Wednesday, November 7, 2012
My decision to have a prophylactic gastrectomy
Hello. In short (since I am curretly using my cell and it is pretty late), I tested positive for the gene mutation that causes HDGC. I have been researching like crazy and am pretty scared for the difficult road ahead of me, but I know that my decision to have a total gasrectomy is my best option. I want to live a long life with my husband and 3 children. My mom is doing ok since her surgery, the good days are finally seeming to occur more often. More updates to follow, really tired and was just researching some trying to figure out how much youth I am giving up. I am really nervous that I may not be able to return to my job as I am VERY active with 12 hour shifts as a floor nurse and really do not want to give that up! (amongst so many other things). Needing inspiration for a healthy, long lived future.
Thursday, February 23, 2012
Finding out about HDGC and the CDH1 gene mutation
I graduated from nursing school the summer of 2010. I was so excited to finally be done with school after it took me a few years to decide what I was going to do with my life. I figured that I had to do something to be able to provide for my children. I got my first nursing job at a nursing home that November. Then I learned that I was pregnant with my third child. He is a blessing, don't get me wrong, but all I could think about was the timing. Now?! I just got my career started! I wished so hard for a girl since I already had two boys. I must admit, I cried when I found out I was having ANOTHER boy. Thinking back, I am somewhat ashamed of my feelings. How selfish of me! I should be nothing but grateful that I have three healthy children, regardless of their gender. Or are they all that healthy? After learning about this gene mutation that my family carries, I cannot help but wonder if they are destined to a life of hell cut short due to cancer. I mean sure, anyone carries the risk of developing cancer someday I guess. But not everyone finds out that they are pretty much garunteed because cancer is already predetermined and etched into their genetic make-up to mutate and show itself to your family members whenever it sees fit. With that, I try to look at the positive in all of this. A chance to be proactive. I tied my tubes and am unable to have any more children. Mostly because I want to be able to afford the ones that I have. But, if I had known that I may be passing down HDGC, would I have had children in the first place? I would have been genetically tested first. Now I am testing not only for myself, but for my three children. If I don't carry it, then they won't have to worry about it someday. Some of my family members are choosing not to test. For me, it isn't even questionable. If I carry this gene, I will prophylactically choose to have a total gastrectomy because the numbers would be against me.
I was at work, about 7 months pregnant when I got the phone call that would change our lives. It was my Mother. She was telling me that she tested positive for stomach cancer. At this point we didn't yet know about the gene we carry. I had an emotional breakdown. All I could think about was how my grandmother had died of this very same thing 5 years ago. How can this be happening AGAIN? I was stuck at work because as a nurse, I cannot just abandon my patients. Management there was less than supportive. I always wondered how they could lack so much empathy when they were supposed to be "nurses", but that is another story. I now work in a hospital on a cardiac unit and I love it! I finished out my work day since they couldn't get anyone to cover the rest of my shift. I think I got to leave a half hour early. I went straight to my Mom's house. I found her crying in her chair, hugging my only sister who is just 16 years old. We sat and cried as I looked at pictures they took of the tumors inside of her stomach. My Mom raised us on her own. My father was there for her financially. He paid child support, but he was a functioning alcoholic. He too had cancer. He has been diagnosed since 1999 with a brain tumor. They did 2 different brain surgeries, but due to the location of his tumor, they cannot get it all. He went through chemo and radiation and currently lives with me in my basement. He is different now, mentally. His tumor has been stagnant the past couple years and he hasn't had chemo or radiation lately. My sister's father died a couple of years ago. My Mom has always worked hard raising us girls to the best of her ability. A lot of people look up to her. If any woman has strength, it is her!
How my Mom found her cancer is by fluke. She had been having bowel problems for a long while. She would go for 1-2 weeks without having a bowel movement. She was undergoing tests to try and figure out the cause. I don't think it was even related to the cancer. Her doctor decided to do an upper GI just to check around considering her mothers history of gastric cancer. My Mom almost didn't even go along with the test, telling him the problems she was having did not feel related to her stomach. Her stomach felt fine. Apparently, those with gastric cancer usually find out "too late" because by the time the symptoms appear, it is because the tumors have already grown large in size, causing the symptoms. Thankfully, she did go for her test. At first the doctor told her she had two small ulcers in her stomach. He biopsied and that's when we found it to be cancer. Tumors. Not ulcers. She scheduled her first of what would end up being two different surgeries.
