How to Choose a Surgeon for a Total Gastrectomy

The last month, I’ve been able to discuss CDH1 and/or the total gastrectomy procedure with several people who are in the manic “shock” phase of a CDH1 diagnosis. I’ve had a lot of time to reflect on both my recovery and the wide array of recovery complications for other individuals. As such, it seemed prudent to give my opinion for how to choose a surgeon. When all is said and done, you’ve got one shot to get the surgery done the right way.

My surgeon was Dr. Paul Mansfield at MD Anderson in Houston, TX. He is fabulous, and I can’t thank him enough. He performed my brother’s surgery, as well as 5 other CDH1ers I’ve met. None of us have had major complications.

Below is how I group what you should care about in choosing a surgeon.

  • How many gastrectomies has your potential surgeon performed?
    • You want someone who knows what they’re doing.
  • What is your leakage rate?
    • The anastomosis is the fancy medical term for the connection of your esophagus to your small intestines. This is the most critical element of your surgery that will impact your post-gastrectomy life. You want the food in your esophagus to stay inside the esophagus and the small intestines.
  • What technique do you use for the anastomosis?
    • Stay far aware from any surgeon who staples this connection. Staples lead to a higher incidence of strictures. Strictures are when the anastomosis contracts and you can’t get food through. When this happens, your only option to address the problem is to go through a series of dilations to get the stricture opened back up.
    • To be clear, a stricture could happen with a hand-sewn anastomosis, but it greatly reduces the incidence of stricture. Your job is to minimize all likelihood of the complication with the best practice.
    • I haven’t had any strictures, and Mansfield specifically discussed performing the anastomosis with hand stitching. This is why my surgery was performed half laproscopically and half open. To minimize risks, the surgery starts laproscopically. Then they cut the vertical incision in order to perform the anastosmosis by hand.
    • How are you confident that your anastomosis is sealed and done right? So apparently the human digestive system can identify leaks the same way you identify leaks in a car engine. They submerge the connection in water and put a puff of air through your esophagus. If they see air bubbles, they have a problem.
    • A lot of other bloggers mentioned a barium swallow test before they were allowed to start eating. I didn’t do one. When I asked Mansfield, he said the possibility is there for both false positive and false negative results. As such, the surgeon needs to be confident in their connection. When I asked how, he explained the water submerge technique.
  • Feeding Tube – You Need One
    • I’m a huge fan of the feeding tube. Given my pre-surgery weight, I didn’t have a lot of extra weight to lose. But even if I was overweight, I would be sure to have the surgeon put in the feeding tube. It’s a backup plan. If your recovery has complications, it’s not like you can easily go in for an additional procedure to put the feeding tube in after the fact. You want the feeding tube in place while you’re on the table. If you hate the feeding tube, great. Just don’t use it. Prove that your oral intake is good enough to have controlled weight loss.
    • You’ll be going in for major abdominal surgery. At the very moment your body needs full nutrition in order to heal and repair itself is not the right time to malnourish your body.
    • Uncontrolled substantial weight loss creates a whole other set of additional complications above and beyond recovering and adjusting to your new digestive plumbing. You’ll have plenty of time post TG to lose weight if you want because remember that you don’t feel hungry anymore.
  • The Surgeon
    • Make sure you like the person. My doctor was not only compassionate and caring, but also experienced, knowledgeable and logical. He provided sound medical test results that supported his rationale for every technique he used for my surgery.
  • Location
    • Don’t have your surgery at a small local hospital. Go to a major hospital with expertise. But that being said, I can’t believe there is only one doctor in the United States capable and experienced. If you’re near Houston, by all means, call up Dr. Mansfield. If not, there is probably one at a whatever great major hospital is near you. Just do your research, ask the questions and compare. It’s worth your time.

The only other surgery-related concerns I would have before a total gastrectomy is about your own health. If you can get yourself into great shape before surgery while eating up a storm to pack a few pounds, do it. Go to the gym 6 days a week leading up to surgery, whatever you have to do. I can’t tell you why my recovery has gone so well, but I won’t discredit the unknown benefits of exercise. For me, I thank my crazy running habit for my amazing recovery.

Hope this is helpful.

And of course no new blog post is complete without a picture. Post gastrectomy life should be a  constant attempt to live life to its fullest. If a brush with cancer and a major internal plumbing change doesn’t force you to focus your life priorities, I’m not sure what will!! For me, I love music, so I make sure to always get to some good concerts. This past month, I was able to go to Mumford & Sons. They put on an amazing concert!! Here we are getting into the concert venue for our date night! It was a blast! Kyle is my rock and greatest supporter everyday, and I am so blessed to live my life with him.
MumfordAndSons

 

15 thoughts on “How to Choose a Surgeon for a Total Gastrectomy

  1. I’m sure that your suggestions for a surgeon will be helpful to many people with CDH1. Finding Dr. Mansfield at MD Anderson has been a blessing to both you and Mike. So proud of how well you both have progressed over the past 2 years. Love you both.

  2. You are so right!You’ve described and lived the ideal situation.Unfortunately,in Romania,my country,where my husband had his total gastrectomy due to cancer,things are far away from it.You look great!God bless and your family!

  3. I’m so glad Nicole and I were able to reach out to you and pick your brain. We are scheduled for surgery with Dr. Mansfield on May 24th and truly feel we have the best surgeon to handle our case. Thank you so much for sharing your experience.

    • So glad we could discuss everything, and I’m happy you’re going to Mansfield. He’s amazing and will take care of you both. Please keep me posted and I can stop by sometime if you’re in Houston.

