A matter of time?
On 1/31 our worst fears were realized when the oncologist finally told us that the cancer had spread to her her scapula, humerus and lungs based on results of the MRI. The only thing left for us was palliative care so we began chemo consisting of 4 cycles (every other week) where she gets Cisplatin, (5FU) and Leucovorin and then we are supposed to get another scan after the fourth cycle to see how she is responding to chemo. She just finished her third cycle, and now her hair is falling out (yes we knew this would happen but it was traumatic anyway); but the drugs for the side effects seem to be working so far. I noticed she gets very puffy in the face after chemo and there is a distinct odor, but that must be the drugs or a byproduct of them. One thing I can say is I am glad for the feeding tube because I can push fluids through it and try to do 1 cup of water every hour until she has at least 24 ounces and even though she is still eating a little when she can I do the tube feeding at night as well. There's no way she could consume the amount of protein she needs otherwise.
So now with all the background, here's what I really want to get opinions on. I wonder if the oncologists suspected that she may be Stage 4 all along but the original scans just did not show the cancer. I would rather believe this and accept it than to hold on to anger, but was wondering if anyone who has experience with this may have some insight. She has had acid reflux for years and repeatedly told her doctor but she was never given any "real" treatment. She was told to avoid spicy foods, things high in acid, etc. and she took antacids constantly, so there were so many times that her doctors seemed to fail her, starting with her primary care physician. In the summer she started losing weight and experienced difficulty swallowing. Her doctor ordered an X-ray, and it took months to get her initial endoscopy (the wait was at least two months). Once we knew she had cancer I kept asking the oncologist when we would start chemo/radiation and didn't we need to move on this but he said we needed to keep testing to stage it properly. She was diagnosed in November, but chemo did not start until February. Does this seem out of the ordinary to anyone? I can't help but wonder if a couple months may have yielded a completely different outcome.
Thank you,
Stephanie
Comments
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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.
Angie0 -
Don't dwell
Hi Stephanie, sorry you found your way to this forum, but we all did too. I feel your frustration. I think a lot of delay was perhaps the fact that it was the holidays. Not for certain - just saying. My mom was diagnosed in August and started chemo/rads in September. They never staged her; just immediately started the battle against the beast.
I remember a panic attack when the doc said 2 weeks for something to happen. He said it will not spread that fast despite it being an aggressive cancer. I don't think your mom's delay caused her to go from a 2 to 3 to 4. My guess is they suspected something and went into search mode.
We were initially told no chemo, but after consulting with an expert in cancer research it was agreed to give her a low low dose of 5FU via 24/7 pump concurrently with radiation. This ended Jan 6th. Mom (85 in April) is not faring well, but we push on and on.
Just fight the current and future battle and let the past be past. Big big hugs to you and mom! Fight on!0 -
Thank youAngieD said: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
I don't want to be angry, and I really think they probably believed that the cancer had spread even though they could not see it. The surgeon who inserted my mom's feeding tube told us the cancer can be microscopic and some people who have the espophagectomy surgery find that the cancer comes back, because it was hiding all along. That is why they put so much emphasis on staging it before planning the surgery.
I will try to stay positive and let go of the anger, and focus on helping my mom and making her life joyful. Thank you, Angie!0 -
Insightful!Ginny_B said:Don't dwell
Hi Stephanie, sorry you found your way to this forum, but we all did too. I feel your frustration. I think a lot of delay was perhaps the fact that it was the holidays. Not for certain - just saying. My mom was diagnosed in August and started chemo/rads in September. They never staged her; just immediately started the battle against the beast.
I remember a panic attack when the doc said 2 weeks for something to happen. He said it will not spread that fast despite it being an aggressive cancer. I don't think your mom's delay caused her to go from a 2 to 3 to 4. My guess is they suspected something and went into search mode.
We were initially told no chemo, but after consulting with an expert in cancer research it was agreed to give her a low low dose of 5FU via 24/7 pump concurrently with radiation. This ended Jan 6th. Mom (85 in April) is not faring well, but we push on and on.
Just fight the current and future battle and let the past be past. Big big hugs to you and mom! Fight on!
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!0 -
Hi Stephaniestephikindred 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!
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
Freida0 -
No radiation eitherFreida said: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
Hi Freida,
We were told radiation was not an option either because the cancer had spread. We went through the radiation simulation, had her body all marked and taped up and had the appointment on the calendar and were prepared for radiation, but when the MRI results were in, we were told the only thing left was chemo and radiation appointments were cancelled. We were told it is moot to try to attack the esophagus with radiation when it is elsewhere as well. They told us the best thing is chemo because it will go everywhere in her system. It is interesting that others in stage iv are getting radiation. Maybe they feel that she would not tolerate it well.
I'm glad Bill didn't have the nausea. My best friends dad suffered horribly with it, but my mom is also doing well so far. This is her third cycle, and we remove the pump for the 5FU today. I hear that it typically gets worse over time though. I keep hoping it won't!
Hugs back to you!
Steph0 -
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.0 -
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.
--Jerry0 -
No biopsy?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
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 9/23/110 -
I agree, anything suspiciousBobHaze said: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
I agree, anything suspicious should be biopsied, and it should not be so difficult to get an endoscopy.
Getting an endoscopy was not easy for my mom. Instead of doing one right away when she had difficulty swallowing, her chest hurt, and she was losing weight, her primary care doctor started by taking an X-ray. When that came back unremarkable, he finally approved an endoscopy, but here in Albuquerque to get a endoscopy or a colonoscopy for that matter, you have to wait forever. There is no next-day procedure, no matter how serious the symptoms. Either there are not enough doctors to perform it, or too many patients here. I just don't get it. I knew it was bad when the doctor who did the endoscopy told us how inflamed it was, and the images were ugly. They biopsied two areas and both came back as cancer. I just wish it was caught sooner when we had more options. I'm so glad you are stage 1, Bob. I wish you all the best!
Stephanie0
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