Surgery or no surgery?

LeesInReno
LeesInReno Member Posts: 5
edited March 2014 in Esophageal Cancer #1
My husband, Dan, was diagnosed this January with early stage squamous cell esophageal cancer, high up in his neck. After a successful chemo + radiation treatment, there seems to be no evidence of cancer. But the surgeon and gastrologist on our team are strongly recommending surgery. The scary part of this is the location of the tumor - it is close to the larynx. They are going to do a procedure on October 14th to place a tiny bead of gold right above the dead tumor in the esophagus, followed by an X-ray. If the bead is above the collarbone, then surgery would (supposedly) likely take out his voice box. If the bead is below the collarbone, the surgery would be more like the "standard" surgery.

I know I am worrying before that appointment, but we are wondering how necessary is any surgery. They can't prove there are any cancer cells still there, but they can't prove their aren't. The PET-CT scan looks good, with just a few light-ups.

So, my questions for those of you who are more experienced:

* Has anyone had a successful "high-up" surgery, with preservation of the larynx?
* What is your take regarding to have or to skip surgery?
* Finally, if we do go for the surgery, we have the option of going outside Reno, to UC Davis in California. Does anyone have experience with the Davis cancer center?

Thank you so much for any advice you can provide. I've been lurking on this site since I found it about February. Some great advice and some wonderful success stories. I have the philosophy that given any stats, we are just going to believe we are in the good part of those statistics!

Blessings and gratitude to everyone here.

Susan

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • BMGky
    BMGky Member Posts: 621
    #3
    After chemo and radiation,
    After chemo and radiation, PET scan show no cancer. Had surgery. Biopsy of removed esophagus showed cancer cells under the scar tissue. The oncologist stated that's the reason we do surgery. Last scan showed no evidence of disease.
  • dsmasters
    dsmasters Member Posts: 22
    #4
    Have the surgery
    I was diagnosed in Sept '09 with EC. I went through chemo and radiation and had a clean PET/CT in Feb 2010. Based on this info I opted not to have the surgery. In May 2010 I started having trouble swallowing again. Another EGD/PET/CT showed that the cancer was back but had not spread. I had the surgery in June 2010. They got all the known cancer out but opted for more chemo to be on the safe side. I rolled the dice once and almost lost. It is not worth the risk. The side effects from the surgery are nothing compared to the cancer coming back and spreading.
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    dsmasters said:

    Have the surgery
    I was diagnosed in Sept '09 with EC. I went through chemo and radiation and had a clean PET/CT in Feb 2010. Based on this info I opted not to have the surgery. In May 2010 I started having trouble swallowing again. Another EGD/PET/CT showed that the cancer was back but had not spread. I had the surgery in June 2010. They got all the known cancer out but opted for more chemo to be on the safe side. I rolled the dice once and almost lost. It is not worth the risk. The side effects from the surgery are nothing compared to the cancer coming back and spreading.

    Totally Agree!
    Hello and Welcome to our ec family. I am totally agreeing with all who have replied to you. Get that second opinion, and get that surgery done. Sooner than later! He has to have the surgery done to remove that tumor, so it does not come back in other areas of the esophagus, or elsewhere! Let us know how you are both doing. We will be praying and here for you!
    Tina
  • LeesInReno
    LeesInReno Member Posts: 5
    #7
    Tina Blondek said:

    Totally Agree!
    Hello and Welcome to our ec family. I am totally agreeing with all who have replied to you. Get that second opinion, and get that surgery done. Sooner than later! He has to have the surgery done to remove that tumor, so it does not come back in other areas of the esophagus, or elsewhere! Let us know how you are both doing. We will be praying and here for you!
    Tina

    Thanks, I needed that
    Wow - thanks everyone! I needed to hear all that from the real experts.

    Lots to think about now. I finally told Dan about this site and my posting, and I forwarded the link. I think we have some phone calls to make.

    William - thanks for the doctor's name. That helps a ton! We didn't want to necessarily go to whomever our Reno surgeon recommended down there (don't know who that would be). Wanted a fresh name, if possible, and Dr. Nyugen sounds perfect.

    I hear Davis is nice this time of year...

    Thanks all,
    Susan
  • Unknown
    Unknown
    #8
    LeesInReno said:

    Thanks, I needed that
    Wow - thanks everyone! I needed to hear all that from the real experts.

    Lots to think about now. I finally told Dan about this site and my posting, and I forwarded the link. I think we have some phone calls to make.

    William - thanks for the doctor's name. That helps a ton! We didn't want to necessarily go to whomever our Reno surgeon recommended down there (don't know who that would be). Wanted a fresh name, if possible, and Dr. Nyugen sounds perfect.

    I hear Davis is nice this time of year...

    Thanks all,
    Susan

    This comment has been removed by the Moderator
  • LeesInReno
    LeesInReno Member Posts: 5
    #9
    unknown said:

    This comment has been removed by the Moderator

    Dr. Nguyen
    Hi William,

    It looks like Dr. Nguyen is now at UC Irvine. At any rate, I've started the ball rolling with UC Davis, with a Dr. Tom Cooke. I haven't found any reviews on him, but he seems very experienced. I haven't found if he is an expert on MIE, but I will try to find out.

    Thanks,
    Susan
  • LeesInReno
    LeesInReno Member Posts: 5
    #10
    LeesInReno said:

    Dr. Nguyen
    Hi William,

    It looks like Dr. Nguyen is now at UC Irvine. At any rate, I've started the ball rolling with UC Davis, with a Dr. Tom Cooke. I haven't found any reviews on him, but he seems very experienced. I haven't found if he is an expert on MIE, but I will try to find out.

