The results showed a small cyst and mild fluid in my lower right abdomen area. It was decided that we would monitor the cyst and fluid and have an MRI in one year. We thought it was nothing more than an ovarian cyst. I had MRIs done in October 2015, April 2016 and October 2017, with all indicating no change in the cyst size, but the surrounding fluid was increasing ever so slightly. Throughout all of these tests, I was not having any real symptoms to indicate cancer or anything serious.
After reviewing the results from October 2017 MRI with my primary care physician, I was referred to a cancer surgeon. Our thinking was that if it was cancer she would know what to do. I was scheduled to have surgery on February 2018 to remove the ovarian cyst, surrounding fluid and biopsy to see if a hysterectomy would be necessary. I woke up after surgery to be told that the cyst was not attached to my ovary but to my appendix and it had ruptured and released mucin in my abdomen. The biopsy revealed appendix cancer. I was totally unprepared to hear the word cancer. I had Stage 4 appendix cancer, Mucinous Appendiceal Adenocarcinoma.
My surgeon said she was not the proper surgeon to do what needed to be done and I was referred to an appendix cancer specialist at the Piper Cancer Institute in Minneapolis. I am so grateful for the referral to Dr Cassandra Anderson. She was fantastic from the minute I met her. It was decided that surgery would be April 5th, 2018. She wanted me to spend the next 30 days preparing for surgery. She asked me to exercise every day to strengthen my heart and lungs and eat healthy with an emphasis on 70-90 grams of protein to help during surgery and recovery. This advice was invaluable. Prepare for surgery like you would a marathon. It is a journey.
Surgery was eight hours longs with seven days recovery in the hospital. I had a full hysterectomy, removal of my appendix and gallbladder as well as scraping of my peritoneum, omentum and diaphragm. I then had HIPEC chemo bath for 90 minutes. Surgery was a success. The NG tube was a struggle for me but it is necessary. I had it in for five days. Getting home after surgery was somewhat emotional. I was glad to be alive and to be home. Two weeks after being home, I had a set back as I got very sick on some greasy food. It was like having the flu times ten. We believe it had to do with no longer having my gallbladder and with my stomach and intestines not functioning normally yet. I slowing recovered from that setback.
Now at three-plus months from surgery, I’m blessed to be able to say that the cancer was localized near my appendix and no cancer was found anywhere else based on the pathology reports. I have gained back five pounds of the 20 I lost during this process. My surgeon told me I was fortunate to have had a very slow form of appendix cancer. I have no evidence of the disease. My goal is to keep my body as healthy as possible so it has the ability to fight off any rogue cells in the future.
The three things I would recommend after surgery is rest, good nutrition and walking. I took a couple naps a day for about a month and slowly tapered down to not needing them. I now eat as organic as possible, with healthy fats, fruits and vegetables. I stay away from processed food and sugar as much as possible. I also do essential oils and use an alkaline machine for my water. I feel fantastic now. Nutrition is so important.
My story would not be complete without thanking my husband, family and friends for their prayers and support. And above all, my faith in God and His faithfulness each and every day.
Hyperthermic Intraperitoneal Chemotherapy
Heated chemotherapy, delivered directly into the abdomen, after complete cytoreduction. If the surgeons are able to remove the all the tumours, you will be given a heated chemotherapy drug. This is usually Mitomycin C. This is put directly in your abdomen while you are in theatre and the chemotherapy is left in for 90 minutes. HIPEC will penetrate tumour nodules up to 2.5mm in size. The heat increases cytotoxicity of chemotherapy
Chemotherapy given into the abdomen during surgery is called intraoperative chemotherapy.
When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…
I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.
They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.
I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.