfortunately, I developed an immediate allergic reaction, so that was stopped, per protocol.

Scans every three months for the rest of my life

So, now where am I? According to my medical team, for the rest of my life, I will have cystoscopies every three months followed by a TURBT if necessary. I also get a CT scan every three months for my Lung Cancer. I feel as if I should be glowing in the dark. But, my future is now going to be uncertain. CT scans and cystoscopies. And hope we catch any progression early. At this point in my journey, I am not looking for a cure or to be NED (No Evidence of Disease). I just want each report to indicate no additional growth in both my lungs and my bladder.

Focusing on catching any progression early

Having any type of cancer can be a rollercoaster. There will be highs and lows, and we as patients need to adapt to these. Be happy with the highs and be a strong warrior with the lows. I know that is a difficult task to achieve, but I remind myself daily not to let the lows lower my mood. Instead of dwelling on the fact that I can no longer have treatment for my bladder cancer, I concentrate on the fact that the cystoscopy will catch anything before it can penetrate my bladder wall. I go for my treatments for my lung cancer, and again, I focus on the fact that even if there is any progression, it will be caught early since I go every three months for scans.

Stay on top of your physical condition

The moral of the story is to stay on top of your physical condition. Be an active participant in your treatment. Do what feels right to you. I have complete faith in my medical team. I listen and do virtually whatever they suggest – are you that comfortable with your team or do you leave your appointment saying, “What now?”

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Damnskippy
    2 months ago

    Also being someone who was given a bleak outlook for my bladder cancer I went way outside of traditional medicine. Though it’s gotten a lot of bad press lately, I use Rigvir, the cancer not only hasn’t advanced but it’s receded. We are each responsible for our decisions and for me…this is working and I’m back to a normal life and energy level.

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