Please Help

Barysbuttercup

Esophageal Cancer HELP



My Husband was diagnosed at (T3 N1 Mo) in August tumor at GE junction 2.8cm inoperable he finished chemo Oct-22 and 28 rounds radiation ending November 2 on one medical document he wrote T3NoMX and another he wrote T3N1MO when ask he said there is no way of knowing for sure if its X or O ??? Why put it then.. during the last week of chemo/rad he was hospitalized for severe dehydration AFTER I placed a 2 am call to oncologist and was told to give him a Tylenol and call in the morning,immediately upon release I sought a surgeon to place a j-tube which has helped enormously with my husbands health the oncologist was very much against this., The Oncologist sent us for a ct scan because the pet/ct done before was useless the current ct done Monday says the TUMOR is now 6.2 cm and shows water around heart spots in lungs /kidney and something on his liver..NO one has explained any of this to us.....The oncologist then sent us for a second visits to the surgeon to make arrangements for surgery but the surgeon informed us he wants to wait until second week of January and for us to come back every 2 weeks between now and then to basically shake his hand again which we have gone twice already and paid to simply shake his hand. he also said that the size of the tumor could COULD just be scar tissue BUT the radiologist says its TUMOR, The oncologist also has us coming every 2 weeks for what I have NO CLUE, SO my question is this normal am I crazy? AND is there anywhere we can send all our info and have someone give us a straight answer? I'm so stressed and angry very tired of not getting any information and being treated like we don't have a right to know.

Kathylr

It's normal to a degree...
...but you are not crazy. The early phase of EC treatment seems to feature a lot of running around, bouncing between docs, docs disagreeing, hurry up and wait, more questions than answers, and so on. You may be suffering more of this b/c of the holidays approaching. In our experience (my husband was dx'ed last March Stage IV esophageal), the various docs on the "team" often disagree with one another.

You and your husband absolutely need to understand everything that's happening, why, what the plan is, the reasons for delays and so on. It shouldn't be, but you have to get very assertive sometimes--calling daily with your list of questions until you get answers you understand.

If I read your post correctly, your husband is a surgical candidate...but the tumor may have grown considerably during chemo. It's already been a month since his chemo/radiation ended and now the surgeon is wanting to wait until mid-January to operate. This chills me since EC is so very aggressive and can grow and spread so quickly. At the very least, I would find out why the surgeon wants to delay. It may have to do with resolving the concerns about spots seen on the new scan on kidney and liver--if the cancer has spread to these organs, as I'm sure you know, doing the surgery has no benefit to your husband.

I am so, so sorry you and your husband are going through all this. But I encourage you or your husband to call the docs, and be persistent until you get your questions answered to your satisfaction.

Kathy R.

Barysbuttercup

Kathylr said:

It's normal to a degree...
...but you are not crazy. The early phase of EC treatment seems to feature a lot of running around, bouncing between docs, docs disagreeing, hurry up and wait, more questions than answers, and so on. You may be suffering more of this b/c of the holidays approaching. In our experience (my husband was dx'ed last March Stage IV esophageal), the various docs on the "team" often disagree with one another.

You and your husband absolutely need to understand everything that's happening, why, what the plan is, the reasons for delays and so on. It shouldn't be, but you have to get very assertive sometimes--calling daily with your list of questions until you get answers you understand.

If I read your post correctly, your husband is a surgical candidate...but the tumor may have grown considerably during chemo. It's already been a month since his chemo/radiation ended and now the surgeon is wanting to wait until mid-January to operate. This chills me since EC is so very aggressive and can grow and spread so quickly. At the very least, I would find out why the surgeon wants to delay. It may have to do with resolving the concerns about spots seen on the new scan on kidney and liver--if the cancer has spread to these organs, as I'm sure you know, doing the surgery has no benefit to your husband.

I am so, so sorry you and your husband are going through all this. But I encourage you or your husband to call the docs, and be persistent until you get your questions answered to your satisfaction.

Kathy R.

