bladder had to stay...next???

I'm sorry to have confused you all in regards to Marcus's new plumbing. My brain is taxed and not only did i misspeak, but I sometimes find it hard to retrieve words/thoughts. It may sound as though we haven't been dilegent in learning about all of this and that isn't at all true. We have asked many questions and looked for answers beyond what we've learned from the doctors. The doctor at the U of Iowa DID feel a hardness when he examined Marcus (up close and personal...) and that's who ordered the MRI with the coil that revealed the spread. We've learned that medicine isn't an exact science. We aren't rolling over and giving up but Marcus isn't even ready to read this site again so I can hardly put him on a plane tomorrow.

As for how Marcus has been. Hard to believe he had major surgery 9 days ago. Yesterday we went shopping (he did ride a chair - a highlight of the shopping) and out to lunch. Also took a walk in the neighborhood. Today he walked around the pool 7 times before he had breakfast. Friends from Grand Canyon came around noon and we sat in the shade and visited for an hour before we went out to lunch. We watched a movie tonight and now he's watching the news - it's 10:30! He has taken some Tylenol but nothing else for pain. Tomorrow he and his friend will drop we women off to get massages while they go to a place that sells Mexican furniture and other imports if he feels well. Otherwise they'll go out for lunch or sit in a park. Most of the day is resting, but excursions have been important. He's planning Thanksgiving dinner and the number is creeping up - 15 guests! It's what he wants and I can't see the harm. He'll find a place to rest when he needs it.

We are active people who will do all we can to reamin that way. I'll connect with Julie from Tucson - i posted a question to see if she lives here. Must quit - I can barely keep my eyes open...
Glad I wrote tonight. I hesitated - think I was feeling a little frustrated at the venue. You know, people writing about me and and making judgements is a bit hard to handle. Guess i'll build a bridge and get over it...
Thanks for your caring, even though it cuts. Peggy

OK Wendy where do we send the $50 bucks? I just got an email from Peggy. Marcus does indeed have the ileal conduit........but the old bladder still in him. Pat

I would be 50 bucks that Peggy, a newbie, just used the phrase Indiana pouch to refer to an ileal conduit/external pouch. A diversion was made but the bladder was left. That's not so unusual in this kind of sitation.

There's a lot of jargon and it's very confusing at first. For a while, actually!
w

Hi Patty,

PDT has been under investigation for Ta and T1 bladder tumors for about 15 yrs, we have a page on the site:
blcwebcafe.org/pdt.asp But I do not think there is yet any study on this approach for more advanced blc, unless it can target a specific metastasis, either under or on the skin. Or in the bladder if it's not too large...I'm not an expert or a doctor, but pdt is an interesting treatment worth asking about.

It is used for those with aggressive tumors as an alternative for cystectomy, but it still not a standard treatment. Some institutions do use it for blc, more so in Europe, I think. But as I said, I'm pretty sure it's for tumors that haven't invaded.

A relative had it for a lymph node metastasis that was in the groin, it did a good job of removing that cancerous spot but did leave a hole, and is not a cure in that setting.

Keep asking questions...
Wendy

What types of cancer are currently treated with PDT?

To date, the U.S. Food and Drug Administration (FDA) has approved the photosensitizing agent called porfimer sodium, or Photofrin®, for use in PDT to treat or relieve the symptoms of esophageal cancer and non-small cell lung cancer (7). Porfimer sodium is approved to relieve symptoms of esophageal cancer when the cancer obstructs the esophagus or when the cancer cannot be satisfactorily treated with laser therapy alone. Porfimer sodium is used to treat non-small cell lung cancer in patients for whom the usual treatments are not appropriate, and to relieve symptoms in patients with non-small cell lung cancer that obstructs the airways. In 2003, the FDA approved porfimer sodium for the treatment of precancerous lesions in patients with Barrett’s esophagus (a condition that can lead to esophageal cancer) (8).


What are the limitations of PDT?

The light needed to activate most photosensitizers cannot pass through more than about one-third of an inch of tissue (1 centimeter). For this reason, PDT is usually used to treat tumors on or just under the skin or on the lining of internal organs or cavities (3). PDT is also less effective in treating large tumors, because the light cannot pass far into these tumors (2, 3, 6). PDT is a local treatment and generally cannot be used to treat cancer that has spread (metastasized
Pat

Hello,

I am Marcus's sister in law, Peggy's sister. I've been researching other treatment directions for Marcus.

Has anyone heard of photodynamic therapy? I found some medical papers published on this treatment for bladder cancer. I know it initially was tested with earlier staged bladder cancer and wondered if advances have been made since then.

Patty