She was scheduled for her partial gastrectomy. She asked if they should just take all of her stomach to be safe. They told her that there was no need for that at this point. She ended up with about 1/3 of her stomach left after the partial gastrectomy. They staged her at a 2 because the tumors reached the outer layer of her stomach. They didn't see any cancer surrounding the outside of her stomach or any other organs. Her lymph nodes were clear. 0 out of 15 had cancer! This was excellent news! We were so excited and thought maybe now we could put this all behind us and never have to hear anything more about gastric cancer ever again. We were wrong. This is when they found out that she had a very rare form of this type of cancer. Signet ring cell adenocarcinoma (and no tests exist to find these cells at an early stage) http://www.ncbi.nlm.nih.gov/pubmed/15574148
After the discovery that my Mom had tested postitive for Hereditary Diffuse Gastric Cancer (HDGC) and the hereditary CDH1 gene mutation http://cancer.stanford.edu/patient_care/services/geneticCounseling/HDGC.html
After she worked so hard to try and get her normal life back from her first surgery, the doctors finally agreed that maybe total rather than partial gastrectomy was the way to go. Like most other cancers, there are no tests that can detect signet ring cells. They are too small and diffuse and a biopsy is the best way to detect it. But you cannot just randomly biopsy every few months and hope they cut out the right area. I can only hope that with further medical developments, something better can be done. For now, it is prophylactic total gastrectomy and serial testing of the breasts and other areas this cancer is known to spread to. She just recently had her second surgery to remove the rest of her stomach. During surgery, they already found more cancer cells that were not there only months earlier from her first surgery. They did get all of these cancer cells too, and they were so small that they could fit through the teeth of a comb. Now that her entire stomach is gone, we are only left to hope that there is nowhere for this cancer to grow anymore. My Mom is only 50 years old, diagnosed at 49. She was a health freak before all of this, so it was a huge suprise that she ended up with gastric cancer. My grandmother died of it at the age of 63. For her, it was too late because by the time they found it, her tumor surrounded her entire stomach and ultimately spread to her abdominal wall. After all that she has been through, she is still fighting and I know that she will continue to because that is her nature. She HAD cancer, cancer does not have her! She is just now getting back to work. She has been through hell with learning to eat again, getting sick, but she has came a long way and with changes, a little at a time, I believe that her strength, courage and will power will get her most of her "normal" lifestyle back! She finished chemo and radiation before her second surgery. She still has a peg tube to help keep her well nourished, but this is only temporary as she builds back up to being able to eat food. She lost about 30-40 pounds in all of this, but is maintaing a healthy 118 currently. This is a little small for her, but she knows what she needs to do and continues to educate herself to reach her best health goals! I admire her for everything she has done and can only hope that I would be as strong. I don't know what I would do without her, and if I test positive for HDGC, I NEED her by my side! We also lost my great grandmother to cancer and one of her parents. We believe that it was due to this gene, but at that time they didn't know of it. It was lung cancer they said she died of, but I think it must have originated in her stomach and metastisized (spread) to her lungs, since that is one of the organs it tends to spread to. This is part of our story. Now I just have to be tested and go from there.
I was at work, about 7 months pregnant when I got the phone call that would change our lives. It was my Mother. She was telling me that she tested positive for stomach cancer. At this point we didn't yet know about the gene we carry. I had an emotional breakdown. All I could think about was how my grandmother had died of this very same thing 5 years ago. How can this be happening AGAIN? I was stuck at work because as a nurse, I cannot just abandon my patients. Management there was less than supportive. I always wondered how they could lack so much empathy when they were supposed to be "nurses", but that is another story. I now work in a hospital on a cardiac unit and I love it! I finished out my work day since they couldn't get anyone to cover the rest of my shift. I think I got to leave a half hour early. I went straight to my Mom's house. I found her crying in her chair, hugging my only sister who is just 16 years old. We sat and cried as I looked at pictures they took of the tumors inside of her stomach. My Mom raised us on her own. My father was there for her financially. He paid child support, but he was a functioning alcoholic. He too had cancer. He has been diagnosed since 1999 with a brain tumor. They did 2 different brain surgeries, but due to the location of his tumor, they cannot get it all. He went through chemo and radiation and currently lives with me in my basement. He is different now, mentally. His tumor has been stagnant the past couple years and he hasn't had chemo or radiation lately. My sister's father died a couple of years ago. My Mom has always worked hard raising us girls to the best of her ability. A lot of people look up to her. If any woman has strength, it is her!