The surgeon claims the
The surgeon claims the radiation is still working ..It ended 6 weeks ago which is why I don`t get it,And this is our second round of running around with these Doctors they put us through all this is Aug. I have called been nice rude angry they double talk us. We want to understand what the diagnosis is and if there is a plan what is it. I am in the medical profession and it seems to irritate the oncologist that I do question him he has in many case`s made snide remarks to my husband when I was`nt there. Along with the lack of caring or info this is finacially killing us which is making my husband want to give up.

sandy1943

Welcome, It doesn't sound
Welcome, It doesn't sound normal to me. At this point your husband should have had a pet scan to see if the cancer is anywhere but in the esophagus.
I was given a ct scan, and pet scan in the beginning at which time I was told I was T3N2M0.Two weeks after I finished chemo, I was given another ct scan which indicated shrinkage of the tumor. My surgery was scheduled two weeks later.
A good oncologists should always answer any questions. You do need a second opinion--NOW. Time is something you don't have. Where do you live? Are you using an experienced surgeon with lots of experience with EC?
Prayers, Sandra

Amjosmom

sandy1943 said:

Welcome, It doesn't sound
Welcome, It doesn't sound normal to me. At this point your husband should have had a pet scan to see if the cancer is anywhere but in the esophagus.
I was given a ct scan, and pet scan in the beginning at which time I was told I was T3N2M0.Two weeks after I finished chemo, I was given another ct scan which indicated shrinkage of the tumor. My surgery was scheduled two weeks later.
A good oncologists should always answer any questions. You do need a second opinion--NOW. Time is something you don't have. Where do you live? Are you using an experienced surgeon with lots of experience with EC?
Prayers, Sandra

Doesn't sound right...
There is someone that can help you. I will get his address so you can send your medical records there. He is a leading doc in EC. I will send you a message privately.

preacherchad

Welcom
I am with Sandra, this does not sound normal to me. I think we have all had unusual circumstances during our dx, but sounds like you are really getting the run around.

Where are you located? We have members from all over and could help you find an expert close to you.

You are among great people here, and we are ready to help you in any way.


chad

i35chica

HER2 Testing
Ensure he has been tested for HER2. My family member is Stage IV and HER2 positive. This must be known sooner versus later. Special drugs are required to combat the HER2. Unfortunately, the test was taken but took several weeks for the results. With this cancer, it only benefits to rule out HER2 early.

We understand the stress and anger. We have all been there. Keep up the good fight. This site is a great location for resources with great people willing to share their experiences.

Barysbuttercup

Kathylr said:

It's normal to a degree...
...but you are not crazy. The early phase of EC treatment seems to feature a lot of running around, bouncing between docs, docs disagreeing, hurry up and wait, more questions than answers, and so on. You may be suffering more of this b/c of the holidays approaching. In our experience (my husband was dx'ed last March Stage IV esophageal), the various docs on the "team" often disagree with one another.

You and your husband absolutely need to understand everything that's happening, why, what the plan is, the reasons for delays and so on. It shouldn't be, but you have to get very assertive sometimes--calling daily with your list of questions until you get answers you understand.

If I read your post correctly, your husband is a surgical candidate...but the tumor may have grown considerably during chemo. It's already been a month since his chemo/radiation ended and now the surgeon is wanting to wait until mid-January to operate. This chills me since EC is so very aggressive and can grow and spread so quickly. At the very least, I would find out why the surgeon wants to delay. It may have to do with resolving the concerns about spots seen on the new scan on kidney and liver--if the cancer has spread to these organs, as I'm sure you know, doing the surgery has no benefit to your husband.

I am so, so sorry you and your husband are going through all this. But I encourage you or your husband to call the docs, and be persistent until you get your questions answered to your satisfaction.

Kathy R.

WE are in Indiana I have
WE are in Indiana I have spent the day collecting his medical records and am surprised as some of what iv read that we were never told Im trying to get into the IU cancer center for a second opinion however they dont seem to want to answer the phone

Barysbuttercup

i35chica said:

HER2 Testing
Ensure he has been tested for HER2. My family member is Stage IV and HER2 positive. This must be known sooner versus later. Special drugs are required to combat the HER2. Unfortunately, the test was taken but took several weeks for the results. With this cancer, it only benefits to rule out HER2 early.

We understand the stress and anger. We have all been there. Keep up the good fight. This site is a great location for resources with great people willing to share their experiences.

