Back from Dad's post-treatment appointment with the surgeon. Not the news we were hoping to hear.

DanaMB3
DanaMB3 Member Posts: 98
in Esophageal Cancer #1
Seems as though all the treament that my dad went through did not work. The one large regional lymph node they were originally very concerned with got even larger. They also discovered a 2nd regional lymph node involved that they did not originally detect.
The surgeon ordered a full body PET scan to determine if the cancer has traveled elsewhere.
If it has NOT traveled, the surgeon will consult with the other surgeon who will handle the stomach portion of the surgery to detemine if they are able to operate on this large of an area. When we asked about the tumor on the espohagus itself, he said he was not able to detmine it's size from the CT scan.

The PET scan is scheduled for Tuesday. In the meantime, we are trying to think of what we can do to be proactive. If the cancer has NOT spread - yet the surgeon will still not operate because he thinks the area is too large - we wonder if we need to find a less conservative surgeon?

Our time is short if surgery will occur. We were told the surgery would need to be done within 6 weeks of his last radiation treamtent or else scar tissue from radiation will make things more difficult. The 6 week mark would be April 22nd. Not much time to find a new surgeon if it comes to that. At that point I think we would be ready to travel if necessary - but would any of the surgeons not local to us look at his scans if we send them to them and pay them for a remote consultation - or would we have to travel there for a consultation in person?

Would love any thoughts/suggestions....

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    2nd Opinion
    Hello Dana and welcome to you and your dad to our ec discussion board family! I was a caregiver for my dad. Unfortunately, he passed from EC/liver cancer last March. I am thinking and suggesting to you to definitely get your dad a 2nd opinion. This dr. you have now sounds too conservative. Does not sound like he is a specialist in this area. Too cautious. Many people here will reply. One of the best known and most recommended surgeons who specialize in EC is Dr. Luketich at University of PA Hospital in Pittsburgh, PA. There is also another excellent surgeon in the Boston MA area. Not very sure of his name though. Time is of the essence for sure. Yes, the surgeons at other hospitals will request to see all of your dad's records, scans, tests, etc. Keep up your good work. It takes someone like yourself to keep their nose to the grindstone, finding the all of the best for your dad. Keep in touch.
    Tina in Va
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    Some additional thoughts..
    Dana,

    Has your Dad had an endoscopic ultra sound (EUS)? That should allow them to define the size and depth of the tumor in the esophagus and define involvement in the stomach. I have also heard of surgeons using a part of the intestines or colon and a replacement for the stomach if it needs to be completely removed. It sounds like you may need to find a more aggressive surgeon.

    Best Regards,

    Paul Adams
    McCormick, South Carolina
  • DanaMB3
    DanaMB3 Member Posts: 98
    #4
    paul61 said:

    Some additional thoughts..
    Dana,

    Has your Dad had an endoscopic ultra sound (EUS)? That should allow them to define the size and depth of the tumor in the esophagus and define involvement in the stomach. I have also heard of surgeons using a part of the intestines or colon and a replacement for the stomach if it needs to be completely removed. It sounds like you may need to find a more aggressive surgeon.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    Hi Paul and Tina
    Paul - Yes, I do believe earlier in his diagnosis he did have an EUS, but has not had another one since his treatment started. Thank you as well for the info regarding those more aggressive surgery options - we will definitely investigate if need be. Thank you.

    Thank you to you and Tina for encouragement to seek another surgeon if necessary. If PET scan shows no other cancer spread we will do everything we can to find one that will give him the best chance.

    Dana
  • linda1120
    linda1120 Member Posts: 389
    #5
    DanaMB3 said:

    Hi Paul and Tina
    Paul - Yes, I do believe earlier in his diagnosis he did have an EUS, but has not had another one since his treatment started. Thank you as well for the info regarding those more aggressive surgery options - we will definitely investigate if need be. Thank you.

    Thank you to you and Tina for encouragement to seek another surgeon if necessary. If PET scan shows no other cancer spread we will do everything we can to find one that will give him the best chance.

    Dana

    Aggressive Surgeons
    Dear Dana,

    I know that the surgeons my husband had are much more aggressive than most. Jim was operated on by a team of surgeons including a thoracic surgeon and three gastro surgeons at Oregon Health and Science University in Portland, Oregon. If you have any interest in pursuing them, I can send you the nurses name and phone number. She could have his records faxed to her and if anything can be done, they can do it.

    Linda
  • sandy1943
    sandy1943 Member Posts: 824
    #6
    If the pet scan shows no
    If the pet scan shows no other cancer, I don't understand why they wouldn't operate. I agree with the others that your surgeon might not be aggresive enough. Praying the Pet will be a good one and with time running out, the docter will be able to do the surgery.Sandra
  • DanaMB3
    DanaMB3 Member Posts: 98
    #7
    sandy1943 said:

    If the pet scan shows no
    If the pet scan shows no other cancer, I don't understand why they wouldn't operate. I agree with the others that your surgeon might not be aggresive enough. Praying the Pet will be a good one and with time running out, the docter will be able to do the surgery.Sandra

    Thank you Linda and Sandy
    We made a number of calls yesterday for our "Plan B" and set up an appointment at Mayo as well as are sending his records to UPMC. We also received a couple more local surgeon referrals. In the meantime we wait for his PET Scan results, which we will get tomorrow...
  • DanaMB3
    DanaMB3 Member Posts: 98
    #8
    PET showed no further growth
    PET showed no further activity/metastasis, we are so thankful for that! The 2 original sites of the disease remain the same from prior to treatment. The surgeon sounds like he does not want to operate. He feels that since the large lymph node grew and my dad did not respond well to the chemo/radiation, that he is not a good candidate for surgery. His oncologist feels that the lymph node activity is a sign that the cancer is already metastasizing, we are just not able to see it yet, so why put him through the surgery. We will get the definite yes or no tomorrow after the surgeon consults with the gastric surgeon, but we are under the impression his mind is already made up. In the meantime, the oncologist told my dad his life expectancy would be under 1 year without the surgery.

