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.
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Vitamin supplementation Plan – 2 years Post Total Gastrectomy

From what I’ve read and been told, after 6 months, most of your vitamin stores from before a total gastrectomy are assumedly gone. So, it is safe to say that at 2 years post-gastrectomy, I am fully dependent upon diet and supplements to maintain my health.

I just wanted to share with you what I currently am using as a reference. Check with your doctor for your plan. I’ve certainly discovered that everyone’s body reacts and heals differently from this surgery!

Since I have struggled with some major iron deficiency, I found that Centrum chewables is the only chewable multivitamin that actually contains iron. So, I take that one every morning and evening. My theory with the chewable vitamins is that the more I can break it down before it hits my system, the better for absorption.

 

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Then, here is the type of ferrous sulfate (iron) supplement I take. It’s NatureMade because that’s what’s available at my local grocery store. I make sure I get uncoated tablets for better absorption by my gut.

I know that too much iron is a concern, but since I was so deficient, taking this twice a day isn’t an issue yet. I know my iron absorption is reduced due to my total gastrectomy, and I was so extremely anemic that I haven’t reached a tipping point of too much iron. When you get too much iron, you get constipated. I can still poop, so it seems ok so far. To confirm my success with this, I am awaiting an August well visit with my doctors to include a vitamin and mineral screen.

On a side note, I suppose you could take the liquid iron supplement, but that just seems like it’d taste extra disgusting. I couldn’t even stand the smell when I gave it to my children when they were infants.

And since iron absorption is better done with vitamin C, I chew some vitamin C before taking that iron pill supplement.

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Last but not least is Vitamin B12. I chose to take the sublingual drops (under the tongue) because I didn’t want monthly shots. I’ve read some folks debating if sublingual drops are effective. With daily sublingual drops taken since my surgery, my B12 is actually high above the typical range. So, the absorption must be effective. I now am balancing to take the drops every other day so that I’m in the healthy range. At this two seconds, I’m taking the B complex sublingual drops; but I’ve also see just B12 available at the store. I’m not sure if the B complex is necessary, but I thought I’d try it.

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Stay healthy my friends.

Follow up Appointment 8.5 months post op

I had my MD Anderson follow up appointment, took my blood and met with my doctor. All is well. I had lost another pound since my last checkup but it was kind of my fault… We took the family to Disneyworld and we were skipping meals and walking a whole lot. I knew I lost weight and have been working this week to put it back on. Really no big deal.

My poop floats… What that means is that the fats from my foods are not getting absorbed as well as pre-surgery. So I got a prescription for digestive enzymes. This should be easily sprinkled on foods and will help make sure I’m absorbing everything.

I have another 10K coming up next weekend. I’m doing well running 2-3x per week 5-6 miles each time and holding my weight. Disneyworld was a blast and we shut down Magic Kingdom one night at 11PM and another night at 1AM. My abs got a major workout carrying kids on shoulders throughout the park for 4 days!! I carried water, peanut butter crackers and almonds with me to keep up with meal skipping.

And for my friend & fellow CDH1er Steve, we ate at an amazing restaurant called Yellow Dog Eats. He’s got the “farewell stomach” tour going on; I’ve got the “stomachless & still enjoying food” tour going on. I had the pulled pork nachos and they were divine!! Enjoyed my glass of wine beforehand! I can’t describe it as well as Steve, but the onions were soaked in a vinegar-based awesomeness, the cream cheese with a chipotle sauce plus however they made the tender pork was amazing! It was one of those moments I wished I could devour it all, but I can’t. What I can do is enjoy a good portion and save the rest for round two!!
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Pathology Report

My brother got his pathology report back, and he had 23 foci of adenocarcinoma (I had 4 foci). Since he’s older, this is exactly what you’d expect. Even though I knew his results would be like that, I still find this whole thing a bit crazy. You have the CDH1 mutation, go through this crazy surgery to remove your entire stomach and then the surgeon assured us no one with our mutation came back without something in their path reports. Pretty wild science. Our ticking time bomb stomachs are now our past.

I am continuing to do really well with my eating and my weight. I’m holding onto my recent weight gain and being able to get back to running regularly. I’m feeling strong enough regularly to be motivated to train. I’m keeping up my energy and now that my portion size is so nice, I’m much better able to stay hydrated. I’m able to drink my protein shake as well in between meals again without feeling like they’re so harsh on my gut.

For breakfast, my current favorite is a mini bagel with a poached egg, shredded cheese and some butter. Tastes so delicious. And it doesn’t seem to take me too long to eat it either…though I’ve adapted so well to eating slowly that I just might not realize that my “quick” is not very fast.

Hooray for being stomachless and cancer free!

My Scars

So if you’re about to have this surgery, you might really want to know what will my scars look like? Here are my scars labeled for you. I’m sure everyone is a bit different. I had very few complications and haggled my surgeon to try and keep the big incision small. This was taken 4 months and ~ 2 weeks post op.

4 months post op

Have a good evening.

A Bit of Anger

During my second return to running, I was jogging on the treadmill during my lunch hour. (Did I mention I’m a crazy runner? Somewhere during all the months spent marathon training, answering the phone while running became ‘normal’ to me.) My brother called and I asked him if he’d heard the results back on his genetic testing. Turns out, he came back positive as well. On paper, the odds are 50/50 to inherit this CDH1 gene mutation. But at this point, every descendent of my grandmother has inherited the mutation. A few expletives might’ve left my mouth at some point about this situation.

