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In the five years that I spent on the Board of Directors of No Stomach For Cancer, and as a member of our support team, I have talked to others who carry the CDH1 mutation about countless issues…. genetic testing, upcoming surgery, nutrition, life without a stomach… One of the biggest challenges, though, is not just the physical aspect of the diagnosis but the psychological/psycho-social issues as well.

First and foremost, most people feel lucky to have the information and choices, often choices that another family member did not have. Sadly, it is only after one or more deaths occur in a family that the CDH1 mutation is discovered in the family. 

Many people have total gastrectomies- complete removal of the stomach- and, thankfully, do not require any kind of treatment. They have to make the huge adjustment to life without a stomach, but, overall, they do not require lots of medicines; in fact, they might not require any, except some initial pain medicine shortly after the surgery. You look at some patients and would never guess they do not have a stomach. They look “normal,” healthy even. And while they might look healthy, even “great,” they might be far from that. As everyone knows, , looks are deceiving. 

You see, what many people do not understand about those who have had their stomachs removed ~and those fighting other illnesses, too~ is that each day might be a struggle. Some days, it takes all one’s energy to consume enough calories to get through the day. It is not simply about putting food into your body or “just eating a little more;” it requires tremendous strategizing and effort,. It is the same way people often feel when they are trying to lose weight- it takes a great deal of time and effort. You can no longer just put something in your mouth and wait for the calories to add up. You have to pace yourself. Eating a food that you could previously inhale might make you sick now. Or, eating that food could make you sick one day but be totally fine the next day. If you have too many incidents during which you feel sick, you could find it easier not to eat. Meanwhile, your weight may be dropping and you may even be getting too thin. Because our society values thin, people tell you you “look great,” even though you look in the mirror and see someone who is struggling. Hearing well-intentioned people telling you you “look great” can make you feel even worse, almost like you shouldn’t be feeling bad, down, or anything negative. 

Because you look healthy, it is very difficult for people to understand that you may still be really struggling…. with nutrition, energy, loss of what your life “used to be” when you had a stomach. While you are going through it, you wonder if you will ever be “normal” again. Will you be able to exercise, run, chase your children, return to your job that is physically demanding…. will you have the stamina to get through the day???

As weeks and months pass after your surgery and people go back to their normal lives, there is an expectation that you will too. And you do…. And while you might be going through your normal routines, it is extremely challenging both physically and emotionally. You are not the same. You are not wallowing in self pity- after all, you know you are lucky to be cancer-free, an opportunity that many of our loved ones were not given. You don’t want to complain, because you know how lucky you are. However, you desperately want to get back to “the way things used to be,” to the days when simple tasks like eating and working did not require all of your energy. You wonder if having this life-saving surgery was worth it. Intellectually, you know it was, though psychologically and emotionally you are not so sure. 

One of the trickiest parts of all of this is that “everyone is different.” What works for one person might not work for another. It is trial and error with so many things. It becomes overwhelming and exhausting. 

I have just touched on a few of the issues that impact those who carry the CDH1 mutation. I realize that we are all at different places in dealing with it. Some of us are in our late teens and 20’s while others are in their 40’s, 50’s, and older. Each age group has unique challenges. There is a huge difference having a total gastrectomy at 20 versus 50. 

My hope is that it will generate some honest discussion. We always want to provide a positive atmosphere because we believe that having hope and being positive are important to one’s physical recovery when dealing with any kind of challenge. However, we are realists, and know that there are many for whom physical and emotional recoveries have been very challenging, negative experiences.

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  • Rated 5 out of 5 stars

    Thank you for writing this - so much of it resonates with what I'm experiencing now, three years after having a TG. For a long time, I've felt the biggest issue I've been facing is managing my energy. But just recently I've come to realise the importance of managing mood, too. Very often, I'm not 'sadder but wiser', just sadder. Or more irritable or up and down. I'm certainly not as easy going as I was before surgery.

    I do think these mood changes are closely linked to what I eat and can be managed in similar ways to trying to keep my energy up. I really like a book called Mood Mapping, which teaches you to be more aware of mood and is brimful of practical ideas to improve your psychological state.

