Thinking you should stay local and not venture out to a larger Cancer Center?

JimboC
JimboC Member Posts: 264
in Esophageal Cancer #1
Today I found the true difference between a smaller local and a large national Cancer Center. My oncologist wanted me to meet with a surgeon and radiation oncologist locally to discuss options in case my node is cancerous. I already knew he had presented my case at the last tumor board and the response was not great. Basically, the surgeon didn't want to do anything because I had already had a chance at surgery. Today I met with the radiation oncologist. In a nutshell, he said that he would not do radiation to the node until that I had been back on chemo and the cancer stabilized. He was very nice but basically said not everyone who comes here is able to be treated. I knew this going in but it was daunting to hear. He did suggest I speak with the rad-onc team at UPMC and commented that they have an excellent program up there.

Now, compare this to UPMC. They said that if it is cancer, since it is just a single node, it could be removed. They did note that this wasn't the standard of care but since they can do it minimally invasive, they could.

One place ready to pretty much give up but UPMC is still willing to fight. I have read on this very forum about Dr. Luketich's team doing some amazing things when it seemed that all hope was lost. If you are sitting at home, suffering from EC but afraid to leave the comforts of your local area, I urge you to rethink it. Your life could depend on it. After my visit to the rad-onc doctor today, my decision to go to UPMC was reaffirmed as correct.

Comments

  • JimboC
    JimboC Member Posts: 264
    #2
    I forgot to mention. They
    I forgot to mention. They gave me a nice book on Radiation Treatment and what to expect. Needless to say, I threw it away on the way out the door. I wish I had kept it because I am going to the firing range here in a few and it would have made for great angry target practice. ;)
  • Joel C
    Joel C Member Posts: 174
    #3
    JimboC said:

    I forgot to mention. They
    I forgot to mention. They gave me a nice book on Radiation Treatment and what to expect. Needless to say, I threw it away on the way out the door. I wish I had kept it because I am going to the firing range here in a few and it would have made for great angry target practice. ;)

    I hope you’re right Jimbo.
    I haven’t posted for a while but I’m in a similar situation as you Jimbo. I had a recurrence this past August in my paratracheal node nine months post MIE. My local radiation and medical oncologist offered palliative care because they could see no value in degrading my quality of life with no chance of a cure. After much discussion between my local doctors and the doctors at the cancer center that I had my MIE in Boston my surgeon recommended he remove the node and based on the path report the oncologist should design an aggressive follow up treatment. After tremendous family pressure I had the node removed on 10/27 and will meet with the oncologist next week 11/16 to discuss follow up treatment. I hate to say it but I believe the local guys may have been right. I went into the surgery to remove the node believing it would be an easy recovery compared to the MIE but I was wrong, it was a huge hit to my quality of life. I didn’t take in to account how much I had been beaten up during the MIE.

    I do believe a major cancer center is the right place to be in most situations but I also believe at a certain point the local doctors are more interested in compassionate care and less interested in acting like scientists trying to collect data that may help with some future study. Like the surgery I don’t want to do the chemo but if it makes my family feel better thinking we fought it to the end, then I’ll go along with it.
    Good luck Jimbo,
    Joel
  • JimboC
    JimboC Member Posts: 264
    #4
    Joel C said:

    I hope you’re right Jimbo.
    I haven’t posted for a while but I’m in a similar situation as you Jimbo. I had a recurrence this past August in my paratracheal node nine months post MIE. My local radiation and medical oncologist offered palliative care because they could see no value in degrading my quality of life with no chance of a cure. After much discussion between my local doctors and the doctors at the cancer center that I had my MIE in Boston my surgeon recommended he remove the node and based on the path report the oncologist should design an aggressive follow up treatment. After tremendous family pressure I had the node removed on 10/27 and will meet with the oncologist next week 11/16 to discuss follow up treatment. I hate to say it but I believe the local guys may have been right. I went into the surgery to remove the node believing it would be an easy recovery compared to the MIE but I was wrong, it was a huge hit to my quality of life. I didn’t take in to account how much I had been beaten up during the MIE.

