Celebrating 25 Years of Survivorship
On October 29, 2022, I reached my 25th year of survivorship, measured from the surgery that diagnosed my appendix cancer/PMP. What a journey. As with many anniversaries, this date is a time for reflection. I’d like to share my story and what these years have taught me.
My Story. In 1997 at age 41, I noticed some changes in my body. Most importantly, my belly was growing rounder, causing me to double my workout efforts. But when my husband commented on how firm my belly felt after just a short time with more workouts, a light bulb went off: “This is not normal.” At my annual exam a month later, my gynecologist agreed something was wrong and sent me for a sonogram. The technician’s reaction sent a signal that something was alarming. Surgery was quickly scheduled for October 29 due to a large mass the sonogram showed on my right ovary. That tumor was removed, all 4 pounds and 6 inches in diameter, along with my abnormally shortened appendix and more tissue and mucin. With this surgery, I was introduced to the world of PMP/appendix cancer.
My local surgeon had encountered appendix cancer/PMP a few times before. He felt that he could control my “slow-growing” and “relatively benign” disease with periodic debulking surgeries. I needed surgery again in 1998, then a diagnostic laparoscopy with biopsies in 2000, and then another debulking in 2006. From 1997 to 2008, I relied on local treatment and advice. I made some forays on the internet for information, but did not find resources that were helpful to me. In 2008, due to massive spread of disease, I was told I might want to think about cytoreduction surgery (CRS) and HIPEC by a specialist. At this point, I again searched for web-based information, and I established contact with PMP Pals.
So, I rather confidently sent my records to an in-state, in-network major cancer center with an appendix cancer specialist. When my request for an appointment went unanswered for weeks, I called to find out why. The surgeon’s staff shocked me by saying that he felt I was “too far gone” — he would not perform surgery, and he felt my condition would soon decline.
What? How could I reconcile my local surgeon’s rather lukewarm assessment of the need for HIPEC/CRS with the specialist’s words indicating that the HIPEC ship had already sailed — I had missed it? Not only was I confused and angry, but for the first time since my diagnosis, I was certain that I had a very short length of time to live. And, the short time ahead promised serious decline in quality of life. I fell into a black hole of depression.
But, both my husband and Gabriella Graham, the founder of PMP Pals, pushed me to move forward. I decided to go big – I contacted Dr. Paul Sugarbaker, the leading HIPEC/CRS specialist in the U.S. He accepted me as a patient and performed my CRS and HIPEC in early 2009.
I credit Dr. Sugarbaker with saving my life by meticulously removing all visible tumor (and many organs or parts of organs to which tumors were tightly attached), doggedly working through the troublesome adhesions caused by my earlier surgeries, and leaving only the tiniest of tumor cells to be successfully penetrated and killed off by the HIPEC he administered. Since 2009, my status has been “no evidence of disease” – NED. Dr. Sugarbaker is now retired, but still active in scholarly research, including using his vast patient database to look for patterns, draw conclusions, and propose treatment improvements.
My story is NOT a road map for how this disease would be treated today. When I started my journey, information on this disease was very hard for patients to come by. The internet was just starting out, and medical information was not yet readily available, especially on rare diseases. I relied too much on my doctor’s confidence and advice about how best to treat this disease. I had no reason to doubt his advice or treatment; but, I had no information about how other patients were being treated. Don’t repeat my mistake. Learn; talk with other patients; research; talk to other doctors.
I believe that most patients in my condition now would be sent to a specialist for evaluation for HIPEC/CRS very soon after diagnosis. My disease was already quite widely spread throughout my peritoneal area in the first surgery, but with lab results showing low-grade LAMN type of PMP, I should have been considered a perfect candidate for HIPEC. Waiting all these years meant that it was sheer luck that I was still considered operable. Dr. Sugarbaker was able to remove all visible disease, including tumors bound by adhesions and scar tissue; and I was able to retain essential organs and enough of my large and small intestines to return (mostly) to my normal lifestyle after CRS/HIPEC.
In this community, we learn from each other. Here are some lessons I’d like to share from my 25-year journey.
- Find an appendix cancer specialist, very early on. This is essential. We say it all the time in PMP Pals. We mean someone with significant experience with cytoreduction surgery, with HIPEC, with post-surgery surveillance, with reading scans of patients with this disease. My local surgeons did not have the experience to guide me as well as my situation required. It’s that simple. I want a specialist who talks about appendix cancer, reads about it, does surgery for it, prescribes chemo for it, thinks about it, sees patients with it – every week. These are the specialists with the best information on what can be done for you.
- Community is important. PMP Pals is your community. We like to say, “You are not alone.” In 2008, when I was mired in depression for perhaps having missed my opportunity for life-saving treatment, Gabriella Graham, the founder of PMP Pals, told me to find someone else to treat me. She gave me the encouragement, know-how, and confidence to reach out to Dr. Sugarbaker. After surgery, I attended my first PMP Pals gathering in 2010. After 13 years of living with this disease, I finally met other patients. Before I found PMP Pals, the truth is that I was And, my journey was negatively affected by that.
- Second opinions are vital. As you can see from my story, if I had stopped with the first specialist I sought out, I probably would not be here today. There are so many Pals who say the same thing when they find us. They were told they are inoperable, they were told they are too old, they were told their quality of life would suffer too much – so many reasons not to perform the treatment that could be curative. It is mysterious to me to this day how one specialist could say “No way” to surgery/HIPEC for me, and yet Dr. Sugarbaker said, “Yes, I can help you.” The bottom line is that you need to get your records into the hands of several specialists. Even if they end up agreeing — you will still have so much more information and understanding of your situation, and you likely will have learned of palliative care options that can make your life better. This is not about finding someone who will tell you what you want to hear. It is about feeling confident that you have taken all reasonable steps to find the best options for yourself.
- New treatments will become easier to access. Though we’ve all heard of HIPEC by now and know that it is the standard of care for the right patients, this was not always the case. In the late 1980s and into the 1990s, Dr. Sugarbaker had to fight to advance HIPEC/CRS for patients like me. The accepted “wisdom” in those decades was that patients with peritoneal surface malignancies were not good candidates for surgery, there was no clinical trial data showing efficacy of HIPEC, the patients would not likely tolerate the grueling treatments, and they would likely die soon anyway – so, why bother? Sugarbaker and other pioneers slowly earned acceptance of HIPEC/CRS in the medical community. New treatments will emerge and will become more widely available. Stay hopeful.
- Don’t look back; look forward. Some days I fight to live normally, to be active, to travel, to watch a movie without jumping up 5-10 times for a bathroom break – because I am living without a third of my small and large intestines. And, on truly bad days, I am angry, resentful, and very low because I think if I had done things differently, if my first doctors had done things differently, I would not have lost so much in my last surgery. BUT, I cannot change my history – I am not going backward, so why look to the past? I force myself to stay in the present, to focus on processes (diet, medication, healthy habits) that can help me, even if only a tiny bit. And, I look forward – to things I want to experience, to making my life better, to helping someone else live better. Enjoy each day. We are lucky to be here.