My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Saturday, November 8, 2008

Your Input Needed: The Abdominal Cancer Connection

Sometimes I feel the stars were kind of aligned...in my being diagnosed with cancer and my advocacy efforts since.

I'm in a kind of unique position. I started nursing school in the late 1970s. CT scanners were new and not every hospital had them. The word cancer often still not spoken aloud; it was still the "C word"....the "big C".

When a patient came in with symptoms of problems in their abdomen, CT scans weren't available then. If an x-ray showed a possibly abnormality, the patient was taken to surgery for an "exploratory". They had to surgically open the abdomen with a big abdominal incision to see what was inside, to "explore" the abdomen and make a diagnosis. When an abdomen was opened and metastatic cancer discovered, no attempt was made to remove the cancer or to even determine its source. Metastatic cancers into the abdomen (peritoneal surface malignancies) were considered untreatable and fatal. The family (and maybe the victim) was told that the patient was terminal and had 3-6 months to live. End of story. It was irrelevant whether the cancer originated in the ovaries or colon or appendix. The prognosis was the same, terminal.

In the end I was one of those abdominal cancer patients. Interesting that even two decades later when my cancer was discovered I was told I was untreatable, not much had changed. Now it was to my benefit that I was a stubborn person, a rebel, and that I had the ability because of my education and experience to locate and read the published medical literature. That combination, that alignment of the stars, helped me to in the end survive my terminal diagnosis by 7 years now. I couldn't take "terminal" for an answer, I wanted at least a chance, I wanted to try something, to at least give it a shot. My kids were 10 and 11 years old. I needed to stay alive.

I truly hope the Abdominal Cancer Connection will help connect those diagnosed with these cancers to the resources needed to help them deal with all of the issues involved in obtaining treatment and surviving abdominal cancers. I want everyone to have a chance. I want the Abdominal Cancer Connection to serve those diagnosed with these cancers, to be a place where they can find answers and support, to be a beacon of hope.

I need the help and input of those of you reading this blog and my web site. I want to prioritize and identify needs my organization can address for patients struggling with this diagnosis. I hope to soon put together an online survey, but in the meantime, please tell me what your greatest needs have been since diagnosis. You can email me at carolyn@appendix-cancer.com or add a comment to this blog. Thanks so much in advance for your help!


A list of needs I have compiled based on the 500 appendiceal cancer patients I have communicated with to date include:

•Education for the lay public about these diseases and available treatment options. Possibly the creation of published pamphlets that could be available in oncology or medical offices, libraries etc. Public media venues promoting education and awareness.

•Education about peritoneal surface malignancies (appendiceal cancer and other advanced cancers of the abdomen) and about newer available treatments directed towards the medical community, especially education directed towards oncologists, general surgeons and nursing professionals.

•An international referral list of surgeons and facilities offering cytoreduction surgery and hyperthermic peritoneal chemotherapy along with a listing of nearby housing facilities for patients and families along with lists of insurance companies that have agreements with these hospitals and physicians

•A database of information to assist those who must travel for treatment (Angel Network etc.)

•Emotional support networks or resources for those diagnosed through all stages of illness and treatment

•Support communities and information/referrals to help those with young children cope with the consequences of this diagnosis and treatment.

•Support and information for those who live with colostomies/ileostomies as a result of treatment

•Support and information for those who go home on total parenteral nutrition (TPN) or who will go home with PEG and gastro tubes. Also nutritional support information for these patients.

•Support and information for caregivers.

•Work to increase the number of insurance companies who view this treatment as “Standard of Care” and provide coverage

•Possible future fundraising activities with funds directed towards disease research and patient support

8 comments:

Karen Ebert said...

Carolyn -
Thank you for this website, and the work you are still preparing. I have tried to email before, but I think it didn't work. I am now at one year from diagnosis of stage 4 Signet Ring adenocarcinoma of the appendix. Same diagnosis as you, different staging. Major surgery and six months of chemo (FOLFOX) followed. At that stage, I was most interested in ANYTHING on appendix cancer, and you were pretty much it. Even now, I'm confused about why my doctor did not do the intraperitoneal chemo, and what makes that a recommended course for some and not others.

After a CT scan last week, I'm still clean. Since the word I was given at diagnosis was "not curable" and "we aren't going to beat this," I'm now most interested in resources for living in limbo, when your body is doing OK but your head and heart don't know how to proceed. I look forward to what you are putting together. A quick google of "breast cancer" gives you more than you could ever want or need to know. It would be nice to find such riches when googling "appendix cancer." Thanks for your work,
Karen Ebert

Carolyn Langlie-Lesnik RN BSN said...

