Once the results of the upcoming tests are in, decisions will need to be made about where we go from here. Short of a HUGE miracle, E.'s fight against cancer will continue. Treatment may consist of more chemotherapy or even possibly surgery. (Radiation is no longer an option since he received his lifetime maximum.)
We were initially told that since E. was diagnosed as Stage IV, he was not a surgical candidate and would be treated with chemotherapy and radiation instead. After the completion of treatment, he could be re-staged and on a long-shot, if he were re-staged as a Stage III or lower, he could possibly become a candidate for surgery. We had heard conflicting reports if Esophageal Cancer was even curable, but the general consensus was that the only hope for "curing" this beast was surgery.
As you may remember, we met with a throacic surgeon and oncology team at UC Davis, who made it pretty clear that surgery was not an option for E. As we did further research, we discovered that while it was UC Davis' position not to operate on Stage IV cancer patients, that was not a universal protocol. Other hospitals and/or surgeons do in fact perform surgery on patients such as E.
The search to find good cancer hospitals is not an easy one. It is not as simple as googling "good cancer hospital." Hosptials are defined as "good" for various reasons, including treatments, physicians, research, surgeries, funding, education, etc; and a good hospital for breast cancer might not necessarily mean a good hospital for esophageal cancer. While the National Cancer Institute has a list of "designated cancer centers," there is nothing out there that breaks it down more specifically. For E., we wanted to find a good hospital with a good physician to possibly perform a good surgery . . . all in regards to esophageal cancer. Hmmm.
Basically we read a lot about and talked to other esophageal cancer patients. If money and distance were not an option, E. would undoubtedly be headed to Sloan Kettering in New York. To keep things more west coast, we heard good things from other esophageal cancer patients about the following . . . City of Hope in Duarte, California (near Los Angeles), Mayo Clinic in Scottsdale, Arizona (near Phoenix) and MD Anderson in Houston, Texas.
So, to keep some options open, we already began the referral process to these three facilities. We anticipate that we will soon need to make the decision to travel to one of these places. A consultation isn't the only thing under consideration. We need to think about down the road some as well . . . if E. does have surgery. The three mosts common types of surgery for esophageal cancer are the Ivor Lewis procedure, a Trans hiatal esophogectomy (THE) and a trans throacic esophogectomy (TTE) . . . all of which are a MAJOR ordeal. These surgeries are HUGE . . . long operating times, weeks of recovery in the hospital, weeks of recovery at "home" (before travel is allowed), more recovery at home, the potential for complications, etc.
As you can see, it is not just the matter of airfare to one of these locations. We need to research potential temporary housing options . . . for Peanut and I while E. is in the hospital and then somewhere for all three of us while E. recuperates until he can travel. A hotel stay for any lengthy period of time could prove to be costly. Staying with friends (or friends of friends) while it is just Peanut and I would probably be feasible, but less so once E. is discharged from the hospital . . . I don't imagine he'd be too comfortable in someone else's home. There was once mention of the possibility of a condo being loaned to us, but I don't know where that stands.
So, as much as I'm thinking aloud here, I'm also looking to pick your brains. What have you heard about these facilities? What do you know about these cities? What ideas might you have about housing options? What are your suggestions about transportation while there? Anything else you think we should be taking into consideration?
Again, the hospitals/locations currently being considered are:
* City of Hope near Los Angeles, California
* Mayo Clinic near Phoenix, Arizona
* MD Anderson in Houston, Texas
As always, your input, suggestions and ideas would be welcomed.
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Hi,
ReplyDeletejust read this post and now I'm thinking about how I can help you here.
As you maybe know, Siep had lymphoma and was treated in two of the three hospitals you mentioned.
First Mayo, this was our home base. We live about 45 mins (or less depends on traffic) from both the clinic and the hospital, and you'd have to visit both. I cannot say enough good things about Mayo. Very personal, nice rooms, real good and wonderful docters and nurses, always available.
As we lived close for us transportation and such was not a problem.
For the bone marrow transplantation they referred us to MD Anderson in Houston Texas. What first would be a three months stay, ended up being 9 months. We rented a small furnitured appartment nearby, transportation to the hospital provided. All good but really expensive. It worked for us because the insurance paid the rent of the appartment partly. There are some cheaper places around the hospital there where you can stay, and transportation to and from the hospital is usually included.
The MD Anderson itself was overwhelming. Huge. Cancer fabrics. Difficult to be there for me and my husband. No kids allowed inside the hospital, which was tough dealing with my three kids that were still little then.
Sandy, I live close enough to Mayo. We have two cars here. We can figure something out if you decide to come to Phoenix. My house is not huge, but we can make it work.
If there is anything you'd like to know, or anything that we can do, please let me know.
Tanja