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Carrie’s Story (Choriocarcinoma)

Carries_Story_Gestational Trophoblastic Disease_LRMy name is Carrie and I wanted to share my type of cancer because I think it’s important to raise awareness.  I am a survivor of gestational trophoblastic disease/choriocarcinoma,  an endometrial cancer or what they call a womb cancer. I was diagnosed in February of 2014,  27 weeks ago. Now for everyone that doesn’t speak doctor.  My cancer was caused by a hydatidiform mole. That is a tumor that develops in the uterus due to the presence of an extra set of male chromosomes in the fertilized egg. Due to this extra set of chromosomes, a growing mass of cysts forms in place of the placenta.

Molar pregnancies can be of two types, partial and complete.  I was 19 when I had my first molar pregnancy.  Now I fall into the 1 percent.  After suffering from partial molar pregnancy, I had a complete molar pregnancy.

It led to serious complications, which include a rare form of cancer.  They did not remove all the tissue , therefore, my choriocarcinoma grew.  Also, on top of all of it, I suffer from a thickened endometrium from having too much estrogen. My last chemotherapy was on Thursday and I’m so extremely happy.  I have to wait a year to try to get pregnant. I am suffering with infertility issues; my chance is slim to none.  So that’s my cancer background .

Carrie

California

Submitted 08/09/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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8 comments

  1. I was diagnosed with stage 2 breast cancer on June 9 2014. I have a strong family history of it in my family. My mother is a 34 year breast cancer survivor her mother my grandmother died from it at the age of 54 which is my age. I had a bilateral mastectomy , that was a no brainer for me and now I face chemotherapy 6 treatments of 3 drugs and then herceptin weekly for a year. I did have reconstruction also after my mastectomy. I’m scared to death of chemo and pray for strength to get through it. Cancer is a very scary word but I’m convinced that I can beat this awful disease and get in with my life and enjoy my two children who are grown and my two grandchildren of which are everything to me. It’s been a tough road so far and I’ve done well I just pray I make it through chemo with less complications. I know there is light at the end if the tunnel, I just want to get to it. That’s my cancer story. God bless everyone who has this horrible and awful disease.❤️

    • You don’t have to use the big “c” word. Just say abnormal cells. That is all they are. We all have them. Just for some reason in some people they start multiplying. In your case, it is in your genes. I have Ehlers-Danlos Syndrome with Hypermobility. It is a genetic collagen disorder but no one in my family was ever diagnosed with it. But learning more about it, I can see where some relatives had little things going on. I am the only one disabled. I went from walking one day to my legs not wanting to hold me up the next. That was 3 years ago. I may be in a wheel chair by the end of the year. It is a connective tissue disorder. But collagen is our glue that holds our body together. My shoulders try to come out of joint whenI sleep. Right now they think my rotator cuff might be torn. And the other shoulder is starting to act the same. Ugh! I wish you much luck. I have two granddaughters. One was just born in May and is in Hawaii. We did get to go see her though for a week. Just about killed me to leave her!

    • I lost my grad mother and aunt to breast cancer and though this process I have gained many survivor s and fighters of breast cancer..I admire your battle and hope . I like the abnormal cells comment. Made me smile.

    • Robin I hope chemotherapy side effects are not to bad for you. Be strong love.

  2. I am so sorry for what you are going through but stay strong! If it was meant to be, it will be. I was told I was pregnant way back in 1983. We got married in 80 and no birthcontrol. We were so happy. Ending up at the ER thinking I was going to bleed to death. After being home a few days, I passed my “hairy mole”. Then came the D&C at the Naval hospital with no anesthesia! I was hollering out in pain and the doc kept asking me why I was making so much noise!! I was not the person then that I am now or he would have a permanent imprint of my foot on his face! Anyway, found out I had endometriosis and ended up having numerous laparoscopic surgeries for that reason. But in 86, we were blessed with a baby girl. Although only 4-5 periods a year and 1tube blocked. 22 months later our son came along. Then I had to have a hysterectomy because the endometriosis was back stronger than ever. That was in 89. I was told I would never get pregnant without in vitro fertilization. So never give up hope until all hope is gone! We had come to the conclusion we would have to adopt-and we would have. But you need to be an advocate not only for your cancer (I hate that word) but for hydatiform pregnancies also. Start a blog. I bet most women have not heard of it. You have a rare process that has been going on and I am nominating you as a spokeswoman for the cause! I wish you much luck and happiness! Let me know how the blog goes!

  3. I want to start by saying breast cancer saved my life! I know, it sounds unbelievable. And I’m not happy about having to go through the hell of chemo, mastectomy, and radiation everyday for 7 weeks straight. But I DID SURVIVE! However, when they did a biopsy on my lymph nodes they found a foreign tissue they did not recognize. A sample was sent to the mayo clinic in Minnesota. It was caused by a rare and deadly decease called Amyloidosis. (am-uh-loi-Do-sis) . This decease occurs when a substance called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ. It can effect different organs in different people, and there are four different types. I have type (AL). Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract. It is rare and the exact cause is often unknown.

    There are only two medical institutes in America that are educated on this decease. One being Mayo clinic in Minnesota and the other being Froedtert Hospital and Medical College of Wisconsin. Fortunately for me I only live an hour away from Froedtert Hospital. The other resources are in England. There has only been a treatment for my type of Amyloidosis for the last 16 years. It was a combined effort of America’s Mayo Clinic and a similar clinic in England that came up with a treatment/cure. Until now there has been 96% positive response and 76% total remission. I am happy to say I got to add to that 76%, and I am in total remission!

    The first thing I was told is; had I not been diagnosed when I was and started treatment when I did I would not have lasted 6 more months. This decease had been attaching me for 7 years. And had caused some pretty severe damage to my heart as well as my lungs and digestive system. I had been going to the doctors for years with issues involving these very organs but never had been diagnosed with Anything. No one knew what to look for.

    February of 2013 I started treatment. It was not easy as it involved an even more harsh chemo than I went through with breast cancer. But I got through it and in July of 2013 I was told I was in remission. Yay! I got to stop chemo. I had to wait until February of 2014 to have the rest of my treatment, giving my heart time to get stronger. Then I had to have an Autologous stem cell transplant. I was lucky that my own stem cells could be used. Most people need a donor. I think this made my recovery faster.

    I checked into the hospital on February 12th. That day I was giving what I call the “Atomic Bomb of Chemo”. One dose killed off all of the cells in my bone marrow. Then 2 days later. the 14th. That’s right Valentines day, my own stem cells were re-infused into my blood stream. I was told that was my new birthday. (I am now 6 months old.) Ironic because my original birthday was coming up on February 20th. I guess this year I got the birth of life of which I am thankful for every day I wake up!!

    There is a very good website to learn more about Amyloidosis and the symptoms.
    Google: http://www.amyloidosis-cancer.net

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