Lisa Ryan

First post: 6/15/2017 Latest post: 7 hours ago
     I want to thank you for visiting this site.  Your love and support has meant the world to me and keeps me positive as I navigate through this new chapter in my life. I also want to spread awareness about appendix cancer!  It is very rare and shows little symptoms until it has progressed far.  I worked in GI for many years and had never heard of it until it found me.   Some doctors here haven't heard of it! Just know that if anyone you know has appendicitis that you always need to check for cancer.  I've heard of people as young as 14 with this disease. Once the appendix ruptures it becomes much harder to treat so DO NOT delay in checking out ANY symptoms in your right lower abdominal area.  Mine started with just a subtle slight thickness to my colon  for a month or so before it ruptured.  I had a few people feel it including a surgeon , massage therapist and physical therapist but it was so subtle they all said it felt normal. Because of this I didn't check it out further until I started having pain.   Also, I had a colonoscopy just 2 years earlier and I was as clean as a whistle so it couldn't be my colon, right?    In women, appendix cancer tends to spread first to the ovaries,  so many times it is mistaken as ovarian cancer and goes undetected in the appendix for awhile. The colon cancer marker (CEA) is important to check but doesn't always rise in every case.  My very sweet friend Sherry  set up this website so I could keep them posted since I'm so far away now.  I've written quite a long account of what I've been going through for the past 9 months so  it's there if you want the details.  Most importantly, I want you all to know how grateful I am to have you in my life and how much I appreciate all your prayers and love!  I love you all very much! :-)

MY STORY
      Back on September 15, 2016, I had an appendectomy for a ruptured appendix here at Lasalle Hospital in Montreal.  2 days before that,  I had gone to a clinic for pain in my lower right abdominal area. (We had not been assigned a family doctor yet) I specifically told them I was  worried about appendicitis and they took an x-ray, said I was constipated and sent me home with laxatives (a bad thing for appendicitis BTW) They wanted an ultrasound but couldn't fit me in until Friday.  They said I had to wait. Gotta love socialized medicine!  On Wednesday, with no more constipation but still in pain, I checked myself into the ER.  14 hrs later they diagnosed my ruptured appendix.  (I felt it rupture earlier that day when suddenly all the pain went away). On the ultrasound, my ovaries seemed enlarged, (3 cm) but the surgeon didn't think they were anything more than ovarian cysts so they left them alone and referred me to a gyne who set me up for a follow-up ultrasound in late November.  After surgery, the surgeon told us they would call us if the appendix was malignant.  We asked them to call us either way, but we were told that in Canadian hospitals, they only notify if it's bad news.   I never heard from them so thought everything was ok. 
     Fast forward to November 28; I was still not feeling well, and the cysts on both ovaries had grown to softball size. I was finally coming in for my ultrasound at the same hospital so while I was there I decided to pull my appendectomy pathology report from archives.   You can imagine the shock when I read the pathology "mucinous adenocarcinoma of the appendix". I had never heard of appendix cancer. I was dumbfounded that I hadn't been notified. How could a hospital be so negligent?!?   The worst part was having to find out myself, alone, almost 11 weeks after surgery.  Prior to this situation, we didn't have much faith in the Canadian medical system. They had totally mismanaged James' ruptured bicep tendon. Now I'm freaking out about the healthcare. A nurse had told James when he was waiting for his surgery "cancer patients die before they get their surgeries Mr. Ryan.  You aren't going to get yours." This kept running through my head. How could I tell my family about this, especially after what they had just done. Well, I decided I couldn't until I had a plan so I kept it to myself for just a few days until I worked it out. Luckily James went out of town for 4 days which made it much easier and this wasn't something I could have told him over the phone anyway.   I was able to get ahold of my appendectomy surgeon right away to explain the situation. He came down to see me immediately, felt horrible and hooked me up with a colleague that deals with these types of cancers. She saw me within a couple days and then scheduled me for surgery 2 weeks later.  I had a really good feeling about her.   She was sharp and compassionate.  I decided I would get the surgery in 2 weeks. With negative CT scans (outside the peritoneal cavity) and surgery on the books I felt much more comfortable breaking the news  to my family.      It's hard to say how much more difficult my cure will be because of the non-diagnosis and the time lag.  It is definitely way worse after the appendix ruptures and spreads in the peritoneal cavity. 
     Debulking  surgery was on Dec 14 which included a total hysterectomy and removal  of the right side of the colon.  I also had a liver biopsy for a questionable spot. The mucinous cancer is pretty sneaky because it's basically like little slimy mucous balls, that cling to everything in the peritinieal cavity.  The surgeons removed a dozen of the balls that looked benign for testing, but not all, because there were so many. They removed everything that looked like cancer. Overall, we felt really good about the surgery and the recovery was pretty easy.  I was back to full activity in 4 weeks, and was ready to go back to the gym and skiing in 8 weeks.   We were happy with the pathology report.  The liver was negative which was a huge relief.  Most of the mucinous balls were benign with the exception of the ovaries and near where the appendix was.    The next step was IV chemo, then cytoreduction surgery with HIPEC. Here's a link to what it is, if you want to know more.   http://www.cancercenter.com/treatments/hipec/  We chose to skip preop IV chemo because my oncologist told me there were no studies proving that preop chemo changed the outcome  and I wanted to be strong going in for the next surgery.  Also, I read several studies that proved that many cancers are stopped with an all organic, mostly raw vegan diet so I wanted to give that a shot.  It couldn't hurt!    I also had a much needed vacation planned to California that I was not willing to give up.  Looking back now I know I made the right decision.  My friends and family were so wonderful to me.  They bought all my organic foods,  juiced and fed me and just let me relax and have fun!  It was an amazing 2 weeks and I wouldn't have traded it for anything!!  I am so incredibly blessed! (Pause for some tear clearing).   
     Unfortunately, the diet alone didn't stop this particular type, but it made me very healthy for the surgery and my surgeons were amazed by how fast I recovered. Cytoreduction surgery with HiPEC was performed on May 9, 2017.   The surgery was successful in that the surgeons felt they removed ALL of the mucinous cancer. This involved taking half the rectum and sigmoid and 10 cm of small bowel but I was lucky in that all other organs were unaffected and so far all my scans are negative for metastasis outside the peritoneal cavity.    The bad news from surgery is that there was a lot of mucinous cancer in my abdomen, a score 19 on the PCI scale.  They could have canceled the rest of surgery because the usual cutoff is 18 but I have an amazing surgeon who was willing to take 10 hours to pluck every little cancer blob out of me and give me a chance.  I will be forever grateful for him!! Even with that score, my surgeons are quite optimistic about my prognosis and felt they got it all!!   
     I am so incredibly thankful for Julie Harris, dear friend of 22 years now and my  beautiful daughter, Brooke, who came out and helped me right after surgery.  You are my angels!  I also have to thank the greatest man in the world, my hubby Jamie, for his tireless and relentless efforts to keep me comfortable, fed and clean and for staying with me as much as humanly possible. Also to my son Matt and his girlfriend Dee for lifting my spirits with their visits, including bringing my dogs to the hospital and sneaking Dee's kitten, Pippin, into my room .  Even though there have been some bad experiences with this health care system, I want you to know that I am very happy with and confident in the team that I am working with now and recently I was assigned a family doctor who is also wonderful so no more worries!! 

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