New to this family...

auntof3
auntof3 Member Posts: 2
in Esophageal Cancer #1
Hi everyone,

My mom was diagnosed in December of 2009 with EC (adenocarcinoma - T1 N0 M0). She underwent chemotherapy and radation treatment, finishing her treatment in February. She's had clear PET Scans up until 2 weeks ago, where they discovered a hot spot.

She had another endoscopy done, and while they were in there, saw something that they went ahead and biopsied. That biopsy came back positive, but according to the PET scan, is limited to the one spot - there is no lymph node involvement, so that's encouraging.

She met with her oncologist today, and it was determined that she will need some sort of surgery, although that is yet to be determined. She's waiting for the authorization to take place. She is not a candidate for radiation, but will undergo chemotherapy again - I'm guessing they don't want to do radiation because of the prior radiation treatment? I'm a little unclear on that part...I'll try to get clarification from her tomorrow.

I'm waiting to hear back from her on who the surgeon is, but am starting to do some research on potential types of surgery. We're praying for the least invasive surgery for her (she'll be 81 in November) but I'm wondering if anyone has had experience with this staging and surgery?

My dad is going through his own set of health issues and decline -- so all of this feels like another punch.

I appreciate any advice that you all might have.

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
    Hi,
    Welcome to our family.
    Hi,

    Welcome to our family. Fasten your seat belt you will most likely be receiving lots of information. But if you could give us a few details so we can be more responsive to your inquiry?

    WWhere does she live and where is she being treated - any complicating health issues - why did you elect not to do surgery after the initial chemo and radiation? How did she do with the chemo and radiation and how is she feeling now?

    Where was the new spot found? What kind of cancer was it?

    I assume your mom is on Medicare - but does she have regular Medicare or did she sign up for one of those Medicare HMO's?

    Best of luck,
    Cindy
  • auntof3
    auntof3 Member Posts: 2
    #3
    unclaw2002 said:

    Hi,
    Welcome to our family.
    Hi,

    Welcome to our family. Fasten your seat belt you will most likely be receiving lots of information. But if you could give us a few details so we can be more responsive to your inquiry?

    WWhere does she live and where is she being treated - any complicating health issues - why did you elect not to do surgery after the initial chemo and radiation? How did she do with the chemo and radiation and how is she feeling now?

    Where was the new spot found? What kind of cancer was it?

    I assume your mom is on Medicare - but does she have regular Medicare or did she sign up for one of those Medicare HMO's?

    Best of luck,
    Cindy

    Hi Cindy,
    She lives in
    Hi Cindy,

    She lives in Phoenix, and is being treated by Dr. Rakkar. I'm not sure who her surgeon is - I hope to find that out soon. Absolutely no other health issues (she had a thyroid goiter removed about 20 years ago, and that's it), although during this scope, they found a hiatal hernia as well.

    Surgery was never once presented as an option -- there was no electing not to have it -- it was only chemo and radiation, and the doctor wanted to see how she did following that. All of her follow up scans/biopsies were clear...we felt okay with the plan that he had. The new spot was found in the same area (not sure if it's the same spot or nearby) as her initial cancer.

    She did "okay" with the chemo -- had some issues with low white cell counts, and received Neulasta(?) to improve things. She also had to have a blood transfusion about halfway through the chemo treatment. All told, she received 7 weeks of chemo. Radiation was rough - she ended up with somewhat of an ulcer where the radiation happened -- the doctor put her on something that coated the ulcer, and she did very well after that.

    Her insurance is through Secure Horizons - I don't know that I've ever heard her mention Medicare, to be honest.

    Although she's not "newly" diagnosed, it feels new now that surgery is on the table. Just trying to make sense of everything. We'll know more when she sees the surgeon, whenever that might be.

    Thanks,
    Tracie
  • Unknown
    Unknown
    #4
    auntof3 said:

    Hi Cindy,
    She lives in
    Hi Cindy,

    She lives in Phoenix, and is being treated by Dr. Rakkar. I'm not sure who her surgeon is - I hope to find that out soon. Absolutely no other health issues (she had a thyroid goiter removed about 20 years ago, and that's it), although during this scope, they found a hiatal hernia as well.

