Update to my Orgional Post

sjbo659
sjbo659 Member Posts: 8
in Esophageal Cancer #1

I finished my Chemo and Radiation 4 weeks ago.  I met with my surgon here in Alaska this week and the PET Scane we did on Monday came back as no sign of cancer so I had a very good result from the Radiation and Chemo even though it did put me in the hospital for 6 days the day of ther last Radiation treatment.  I lost almost 90 lbs while undergoing the treatments and my white blood count was almost 0 the last day.  During my surgon visit he informed me that he would be bringing in another surgon from Washington state to work with him on the surgery which is the open surgery becuase he does not do the minimally invasive.  I have had mis givings from day one as to whether to go ahead with the surgery or not depending on the results of the Pet Scan last week.  Today I made my decision and am Flying to Philidelphia and meeting with Dr. Jame Lukatich on Friday to discuse doing the minimally invasive surgery there.  I did speak with his office when this all began and we have sent them all results along the way so they do have a file on me that is up to date on my progress.  I am still not 100% sure I will go through with the surgery and a lot will depend on how I feel once I meet the surgeon and what he has to say.  I know that a lot of people have the cancer come back even after doing the surgery and that is what bothers me the most.  I can do preventive maintenance but at the same time my chance of it coming back are greater then if I do the surgery but all things considered I will probably do the surgery at UPMC with Dr Lukatich.

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    Dr. Luketich and UPMC is the right choice.

    Dr. James Luketich at University of Pittsburg Medical center is the right decision. He is the national leader in the development of Minimally Invasive Esophagectomies and the after-care facility at UPMC Shadyside is first class. There are facilities there where you and your family can stay prior to surgery and during recovery. I think the difference in outcome and recovery time will make it well worth traveling from Alaska to Pennsylvania for your surgery.

    http://www.upmc.com/Services/esophageal-lung-surgery-institute/Pages/default.aspx

     I am a survivor of "open" Ivor Lewis surgery. Take my word for it, if you have an option minimally invasive with Dr. Luketich is the right choice.

    Dr. Luketich can help you understand the trade offs between having surgery and taking the chance that your chemotherapy and radiation therapy eliminated all the cancer. Most importantly, he can tell you how often they find active cancer cells below the "dead" tumor after there has been what the scans have shown as a "complete response". 

    Wishing you the best in your upcoming surgery,

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Eight Year Survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

     

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #3
    Steve~U will never regret the decision 2 consult w/Dr. Luketich

    Dear Steve:

    May I say you have made a wise choice.  Smile Paul is right.  You could not have chosen a better thoracic surgeon than Dr. James D. Luketich for a consultation.  And you cannot make a wiser choice than to have the MIE now that your pre-op treatment is complete.  I’ve given you a reference below about where you can stay.  That is, if you haven’t already made arrangements for your visit there.  We stayed at the “Family House Shadyside” while we were patients at UPMC. 

    You can call 412-647-7777 for housing information. 

    Each time we went to Pittsburgh, we called ahead and told them what day we would be arriving.  They put our name on the list for that day.  Depending on where a vacancy exists, they will reserve a place for you.  It will be much less expensive than staying at a hotel, although I see that there are hotels that will give a discount to UPMC patients.  (Now should all the rooms be taken on the day you arrive, you might have to check in at a hotel, but usually there are vacancies because there are so many out-of-town patients coming and going at any given time.) 

    Parking is at a premium, so when you get there, if you stay at one of the “UPMC” family houses, just park your car, and take the shuttle bus.  It comes by on a regular schedule and picks up patients from each of their family houses, and takes them to the facility where they need to go to. 

    Steve, you’ve had a rough ride.  With that much weight loss, I’m surprised you’re still standing!  But you have made the wisest choice possible.  The Minimally Invasive Esophagectomy is the best way to go.  I can tell you that you will love Dr. Luketich.  The MIE was in its infancy in 2003, so to speak.  But it has now been proven to be “King of the Hill!”  And I am glad that your doctor, Dr. Charles Potera, at the Providence Medical Center there in Alaska, was truthful with you and told you that he was not properly trained to perform the MIE and that the facilities there were not adequate for that type of surgery.  We always say, “Well sure the surgeon may be good at what he knows how to do—the OPEN Ivor Lewis Esophagectomy—but YOU ARE THE ONE that has to recover from the massive incisions.  Why settle for a massive incision that runs from the back to the front and another massive one in the front when band-aid size incisions will do the same thing?   

    And Dr. Luketich has “fine-tuned” the MIE over the years.  Dr. Luketich now makes an incision in the chest area (to remove the diseased Esophagus) rather than the “neck” incision that my husband had back in 2003.  They have discovered that this greatly reduced potential damage to the laryngeal nerve (voice) and pharyngeal (throat) nerves which sometimes happened with the neck incision.  However, my husband had “no complications.”  And as I have said before, he was in ICU for one day, in a step-down unit on Day 2, and then out on the floor for Esophageal Cancer patients on Day 3.  He was discharged on Day 5, and was downtown shopping with me in Pittsburgh on Day 8.  And isn’t that what wives often do to “celebrate”—they go shopping!  Kiss

    Okay Steve, we’re wishing you safe travels, and don’t you dare “chicken out!”  Wink You’ve come too far to turn back now.  Put on your “big boy pants” and “git ‘er done!”

    Love & prayers,

    Loretta & William

     P.S.  Both my husband and I could not erase the smile on our face, and the relief we felt, when you wrote to say that you will be meeting with Dr. James D. Luketich.  We’ll be waiting for an update in time to come. 

