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!
if anyone has trouble logging into the Zoom meeting today, you can text me at 219-776-9913. Carolyn
This is the link to the article in Cure about appendix cancer, posted the wrong link yesterday I think!
Cure Magazine : Appendix Cancer
For all who asked to be invited to the video meeting, our virtual support group, I sent out invitations. We will meet this Saturday at noon! It will be an international group, one from Hungary and one from New Zealand! I sent the invitation to about 13 who requested it. I’m looking forward to finally meeting some of you! I’ll post later to give you an update on what transpires. I think it will be a very good thing for all of us.
I got a Zoom account for the non-profit as I am a professor who is teaching my classes on Zoom since the Covid crisis, so am very familiar with it. What I like about my virtual classroom is we all keep our mute off and our video cameras on, so we can see each other and have conversations. It’s the next best thing to being in class together! I’ve even used Zoom for family meetings. I am also a CASA (volunteer Court Appointed Special Advocate for abused and neglected children) and I will be participating in court proceedings via Zoom or a similar program. I’m doing my faculty meetings for work via Zoom. I’ve always disliked being videotaped, but I’m getting used to it. I have to remember now when I turn on my computer if I am going to be on camera! The other day I opened my camera in a meeting and stopped….had I brushed my hair??? Brave new world….
Good news, Cure Magazine just did an article on appendix cancer! It is a very good article. I was interviewed and the non-profit was mentioned. There is a picture of me in the article that is up to date. I need to replace my Facebook photo with this one, I’ll instantly age on Facebook :-).
This is a link to the article (just updated the link!):
Hope you are doing well!
If you are interested, Arizona State University asked me to invite you to participate in a study about a cancer diagnosis and its effect on sleep quality. The link below is to a flyer about the study that will give you information on how to participate:
Arizona State University Sleep Study
This study is an 8-week intervention with a 4-week follow-up period. Interested participants complete an eligibility survey to see if they are eligible to participate. If they are, we have them review an online video providing an overview of the study, review an electronic informed consent, and then ask us any questions they might have before signing the consent and being randomly assigned to one of two different groups. Both groups participate in app-based activities for 8 weeks and then complete self-report symptom questionnaires at baseline, week 4, week 8, and week 12 (after a 4-week follow-up).
I attended a presentation of Dr. Michael Holick’s at an annual meeting I attended of the American Association for Cancer Research. Dr. Holick has studied Vitamin D for 30 years. He received the Linus Pauling Award for Health Research in 2009 related to his work (after he was fired from his professorship in dermatology for promoting healthy sun exposure).
His work brought many things to light. Vitamin D is actually not a vitamin but a hormone, a hormone used by every cell in the body. All immune cells have Vitamin D receptors. Vitamin D deficiencies are now being associated with increased cancer risks, with autoimmune diseases like multiple sclerosis, rheumatoid arthritis and lupus and even with depression and psychological disorders.
Many of us living in the United States above Atlanta Georgia are vitamin D deficient, in part because we get so little sun exposure in the winter months. We also have developed a phobia of sun exposure in the warmer months, so use sun block whenever we are outside in the summer, which prevents our bodies from developing our own natural Vitamin D.
It’s interesting that in some cancers are more prominent in the black population, whose skin pigmentation makes it more difficult for them to produce vitamin D when exposed to sun. It’s also interesting that now obesity is seen as a risk for developing cancer, and vitamin D is sequestered in fat cells and not available for use in the body of those who are overweight. Cancer is also a disease associated with aging, and as we get older, our bodies are less able to produce vitamin D from sun exposure. The incidence of many cancers is greater for those who live in the northern United States.
Our bodies naturally produce 20,000 units of vitamin D in just 15 minutes when just our arms and legs are exposed to the sun in the in the warmer months. And there is no toxic effect from naturally produced Vitamin D. It is felt that the current recommendations for vitamin D intake are too low. We can’t obtain enough vitamin D from the foods we eat, so in the absence of sun exposure and without supplementing our vitamin intake, we will likely be deficient. We can obtain enough vitamin D naturally with arms and legs exposed to sun in the summer months for 15 minutes 3 times a week.
As I have a history of cancer and autoimmune disease and live in the northern United States, I personally started taking large doses of vitamin D supplements, and several months after taking supplements asked my doctor to do lab work to see what my vitamin D level was….with supplementation, my vitamin D level was just in the middle of the normal range. I encouraged my sister-in-law, diagnosed with breast cancer, to have her vitamin D level checked, her level was far below normal; her doctor has now put her on a prescription Vitamin D tablets.