      Marne

  4. A couple of things to add having had the same operation, but in Singapore:

    Laproscopic vs open – what is your surgeon going to do? I had fully laproscopic, my brother open surgery in the UK. Choice is mostly down to surgeon experience, but don’t be your surgeon’s first attempt at a laproscopic total gastrectomy as its very important to get all of the stomach tissue out. My recovery was generally faster than my brother’s which is probably down to the laproscopic techniques.

    What is the approach to changing plans during surgery? For example – some of my lymph nodes around my stomach were enlarged and unusual in appearance. To avoid the risk of them being cancerous and requiring a second surgery later, my surgeon extended my first surgery removing an additional set of lymph nodes beyond those immediately around the stomach until they appeared normal (a standard approach in Asia, less so elsewhere I’m told). Similarly, although he intended to hand sew the anastamosis, on seeing the geometries of my intestines and esophagus, decided a staple was more suitable – I’ve not had any problems with it.

    100% agree that you need to find someone you’re comfortable with and who will answer a phone call anytime after surgery, and somewhere that has good facilities and experience.

    • Thanks for your feedback! It’s good to hear all the different methods.

      My surgeon performed the first half of the surgery laparoscopically and the rest open. His studies showed it minimized risks.

      Marne

  5. Hi there Marne!

    So I was just wondering if you can tell me more about your opinion regarding having the join stapled vs. hand sewn. I am going to be having my stomach removed soon after a CDH1 positive screening, and in the process of deciding on surgeons.

    From what I can find research-wise, there seems to be actually a lesser incidence of stricture with the stapled vs the hand sewn. (http://www.sciencedirect.com/science/article/pii/S2049080116000029).

    The chief of surgery at a very well-respected cancer institute near me does to the staple ring. He has done quite of few prophylactic gastrectomies on CDH1 positive patients and has said that he has had a couple stricture issues but no more than he has had with hand sewn. I am leaning toward this surgeon for a lot of reasons, but I have to say your opinion on that gave me pause. So, I was just wondering if you could tell me more about how you came to that opinion and what research you’d done on it. thanks SO much for any help on that you can provide. Your blog is so helpful and so glad to see that people are out there living pretty normal lives.

    • Hi Julie!

      That’s interesting about the staples. I know before my surgery in 2013, my surgeon said all the studies he had seen showed a lesser incidence of stricture with the hand sewn technique. I don’t know the particular studies he saw, but I trusted him and assume he has access to better studies than me.

      I wonder if there are perhaps newer and better staple techniques today? I’d ask his leakage rate with his technique and if stapling has improved.

      Hope that helps!
      Marne

  6. Hello Marne,

    I can’t begin to tell you how much I appreciate reading your blog (Steve’s too)! I found that I inherited the mutated CDH1 gene October 2015. I was scheduled for the total gastrectomy this past March, but found lobular breast cancer in both breasts, so I opted to have the double mastectomy with reconstruction first. My gastrectomy is now scheduled at the end of next month.

    Your blog has given me inspiration and wonderful tips that I know will help me get through this next round of surgery and hope that life without a stomach will continually get better as time goes on.

    Thank you and may God bless and keep you and your family happy and safe!

  7. I’m about to have TG at Medical City in Dallas. I want to ask your opinion on something. You mentioned the necessity of a feeding tube. Do you know if TPN through a PICC line is just as effective, nutritionally? I am going into surgery with a PICC line, and I’m going to ask the surgeon if I can keep it in for a while just in case nutritional support is needed. A feeding tube might be difficult for me, as I am overweight and have a fair amount of loose skin from losing weight previously.

    I realize you’re not a medical professional, I just want your opinion on it.

    Thanks!

    Laura

    • Hi Laura,

      I’m guessing you already had your TG but wanted to respond. There are 2 trains of thought on feeding tubes.

      1. It’s a crutch and adds risk because it’s another opening in your body, increasing infection odds.

      2. If the worst case scenario happens, you cannot easily put a feeding tube in after the fact if recovery is not going well. Therefore, it’s best to put the tube in just in case the recovery goes very very poorly.

      Given my low BMI going into my surgery, a feeding tube was essential for me. I was still motivated to get it out quickly. (It was uncomfortable and annoying.) But it was essential for me during my initial recovery when I was struggling to consume 500 calories today. I would have lost 35% of my body weight without the feeding tube vs the 18% I lost and have since regained.

      Marne

  8. Marne, even though you wrote this several months ago, I just saw it for the first time today. As I mentioned in an earlier comment, I had my gastrectomy performed by Dr. Mansfield two weeks ago today. I agree, he is amazing. He is the most qualified surgeon that I know of in the US for this surgery. There honestly may be others just as qualified, but I know he does lots of them and I felt very comfortable with him and so far, am doing amazingly well in my recovery.

    I wanted to respond to your comments about the feeding tube. I don’t know if you are aware, but Dr. Mansfield no longer automatically puts in feeding tubes. I’m not sure exactly when that changed, I think a few months ago. I know sometime between my first visit with him in January 2016 and my surgery in February 2017. His reason for changing his opinion on this is because of the number of people that have problems with their feeding tube and develop an infection or some other issue with it. What he does do now, is prep the area where it would go. I’m sorry that I don’t recall the medical explanation, but basically he puts things in place, so that if the feeding tube needs to be added later, it is an easy procedure that can be accomplished by an Interventional Radiologist (I think I have the term right) instead of being a major surgery that has to be done by a surgeon.

    Just thought I’d update you on the latest from Dr. Mansfield.

  9. Hi Marne,

    My name is Judy and I came to know about you during my visit today with Dr. Mansfield. He mentioned your success post gastrectomy. You are a great encouragement to me as I’m in the process of making decisions about what is right for me. I was hoping we could talk. Would that be possible please?

    Thanks!
    Judy

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