    In the meantime we Fed-exed all his records and scans to Dr. Luketich and also have an appointment set at Mayo Clinic in Minnesota on Monday. We also have 2 referrals from the oncologist for more aggressive, local surgeons. If in the end all agree surgery would not be in my dad's best interest I guess we’ll have to accept that...

    Would love any thoughts/suggestions/similar experiences…and thanks for all your prayers.

    Thanks in advance
  • Unknown
    Unknown
    #9
    DanaMB3 said:

    PET showed no further growth
    PET showed no further activity/metastasis, we are so thankful for that! The 2 original sites of the disease remain the same from prior to treatment. The surgeon sounds like he does not want to operate. He feels that since the large lymph node grew and my dad did not respond well to the chemo/radiation, that he is not a good candidate for surgery. His oncologist feels that the lymph node activity is a sign that the cancer is already metastasizing, we are just not able to see it yet, so why put him through the surgery. We will get the definite yes or no tomorrow after the surgeon consults with the gastric surgeon, but we are under the impression his mind is already made up. In the meantime, the oncologist told my dad his life expectancy would be under 1 year without the surgery.

    In the meantime we Fed-exed all his records and scans to Dr. Luketich and also have an appointment set at Mayo Clinic in Minnesota on Monday. We also have 2 referrals from the oncologist for more aggressive, local surgeons. If in the end all agree surgery would not be in my dad's best interest I guess we’ll have to accept that...

    Would love any thoughts/suggestions/similar experiences…and thanks for all your prayers.

    Thanks in advance

    This comment has been removed by the Moderator
  • oriontj
    oriontj Member Posts: 375
    #10
    I was surprised that they even considered surgery
    Your Dad had more cancer sites than my husband initially and they (u of c) surgeons said surgery was not an option. After chemo and radiation, he was cancer free a year until it came back and they still didn't consider surgery an option.

    The surgeon you consulted with about surgery is a top surgeon in this area. He won't do the surgery if he feels that it will not have successful results and do more harm than good.

    My husband after what he read about the surgery refused to go anywhere else. As I told William, he wouldn't send his records anywhere.

    Every case is different, it seems what works for one doesn't work for another. Since he had a good year free of cancer, he won't consider surgery and I doubt any doctor would do it. It isn't an easy surgery and it's a difficult recovery. My husband said nope it's not for him.

    Your Dad is different in that he wants to have the surgery done which I think is a great idea. He's lucky to have you for an advocate.

    I'll be saying prayers you find a good answer to your questions and if your Dad is able that he can have the surgey. From all I read, it's the only way to completely get rid of the cancer. And then it may come back...we don't know that only God does.

    Prayers are with you and your family Dana.

    jan
  • DanaMB3
    DanaMB3 Member Posts: 98
    #11
    unknown said:

    This comment has been removed by the Moderator

    Thanks William
    We have a few appointments set for the next two weeks to get some different opinions.
    We are definitely not quitting! Thanks for your encouragement...
  • DanaMB3
    DanaMB3 Member Posts: 98
    #12
    oriontj said:

    I was surprised that they even considered surgery
    Your Dad had more cancer sites than my husband initially and they (u of c) surgeons said surgery was not an option. After chemo and radiation, he was cancer free a year until it came back and they still didn't consider surgery an option.

    The surgeon you consulted with about surgery is a top surgeon in this area. He won't do the surgery if he feels that it will not have successful results and do more harm than good.

    My husband after what he read about the surgery refused to go anywhere else. As I told William, he wouldn't send his records anywhere.

    Every case is different, it seems what works for one doesn't work for another. Since he had a good year free of cancer, he won't consider surgery and I doubt any doctor would do it. It isn't an easy surgery and it's a difficult recovery. My husband said nope it's not for him.

    Your Dad is different in that he wants to have the surgery done which I think is a great idea. He's lucky to have you for an advocate.

    I'll be saying prayers you find a good answer to your questions and if your Dad is able that he can have the surgey. From all I read, it's the only way to completely get rid of the cancer. And then it may come back...we don't know that only God does.

    Prayers are with you and your family Dana.

    jan

    Hi Jan
    What was your husband's original diagnosis again? My dad was stage 3B - tumor at GE junction and regional lymph node involvement. We were told early on that as long as the lymph node involvement was contained regionally, one could still be a candidate for surgery.

    My parents and my sister are actually going to meet with Dr. Vilaflor today to get her input on where to go from here. Then we also go to Mayo Clinic on Monday to see what they have to say. We actually have still not yet received the 100% "no" from Ferguson - he was supposed to get an answer to my parents on Wednesday, but wanted to consult with the gastric surgeon. They've put calls in, but have not been returned other than by his assistant to say his schedule has been crazy. We know he spoke to our local oncologist and told him that he didn't think surgery would be a good idea, but have yet to hear from him ourselves. I suppose they will find out today when they are down there.

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