He is Her negative > one
He is Her negative > one paper says Adenocarcinoma T3N1MO another letter the Doctor wrote to my Husbands comander says T3N1MX My husband is a Sgt in Army National Guard His Father died of the same type of cancer as did his Grandmother unfortunatly we only found this out 6 months ago

MartinG5602

For a second opinion
I would strongly suggest you GO to IU Cancer Center if at all possible and put your face in front of their face and ask kindly , plead, or beg for an appointment ASAP. We did this at Anderson and were seen in 2 weeks. Take all your records with you if you can go. It is so true that cancer doctors differ on approaches to treatments and surgery, even within the same center. Your road ahead is not easy but there are many here who hope to offer help.
Prayers for you both,
Barrie

Amjosmom

MartinG5602 said:

For a second opinion
I would strongly suggest you GO to IU Cancer Center if at all possible and put your face in front of their face and ask kindly , plead, or beg for an appointment ASAP. We did this at Anderson and were seen in 2 weeks. Take all your records with you if you can go. It is so true that cancer doctors differ on approaches to treatments and surgery, even within the same center. Your road ahead is not easy but there are many here who hope to offer help.
Prayers for you both,
Barrie

From Sherri
Where is this treatment taking place? If his original diagnosis was indeed stage III and contained inside the esophagus, your husband was a surgical candidaate. If the original has spread then unfortunately he will not be a candidate. What type of chemo and radiation is your husband on? How many rounds has he had? I would strongly suggest getting all of his records together and sending them to a top notch treatment center. Where are you located? Age?

Unfortunately, this disease spreads fast and it is imperative to get treatment at a highly experienced with Esophageal Cancer center. UPMC, Pittsburgh, Sloan Kettering, Johns Hopkins, MD Anderson, etc...

I am not sure if I am understanding this correctly but at first they said no surgery and now it has grown, "He needs surgery." Something is off here as well as this oncologists bed side manner. Severe dehydration is extremely dangerous and should be considered immediately, not "Take a Tylenol and see you in the morning!" You have a valid right to be aggravaated and NO this is not normal.

Sherri

paul61

Barysbuttercup said:

WE are in Indiana I have
WE are in Indiana I have spent the day collecting his medical records and am surprised as some of what iv read that we were never told Im trying to get into the IU cancer center for a second opinion however they dont seem to want to answer the phone

I would have your PCP call Indiana University IMACS
I would suggest you ask your primary care physician to use the Indiana University Cancer Center "IMACS" system medical referral telephone number. It is a service specifically designed to assist medical professionals in getting a referral to the appropriate physician at Indiana University.

Here is the link to the Indiana University web site:

Indiana University IMACS

Refer a Patient

To make a referral to the IU Simon Cancer Center, please call IMACS (Indiana Medical Access and Communication System), a toll-free, 24-hour direct line that gives you, the healthcare professional, and your office staff prompt access to more than 600 IU faculty physicians for clinical consultations, patient referrals, patient information or the latest research protocols. Simply call 317-916-3500 or 1-800-622-4989.

In addition to connecting you with more than 60 clinical specialties, IMACS can connect you to the Ruth Lilly Medical Library & Research Building, the IUPUI Medical Bookstore, the IU Alumni Association, and Continuing Medical Education.

IMACS physician resource specialists are trained professionals who will expertly direct your call, even if you are not certain whom to ask for. IU Health operates IMACS, and they follow detailed guidelines, established by our medical staff, to help you select the most appropriate person or area. So be sure to request an IU physician when you call.

IMACS specialists will stay with you on the line until your call is complete to ensure you receive the information you need. They can transfer your call to a different area or help you make multiple contacts with just one call.


How to use IMACS:

For emergency consultations or referrals, IMACS operates 24 hours a day, seven days a week.
For routine consultations, please call IMACS Monday - Friday from 7 a.m. until 7 p.m.


Use IMACS to:

- Consult with faculty physicians and make patient referrals.
- Obtain information about your patients and discuss the latest research and developments.
- Be connected promptly with the physician or area you specify.
- Obtain assistance in selecting the most appropriate physician or service.



I think this approach would get you to the correct medical team at Indiana University the fastest.


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
Three year survivor

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

Barysbuttercup

Amjosmom said:

From Sherri
Where is this treatment taking place? If his original diagnosis was indeed stage III and contained inside the esophagus, your husband was a surgical candidaate. If the original has spread then unfortunately he will not be a candidate. What type of chemo and radiation is your husband on? How many rounds has he had? I would strongly suggest getting all of his records together and sending them to a top notch treatment center. Where are you located? Age?

Unfortunately, this disease spreads fast and it is imperative to get treatment at a highly experienced with Esophageal Cancer center. UPMC, Pittsburgh, Sloan Kettering, Johns Hopkins, MD Anderson, etc...

I am not sure if I am understanding this correctly but at first they said no surgery and now it has grown, "He needs surgery." Something is off here as well as this oncologists bed side manner. Severe dehydration is extremely dangerous and should be considered immediately, not "Take a Tylenol and see you in the morning!" You have a valid right to be aggravaated and NO this is not normal.

