Newly diagnosed - so many questions
daffodilz
Member Posts: 7
Hi everyone,
I am new here - with some information and many questions.
12/7 my husband had a EGD - a mass was found in the lower 1/3 of his esophagus. Tissue was taken for biopsy. Cancer suspected. At a minimum, surgery required to remove affected area of esophagus. Referred to surgeon.
12/14 saw surgeon who gave us biopsy result: high-grade dysplasia. Still cancer suspected. Need definitive diagnosis to determine if chemo / radiation required before surgery. Referred for Endoscopic Ultrasound (EUS).
12/16 EUS - mass is 2" long by 1". Tissue taken for biopsy. Three enlarged lymph nodes - biopsy samples taken. Two are OK, one needs more study - N1 or N0. Doctor says mass can only be cancer - nothing else can produce a mass like this. Mass has gone through several layers of the esophagus - T3. Waiting for biopsy result. Doctor says N1 vs N0 is not important at this point. The T3 is important because it means that surgery is still an option (apparently not when it gets to T4). Next step - CAT / PET scans to check for other affected areas.
Questions (will be asked to doctors as well):
- how can a mass grow this large without symptoms? First symptom - heartburn 10/19.
- from the photos, looks like the mass is almost completely blocking the esophagus - how is it possible that my husband is eating normally (occassional "hiccup" when food gets caught)?
- we know the size as of 12/16 - how fast can it grow before treatment?
- what will happen if it grows to completely block the esophagus (what symptoms will my husband have)?
- how do we find the right doctors? should we be choosy about who does CAT / PET scans? how do we know we have the oncologist? how do we know we have the right surgeon? Doc that did the EUS is new in town so doesn't know anyone locally?
- at what point do we need second opinion? just for surgery or for pre-treatment also?
- surgeon we've seen would do "open" surgery to remove part of esophagus and part of stomach - why remove part of stomach if it is not affected?
- surgeon does 12 of these per year - is that enough? EUS doctor said that success of surgery is directly related to the experience of the surgeon - so what number are we looking for to know that a surgeon is experienced enough?
- I'm in TOLEDO - big cities nearby DETROIT - 1 hour, ANN ARBOR (Univ of Michigan) - 45 min, CLEVELAND (Cleveland Clinic)- 2 hours.
- what other questions should I be asking prmiary care physician, surgeon, gastroenterologist, oncologist?
- EUS doc mentioned "standard of care" dictates chemo / radiation followed by surgery. Does this mean that the chemo / radiation treatment would be the same regardless of oncologist - or would different oncologists use different treatments?
- any suggestions for keeping organized? I've started a notebook. Getting copies of all reports. Taking notes at each appointment - adding to Word document after each one.
Thanks so much for your help. I'm sure I will have other questions as we get further along this journey.
Pat
I am new here - with some information and many questions.
12/7 my husband had a EGD - a mass was found in the lower 1/3 of his esophagus. Tissue was taken for biopsy. Cancer suspected. At a minimum, surgery required to remove affected area of esophagus. Referred to surgeon.
12/14 saw surgeon who gave us biopsy result: high-grade dysplasia. Still cancer suspected. Need definitive diagnosis to determine if chemo / radiation required before surgery. Referred for Endoscopic Ultrasound (EUS).
12/16 EUS - mass is 2" long by 1". Tissue taken for biopsy. Three enlarged lymph nodes - biopsy samples taken. Two are OK, one needs more study - N1 or N0. Doctor says mass can only be cancer - nothing else can produce a mass like this. Mass has gone through several layers of the esophagus - T3. Waiting for biopsy result. Doctor says N1 vs N0 is not important at this point. The T3 is important because it means that surgery is still an option (apparently not when it gets to T4). Next step - CAT / PET scans to check for other affected areas.
Questions (will be asked to doctors as well):
- how can a mass grow this large without symptoms? First symptom - heartburn 10/19.
- from the photos, looks like the mass is almost completely blocking the esophagus - how is it possible that my husband is eating normally (occassional "hiccup" when food gets caught)?
- we know the size as of 12/16 - how fast can it grow before treatment?
- what will happen if it grows to completely block the esophagus (what symptoms will my husband have)?
- how do we find the right doctors? should we be choosy about who does CAT / PET scans? how do we know we have the oncologist? how do we know we have the right surgeon? Doc that did the EUS is new in town so doesn't know anyone locally?
- at what point do we need second opinion? just for surgery or for pre-treatment also?
- surgeon we've seen would do "open" surgery to remove part of esophagus and part of stomach - why remove part of stomach if it is not affected?
- surgeon does 12 of these per year - is that enough? EUS doctor said that success of surgery is directly related to the experience of the surgeon - so what number are we looking for to know that a surgeon is experienced enough?
- I'm in TOLEDO - big cities nearby DETROIT - 1 hour, ANN ARBOR (Univ of Michigan) - 45 min, CLEVELAND (Cleveland Clinic)- 2 hours.
- what other questions should I be asking prmiary care physician, surgeon, gastroenterologist, oncologist?
- EUS doc mentioned "standard of care" dictates chemo / radiation followed by surgery. Does this mean that the chemo / radiation treatment would be the same regardless of oncologist - or would different oncologists use different treatments?
- any suggestions for keeping organized? I've started a notebook. Getting copies of all reports. Taking notes at each appointment - adding to Word document after each one.
Thanks so much for your help. I'm sure I will have other questions as we get further along this journey.
Pat
0
Comments
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William - Thank Youunknown said:This comment has been removed by the Moderator
THANK YOU!
After I posted this morning we got scheduled for PET/CT Tuesday (12/21) afternoon. Meet with ordering physician for results on Wednesday. Biopsy results are available, but can't get them from the nurse. Waiting for call from EUS doc for biopsy and lymph results. Possibly tonight yet. If biopsy shows cancer (probable), then I think we need to get referred to an oncologist right away. I want to start zapping this thing before it gets any bigger.
Pat0 -
thank you for your committmentunknown said:This comment has been removed by the Moderator
you are right William! I think this one broke the length record!!!! But--I think Pat will appreciate!
thanks for your commitment to these new EC patients and by the way! Merry CHRISTmas to you & Loretta!
kim0
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