A matter of time?

Oh, Stephanie, welcome to
Oh, Stephanie, welcome to the group none of us wants to join. As I'm sure you know, hanging on to anger in non-productive. But, in all honesty, your saying, "In the summer she started losing weight and experienced difficulty swallowing," is the key that her doctors did fail her. They failed then and not following up on all the acid reflux issues before. I am so sorry. There are just so many doctors out there who are so ignorant on EC!! I know it doesn't help, but there are a number here who have been victims of these uninformed doctors, and we are all so angry about it. I'm sure others will chime in with advice. I'm praying for good results from the chemo with minimal side effects for your mother. I hope she and you can take one day at a time and enjoy each moment. Please don't let anger take away the good times and, hopefully, positive results to come.
Angie

stephikindred said:

Insightful!
Ginny, I think you are so right. The holidays for sure caused a lot of delays. Interesting that your mom started treatment right away! That is what I wanted to know, if others had to wait for staging before treatment. I see that is not always the case! But I also think they probably felt that it was stage 4 all along.

Thanks for the love and sharing your experience with me. Sending it back to you and your mom!

Hi Stephanie
What a horribly
Hi Stephanie
What a horribly frustrating experience this has been for you. I am so sorry you have had this experience at a time that is already so stressful and frightening.

We were also told that staging was important and we certainly experienced a certain amount of delay before treatment started, though not to the same extent as you guys. Bill's cancer was found November 8th when he went for a colonoscopy and a scope to check on his Barrets. He had a PET scan the following week. Things slowed down a bit then as, after meeting with a local oncologist and asking our family doctor's opinion, we decided to travel to M D Anderson for a 2nd opinion which took a little longer than I expected to arrange (I am sure thanksgiving in the middle had an impact). He had more testing done at MDA and was staged as a T3N2Mx but is not a surgery candidate because of other major health problems (or comorbidities as the medical professional cheerfully call them).

His chemo started at MDA the week after we arrived there. It was actually delayed a fews days because of a little 3 day side trip to another hospital with a suspected heart attack, but started the 16th of December. He had 2 months of chemo then started 6 weeks of combined chemo/radiation. I thought the wait was unbearably long but we are now in the 3rd week of chemo/radiation having already completed 2 months of induction chemo. I find it quite shocking that you did not start any treatment for such a long time. Having said that, it seems unlikely that the stage would have changed from a 2 to a 4 so quickly.

Big hugs to you and your Mom. I hope she does well with the chemo and radiation. Bill was lucky with the chemo and did not suffer the nausea which was a huge relief. I hope your Mom fares as well.

Hugs
Freida

A Matter of Time
Stepanie:

I'm sorry to hear of the timing difficulties you and your mother experienced getting started in treatment. With EC it is so critical to move aggressively if there is good chance for a full cure. Good advocacy both by the patient and their caregiver is critical at every step. We don't know this going in, but your experience seems to me to really drive the point home.

I can only relate my own experience with this cancer, having been diagnosed on 8/11/11. I'd been experiencing periodic difficulty with food getting stuck halfway down and went to see my PCP, who has been "treating" me for reflux for over 2 decades. That treatment consists of a prescription for whatever medication my insurance plan decides to cover that particular year. So when I went to see him and described the symptoms, he wanted me to get an immediate endoscopy. I did two days later and when I "woke up" the doctor told my wife and I he thought he had found EC, though wouldn't be positive until the biopsies came back but that he wanted to do a CT scan if I had time that day and wanted me to get back to my doc right away and get a referral to a really good oncologist. The next day I was back at PCP's office and he told me he'd already called and talked to Dr. Kaplan who was expecting my call and wanted to see me right away. We called his office and were told they didn't have any 'new patient' appointments until the 26th. My wife was the one on the phone as we were walking down to get a copy of the CT scan to walk to the oncologist and surgeon (also a referral there and they wanted to see us as soon as possible). This was at 3:30 pm on a Friday. I listened as Mimi told the scheduler, "That's not what our doctor said. He said Dr. Kaplan wanted to see Donald right away and that seems like a really long time out. 5 minutes later we had a call back and the nurse had put us on the schedule for 6:00 pm on Tuesday evening. We also got an appointment with the surgeon for the same day, earlier in the afternoon after explaining to them what our PCP had said. By the time the 26th rolled around, I'd already had a CT scan, an MRI, a PET scan and several other tests and on the 29th I was admitted to Swedish Hospital for my first chemo treatment and had already commenced with radiation treatment. I had Stave IV cancer with at least one lymph node in my neck suspected to be cancerous, as well.

