I am reposting something I wrote in 2007. I will be a 20 year cancer-free survivor, my anniversary is in about a week, but I still remember living with the uncertainty I felt after treatment was completed. Living with uncertainty I think was the greatest challenge in what I now think of as my “cancer career”. I will tell you the sense of uncertainty fades with time. Maybe this will help some of you?
Living in Limbo
I loved a book I discovered when I was a 3-4 year survivor. It was written by Glenna Halvorson-Boyd (a 10 year oral cancer survivor) and Lisa K. Hunter (a 3 year melanoma survivor). They said they wrote the book they’d needed to read but that had not been written, “Dancing in Limbo: Making Sense of Life After Cancer”. After interviewing many cancer survivors, they discovered that they all shared many of the same feelings.
Cancer survivorship is a new frontier. In my own lifetime as a nurse, I was sometimes part of a conspiracy long ago to help families keep a cancer diagnosis secret from the patient. Sometimes families decided to spare the patient the knowledge of their disease; after all, what could they do if they knew do except anticipate their own inevitable and painful demise? Cancer was always equated with death. BTW, research later discovered that these patients knew their diagnosis, but also knew they weren’t supposed to know, so were denied support. Back then the word cancer often wasn’t even spoken aloud….it was often referred to as “the big C”. It was the most terrifying diagnosis one could receive…..”please don’t let it be cancer!”.
So there isn’t a wealth of knowledge about cancer survivorship. I’m going to quote from the first chapter of the book “Dancing in Limbo: Making Sense of Life after Cancer”. I was ever so grateful someone had identified and put into words exactly how I felt. (pp. 1):
“There is a cruel myth about surviving cancer. In this myth, when medical treatment is successful, the story ends. Having survived cancer, we pick up our lives where they were interrupted and carry on- with increased gratitude for the simple acts of daily life and clarity of purpose that only a brush with death affords. In this myth, cancer is a blessing in disguise.Though this myth has some truth to it, it is cruel because it is impossible to live. The real story does not end “happily ever after”. Instead we live in limbo: after cancer, we know we are on uncertain ground.”
They also point out that we are different from those who have survived other life-threatening traumas in that “as cancer survivors we hope we are cured and proceed as if we are cured, but we cannot be sure”. Cancer outcomes aren’t known for years, so the limbo is a lasting one. Another appendiceal cancer survivor trying to reclaim her life recently spoke of the possibility of recurrence, which is common with appendix cancer, as a ”grey cloud” that is always present.
Someone suggested to me the problem is that we just don’t have enough faith. I disagree. I’ve read essays by clergy survivors who experience the same struggles. Read the Psalms….faithful people struggle.
I’ve been in the cancer survivor community for awhile now, and over and over I see the disorientation of those who finish treatment and try to resume their former “normal” life. They are afraid to say they are struggling, after all, they’ve survived cancer, shouldn’t they feel grateful? They will admit their struggle to other cancer survivors, but not family and friends as they are afraid of being seen as ungrateful. I sometimes want to welcome them to Limbo…….not a bad place really, but a place of transition. A new journey of sorts. The road to creating a new after-cancer normal.
I have been frustrated lately. We have had several new people join the Facebook support group who have been diagnosed with appendix cancer and who have said they have been treated or will be treated with a hemicolectomy. A hemicolectomy is not the treatment for appendix cancer, it is treatment for colon cancer. Appendix cancer is NOT colon cancer. When I was diagnosed, I was to have a hysterectomy for fibroids. It was to be a laparoscopic surgery. When they got the laparoscope in, though, they saw I had a ruptured appendix, so they just removed my appendix. They saw it had a tumor, so biopsied it and discovered I had appendix cancer.
I was a nurse and knew the surgeons at the hospital. The chief of surgery, who was a wonderful person and an exceptionally good surgeon, told me the next morning that my cancer was very rare, and that I needed a hemicolectomy right away and that they would do it the next morning. They felt I needed a hemicolectomy, because they felt that since my appendix was part of my colon, that I had a type of colon cancer, and treatment for a cancerous tumor on the colon was a hemicolectomy. I needed that cancerous part of my colon removed.
I told him that no, my cancer was exceedingly rare, and that I did not want to commit to any surgery or treatment until I had time to learn about my cancer and what treatments were available and indicated for my type of cancer.
I went home and spent much time reading all of the medical journals and every article ever published about appendix cancer. I learned that no, a hemicolectomy was not the surgery I needed for appendix cancer, that was the treatment for colon cancer.
I needed a surgery called a cytoreduction surgery, a much bigger surgery, called by some a MOAS, Mother of All Surgeries, in which the entire abdomen was searched for any small cancerous tumors and organs affected by those tumors. Those tumors and organs were removed, followed by chemotherapy placed directly into the abdomen. So, I sought THAT treatment. I am a 19-year survivor because I was treated for appendix cancer and not colon cancer.
