Krista diagnosed - looking for help/guidance

t4sm5la4r

Yesterday, May 7, 2019, my wife, Krista, was diagnosed with squamous-cell esophageal cancer.

She had an endoscopy at Overlake Hospital in Bellevue, WA on May 2 due to difficulty swallowing food. 

Her GI (Dr. Wohlman) found nodules and did a biopsy, which confirmed cancer.

Overlake is working to get approval from Premera for tests (CT, PET, more involved endoscopy) to determine the size, stage, etc.

While she talked to them, I called the University of Washington (UW), as I read that their cancer specialists are top-notch.

UW said that they are multi-modal treatment (which I read is associated with an increased survival rate).

We set up an appointment with UW for May 23 where she will see a group of their doctors (surgeon, oncologist, and others).

What else should I be doing?

UW is supposed to be one of the best, but should I also be looking nationally - Mayo Clinic, Johns Hopkins?

Thank you for any guidance and advice,

Tom

 

Deathorglory

Hello

Hello Tom,

So sorry that you find yourself here.  You already seem to be on top of the single most important thing within your control, getting your wife to good hospitals and doctors.  All doctors and hospitals are not created equal.  50% are, in fact, below average.  Your wife deserves to be treated by the other half.  EC is not some sprained ankle that can be adequately treated at the hospital down the street.  You are looking for top of the line hospitals which is so important.  I know nothing of UW, but if your research is correct, then your wife is best served there.  An NCI designation is a good indicator of if a hospital is top shelf.  I'd start by looking for that.  Another thing to look into is getting a second opinion.  Even if it just confirms your initial diagn, getting your wife to good doctors at good hospitalsosis & plan, that can give you confidence that you're doing the right thing.  But it also may give a different picture.  

I have had adenocarcinoma, not squamous cell, so I can't speak to specifics of your wife's disease.  But as far as things you should be doing, make sure you take care of yourself.  If you beat yourself to death over a thousand little things, then you won't be able to care for your wife.  She'll need you strong & functional, so do what you have to do to be that for her.  Don't be afraid to take help from people.  If someone says they'll do anything you need, then don't be afraid to say, "we have all day doctors appointments on Thursday.  Will you please let our dog out?"  And if folks offer meals, take it.  The effort saved can be dedicated to more pressing things than cooking.  Those are just random examples, but I'm sure you get the idea.  

Again, sorry you find yourself here.

Best Wishes,

Ed

t4sm5la4r

Deathorglory said:

Hello

Hello Tom,

So sorry that you find yourself here.  You already seem to be on top of the single most important thing within your control, getting your wife to good hospitals and doctors.  All doctors and hospitals are not created equal.  50% are, in fact, below average.  Your wife deserves to be treated by the other half.  EC is not some sprained ankle that can be adequately treated at the hospital down the street.  You are looking for top of the line hospitals which is so important.  I know nothing of UW, but if your research is correct, then your wife is best served there.  An NCI designation is a good indicator of if a hospital is top shelf.  I'd start by looking for that.  Another thing to look into is getting a second opinion.  Even if it just confirms your initial diagn, getting your wife to good doctors at good hospitalsosis & plan, that can give you confidence that you're doing the right thing.  But it also may give a different picture.  

I have had adenocarcinoma, not squamous cell, so I can't speak to specifics of your wife's disease.  But as far as things you should be doing, make sure you take care of yourself.  If you beat yourself to death over a thousand little things, then you won't be able to care for your wife.  She'll need you strong & functional, so do what you have to do to be that for her.  Don't be afraid to take help from people.  If someone says they'll do anything you need, then don't be afraid to say, "we have all day doctors appointments on Thursday.  Will you please let our dog out?"  And if folks offer meals, take it.  The effort saved can be dedicated to more pressing things than cooking.  Those are just random examples, but I'm sure you get the idea.  

Again, sorry you find yourself here.

Best Wishes,

Ed

I followed your advice about researched NCI - It's a hit!

Hi, Ed,

Thank you so much for replying and your kind words.

In searching through the groups, I've been noting the "success stories" to pass along to Krista to keep her morale up.

I saw your remark about "It's been a bit of a roller coaster ride, but it looks like we've beaten back stage IV EC a second time."

That is so awesome. I know it's been hell for you, but you've made it!

I didn't know about looking for NCI.

From what I can tell on the www.cancer.gov site, Fred Hutchinson/UW is an NCI-designated cancer center.

Thanks for that info! This is yet more positive info to give Krista.

You mention having adenocarcinoma. From what her GI said - and I also read on cancer.org - what you beat is even worse than squamous-cell.

Needless to say, we're holding you out as our beacon of hope!

Totally agree on the part about keeping me strong to keep her strong.

So, instead of pacing the halls at night, I at least try to sleep, so that I take care of myself while comforting her and doing my research.

Thanks again for all your suggestions and guidance.

It's so appreciated!

Tom

 

t4sm5la4r

T2. Now we wait for the PET scan

From Krista's EUS, we now know that the tumor is T2. Since the scale runs to T4, I'm assuming that's a positive, but the UW GI who talked to us after the procedure said that we shouldn't read too much into it, and that the oncologist will be able to tell us more. We meet with him Thursday and will have a more complete picture when Krista has the PET scan.