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.

Monday, March 15, 2010

Can you help? Survivor Stories Needed!

Dear Readers,

I have been in the appendix cancer community now for almost 9 years, I was diagnosed March 29, 2001. I have communicated with about 800 people newly diagnosed with appendix cancer and with their families since my own diagnosis.

Many learn of those who have lost their battle or read some of the more dismal statistics. Ours is a very difficult cancer. I've communicated with a few appendix cancer patients who have also had breast cancer, they've said breast cancer was a breeze in comparison. I kind of think if I am ever diagnosed with breast cancer, it will be kind of like a cold in comparison to pneumonia. Short-term chemo, minor surgery, great survival stats, lots of support and research, and lots of public awareness...though I would lose my hair with that chemo. Much different from our massive surgeries, prolonged surgical recovery, prolonged chemo and absence of support. Ours is a difficult and lonely cancer. Hope is hard to find sometimes.

I have had patients ask me if there are other long-term appendix cancer survivors out there. I know there are...not as many as have survived breast cancer, but I know we do have some. I have been contacted by a few, but only a few long-term survivors. I think most who find me and contact me are the newly diagnosed, though I think it's interesting that some long term survivors have found my site. They are still googling appendix cancer even years down the road. It never really leaves us, we never fully move on and forget the battle that forever changed our lives.

My good friend who recently passed asked me if I could find a way to add survivor stories to my blog and website. I would love to do that. We all need hope.

I am asking for anyone who is a long-term appendix cancer survivor (3 years or more) to share their stories. I could post them as guest posts on my blog, or if you are willing, I would create permanent links to survivor stories on my both web site and blog. The stories would need to include your pathology (mucinous adenoma, mucinous adenocarcinoma, adenocarcinoid, signet ring etc.) along with tumor grade (well-differentiated, moderately differentiated, poorly differentiated etc.). If you are a long-term survivor, even with recurrences, that also counts. One woman wrote me who has survived appendix cancer for 20 years with periodic recurrences...she has never been cancer free, but married, had a child and has lived a full life WITH appendix cancer for two decades.

If you are willing to share your success story that so many desperately need to fuel their battle, please consider helping those newly diagnosed.

If you are willing to help, please email me at carolyn@appendix-cancer.com.

And a very heartfelt "thank you" in advance.

Carolyn

9 comments:

Kelly said...

Carolyne:

Newly diagnosed, I'm so grateful that you are asking for hope for those of us that cannot find any. I don't want to die...I'm to young, I've never been to Europe, who will take care of my dog...

I feel so alone. Thanks for keeping up the fight and I'll try to do the same.

Kelly

Alice said...

Kelly,
We survivors are out here. I'm almost 3 years out, and living a "normal" life, with the addition of periodic scans. My drs don't anticipate that the cancer will return for 10-15 years, and maybe never.

Treatment is very difficult. The whole process is extremely scary. We do what we have to do to get through. Then, hopefully, one day you'll realize that cancer is no longer consuming your every thought. It's never gone, but does move to the background.

Take care!

Alice

Kathy said...

Thank you, thank you, Carolyn! I desperately need survivor stories as I see too many that have lost their battle.

I have been meaning to write you and tell you what an inspiration you are to me. I was diagnosed with signet ring cells last September and hope to have CRS/HIPEC in June after 8 chemo treatments. Knowing that you are doing so well keeps my spirits up and gives me that "fighting chance" feeling that keeps me going every day!

Thanks for being a life-line to those of us that are fighting with everything we've got!

Kathy

Carolyn Langlie-Lesnik RN BSN said...

I am working with some of the appendix cancer specialists to try to connect with some of their long term survivors. Again, I am most in contact with those newly diagnosed. The specialists DO have long term survivors, even those diagnosed with high grade tumors and extensive disease. I hope some of their patients will agree to share their stories...we all need that, we need to know there is hope!

lizzy said...

YES! Would love to hear from more survivors. I just found out yesterday that mucin is completely surronding my right ovary. I am still confused as what to do, most of the doctors I don't see know what to do. I did see Dr. Dan Labow at Mt. Sinai who recommends exploratory surgery and then treat after or at that time. A 14 hour surgery?? I don't know if I can do this.

Kelly- I know I am 39 newly married, and just really starting my life as well. You will go to Europe. You will take care of your dog..God willing we will survive this and be able to do all the things we've dreamed of.

Alice said...

Lizzy,

Please be sure to get a second opinion. You may want to go to Memorial Sloan Kettering as well - they've been seeing lots of appendix cancer. I spoke with 3 drs with different options, and then went with the one whose approach made the most sense to me. I know I made the right choice for me. Someone else might have done things differently.

The treatments are very difficult, but when you are done, you can resume your life. Assume that you will give a year or 2 to treatment and recovery, but then hopefully have many good years ahead.

As mentioned above, I'm almost 3 years out. I'm working on my story for Carolyn and this website. It hasn't been easy. But now I'm doing great. I just came in from my Thursday evening curling league (yes, that Olympic sport on the ice) and look forward to being back on my bicycle soon.

Karen Ebert said...

Two years and four months ago today I was diagnosed with Signet Ring Appendix Cancer. Of course, I also am in the midst of cycle 1 of chemo for a recurrence today. But when I finish, I'll be at very close to three years, and I'll write something up to share. In the mean time, if you want to hear from another person in the trenches, I keep a Caring Bridge website that you are welcome to visit. Go to www.caringbridge.com and visit karenebert. Caring Bridge is a great resource for keeping in touch with widely scattered friends and family, by the way. Hang in there all of you. This is hard, but you aren't alone.

Carrie said...

Hi Alice - I saw your post re Sloan Kettering and was wondering if there is anyone in particular you could recommend re Appendix Cancer. I was planning on taking my mom there and am hoping to find the right contact. Unfortunately, she has already had the operation to remove the appendix, but she really needs to get some opinions regarding the best treatment options since she has stage IV cancer.

Also if there are any other recommendations. I have obviously done my reading about Dr. Sugarbaker and Dr. Sadari.

Thank you and thank you all for these blogs. It has been a difficult few days and I am not the one with cancer. Totally breaking my heart to see my mom facing the horrible news.

Judy said...

Dear Carolyn:
I was diagnosed with appendix cancer at age 38, in 1984. A liver/spleen scan showed an enlarged spleen, then a CT scan confirmed this and I had immediate surgery, lasting about 7 hours, I believe. They found that the cystadenoma of the appendix, poorly differentiated, had metastasized to the spleen (also very rare). The appendix had burst to seed the whole peritoneal cavity. After appendectomy and splenectomy with peritoneal lavage, I had 6 months of chemotherapy.
After that,I got a BSN and MSN in Nursing and worked 17 years as a Nurse Practitioner. I had a cancerous bladder tumor removed last June, but I have never had a recurrence of the first cancer.
I have a colonoscopy every 3 years for followup.
27.5 years later, I am doing very well, and I think I am the longest known survivor of both appendix and spleen cancer.
Judy