New to this - how long does it usuallt take before treatment starts?

Wait time
Freida,
My husband was diagnosed with EC the first of October, 2010. Since we live in very south Texas we decided that the best place for us to seek treatment was at MD Anderson. We actually self referred on their website on the internet. We submitted our referral on Friday afternoon, and someone contacted us on Saturday morning to get his health info, insurance info, etc. They said someone would be contacting us by the end of the next week. We waited anxiously just like you, but when they called they had all their ducks in a row. We were given a list of appointments that spanned a little less than a week. After those appointments, we returned the following week for more tests and reports and a plan of treatment. My husband chose to begin his chemo treatments at MD Anderson, and we started the first of November. Dr. Jaffer Ajani has been my husband's oncologist at MD Anderson. From the beginning he has been very straightforward and honest with us. Since my husband was staged at Stage IV he told us that the cancer was inoperable and incurable, but that it was manageable for a time. As time went by and he completed one round of chemo and then a clinical trial, we arranged to have all our diagnostic work done at MD Anderson, and have Dr. Ajani prescribe Rickie's chemo and our oncologist at home administer it. This arrangement has worked out well for us. Please look at the links that Paul posted for you from MD Anderson and especially look at the videos that are posted there. I found them very helpful. MD Anderson is a wonderful place and the level of care there is fantastic. Presently we are waiting to see if Rickie qualifies for a targeted therapy under the direction of Dr. David Hong. Once you are seen at MD Anderson you will have access to all of your appointment times,test reports, clinical notes, etc. through their website. This makes it really easy and I have found it a great help. If you have any questions I will be happy to help as best I can.
Cheryl
Wife of Rickie, dx Stage IV EC, Oct. 2010
Mets to bones and brain

Freida said:

Hi JudyI had just posted on
Hi Judy
I had just posted on your post as your story sounds so close to mine.

My husband, Bill, was diagnosed on November 8th and we seem to be spinning our wheels. I have also spent many hours researching on the internet and it is just frightening. We feel confident that going to a major cancer center is the right decision, but my mind is spinning thinking of the logistics of it all, especially if we have to spend extended time in Houston.

My husband is 69 and retired and on medicare. He does have a supplemental plan which hopefully will help with this. I am a little younger (58) and have been going to school trying to finish an accounting degree in hopes of being able to work a few years to let our retirement savings rest and replenish a little.

Seems like this is going to be a huge life changer in so many ways. My best friend, whose son had cancer as an infant, keeps telling me "one day at a time". I think once we have some sort of plan n place and I can focus on that instead of looking at all the options and what ifs and maybes, maybe then I can do the one day at a time thing. Right now it is just hard to adapt to the sudden change in our lives and to accept that all out plans must change.

We are not staged yet either. As the PET scan said it is in one lymph node, it seems it is not as early as I had hoped. Bill does not have problems swallowing at this time so I had hoped this was at a very early stage. He had been having a burning feeling in his chest and had thought he had lung cancer, but when he told out doc she sent him to have the barret's rechecked.

Please keep me up to date and keep in touch.

Hugs
Freida and Bill

Sometimes it seems like getting started can take forever
Freida,

I know when I was first diagnosed I thought the month that it took to complete the tests and get a treatment plan started was way to long. But my medical team reassured me that two or three weeks to complete staging and get a treatment plan defined was not unreasonable. I, like most people I am sure, was afraid that the cancer was continuing to spread and every day was a chance for more metastasis.

While esophageal cancer is a dangerous form of cancer and time is of the essence; taking a few weeks to insure Bill has had a complete workup including the endoscopy, scans, and endoscopic ultra sound is time well spent.

Of course MD Anderson in Houston is one of the leading cancer centers in the US and one of the top four centers when it comes to expertise in esophageal cancer.

If at all possible I would see if you can get referred to an oncologist there named Dr Jaffer Ajani. He is a very caring and capable doctor.

Here are his specifics on vitals.com:

Dr Ajani Vitals Information

Of course if you have been doing research, I am sure you know by now that "curative" treatment for esophageal cancer typically includes a "tri-modal" therapy approach that includes chemotherapy, radiation therapy, and surgery.

Since Bill has some other health issues I would talk to your medical team about robodically-assisted minimally invasive esophagectomy (MIE). You will find a number of people here who had cardiac issues that had successful MIE surgeries.

Bill's additional weight will actually work in his favor. Most people who go through chemotherapy and surgery lose a significant amount of weight. Most of us had a tube installed at surgery in our small intestine so nourishment can be given via a pump for the first month or so after surgery because maintaining body weight is so critical post surgery.

In terms of accelerating the treatment definition process here are some suggestions that worked for me:

1. Get a copy of all test results completed to date and keep them in a folder. For the results of scans (like a CT scan) ask for a copy of the actual CD that contains the images.

2. If your primary care physician if managing the referral to MD Anderson ask them for a direct contact number for the medical oncologist to whom Bill is being referred. Call them to confirm the appointment and ask if there is any background workup information they still require.

3. Every time a test is scheduled or an appointment is made ask "Is that as soon as this can be completed"?

4. Create a file that contains all of Bill's medications, prior significant medical treatments and issues, and the contact information of all physicians that have seen him recently. You would be surprised how much time can be lost just because they have to locate the contact information for someone who did a test or interpreted the results of a test.

Here is a reference to MD Anderson's esophageal cancer information page:

MD Anderson's esophageal cancer information

I know that finding cancer in a lymph node outside the esophagus is frightening but as someone who had lymph node involvement; I can assure you that properly treated, as long as the node is adjacent to the primary tumor site, it can be addressed with the tumor. During surgery the surgeon typically removes anywhere from 8 to 30 lymph nodes adjacent to the tumor site.

This page will help you plan your initial visit including travel and lodging:

MD Anderson Travel and Lodging Information

I hope this information helps, you will find that the people on this board can answer about any question that may come up in relation to EC.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!