Sherri

They told us they cant tell
They told us they cant tell 100% by the pet/ct if it has spread from day one of dx we were told t3n1mo

2,8 cm tumor of distal esophagus type adenocarcinoma the Dr who did the upper GI told me it was inoperable the oncologist gave the Military a dx of t3n1mx , The second ct done December 3 showed 6.2 and the surgeon says could be scar tissue I called the radiologist she said she saw tumor she wrote tumor. THE surgeon said because he THINKS it could be scar tissue and because the radiation supposedly is still working he wants to wait until second or third week in January to do surgery(IT MAKES NO SENSE)Radiation ended 6 weeks ago> The chem/rad doctors said they had to shrink the tumor when it was 2.8 my husband was allergic to the first chemo so they switched he did 5 rounds I believe and 6th could not do because of severe dehydration. he did 28 rounds of radiation finishing last 5 while an in patient at hospital. My husband just turned 52 he is military until the 2rd round of chemo he was jogging 2 miles a day/75 crunches 30 some odd push ups he WAS very physically fit. And yes dehydration is VERY serious when I called the nurse hot line I gave my husbands vitals(I'm a Dementia Practitioner our room has become a nursing station) I knew it was serious and he should be hospitalized she had the Dr call back and he was beyond rude I did report him he should not be on call if he cant wake up and be civil that goes with the job. OH and he did have an MRI in September however was only on his back because of a bulge I found (deteriorating disk) and shows no metastasizing.

Amjosmom

Barysbuttercup said:

They told us they cant tell
They told us they cant tell 100% by the pet/ct if it has spread from day one of dx we were told t3n1mo

2,8 cm tumor of distal esophagus type adenocarcinoma the Dr who did the upper GI told me it was inoperable the oncologist gave the Military a dx of t3n1mx , The second ct done December 3 showed 6.2 and the surgeon says could be scar tissue I called the radiologist she said she saw tumor she wrote tumor. THE surgeon said because he THINKS it could be scar tissue and because the radiation supposedly is still working he wants to wait until second or third week in January to do surgery(IT MAKES NO SENSE)Radiation ended 6 weeks ago> The chem/rad doctors said they had to shrink the tumor when it was 2.8 my husband was allergic to the first chemo so they switched he did 5 rounds I believe and 6th could not do because of severe dehydration. he did 28 rounds of radiation finishing last 5 while an in patient at hospital. My husband just turned 52 he is military until the 2rd round of chemo he was jogging 2 miles a day/75 crunches 30 some odd push ups he WAS very physically fit. And yes dehydration is VERY serious when I called the nurse hot line I gave my husbands vitals(I'm a Dementia Practitioner our room has become a nursing station) I knew it was serious and he should be hospitalized she had the Dr call back and he was beyond rude I did report him he should not be on call if he cant wake up and be civil that goes with the job. OH and he did have an MRI in September however was only on his back because of a bulge I found (deteriorating disk) and shows no metastasizing.

From Sherri
Is this at a VA Hospital? Why would they think its scar tissue? (If original tumor was 2.8, the scarring wouldn't show up as 6.2) Your husband needs a full body PET scan now to see what is going on with that original tumor. Yes radiation does continue to work for a while. but 6 weeks is ridiculous. Protocol is PET after treatment to see if he is surgical candidate. If PET reveals that the tumor is contained in the esophagus, then off to surgery they go. If the chemo did not work and the cancer continues to grow, a different chemo regimen should be given immediately to stop the spread.

What chemo was given and where is treatment. Another opinion is needed immediately. I am concerned that if these doctors do eventually go in surgically without proper staging, it would be a travesty.

This is just my opinion and I am not a medical doctor.

Sherri

5002dblane

Please Help
I myself is the primary caregiver of my husband who was diagnosed with Stage 2 Esophageal cancer in feb 2012. We go to IU Simon Cancer Center in Indianapolis and I don't have anything but just wonderful experience with the medical team. We were just there yesterday because the most recent PET CT scan showed a very slow growing lymph node. As my husband did not have pre and post operative chemotherapy due to his post operative health, and now he is stronger the doctors now immediately suggested radiation and chemo which will start in January. Yesterdays's consultation just encouraged us so much that we are back on out feet to fight this disease. Our onclogist last words were: this is only cancer. We are doing everything to cure this. Don't let it get you down. All in all, I am most thanksful that our God has continually bless us with good doctors, very supportive family and friends.