After three rounds of chemo and 25 radiation treatments, we went through another barrage of tests and it was ultimately decided that the tumor had shrunk dramatically and that I was a 'good candidate' for esophagectomy. How aggressively we wanted to approach the cancer was up to me at that point and weighing all the options, I elected to have the surgery, as soon as possible, while I was still reasonably strong and eating well. At 61, I was very actively physically (endurance bicyling of +/- 10,000 miles per year) and in really good shape.

On October 26th, I checked into the hospital for what was to be a 10-15 day stay. During surgery, though, I developed chyle leaks and it took 4 more surgeries to get that resolved, and I ended up spending 52 days in the hospital and left there 25 pounds lighter and very weak. Where I used to have tree trunks for thighs, I could no touch my middle finger and thumb at the meatiest part of my thighs. Throughout that stay, my wife was a constant advocate, meeting daily with the doctors when they came through on rounds and helping us make good decisions all along the way. Now, I was hospitalized over the Thanksgiving holiday and it seemed to me that every time we turned around during that hospital stay there was some long weekend we had to work around. My wife did a really good job of keeping everybody focused and tracking me. She also tracked with the nurses alot which helped with my quality of care there, also. I can't emphasize enough the importance of advocating for your own best treatment, doing your homework, studying options, discussing timing with the professionals and not simply accepting "we can see you in three weeks" as acceptable level of care for EC.

Based on what you said in your post I wonder if surgery would have even been an available option given the advanced nature of her disease, but you will never know. This is a very aggressive and fast moving cancer, but it sounds to me like she'd been having difficulty for some months before seeking treatment. I hope she has a good result from the treatment she receives and that she will recovery well.

jgwright said:

Already there...
On my PET scan in October, there was an uptake in my adrenals as well as some other places. The MRI didn't see anything to speak of there (although obviously I had cancer in my esophagus.)

After chemo and radiation I was getting ready for surgery and so they did a followup CT scan which showed that the masses in my adrenals had grown. And a needle biopsy came back positive, which means that I'm NOT Stage III, but Stage IV and surgery is not a viable option.

So the cancer had metastasized back in October, but it was small enough at the time it was overlooked. Such things do happen. The irritating thing in MY case is that the initial symptoms were back in April, but an endoscopy by a gastroenterologist wasn't done until OCTOBER. I had one done much earlier, but by a surgeon, and he didn't even do a biopsy. Arrrrgh.

--Jerry

No biopsy?
Arrrrrgh is right! I've read several times on this board about people who had a mass observed during an endoscopy but no biopsy was taken. WTF were the doctors thinking? They had you on the table with the tools down your throat looking, among other things, for exactly what they found, but they didn't take the time to identify adn quantify it? Incredible...

In my case, I was having my routine triannual scoping to look at my Barretts and he saw an area down near my stomach that he thought looked "ulcerated." He said he really thought it was just inflamation from the Omeprazole I'd been taking daily for 6 years, but he still biopsied it as a matter of routine, and it came back as Stage 1 EC. I just don't understand how they can NOT biopsy a suspicious mass! On the other hand, how many people have posted here that they couldn't even get their doctor to do the endoscopy?!?

In any event, I'm glad to hear you have a plan of action Jerry. Best of luck to you.

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11