Fear of Recurrence

As we approach the New Year, I am trying to remember how I felt my first New Year’s Day after my cancer diagnosis.  I only remember I lived in fear of recurrence.   For a long time after my diagnosis and treatment, I was technically cancer free, but I was unable to even say the words “next year”.  I never planned my future beyond the next CT scan, which would either give evidence that I was still cancer free or that my cancer had recurred.  If it recurred, I didn’t know what my chances of survival might be.  I was terribly afraid of getting my CT scans done, and they were done every 3-6 months for a long time.  I was even afraid when they went to annually.

It made me feel better when I learned that all of us have anxiety before CT scans, we’ve even named it “scanxiety”!!!   I felt badly about my anxiety, until I met people who have their scans and then stay in bed for days until the appointment when they get the results.  Or who need to take Ativan while waiting for results.  I could so sympathize!   I’m a nurse, and I wasn’t about to wait a week or two until I had a doctor’s appointment to learn of  my results, so I always went to the medical records department of my hospital and signed a release for my scan results the day after I had the scans done.  I may have even gotten the results before my physician!   Anyone can do that, your medical reports and records belong to YOU!  Not to your doctor.  You can go to your hospitals medical records department and ask for what you want at any time, you just have to sign a release.  I usually read my results in my car in the parking lot. Yes, I was anxious, but it was anxiety for a much shorter period of time.  Luckily all my scan results were normal.  I was and still am cancer free.

I did after 9 or 10 years stop getting the CT scans altogether.  I know it was recommended I get CT scans yearly for life as some have had recurrences more than a decade later.  But I understood recurrence was most likely within the first 3 years, and I didn’t know if the radiation from the scans represented a risk, but I also knew I was tired of living with “scanxiety”.   I probably still feared recurrence at nine years.

I don’t fear recurrence of appendix cancer now, though I know as I get older, it’s not impossible that I might get another primary cancer, say breast cancer.  I did for many years get all my cancer tests done in a single week, PAP smears, mammograms and CT scans.  Just wanted to get cancer testing out of the way.   As a nurse I know the biggest risk for cancer is aging, and all of us, if we are lucky enough to live that long, will age.  It made me kind of depressed for awhile…remember when if you survived cancer for 5 years you were considered “cured”?  Now the word cured is never used.  At 16 years cancer free I am just in remission, not “cured”.  I’ll never be considered “cured”.  I remember really wanting to hear that word after I was diagnosed.

But I do now greet every new year as another gift, a time to even start new again, though I admit most of my life if I’ve made New Years resolutions, I’ve made them in May, seemed spring was a better time for new beginnings?

I wish all of you a great New Year, and I’m here if you ever need a sounding board!  You can email me at carolyn@apendix-cancer.org.


New Seasons in Our Lives: Cancer Treatment

Merry Christmas!  Today is Christmas Day, soon to be followed by New Years Day.  It is a new season.  Cancer is also a new season in our lives.  It’s a new beginning of sorts, not one we would have chosen, but a new beginning never-the-less.  Many of us make New Year’s Resolutions, and with our cancer, we also need to make resolutions.  Where we will look for answers, where we will find treatment options, what treatment options we will choose.

When I was first diagnosed during a routine appendectomy (which was actually supposed to be a female surgery initially),   I woke up and my doctors told me my cancer was very rare, they needed to go home to learn about it.  The next day, my very good surgeon (I know the good ones, I’m a nurse) told me I needed a right hemicolectomy.  He was going to remove a portion of my large colon and lymph nodes, I would then need chemotherapy.  I knew this was the way colon cancer was treated, but I also knew I didn’t have colon cancer, I had appendix cancer.  I told him instead I wanted to be discharged (only takes a day to recover from an appendectomy) and I wanted to research my rare disease before I decided on any treatment.

A large university hospital known for it’s cancer care told me I was untreatable, and they knew I didn’t have colon cancer.  They felt my appendix cancer was untreatable; they said as I had ruptured my appendix I had seeded my abdomen with cancer cells that would soon become many more cancerous tumors in my abdomen that would kill me, that there were no treatment options to prevent this.

I didn’t accept that and started reading every medical journal article I could on appendix cancer.  What I found was that I did need the hemicolectomy that my surgeon recommended, but in addition, I needed cytoreduction surgery, they would have to look throughout my abdomen for any other small tumors created by my appendix cancer and remove them.  This would need to be followed by chemotherapy directly into my abdomen to prevent any microscopic cancer cells released into my abdomen from causing a recurrence of my cancer.

I found a specialist who offered me this treatment option.

It took me many weeks after my diagnosis to be treated with the cytoreducation surgery and intra-abdomenal chemotherapy, but getting the right treatment the first time saved me.  I am now a 16 year cancer-free survivor.

I know of many who wanted to be treated right away, they want the cancer out immediately!!  Many are treated as colon and not appendix cancer, they do not seek out appendix cancer specialists for treatment.  As you can see by the map on my web site, there are not many appendix cancer specialists, almost all of us have to travel, we have to wait for treatment.

