Questions and very little information

cnorjm
cnorjm Member Posts: 2
edited March 2014 in Esophageal Cancer #1
Hi group- am new to this forum. Let me just put it all out there.
My mom emailed me the other morning to say that she had had an upper GI and biopsy and the results were "not good".
The GI doc said she had the "start" of a tumor in her esophagus and they could not operate because it would require they would have to take out the "entire" esophagus. (mind you I am an OR nurse and those two statements don't seem to make sense).
She has an appt with a radiation oncologist on the 29th of July. I will be traveling from Wyoming to Upstate New York to be with her.
She is 79 years old and doing fantastic after a bout with lymphoma in 2007- last Scans all negative. She is very active, eats well but my big concern is she starts this battle at 97lbs soaking wet!!
Her only symptom was a burning when drinking liquids and as many on this site have said- we expected reflux or some easily dealt with thing.
I am having her call her gastroenterologist to find out the pathology findings from the biopsy in the am. We are pretty scared even though we don't know exactly what we are dealing with. He told her he expected Radiation Therapy to be her treatment.
I would appreciate any info regarding treatment centers, experience with older patients etc. My mom said she is not ready to "quit" yet so we need to know where to start fighting.
Thanks and best wishes to all the survivors and the families supporting them!

Comments

  • kitten0385
    kitten0385 Member Posts: 248
    #2
    While I am sorry to hear why you had to find this site, I am glad you did. There are some wonderful people on here that can hopefully help answer your questions. As for there being the "start" of a tumor, I am curious as to why they could not operate. I was was diagnosed with stage 3 esophageal cancer and the tumor was about the size of a tennis ball, and I had surgery. My surgery did entail removing the entire esophagus. I know I am much younger though and not sure if age is playing a part in it. I'd suggest always seeking a second opinion if you are not happy with what you're hearing from your first doctors. I drive 4 and a half hours to go to a reputable hospital for all of my treatments/scans, etc. I go to the Mayo Clinic in Rochester, Minnesota. I have also heard a lot about MD Anderson in Texas. I'm sure there are reputable cancer centers close to your mom, and I'm sure someone else on this board can give you much more information than I can. I do know I didn't weigh a whole lot starting out, about 125, and I got down to 100 pounds, but have now gained a few back. I wish you the best of luck and hope you find the answers you're looking for!

    Cathy
  • szaboe
    szaboe Member Posts: 19
    #3
    Hello to cnorjm

    I think that Cathy is absolutely right!!
    if it does not feel right than seek another opinion, what could it possible hurt?? if there right there rigth, if there wrong you were right???
    Cathy is right that you have found this site....everyone is a great support and people need reassurance from fist hand people about things.

    Good luck with everything, trust in your instincts.


    eileen
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • cnorjm
    cnorjm Member Posts: 2
    #5
    unknown said:

    This comment has been removed by the Moderator

    thanks so much
    well today I have learned a little more and am so grateful for all the support and info here. I decided to get some information!
    I have been a surgical nurse for 25years so I had my mom sign the dreaded HIPPA form so I could call and get some info- I also had her pick up a copy of the pathology report from the biopsy my mom had done last week.
    So the news is cautiously optomistic- High Grade squamous displasia/squamous cell carcinoma in-situ. The biopsy demonstrates extensive dysplasia- no unequivocal invasion was identified.

    The doctor did call me back and told me it was a primary care doc who had pushed and pushed for the GI exam when my mother said-"something is not right in my throat" Thank God for a PCP that listens- she said to my mom you call that office and if you don't hear anything in 2-weeks call me back. I am sure she is responsible for what looks like an early diagnosis.
    My mom just had a CT scan 3months ago (a PET scan was ordered and insurance said "no" as a f/u to lymphoma in 2007) you have to wonder if it could have been picked up even then......Just an inkling of what we won't get under ObamaCare.....
    So I asked him the rationale for opting against surgery- he did not recommend because of her age (79) and thought the post-op issues with digestion, possible dilation etc. would negatively impact her quality of life? what do you guys think about that.
    We talked about what he thought the plan would be- and he said they had discussed ablation but if there was invasion into the layers of the esophagus they would only be treating superficially so thought the rad onc and onc docs would support radiationas a more aggressive treatment. I asked about combining with chemo which he also said they had discussed and would be up to the oncologist. Finally I said well what type of radiation- is TomoTherapy an option and knowing he is a GI doc he said "whats that?" So I know in the little town of plattsburg ny they don't have technology like that available.
    I called my mom and I will travel to NY next week to go to this appt with her and discuss treatment. I know she would have serious difficulty having to move to another state potentially and stay there for several weeks to get state-of-the-art treatment but...she is willing if it gives her hope to extend her life.
    Any thoughts, experiences and ideas would be welcome from those of you with so much medical info and personal experience with this disease
    Thanks again
    Jen
  • Unknown
    Unknown
    #6
    cnorjm said:

    thanks so much
    well today I have learned a little more and am so grateful for all the support and info here. I decided to get some information!
    I have been a surgical nurse for 25years so I had my mom sign the dreaded HIPPA form so I could call and get some info- I also had her pick up a copy of the pathology report from the biopsy my mom had done last week.
    So the news is cautiously optomistic- High Grade squamous displasia/squamous cell carcinoma in-situ. The biopsy demonstrates extensive dysplasia- no unequivocal invasion was identified.