    Surgery was never once presented as an option -- there was no electing not to have it -- it was only chemo and radiation, and the doctor wanted to see how she did following that. All of her follow up scans/biopsies were clear...we felt okay with the plan that he had. The new spot was found in the same area (not sure if it's the same spot or nearby) as her initial cancer.

    She did "okay" with the chemo -- had some issues with low white cell counts, and received Neulasta(?) to improve things. She also had to have a blood transfusion about halfway through the chemo treatment. All told, she received 7 weeks of chemo. Radiation was rough - she ended up with somewhat of an ulcer where the radiation happened -- the doctor put her on something that coated the ulcer, and she did very well after that.

    Her insurance is through Secure Horizons - I don't know that I've ever heard her mention Medicare, to be honest.

    Although she's not "newly" diagnosed, it feels new now that surgery is on the table. Just trying to make sense of everything. We'll know more when she sees the surgeon, whenever that might be.

    Thanks,
    Tracie

    This comment has been removed by the Moderator
  • K_ann1015
    K_ann1015 Member Posts: 500
    #5
    my dad-similar situation
    Hi---I am wondering what stage your mom was initially--because if she was stage 4 that may explain the chemo--radiation for treatment--without surgery.

    My dad--70 at the time was diagnosed 8/09 with stage 3 adenocarcinoma EC at esophagus-stomach junction. He was/is a non smoker, non-drinker & never overweight. He was treated at Duke with a clinical trial of chemo radiation and then esophagectomy 12/09 with follow up chemo a few months later.

    He had been NED until recently where they found 1cm "nodule" (their term) on his left lung---turned out to be EC.

    So---if they found a hot spot---the surgery will totally depend on the type & location the cancer found. They may elect to do a biopsy, but with an EC history I think they assume the worst & are more aggressive.

    Is there any way you or a friend or other relative can go with her for her upcoming appointments? My parents were totally overwhelmed & had no idea the appropriate questions to ask & if they did---did not feel comfortable doing so. Even if someone had a notebook of questions to remind someone in the group to ask...

    just a suggestion

    If not--maybe there is a way the Dr she meets with (surgeon or oncologist) can agree to speak to you over the phone. To do this, your parents will need to sign a special release form, so that you have access to her medical information if needed. Otherwise the physician is not legally allowed to speak to you about her condition!

    Good luck--try to speak to the dr if you can--there are alot of questions to ask--We all can help more with that if you'd like.
    Kim
  • Unknown
    Unknown
    #6
    K_ann1015 said:

    my dad-similar situation
    Hi---I am wondering what stage your mom was initially--because if she was stage 4 that may explain the chemo--radiation for treatment--without surgery.

    My dad--70 at the time was diagnosed 8/09 with stage 3 adenocarcinoma EC at esophagus-stomach junction. He was/is a non smoker, non-drinker & never overweight. He was treated at Duke with a clinical trial of chemo radiation and then esophagectomy 12/09 with follow up chemo a few months later.

    He had been NED until recently where they found 1cm "nodule" (their term) on his left lung---turned out to be EC.

    So---if they found a hot spot---the surgery will totally depend on the type & location the cancer found. They may elect to do a biopsy, but with an EC history I think they assume the worst & are more aggressive.

    Is there any way you or a friend or other relative can go with her for her upcoming appointments? My parents were totally overwhelmed & had no idea the appropriate questions to ask & if they did---did not feel comfortable doing so. Even if someone had a notebook of questions to remind someone in the group to ask...

    just a suggestion

    If not--maybe there is a way the Dr she meets with (surgeon or oncologist) can agree to speak to you over the phone. To do this, your parents will need to sign a special release form, so that you have access to her medical information if needed. Otherwise the physician is not legally allowed to speak to you about her condition!

    Good luck--try to speak to the dr if you can--there are alot of questions to ask--We all can help more with that if you'd like.
    Kim

    This comment has been removed by the Moderator

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