Hi Karen,

I believe you wrote me in Dec. of 2007? Thank you so much for your kind words, and I am so glad your recent CT scan results were good.

Actually, the overwhelming majority of us struggle with emotional issues and the difficulty of living in "limbo". It's a tough and long-lasting limbo. Most of us are stage 4 at diagnosis (I was stage 4 also, but I scored a low number on the PCI) and have a long and difficult treatment battle followed by a longer and more difficult emotional battle.

Most of us are not offered much hope when we are diagnosed. I loved what you said..."when your body is doing OK but your head and heart don't know how to proceed". That is truly the toughest part.

Jenny said...

Carolyn,

I don't know if you remember me, but a few months ago, you and shared some emails regarding my mother, who was diagnosed with appendix cancer.
Sadly, my mother passed away on October 31, after a six month struggle for survival. During her last days, the hospice care that she received was a saving grace. Not only did they care for her in a way that was so caring, but they also were there for the family.
I know that before hospice got involved we were so uninformed about what they do, had we known, we would have done it sooner.

Take care,

Jen

Anonymous said...

Carolyn,
I really enjoyed reading your article. On October 3, 2008 I had a sharp pain for 24 hours and ended up in ER. They did a CT and saw I had fluid in my abdomen. My surgeon did an emergency appendectomy and discovered I had a tumor on my appendix. The tests showed the tumor was non-cancerous! HOORAY! However, 8 days later, I learned the appendix itself had cancer inside. Not only had the tumor seeped into my stomach, but the appendix had also. They don't know how long it had seeped but the fluid came back non-cancerous.
I was told that it is very rare and that a Dr. Sugarbaker, out of Washington DC, is the one that most doctors refer to. My surgeon spoke to him and he recommended the following: First a colonoscopy. I had that done just 10 days ago and got the results today. 2 polyps and they were both NON CANCEROUS!! He would like me to have a right colorectomy (since there are lymph nodes at the point that connects to the appendix) a total hysterectomy and then the peeling of the lining of the stomach with the heated chemo treatment to be done after I heal from the hysterectomy and the colorectomy.
My results today were GREAT. Getting to this point from 10/03/08 has been emotionally draining. My head was swimming with "what ifs" and my heart was crying out for all of those who showed concern. It's a tough road for sure. I'm very proud of your progress!!
Thank you again for the opportunity to read about this rare cancer.
Many Blessings for both you and your family!
Cindy Murphy-Indiana

Carolyn Langlie-Lesnik RN BSN said...

Hi Cindy,

So nice to meet you here, and I so understand what you are going through, I know how tough it is. I'm so glad you are seeking the care of a specialist and that your colonoscopy results were good. Just curious, where in Indiana do you live? I also live in Indiana...you can email me if you like at carolyn@appendix-cancer.com. I know of two other appendix cancer patients in Indiana and a few also near Chicago.

Take care, and I wish you the very best with your surgery and treatment...I wish you many healthy and happy years!

Carolyn

Lisa said...

My name is Lisa. morninglori43@yahoo.com
MRI showed an retroperitoneal mass near my aorta (lumbar MRI caught the bottom of it) and something also showed up on the mammogram. I'm afraid to have my pap smear next month..lol. I am single mom with 2 girls at home, their dad is AWOL and no longer even calls them. I'm terribly frightened. I know this isn't necessarily a death sentence, maybe it's not too late. But I have a bad feeling about this. Not afraid to die, just afraid for my girls. Is there anything you can say that might help? I'm having to go through the state health system as I have no insurance and I could be dead by the time they go through all the red tape and get it all figured out. I'm having a CT scan Jan 9th. Thanks, Lisa

Graham Davies said...

Carolyn, We've been in contact on several occasions before. As you know, I was diagnosed with one of the rarest varieties of PMP, a urachal mucinous adenocarcinoma. I underwent surgery in March 2006, and I was given months to live. I was not offered HIPEC. I had never heard of it, and it was never mentioned as an option. The surgeons, to their credit, did a good job, and I have been cancer-free ever since. Soon after my op I was referred by my oncologist to one of the two PMP specialist centres in the UK, and they have kept a watchful eye on me. Insurance is not an issue here in the UK as we have a free National Health Service, but spreading the message about PMP is vital, and you are doing a great job. I do my bit via my own website at http://www.camsoftpartners.co.uk/pmpsurvivor.htm

Season's Greetings!

Graham

Carolyn Langlie-Lesnik RN BSN said...

Hi Graham,

As always, so very good to hear from you. You and I are both beating out our given odds initially, and I think are both helping others who are following our jouneys. I have much respect for you and check out your site often.

Please enjoy a wonderful holiday season!

Love,
Carolyn