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #4
    Hello Steve

    Hello Steve,

    I just want to compliment you on your choices.  Too many folks make literal life and death decisions based on temporary convenience.  There is frequently a world of difference between the hospital down the block and an actual world class cancer center.  Everyone isn't fortunate enough to live down the street from the Mayo Clinic.  For the rest of the folks dealing with EC, travelling/commuting may be their best bet to beat it.  But a lot aren't willing to deal with the inconvenience.  You are.  UPMC is world class.  You will give yourself the best odds of winning by going to them.  And that's really all you can do.  There are no guarantees, but you can improve your odds. And you are doing that, so good for you.

    As I mentioned, there are no gurantees.  You pointed that out about how there can be recurrences after surgery.  The surgery doesn't guarantee no recurrence, but it does give you the best odds of fending one off.  I was stage III and had chemo/radiation.  I then had surgery.  I then even had a bonus course of chemo (same stuff as the 1st time, but stronger) just to bayonnet the corpses.  I did everything I could to avoid a recurrence because we were shooting for decades of survival, not just a few months or years.  I still had a recurrence.  But I would do it the same way again if I had to.  I gave myself the best possible odds, and that's as much as we can control.  Your best bet is that the dice come up seven.  They don't always, but it's still the best odds.

    Again, my compliments on your choices.  You are someone willing to do whatever it takes to live.

    Best Wishes,

    Ed

  • sjbo659
    sjbo659 Member Posts: 8
    #5
    Thank you everyone

    I want to thank you all for your replys.  I am looking forward to meeting with Dr Luketich this week and my hopes are that we can discusee and come to terms with the surgery that will work for me in the end.  I spoke with them today on the pho9ne and they may want to do a repeat of the PET scan when I get there though.  But they will shoot for Thursday afternoon for that.  Then I will meet with him on Friday afternoon.  I will let everyone know what we decide after I return home on Saturday.  Looks like this is going to be a turn around trip for me but there are a few things I need to settle before I leave for three weeks.  At least the trips will not be like Dec when I flew to Orlando for the royal canine show with my Bouvier.  This trip I will be able to eat. lol.  I am eating everything again with no pain at all so if the results we got last week are correct I did have a very good result witht he radiation and Kemo even though it was a rough trip.  I did see the ongologist on Friday and it was actually him that made me decide on Goping to Philly.  I was almost ready to allow the local surgeon do the surgery but he really did scare me when he said he would be bringing a surgon in from Washington State to help him do it.  That does not instill much faith in a person.  Anyway thank you all again. Steve

  • paul61
    paul61 Member Posts: 1,392 Member
    #6
    sjbo659 said:

    Thank you everyone

    I want to thank you all for your replys.  I am looking forward to meeting with Dr Luketich this week and my hopes are that we can discusee and come to terms with the surgery that will work for me in the end.  I spoke with them today on the pho9ne and they may want to do a repeat of the PET scan when I get there though.  But they will shoot for Thursday afternoon for that.  Then I will meet with him on Friday afternoon.  I will let everyone know what we decide after I return home on Saturday.  Looks like this is going to be a turn around trip for me but there are a few things I need to settle before I leave for three weeks.  At least the trips will not be like Dec when I flew to Orlando for the royal canine show with my Bouvier.  This trip I will be able to eat. lol.  I am eating everything again with no pain at all so if the results we got last week are correct I did have a very good result witht he radiation and Kemo even though it was a rough trip.  I did see the ongologist on Friday and it was actually him that made me decide on Goping to Philly.  I was almost ready to allow the local surgeon do the surgery but he really did scare me when he said he would be bringing a surgon in from Washington State to help him do it.  That does not instill much faith in a person.  Anyway thank you all again. Steve

    UMPC is in Pittsburgh, PA not Philadelphia, PA

    Steve,

    You probably know this, but I would not want you to end up on the wrong plane. University of Pittsburgh Medical Center (UMPC) is located in Pittsburgh, PA not Philadelphia, PA. 

    Address is:

    UPMC
    200 Lothrop St.
    Pittsburgh, PA 15213-2582
    412-647-UPMC (8762)
    1-800-533-UPMC (8762)

    Dr. Luketich's Office

    Hillman Cancer Center
    5115 Centre Ave.
    3rd Floor
    Pittsburgh, PA 15232
    Office Phone: 
    (412) 647-7555

    Best of luck on your trip!!

    Paul

  • kbdarnall
    kbdarnall Member Posts: 30
    #7
    Hospitalized for radiation-induced pneumonitis

    Were you hospitalized 6 days for pneumonitis? Your experience sounds simular to my husband's experience.. On February 22, after radiation dose # 29, he was hospitalized for "sepsis." It took a few days for doctors to decide it was radiation-induced pneumonitis. He spent 5 days intubated, on mechanical ventilation. 10 days in hospital, plus 2 weeks in skilled nursing facility. He's been home since March 17. Getting stronger. We are waiting for appointment date for the PET-CT scan. If results are good, then he may have another endoscopy with biopsies.

    Last day of radiation was 7 weeks ago. Original plan was surgery after 5 weeks. So we are definitely behind schedule. 

    Sounds like you lost an incredible amount of weight (90 lbs). My husband lost about 20 pounds. But he was extremely weak after pneumonitis resolved. He could barely roll over in bed. Now, he can walk up the hill and climb stairs (rather slowly). His stamina is improving daily. Diabetes now under control (after steroid treatment). His apetite is good and he's able to eat everything. Hopefully, the PET scan will be negative. We'll see. 

    It's a difficult decision (whether to undergo massive surgery) when you are enjoying life again.

    I wish you well. Please keep posting to let us know how you are doing.

    Karen D

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