    I do believe a major cancer center is the right place to be in most situations but I also believe at a certain point the local doctors are more interested in compassionate care and less interested in acting like scientists trying to collect data that may help with some future study. Like the surgery I don’t want to do the chemo but if it makes my family feel better thinking we fought it to the end, then I’ll go along with it.
    Good luck Jimbo,
    Joel

    It has been a while
    I was wondering how you had been Joel. Sorry to hear the surgery was so rough. Did you just have the one node removed or did they find any other while they were in there? I feel pretty good about surgery (if it goes that way) because I really feel so darn good. Other than some minor soreness, I would have to say I am completely recovered from surgery and chemo. Granted, I may live to regret those words in the near future.

    I do agree, there is a point where quality becomes very important and I do hope I'm smart enough to realize when I'm there.

    I wish you all the best my friend.
  • Joel C
    Joel C Member Posts: 174
    #5
    JimboC said:

    It has been a while
    I was wondering how you had been Joel. Sorry to hear the surgery was so rough. Did you just have the one node removed or did they find any other while they were in there? I feel pretty good about surgery (if it goes that way) because I really feel so darn good. Other than some minor soreness, I would have to say I am completely recovered from surgery and chemo. Granted, I may live to regret those words in the near future.

    I do agree, there is a point where quality becomes very important and I do hope I'm smart enough to realize when I'm there.

    I wish you all the best my friend.

    Hi Jimbo,

    They removed the one node and as much surrounding tissue as possible. The pathology on the surrounding tissue was clean so as far as we can tell at this point the cancer was contained to the node. It looks like the plan going forward will be some number of cycles of FOLFOX. I pray your path report comes back negative for cancer but in the event it is cancer are they talking about follow up chemo once the node is removed?
    Best regards,
    Joel
  • DanaMB3
    DanaMB3 Member Posts: 98
    #6
    I am happy to hear about
    I am happy to hear about your more positive news from UPMC. Will be saying prayers that your surgery goes well!!

    I wanted to add - not only should you venture out to a larger cancer center - but EVEN IF your larger cancer center doesn't have the answer for you, visit ANOTHER large cancer center for a 2nd (or if necessary 3rd) opinion. My dad was told he was inoperable (stage 3) by a top surgeon at a large cancer center in Chicago. Turns out this surgeon was very conservative. We went for a 2nd opinion to Mayo Clinic and a surgeon there had a different opinion. My dad had surgery in April (Ivor Lewis) and is doing great today! Coincidentally, this is 6 months from when the Chicago doc told him he would have "6-12 months" to live without surgery. We are very cautiously optimistic but are so happy to have this "chance" for a cure.
  • Cora11
    Cora11 Member Posts: 173
    #7
    Joel C said:

    I hope you’re right Jimbo.
    I haven’t posted for a while but I’m in a similar situation as you Jimbo. I had a recurrence this past August in my paratracheal node nine months post MIE. My local radiation and medical oncologist offered palliative care because they could see no value in degrading my quality of life with no chance of a cure. After much discussion between my local doctors and the doctors at the cancer center that I had my MIE in Boston my surgeon recommended he remove the node and based on the path report the oncologist should design an aggressive follow up treatment. After tremendous family pressure I had the node removed on 10/27 and will meet with the oncologist next week 11/16 to discuss follow up treatment. I hate to say it but I believe the local guys may have been right. I went into the surgery to remove the node believing it would be an easy recovery compared to the MIE but I was wrong, it was a huge hit to my quality of life. I didn’t take in to account how much I had been beaten up during the MIE.

    I do believe a major cancer center is the right place to be in most situations but I also believe at a certain point the local doctors are more interested in compassionate care and less interested in acting like scientists trying to collect data that may help with some future study. Like the surgery I don’t want to do the chemo but if it makes my family feel better thinking we fought it to the end, then I’ll go along with it.
    Good luck Jimbo,
    Joel

    ?
    Joel, curious to know about this node. Was this your very first node since you got cancer, or did you have nodes on your original staging? Please let us know what your treatment plan is, and then does this change your staging at all ?
    Cora
  • Cora11
    Cora11 Member Posts: 173
    #8
    DanaMB3 said:

    I am happy to hear about
    I am happy to hear about your more positive news from UPMC. Will be saying prayers that your surgery goes well!!

