The Colon Club

Hi everyone,

You may remember my posting from a few weeks back, asking stage 4 colon cancers how they survived. I apologize for the distraught nature of that post; I was in full-panic mode and definitely not thinking clearly.

As it turns out, I do not have colon cancer (my colonoscopy was negative), BUT had an endoscopy last week, which showed Gastric Signet Ring Cell Adenocarcinoma; based on CT scans they determined Stage 4 with multiple mets to the liver. Waiting to have a PET scan to detect any possible bone spread. Everything I read, and the local doctors I have talked to, give a dismal prognosis for this aggressive gastric cancer.

Now, I know this a Colon Cancer and not Stomach Cancer forum, but I have read that some people on here have Signet Cell cancer and have success in treating it. So to the Signet Cell people here, how did you have success in treating your cancer? I read something on one of the postings about simultaneous RFA/HIPEC followed by a liver resection; did I understand that right? Who are good candidates for this? Were there any Chemo regimens that worked particularly well? Any other innovative treatments or clinical trials out there that anyone knows about?

I sincerely, sincerely from the bottom of my heart appreciate any information anyone can give me. I am 29 years old, married to the love of my life, and I don't want to leave him yet.

Hi Anna, just wanted to give you some encouragement! My 25 year old daughter was diagnosed February 2010 with stage 3C signet cell colon cancer. The initial prognosis was awful, but today, 13 months later, she is cancer free and her recent tumor marker (CEA test) was 1.2, which is excellent. She did the FOLFOX chemo regime. She lives in Dallas and I feel her medical team is very up-to-date with the latest technology. One thing her oncologist did was use a blood test that measured how effective the chemo was and they ended up increasing her dosage and throwing as much chemo at her as her body could stand. That test was for colon cancer, but I wonder if there is something similar for gastric cancer. It was rough for her going through the chemo and each treatment had to be delayed a week due to low blood counts, but she survived and feels fabulous today and is working out and healthy. There is hope for you! There are other signet cell survivors on this board too, so hopefully you will hear from them too!

Thank you janklo so much for replying. That is wonderful news about your daughter! It is very inspiring and I am so happy for her, and for you.

Right now, I am very concerned about the liver mets they found, as that seems to be the biggest impediment to any treatment. I'm wondering if anyone knows anything about Hipec with concurrent RFA or liver resections...are these even done?? Does anyone know anything about this or other treatment options? Thank you so much.

Can't help you with most of your questions, but here is everything you would want to know about RFA from the perspective of a colon cancer patient who had 7 separate RFA's for liver mets: http://sheddinglightonthecancerjourney.wordpress.com/2010/08/21/rfa-for-liver-metastases-a-veteran-patients-perspective/
Blessings on your journey,
Rachel

I am so sorry to hear about your diagnosis. My sister was diagnosed with Stage III signet cell colorectal cancer in April 2010. Just prior to her diagnosis, my father was diagnosed with signet cell gastric cancer in Feb 2010. Unfortunately, my father was opposed to any treatment and did not undergo chemotherapy. My sister however was diagnosed at age 29. She underwent 5 weeks of chemotherapy and radiation. In October of 2010, she went to the operating room to have her rectal tumor removed. The surgeon was unable to remove her rectal tumor because he found mets to the peritoneal cavity and omentum. She has undergone 6 months of Folfox and Avastin. Her CEA level today was 4.00. She will have 1 more round of chemotherapy and then a repeat CT scan. If her scan is normal for distant metastases, she will potentially undergo HIPEC in May. I'm a nurse and I've read and researched signet cell cancer extensively. There are so many success stories out there. My sister has had her ups and downs, but she (somehow) remains optimistic. Please feel free to e-mail me!! You are not alone!! I wish you the best of luck!!

Nurtrk18,
Thank you so very much for the information. I am glad to hear your sister is doing so well! I can't figure out how to email you privately; my brain's not really working at full capacity right now. But I was wondering if in your discussions with other people re: Hipec, you ever came across anyone with liver mets (particularly anyone with signet ring cell cancer w/ liver mets) who was able to have RFA/liver resection simultaneously with the Hipec? This is such a weird/scary time; I'm just so focused on trying to find anything that could possibly give any hope at all.

Surfingon,
Thank you for the information re: RFA. Your story is very inspirational. I really appreciate it.

Hi Anna,
I don't know if this helps, but when my sister was originally diagnosed with Stage IV, I contacted several doctors regarding the HIPEC procedure. Each and every office that I contacted was wonderful. Also, some amazing individuals on this website introduced me to hipectreatment.org. You can find a physician in your area and contact them to discuss your situation and what procedure(s) can be done. It's a good start. They will be able to tell you if you're a candidate for the procedures that you were mentioning. You can always e-mail me personally at nurtrk18@yahoo.com. Even if you need to talk, I am always willing to share my sister's experiences.