The sad thing is, those who have the hemicolectomy and have their appendix cancer recur and THEN go to a specialist have a lesser chance of successful treatment. Successful appendix cancer treatment also depends on a “prior surgical score”. When you have had major surgery before you have the cytoreduction surgery for appendix cancer, you develop scar tissue and adhesions in your abdomen which makes the cytoreduction surgery more difficult and interferes with the circulation of the HIPEC chemotherapy in your abdomen after the surgery. I’ve known several people who have had major surgeries more than once for appendix cancer recurrences before they FINALLY went to a specialist. their outcomes were not good.
Many diagnosed with appendix cancer want to stay with the doctors and surgeons and oncologist that they know and love at the facilities near their homes. They know and trust these doctors and believe they have their best interests at heart. And all of that is true! The surgeons and doctors at my home hospital were wonderful and knew me personally and wanted the best for me and wanted to see me cured. But they had never seen a case of appendix cancer. They were very familiar with colon cancer, and since the appendix was part of the colon, it just made sense that it was another type of colon cancer. They had never been taught about appendix cancer in medical school…. why would they devote time teaching about a disease that will affect .000004% of the population?
So many people diagnosed with appendix cancer are not seeking out appendix cancer specialist who specialize in cytoreduction surgery and HIPEC. I want to do all I can to change that. It is the most IMPORTANT THING those newly diagnosed can do.
I’ve been meaning to do this, but needed to learn how to use Google Drive! I’m a college professor and have avoided it up until now, though I know it’s supposed to be a great thing, and maybe even supposed to help me keep from paying for Office?
I wanted to share the webinars another advocate, Jennifer Ranker shared with me. Jennifer Ranker is also a cancer survivor (I believe colon cancer) treated by Dr. Sardi. Those with colon cancer who have had the cancer spread into their abdomen can also be treated with cytoreduction surgery and HIPEC, the same treatment as for appendix cancer. This treatment is also now being used for other cancers that spread into the abdomen, like ovarian cancer. She also has a private Facebook support group, Peri-Met-Tropolis. She has done Zoom webinars with Dr. Sardi as I was hoping to do, so Dr. Sardi put me in touch with her since I am now doing Zoom support groups.
I am attaching two of the webinars she has already done that she told me I could share with my constituents. They are very good. Since I want to do this also, she is talking about she and I working together to do another with both of us getting questions from patients. We have both already started doing this.
Please send me any questions you have, and enjoy the webinars! Would love to hear your feedback! Dr. Gushchin is an excellent specialist also. Dr. Sardi said if he needed cytoreduction surgery, Dr. Gushchin would be his surgeon. Please let me know if you have any problems. I just learned how to retrieve and share from Google Drive :-). These webinars offer excellent information!
Hope these are helpful to you! And thank you to Jennifer!
I need your help! Dr. Sardi, a renowned appendix cancer specialist, will be participating in our Video Meeting. I need questions any of you would like to ask an appendix cancer specialist. He will be doing a webinar for us! Please email your questions ASAP to:
Look forward to seeing your questions!
Wanted to post this. I have a new patient who attended our Zoom meeting and read my website. She compiled this list of things she learned. I liked her list a lot!
These are some key messages running through the materials on your website, and they surfaced quite naturally in the Zoom meeting. For example…
- the importance of self-advocacy – practitioners can’t be experts in all rare diseases and probably won’t have time to research yours, and it’s your life in the balance
- appendix cancer is not just another form of colon cancer – it requires different treatment
- the need to get advice from a recognised expert in appendix cancer as soon possible – before starting a treatment plan
- that extent of tumours does not mean that your cancer is untreatable
- cytoreduction and HIPEC is the treatment of choice, but you need someone who is an expert in cytoreduction to get the best possible outcome
- some specialists are much better than others, it’s ok (and maybe even vital) to shop around,and you may need to travel to access the care you need.
- if specialist expertise isn’t accessible to you, perhaps due to Covid travel restrictions, you may need to engage, educate, and connect your physicians to expert advice.
Our virtual support group met online today and it was GREAT! There were 6 of us there and we were international! One from New Zealand and one from Hungary, the rest from the USA. It was so good to be able to see and talk to everyone, even though it would have been nicer if we could have all met for lunch. Never know, maybe someday!
We have decided to meet once a month. It will continue to be Saturdays at 12 noon Central Time as that time worked even for the international attendees.
We are meeting on Zoom and I will send out invitations a week before the next meeting. To request an invitation, click “Video Meetings” on the home page (www.appendix-cancer.org) and sign up to receive invitations to the support group. Would love to see you there!