How my Mom found her cancer is by fluke. She had been having bowel problems for a long while. She would go for 1-2 weeks without having a bowel movement. She was undergoing tests to try and figure out the cause. I don't think it was even related to the cancer. Her doctor decided to do an upper GI just to check around considering her mothers history of gastric cancer. My Mom almost didn't even go along with the test, telling him the problems she was having did not feel related to her stomach. Her stomach felt fine. Apparently, those with gastric cancer usually find out "too late" because by the time the symptoms appear, it is because the tumors have already grown large in size, causing the symptoms. Thankfully, she did go for her test. At first the doctor told her she had two small ulcers in her stomach. He biopsied and that's when we found it to be cancer. Tumors. Not ulcers. She scheduled her first of what would end up being two different surgeries.
She was scheduled for her partial gastrectomy. She asked if they should just take all of her stomach to be safe. They told her that there was no need for that at this point. She ended up with about 1/3 of her stomach left after the partial gastrectomy. They staged her at a 2 because the tumors reached the outer layer of her stomach. They didn't see any cancer surrounding the outside of her stomach or any other organs. Her lymph nodes were clear. 0 out of 15 had cancer! This was excellent news! We were so excited and thought maybe now we could put this all behind us and never have to hear anything more about gastric cancer ever again. We were wrong. This is when they found out that she had a very rare form of this type of cancer. Signet ring cell adenocarcinoma (and no tests exist to find these cells at an early stage) http://www.ncbi.nlm.nih.gov/pubmed/15574148
After the discovery that my Mom had tested postitive for Hereditary Diffuse Gastric Cancer (HDGC) and the hereditary CDH1 gene mutation http://cancer.stanford.edu/patient_care/services/geneticCounseling/HDGC.html
After she worked so hard to try and get her normal life back from her first surgery, the doctors finally agreed that maybe total rather than partial gastrectomy was the way to go. Like most other cancers, there are no tests that can detect signet ring cells. They are too small and diffuse and a biopsy is the best way to detect it. But you cannot just randomly biopsy every few months and hope they cut out the right area. I can only hope that with further medical developments, something better can be done. For now, it is prophylactic total gastrectomy and serial testing of the breasts and other areas this cancer is known to spread to. She just recently had her second surgery to remove the rest of her stomach. During surgery, they already found more cancer cells that were not there only months earlier from her first surgery. They did get all of these cancer cells too, and they were so small that they could fit through the teeth of a comb. Now that her entire stomach is gone, we are only left to hope that there is nowhere for this cancer to grow anymore. My Mom is only 50 years old, diagnosed at 49. She was a health freak before all of this, so it was a huge suprise that she ended up with gastric cancer. My grandmother died of it at the age of 63. For her, it was too late because by the time they found it, her tumor surrounded her entire stomach and ultimately spread to her abdominal wall. After all that she has been through, she is still fighting and I know that she will continue to because that is her nature. She HAD cancer, cancer does not have her! She is just now getting back to work. She has been through hell with learning to eat again, getting sick, but she has came a long way and with changes, a little at a time, I believe that her strength, courage and will power will get her most of her "normal" lifestyle back! She finished chemo and radiation before her second surgery. She still has a peg tube to help keep her well nourished, but this is only temporary as she builds back up to being able to eat food. She lost about 30-40 pounds in all of this, but is maintaing a healthy 118 currently. This is a little small for her, but she knows what she needs to do and continues to educate herself to reach her best health goals! I admire her for everything she has done and can only hope that I would be as strong. I don't know what I would do without her, and if I test positive for HDGC, I NEED her by my side! We also lost my great grandmother to cancer and one of her parents. We believe that it was due to this gene, but at that time they didn't know of it. It was lung cancer they said she died of, but I think it must have originated in her stomach and metastisized (spread) to her lungs, since that is one of the organs it tends to spread to. This is part of our story. Now I just have to be tested and go from there.
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