    Thanks,
    Susan

    Update
    We visited the UC Davis surgeon (Dr. David Cooke) for a second opinion. Thought I'd send out the update of what we heard, for others' reference. We still haven't met with our Reno surgeon for the 1st opinion, but we will also hear what he has to say.

    First of all, Dr. Cooke estimated the stage of what was Dan's cancer: T2(or3) N0(or1) M0. These numbers evidently equate to an overall stage estimate of Stage II or III.

    The location of the tumor (now scar tissue), is above the clavicle. Since it is in the neck, they refer to it as being cervical esophageal carcinoma. The type of cancer is squamous cell carcinoma. This type and location of cancer occurs in only about 3% of all esophageal cancers. (Of 16,000 new cases each year, only about 500 are of the type that Dan had.) This type of cancer is caused by drinking and smoking.

    The paradigm for treating this kind of cancer is chemotherapy and radiation. That did do the trick for Dan.

    Some of the PET scans still show some activity. But this activity can be due to inflammation and healing. For some people, PET scans show no activity, and yet there can still be cancer cells there. The biggest benefit of getting a PET is to make sure there is no metastasis. Dan has none.

    There are three types of outcomes for Dan, according to Dr. Cooke:
    1. He has been cured. Unlike some other cancers, this type of cancer does have a history of actually being cured with chemo and radiation.
    2. The cancer could come back in the same place.
    3. The cancer could come back in various places (metastasis).

    The only way to really guarantee the cancer won't come back is to remove the tumor. To do this, a neck surgeon would have to do the surgery. The location of the tumor is right next to the voice box. There is a 95% chance that the voice box would have to be removed also. There is a 5% chance that the voice box could be saved, but the surgeon wouldn't know until he's in there to see if this is really possible.

    Finally, Dr. Cooke offered his opinion on this case. He recommends no surgery and continued surveillance (endoscopy with biopsy every six months). He said Dan could get the surgery if he wants. If so, then he would recommend a very good UC Davis neck surgeon, Dr. Paul Donald. Dr. Donald would be the primary surgeon, and Dr. Cooke would assist.

    It is our opinion that this is a good opinion. Either way, we are dealing with risk. Either we skip the surgery, and pray that Dan is already cured (risking a recurrence), or we go with the surgery that has a very good probability of an unpleasant (e.g., voiceless) outcome. We are going with the wait and watch.

    I think Dan's cancer is different from most of everyone's on this forum, because his is in the neck. The squamous cell cancer acts a bit differently from the adenocarcinoma that is more usually in the lower esophagus. If Dan had that type of cancer, he said he would go for that surgery without question.

    Anyway, we'll see what the other guy says and go from there. I hope this is useful for anyone else with eso cancer in the neck.

    - Susan
  • cjmac49
    cjmac49 Member Posts: 100
    #11
    LeesInReno said:

    Update
    We visited the UC Davis surgeon (Dr. David Cooke) for a second opinion. Thought I'd send out the update of what we heard, for others' reference. We still haven't met with our Reno surgeon for the 1st opinion, but we will also hear what he has to say.

    First of all, Dr. Cooke estimated the stage of what was Dan's cancer: T2(or3) N0(or1) M0. These numbers evidently equate to an overall stage estimate of Stage II or III.

    The location of the tumor (now scar tissue), is above the clavicle. Since it is in the neck, they refer to it as being cervical esophageal carcinoma. The type of cancer is squamous cell carcinoma. This type and location of cancer occurs in only about 3% of all esophageal cancers. (Of 16,000 new cases each year, only about 500 are of the type that Dan had.) This type of cancer is caused by drinking and smoking.

    The paradigm for treating this kind of cancer is chemotherapy and radiation. That did do the trick for Dan.

    Some of the PET scans still show some activity. But this activity can be due to inflammation and healing. For some people, PET scans show no activity, and yet there can still be cancer cells there. The biggest benefit of getting a PET is to make sure there is no metastasis. Dan has none.

    There are three types of outcomes for Dan, according to Dr. Cooke:
    1. He has been cured. Unlike some other cancers, this type of cancer does have a history of actually being cured with chemo and radiation.
    2. The cancer could come back in the same place.
    3. The cancer could come back in various places (metastasis).

    The only way to really guarantee the cancer won't come back is to remove the tumor. To do this, a neck surgeon would have to do the surgery. The location of the tumor is right next to the voice box. There is a 95% chance that the voice box would have to be removed also. There is a 5% chance that the voice box could be saved, but the surgeon wouldn't know until he's in there to see if this is really possible.

    Finally, Dr. Cooke offered his opinion on this case. He recommends no surgery and continued surveillance (endoscopy with biopsy every six months). He said Dan could get the surgery if he wants. If so, then he would recommend a very good UC Davis neck surgeon, Dr. Paul Donald. Dr. Donald would be the primary surgeon, and Dr. Cooke would assist.

    It is our opinion that this is a good opinion. Either way, we are dealing with risk. Either we skip the surgery, and pray that Dan is already cured (risking a recurrence), or we go with the surgery that has a very good probability of an unpleasant (e.g., voiceless) outcome. We are going with the wait and watch.

    I think Dan's cancer is different from most of everyone's on this forum, because his is in the neck. The squamous cell cancer acts a bit differently from the adenocarcinoma that is more usually in the lower esophagus. If Dan had that type of cancer, he said he would go for that surgery without question.

    Anyway, we'll see what the other guy says and go from there. I hope this is useful for anyone else with eso cancer in the neck.

    - Susan

    Head and Neck Cancer Discussion Board
    Susan,

    You might want to check into the Head and Neck Cancer Discussion board too as there might be more information about your Husband's type of cancer there.

    Good luck.
    Jim

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