    The doctor did call me back and told me it was a primary care doc who had pushed and pushed for the GI exam when my mother said-"something is not right in my throat" Thank God for a PCP that listens- she said to my mom you call that office and if you don't hear anything in 2-weeks call me back. I am sure she is responsible for what looks like an early diagnosis.
    My mom just had a CT scan 3months ago (a PET scan was ordered and insurance said "no" as a f/u to lymphoma in 2007) you have to wonder if it could have been picked up even then......Just an inkling of what we won't get under ObamaCare.....
    So I asked him the rationale for opting against surgery- he did not recommend because of her age (79) and thought the post-op issues with digestion, possible dilation etc. would negatively impact her quality of life? what do you guys think about that.
    We talked about what he thought the plan would be- and he said they had discussed ablation but if there was invasion into the layers of the esophagus they would only be treating superficially so thought the rad onc and onc docs would support radiationas a more aggressive treatment. I asked about combining with chemo which he also said they had discussed and would be up to the oncologist. Finally I said well what type of radiation- is TomoTherapy an option and knowing he is a GI doc he said "whats that?" So I know in the little town of plattsburg ny they don't have technology like that available.
    I called my mom and I will travel to NY next week to go to this appt with her and discuss treatment. I know she would have serious difficulty having to move to another state potentially and stay there for several weeks to get state-of-the-art treatment but...she is willing if it gives her hope to extend her life.
    Any thoughts, experiences and ideas would be welcome from those of you with so much medical info and personal experience with this disease
    Thanks again
    Jen

    This comment has been removed by the Moderator
  • kitten0385
    kitten0385 Member Posts: 248
    #7
    cnorjm said:

    thanks so much
    well today I have learned a little more and am so grateful for all the support and info here. I decided to get some information!
    I have been a surgical nurse for 25years so I had my mom sign the dreaded HIPPA form so I could call and get some info- I also had her pick up a copy of the pathology report from the biopsy my mom had done last week.
    So the news is cautiously optomistic- High Grade squamous displasia/squamous cell carcinoma in-situ. The biopsy demonstrates extensive dysplasia- no unequivocal invasion was identified.

    The doctor did call me back and told me it was a primary care doc who had pushed and pushed for the GI exam when my mother said-"something is not right in my throat" Thank God for a PCP that listens- she said to my mom you call that office and if you don't hear anything in 2-weeks call me back. I am sure she is responsible for what looks like an early diagnosis.
    My mom just had a CT scan 3months ago (a PET scan was ordered and insurance said "no" as a f/u to lymphoma in 2007) you have to wonder if it could have been picked up even then......Just an inkling of what we won't get under ObamaCare.....
    So I asked him the rationale for opting against surgery- he did not recommend because of her age (79) and thought the post-op issues with digestion, possible dilation etc. would negatively impact her quality of life? what do you guys think about that.
    We talked about what he thought the plan would be- and he said they had discussed ablation but if there was invasion into the layers of the esophagus they would only be treating superficially so thought the rad onc and onc docs would support radiationas a more aggressive treatment. I asked about combining with chemo which he also said they had discussed and would be up to the oncologist. Finally I said well what type of radiation- is TomoTherapy an option and knowing he is a GI doc he said "whats that?" So I know in the little town of plattsburg ny they don't have technology like that available.
    I called my mom and I will travel to NY next week to go to this appt with her and discuss treatment. I know she would have serious difficulty having to move to another state potentially and stay there for several weeks to get state-of-the-art treatment but...she is willing if it gives her hope to extend her life.
    Any thoughts, experiences and ideas would be welcome from those of you with so much medical info and personal experience with this disease
    Thanks again
    Jen

    Jen,

    William has given you some great information and advice! I definitely agree with him, I don't see why her age would be a big deal if a reputable thoracic surgeon thought it to be beneficial to have surgery. I did not have treatment prior to surgery, as the Endoscopic UltraSound did not show how large my tumor actually was, so I had follow up chemo and radiation. Also, dilation is really not that big of a deal, I had it done 3 times prior to surgery so I could swallow my food. Also, my grandfather, who was well into his 70s, had dilation done a couple times a year simply because his esophagus needed to be opened up so he could swallow...I believe it is a procedure done quite often for many that do not have cancer as well. If you are close to the hospital that William discusses, I would suggest driving the couple hundred miles to get opinions there...I know my few hundred mile trip is well worth it when it comes to my health. Good luck with everything!

    Cathy

Discussion Boards