Anger is where I head to initially. This is where running is my therapy, my coping mechanism, my outlet, my method for mentally reconciling my life and all the crazy stuff that goes on in this world. When I’m upset, I make myself run faster until the only thing I can think about is breathing. When I’m not mad, running lets me float away in my thoughts. So my second run post gastrectomy from a pure running perspective was good because I pushed pace quite well.

I was supposed to be the only one to go through this crazy surgery, not both of us. We were supposed to move on with life as a family now that my surgery is over. That’s how it should’ve been. We needed to be done with this whole ordeal for the next 20 years until I have to get my kids tested. But this gene is the gift that keeps on giving; it’s just a gift you don’t want. It reminds me of reading The Lottery. This gene mutation is now responsible for me losing my dad at 16, losing my aunt in my 20s, then my surgery,now my brother and later our kids.

But I remind myself, at least I have an option. At least I can test for the gene. My kids won’t lose their mommy when they’re 16. They’ll have me around for a long time. So, for as easy as it is to spiral down the anger tunnel, I will keep my head in a positive place.

So we’ll be there supporting my brother as he starts his journey through a total prophylactic gastrectomy as well. Apparently my family was never meant to be anything other than skinny minnies.

Have a good night. Keep your head in a positive place. Enjoy all the good this world has to offer.

My weight, work and Genetics 101

Now that I’ve returned back to work, my days are certainly much busier. But the good thing about work is you’re more aware of the time and keeping to a schedule. I’ve found if I can eat during the entire day at work, I actually managed to gain a pound the other day. I’ve since lost that pound, but it is reassuring knowing I can gain weight with enough focus.

It’s certainly easier to lose weight than to gain weight. Post-gastrectomy I’m fighting fullness every meal, which is why I have to eat so frequently. More and more food seems to stay down. I’ve read blogs from other folks who had all their food come back up because they had a stricture where their espophagus was reconnected to their small intestines. I’m lucky mine hasn’t done that. My surgeon specifically won’t perform the entire surgery laproscopically because he hand-stitches the connection instead of using staples since the studies show less cases of stricture post-op.

My CDH1 genetic curse is kind of like the gift that keeps giving, albeit a gift you just don’t want. We’re going through the same genetic counseling process now to confirm whether or not my brother has the gene mutation. I have been praying and believing he will not have it. We know the odds for this mutation passing along are 50/50 and if you look at my generation in the family tree, my brother being negative would make my extended family perfectly fit that 50% positive and 50% negative statistic.

Going through the genetic testing discussion helped me understand the genetics around this so much better. Our CDH1 mutation is a letter change from G to T on a specific nucleotide on chromosome 18. The basic building blocks of DNA come from the 4 nucleic acid bases, A (adenine), C (cytosine), G (Guanine) and T (thymine). C is paired with G, A is paired with T.  Because of my letter change, it impacts how the e-cadherin protein was built in my former stomach tissue. E-cadherin is what helps the cells bind together and the protein itself functions in cancer/tumor suppression.  So my mom gave me a good e-cadherin gene and my dad gave me the mutated one. Most people have 2 good ones, so if one falters out, the other is a failsafe. If mine falters, I’m screwed and that cell becomes cancerous. You never know which cell will become cancerous and when. Your body is just constantly regenerating millions of cells for stomach tissue, and it only takes one screw up. This makes the cancer diffuse…there’s no polyp or red mark or anything to let you know a single cell has turned cancerous. And by the time you can see something, you’re probably already in an advanced stage of cancer.

I know that endoscopic screening for HDGC is ineffective. I am proof of that. But the gastroenterologist mentioned something I hadn’t heard: even when some patients present with symptoms of stomach cancer, they still sometimes don’t see anything with the endoscopy.  According to nostomachforcancer, gastric cancer is the second leading cause of cancer deaths worldwide. The 5-year survival rate is 26-28% overall, being so low because early detection is difficult.  All of this information further validates just how right my decision for total gastrectomy was.

I also found this blog of a man who valiantly battled linitis plastica, the same stomach cancer that killed my family members. When I read through his blog, I felt like I was reading my dad’s story. http://paulsgastricjourney.blogspot.com

Informative Article

This article I’d stumbled upon before about the impacts of total gastrectomy. Thought I’d share. It also has some photos of your new plumbing with”TG” (total gastrectomy). And questions about nutrient absorption post surgery. Gotta watch my iron levels!

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/radiganarticle.pdf

It’s Official

I got the pathology report on my stomach today, and mine came back with 4 foci of cancer. It’s considered stage 1 cancer. It reconfirms my (and our family) decision to pursue a prophylactic total gastrectomy.

Now, I know I will be around for my kids for a very long time. And I’d venture to guess, I’ll probably get the itch again to run another marathon ( or 2 or 3…). I also owe my friends a trip to Australia, as well as many other places I’d like to travel to. My recovery is just a minor slowdown in a great life to live.

Thanks to No Stomach For Cancer (nostomachforcancer.org) for sharing info and blogs from others like me leading up to this major surgery.

The physician’s assistant and dietician said I am recovering like a rockstar. Maybe all those crazy marathons I’ve run had more benefits than I even knew.