Mets Day 512: Advice to fellow BC warriors

From time to time other people with bladder cancer will stumble across my blog and reach out to me, and we will engage in an email correspondence sharing thoughts about our common disease, and treatment options.  One example is a firefighter from North Carolina who was diagnosed with micropapillary bladder cancer.  A CT scan showed positive nodes outside of his bladder.  He went forward with a radical cystectomy

Yesterday he emailed me the following:

I have been following your blog. I read today's post and sounds like they are treating you well up there in Maryland.  Help me out here. I am 30 days post RC. Remember my DX was Micro 9 positive nodes, a lot like you. Met with Onco today, he says DDMVAC, he want to start after a CT In 3 weeks.  I am still over 20 lbs light, weighing in at a whopping 132. Can you imagine what I will look like after the treatments? My wife and I cannot see things worse than they are right now.  Maybe the CT will be useful but I am undecided as of yet on the chemo. The doc danced around every one of my percentage question, unable to get any real stat's.from him at all.  Speaks loudly to me that not much chance of a benefit. 

I responded with the following, which I am posting here because it may be of interest to other BC warriors:

The best thing that I could recommend is that you get a second opinion from a major cancer center.  See this link: http://cancerguide.org/second_opinion.html.  Cleveland Clinic has an on-line consultation option; Hopkins also has a second opinion offering that may not require travel.  MD Anderson wants you to travel to Houston.  I'm not sure about Sloan-Kettering in NY.  Oncologists at a major cancer center should be able to answer all of your questions.

Here is a list of great questions to ask your doctor, especially under section III.  http://blcwebcafe.org/content/view/101/111/lang,english/. Print them out and insist on answers.  Note than no doctor can say exactly what will happen to you, and most hate giving odds, but they should be able to tell you what the studies have shown.

Here is a good article about chemo options: http://blcwebcafe.org/content/view/116/126/lang,english/.  MVAC was the standard of care until around 2005.  Since then, many doctors have switched to platinum-based chemo, such as cisplatin.   A 2011 review article (available at http://www.ncbi.nlm.nih.gov/pubmed/22117153) says that "The first-line therapy is cisplatin-based chemotherapy with the response rate approximately 50%. Approximately 30-50% of the patients are unsuitable for cisplatin, and there is no standard of care for this patient population. There is no standard second-line treatment."  Are you a patient who is "unsuitable for cisplatin"?  If so, why?  MVAC is an older chemo regimen with more side effects than cisplatin.  Cisplatin is generally considered a better substitute than MVAC.

I think that this article at the Bladder Cancer WebCafe on metastatic cancer is very helpful:  http://blcwebcafe.org/metatcc.asp.  Note that this article is discussing secondary tumors, which you don't have (it's what I'm dealing with right now).

There is no established chemo regimen for patients like you (or me) who had positive nodes and are post-RC.  In other words, studies measuring whether or not adjuvant chemo helps have not shown a clear benefit. Maybe it works, maybe it doesn't.  Since I had failed my ne-adjuvant chemo, my docs didn't see a point to trying adjuvant chemo before I had any secondary metastases.  I don't remember if you already had neoadjuvant chemo - if you did, I would not be inclined to do adjuvant chemo.  If you didn't, then maybe it might be right.  That's got to be a decision between you and your docs.  Get a second opinion, ask lots of questions, then trust your gut.

You should start gaining weight in about 2 weeks (6 weeks post-RC). Your appetite should be coming back around now.  Take things one day at a time.  Remember that, until (and unless) your BC travels though your lymphatic system, latches onto another place, and starts growing, it's not going to hurt you.  That might happen in 6 months, it might happen in 15 months (like me), or it might never happen (about 12% of the time).  Enjoy each day that you have.

Metastatic bladder cancer is a strange and ferocious disease.  There is no proven treatment, and no cure.  Because there is little chance of a physical cure, the primary battle becomes psychological:  How will a BC warrior with mets choose to live?  What are your motivations?  What do you hope to accomplish?  Will you turn inward, withdraw, and give up?  Will you turn outward and seek to help others?  Will you make any changes?