It makes me sad when I meet appendix cancer patients who have the wrong surgeries for their appendix cancer before finally being seen by an appendix cancer specialist after their first surgery has failed.  In this research article, Extensive surgical history prior to cytoreductive surgery and hyperthermic intraperitoneal chemotherapy is associated with poor survival outcomes in patients with peritoneal mucinous carcinomatosis of appendiceal origin.

, it was found that patient’s who have extensive surgery prior to seeing a specialist for specialized appendix cancer treatment have poorer outcomes. The scar tissue and adhesions caused by the prior surgery (surgeries) makes the cytoreducation surgery and heated intraperitoneal chemotherapy less likely to work well.

Seeing an appendix cancer HIPEC specialist is the MOST important thing you can do when you are diagnosed, even if it means leaving your trusted physician and surgeon.    Even if your treatment it delayed.  Even if your family has to travel to visit you. I am a case in point. I wasn’t treated with ANYTHING for almost 2 months after my diagnosis. I traveled across the country to see a specialist.  I spent weeks away from my home and children while receiving treatment.

But in the end I got to watch my children grow up.  I got to celebrate my 30 year wedding anniversary.  It was worth it.

Cancer is a new season in our life, but hopefully one that will lead to many more new seasons if we make the right resolutions.


Our Appendix Cancer Community

Merry Christmas and Happy Holidays to everyone!   I would like as many of us as possible to come together as an appendix cancer community.  It’s hard to find someone else who knows what we go through as our cancer is so rare. While I feel for anyone who has been diagnosed with cancer, I do admit to sometimes feeling resentful at the amount of support and research money breast cancer receives.  There are more breast cancer support groups and fundraisers than anyone can count.  I I had  a sister-in-law who was diagnosed with breast cancer, and she lived many years with Stage IV breast cancer, there was always one more new chemotherapy or treatment that had been discovered through research that prolonged her life. The disease did take her almost a year ago though. I had a bit of survivor guilt, as when I was diagnosed, I wished so much that I’d had breast cancer instead.  The outcomes statistically were so much better than for my signet ring appendix cancer, and I knew much more research and support were devoted to that cancer.   But in the end I survived my cancer, and she didn’t.

I hope those of you reading those will consider joining the forums I now have on this site and commenting on the blog, it can serve as a support group where we can communicate with and reach out to each other.  We won’t find appendix cancer support groups in our community as our cancer is so rare.  There is security required to signing up on the forums, which is kind of a hassle, but I think that’s a good thing.  I had a forum with a previous web site that ended up being spammed so much it was hard to use, I don’t think this one will be.  And I promise to participate in the forums and to moderate them, you won’t be alone!

I’m making it a New Year’s resolution to be more involved in this website with it’s blog and forums, I started a new job about 2 years ago that kind of over-whelmed me, but I am working on balance now.  I want us to be here for each other.

Again, Happy Holidays!  I will be here!


Our Orphan Disease

For those of you who don’t know what an orphan disease is, it is a disease that effects so few people that it is essentially “orphaned” in medical research. My daughter, who was 10 years old at the time of my diagnosis understood my cancer was very rare. She came up to me one day as I was searching for treatment and said “Mom, no one is going to try real hard to cure appendix cancer, are they? It would cost too much money and help too few people”. She understood exactly what was meant by an orphan disease, it is a disease that is not cost-effective to attempt to cure. Remember the movie “Lorenzo’s Oil”?    My daughter later said when she was older and I started this non-profit that I had “adopted” the orphan disease.

Appendiceal cancer most often kills by spread into the abdomen (peritoneal surface malignancy) and interference with digestion and the functioning of organs in the abdomen. Because of this, it can be grouped in research with diseases that can kill in the same way but are more common…ovarian, colon, gastric etc. that can also cause “peritoneal surface malignancies”.

Most of the specialist listed on my website treat these other cancers along with appendiceal cancer. Many of the current clinical trials using this therapy include appendiceal cancer with other cancers that have metastasized into the abdomen, such as colon and ovarian cancer.

Since appendiceal is an orphan disease, we benefit from this inclusion in research studies.

Heated intraperitoneal chemotherapy is a benefit for these cancers, as there exists a “plasma-peritoneal barrier”. Much like the “blood brain barrier” that protects harmful things in the blood from reaching the brain, the plasma-peritoneal barrier can prevent what is harmful in the blood from traveling to the abdomen. For this reason, IV chemotherapy is not as effective for these cancers, but chemotherapy placed directly in the abdomen is effective.  The chemotherapy in the abdomen can also be concentrated more, as just like chemo from the blood does not enter the abdomen as well, chemo in the abdomen does not enter the blood stream and circulation as well, hence few side effects from the peritoneal (abdominal) chemo.  A good thing!

For those of you interested in the available research, much is listed on a page on this web site, Published Research on Appendix Cancer .