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  • Rated 5 out of 5 stars

    I agree with everything you say. I am 72 years old and had my stomach removed on June 23,2014 and I still have problems with eating and other things. People do not understand what we go through they sometimes want you to keep from doing things that you want to try and do. All this makes a person feel worse and all we want is to be treated like everyone else.

    from New Hampshire, USA
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  • Guest - Stefani

    Thank you for this article!
    I was 40 when I was diagnosed with stomach cancer. Since it was in the early stage the TG was considered curative. Five years later my GI specialist said she was happy to dismiss my case. So I was very lucky thanks GOD!
    After my surgery, I realized that life was a gift and I had to be thankful and appreciative. Although I struggled with post-op complications, and lost lots of weight, I still was happy to have been given a second chance and promised myself to make the rest of my life better. I returned to work 6 months after the surgery. I was 20 lb thinner but I had big hopes that things would go back to normal gradually. Unfortunately, other complications started to happen as my energies and body's reserves were depleting. I became very anemic at the point I had to get time off from work. Also gall bladder stones, that were formed due to excessive weight loss, were bothering me time after time. I fell in a vicious circle since I needed to eat animal fats to gain weight but if I ate too much I had a gall bladder attack. Trying to gain wight became very stressful. Than my lower back started to bother me (especially because I worked sitting-I am an accountant). I knew I had to exercise but after 8 hours of work and 2 hours commuting to and from work, I had no more energies left. So my situation (health and work) became from bad to worse. One day I felt a sharp pain in me hip area and I had to leave work and go home. The same night I could not walk any more. I was lying on bed, terrified from the idea that I could end up in a wheel chair. And I cried a lot... This time I had to take a year off from work and go through therapy so I could start walking again. My spine had been damaged, it had been rotated due to pulling from scar tissue, and loss of muscle to support it.
    I went back to work again, but this time not as confident as before and six month later I lost my job.
    One more year has past. I am still unemployed, now 47 years old, and I feel more anxious, more insecure than before.
    What will go with my life? I really don't want to go back to 9-5 job, but what else can I do? My "normal" is not what other people expect. Have I become useless? My family has assured me many times that this is not a right thought, and have supported me fully, but I still feel guilty.
    Any thoughts or suggestions on my situation would be greatly appreciated.

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  • Guest - Anna Gobcalves

    Rated 5 out of 5 stars

    My husband is 74. Up to now he was verify and we'll, till he had his stomach totally removed due to cancer.
    He is very depressed. I need encouragement from those who have gone through the same.

    from North West, South Africa
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  • This time I had to take a year off from work and go through therapy so I could start walking again

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  • Many people have total gastrectomies- complete removal of the stomach- and, thankfully, do not require any kind of treatment. They have to make the huge adjustment to life without a stomach, but, overall, they do not require lots of medicines; in fact, they might not require any, except some initial pain medicine shortly after the surgery. You look at some patients and would never guess they do not have a stomach.

    from Lahore, Pakistan
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  • Guest - Taylor Putz

    I just want to say that I have been following your blog for quite a while now and it has really grown on me. I am much more of a frequent visitor then I used to be.

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  • I was diagnosed with esophageal cancer in October 2017 & underwent pre-op chemoradiation therapy. My surgery was on February 12, 2018. Originally, my surgeon thought he would be able to remove the lower part of the esophagus & upper stomach; however, he ended up doing a full gastrectomy. I was on a feeding tube through the end of April. I did have a scar-tissue stricture that was dilated & relieved by a stent; the stent came out just a few weeks ago. I'm able to eat small, moist meals, but I have no energy. I also suffer from extreme rib pain where my ribs were spread during the surgery. I have just started B12 injections and am working with a nutritionist to develop a diet of calorie/nutrient dense foods. I drink Ensure, but it makes my pulse race and saps my energy. Has anyone else experienced a similar reaction to Ensure? I've lost 24 pounds and don't want to lose anymore. Any comments about your experiences would be most appreciated.

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