    I wanted to add - not only should you venture out to a larger cancer center - but EVEN IF your larger cancer center doesn't have the answer for you, visit ANOTHER large cancer center for a 2nd (or if necessary 3rd) opinion. My dad was told he was inoperable (stage 3) by a top surgeon at a large cancer center in Chicago. Turns out this surgeon was very conservative. We went for a 2nd opinion to Mayo Clinic and a surgeon there had a different opinion. My dad had surgery in April (Ivor Lewis) and is doing great today! Coincidentally, this is 6 months from when the Chicago doc told him he would have "6-12 months" to live without surgery. We are very cautiously optimistic but are so happy to have this "chance" for a cure.

    Chicago
    As far as Chicago goes, I'd like to recommend Northwestern Memorial Hospital there and their Lurie cancer center. I was pretty impressed. We decided to choose UWMadison because of Dr. Tracey Weigel ( MIE approach and top notch staff all around)... so just wanted to give you a few options around the Chicago area and Madison is not too far. There cancer center is the Carbone Cancer Center.
    Cora
  • Joel C
    Joel C Member Posts: 174
    #9
    Cora11 said:

    Chicago
    As far as Chicago goes, I'd like to recommend Northwestern Memorial Hospital there and their Lurie cancer center. I was pretty impressed. We decided to choose UWMadison because of Dr. Tracey Weigel ( MIE approach and top notch staff all around)... so just wanted to give you a few options around the Chicago area and Madison is not too far. There cancer center is the Carbone Cancer Center.
    Cora

    Hi Cora,

    My clinical staging was 2B (T2N1M0). The one cancerous node that was detected during my original staging was at the gastric cardia adjacent to the tumor at the GE junction. Both the tumor and node were verified cancerous with biopsies. My post treatment/MIE pathology on the tumor and node came back clean indicating complete response to the pre-surgery chemo/radiation treatment. As a result of the clean path I was not offered follow-up chemo. During my second post op CT scan we found the paratracheal node had doubled in size from the first post op scan. The node was verified cancerous with a biopsy. In regard to being restaged my new stage based on the distant metastasis of the paratracheal node is 4A.
    I’ll post next what treatment the oncologist offer.
    Regards,
    Joel
  • JimboC
    JimboC Member Posts: 264
    #10
    Joel C said:

    Hi Jimbo,

    They removed the one node and as much surrounding tissue as possible. The pathology on the surrounding tissue was clean so as far as we can tell at this point the cancer was contained to the node. It looks like the plan going forward will be some number of cycles of FOLFOX. I pray your path report comes back negative for cancer but in the event it is cancer are they talking about follow up chemo once the node is removed?
    Best regards,
    Joel

    No one has mentioned chemo
    No one has mentioned chemo yet but I kind of assumed I would need a few rounds if it was cancer. If your cancer is contained to the node, that with the chemo should do you great. Speedy recovery my friend!
  • tclem
    tclem Member Posts: 22
    #11
    venturing out
    Thank you for that post. My 59 yr old dad was diagnosed last week w/ EC. He was told he also has 3 affected nodes in his stomach. Classified as Stage IV and inoperable. Local docs wants to do 6 weeks of chemo/radiation. I finally convinced my dad to go to a larger facility for a 2nd opinion to see if there is anything more aggressive/optimistic. Glad to hear you shouldn't always stop at the 1st door.
  • jgwright
    jgwright Member Posts: 242
    #12
    tclem said:

    venturing out
    Thank you for that post. My 59 yr old dad was diagnosed last week w/ EC. He was told he also has 3 affected nodes in his stomach. Classified as Stage IV and inoperable. Local docs wants to do 6 weeks of chemo/radiation. I finally convinced my dad to go to a larger facility for a 2nd opinion to see if there is anything more aggressive/optimistic. Glad to hear you shouldn't always stop at the 1st door.

    Always Get 2nd opinion
    Locally, the very kind and caring oncologist told me, "Sorry, there's nothing we can do but make sure you are comfortable." Gave me 3 months to, at the outside, 2 years. I told him I was getting a second opinion from the University of Washington Fred Hutchinson Cancer Center (on the other side of mountains). My choice! He didn't complain, but instead ordered some MRIs to verify if I really HAD metastasized into the brain and spine.

    Guess what? No signs of mets! My second oncologist, Dr. Lee, staged me at T3N0M0 and has me going for an endoscopic ultrasound, a meeting with a GEJ specialist surgeon, and chemo.

    A real game changer!

    --Jerry

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