The Colon Club

I was diagnosed with SRCC of the Sigmoid Colon on 1/29. I had a resection of 18 inches of colon on 2/8. After 4 weeks of healing, chemotherapy (FOLFOX) was started. 35 out of 58 lymph nodes were involved. (Stage 3C, T4a, N2b) I completed 12 rounds of chemo in August. I will receive the results of my first 3 month CT Scan on Tuesday. While I am generally optimistic, I am currently terrified. There is very little out there about SRCC other than how rare and aggressive it is. I would love to hear from others fighting a similar battle. It doesn't appear that many survive this one for very long. I am new to this board and looking for education and perhaps inspiration.
Thank you in advance.

Hi!

I only have a moment because I have a meeting to attend (I'm at work).

I was diagnosed with stage 3c signet ring cell colon cancer (also sigmoid) in May 2008. I had surgery and six months of Folfox and I've never had a recurrence.

I have to go now, but I will try to post more later.

Best wishes to you.

Dori

Ahhhh....Dori!

Thank you for your reply. Tomorrow morning I will have my first 3 month follow scan appointment. I am guessing that the anxiety and terror I feel is just part of the deal. I know that every moment we live is precious and not one of us knows when our last moment will be. At the same time, I am having a hard time with the scan...wait 3 or 4 days....and then hear what the doctor has to say. I have an 11 year old and a 13 year old. I had them late---at 36 and 39. I have so enjoyed being their mother and hope to continue for many more years. I hope I can follow in your brave footsteps. Or if it doesn't go the way I hope, I hope I can show my children how to ease out of this life with strength, dignity, and grace.

I have been strong. I worked hard after my resection to regain my function. I did all the chemotherapy I was supposed to. I do exercise. The only thing I do that might be frowned upon is have a couple glasses of wine every now and again, LOL. I have a killer sense of humor which has been a blessing throughout all of this. Looking forward to hearing more replies. I am just so scared.

Becky

Hi Becky,

I was diagnosed with SRCC too, I was told by the colon cancer oncologist at MSKCC that though SRC is very aggressive it responds well to the standard treatment. I just finished my Chemo less than a week ago, so I don't have a follow up scan result to share, my midway scan (3 months into chemo) came back NED. However, I am wishing you a clean scan results. Stay strong, and keep your positive spirit.

Hi Becky!
My daughter had signet ring cell. I've done a lot of research on it. My advice for you is to stay on top of all your appointments and testing. It can be aggressive, that's true. Just make sure to get your scans in, fight your insurance company if you have to. I believe SRC can be a chronic disease you can live with.

And don't beat yourself up for drinking a little wine. You deserve a treat after doing all your chemo, etc. Just live your life, "test-to-test" as others have said!

Hi, Becky!
Sorry you need to be here but glad you have found great folks as those who replied you here.
Do you know if your tumour has been tested for MSS/ MSI? That opens a door to other possible, specific therapies, in recent years, like immunotherapies.
Wanted to direct you to other fellow who has SRC (and is MSI), receiving immunotherapy that has kept her stable after chemo failure: viewtopic.php?f=1&t=56560&start=15#p447261
I hope your scan is wonderful and you don't need anything of this! But just keep in mind that if it is not, it can be manageable.

Hi Becky,

You indeed have found a bunch of great people, including the always helpful splendid and very well informed Maia.

I am Stage IV SR CRC (Sigmoid, 8/39 nodes) for 18 months now. Sigmoid tumor removed with 1 peri-mets, and a LAMN tumor in my appendix in July 2015. Three months of CapOx followed by HIPEC (dec 2015, three more peri mets killed) and another three months of CapOx. Yesterday I got a clean CT and great bloodwork back, so I am technically 1 year NED.

Yes, SR cells are agressive and more difficult to visualize on scans. Yes, prognosis is poorer (about half of the overall average, roughly 30% instead of 60% for stage III) but they DO respond to chemo. A part of the poor prognosis is related to the location of metastasis, as SR cells tend to prefer to spread to the peritoneum first over lungs and liver. Peri mets are always very persistant.

I have read a dozen studies on SR so feel free! For instance about a study 2000+ SR cases (1989-2010) in the Netherlands.
A wise person (not Churchill) said once: There are lies, huge lies and statistics.

Vincent

BeckyH wrote:.. I am new to this board and looking for education and perhaps inspiration.
Thank you in advance.

Just one point of information: You probably know all of this already based on your prior research, but I'll try to summarize what little I've read, just in case anyone else out there might be interested:

In the standard pathology report coding, there are two different codes for SRC. One of them, Code 8490/3, is for the case where more than 50% of the cells in the tumor are judged to be SRC, and the other is the case where <50% of the cells in the tumor are judged to be SRC. If a patient is diagnosed as SRCC, it might be important for the patient to know which of the two diagnostic codes apply, since apparently the prognoses are a bit different for the two. Here is a quote from the WHO manual:

Signet ring cell carcinoma of the colon and rectum
"This variant of adenocarcinoma is defined by the presence of > 50% of tumour cells with prominent intracytoplasmic mucin, typically with displacement and moulding of the nucleus. Signet-ring cells can occur within the pools of mucinous adenocarcinoma or in a diffusely infiltrative process with minimal extracellular mucin in a linitis-plastica pattern. Large signet-ring cells can be termed "globoid cells". Some signet ring cell carcinomas are MSI-H and are low-grade, but those that lack MSI-H are usually highly aggressive. Carcinomas with signet-ring cell areas of < 50% are categorized as adenocarcinoma with a signet-ring cell component."

Ref: WHO (World Health Organization) (2010). Classification of Tumours. Pathology and Genetics of Tumours of the Digestive System (4th edition). Bosman FT, Carneiro F, Hruban RH and Theise ND. IARC Press, Lyon.

Here is an image of Signet Ring Cell Carcinoma of the colon:

Hello everyone,

Thank you so much for the replies and the inspiration/education. I have a few new questions to ask my Oncologist thanks to you wonderful people.

I received the results of my initial CT scan this past Tuesday and there was no evidence of disease at this time. I will be scanned again in 3 months. Should anything suspicious appear, I believe they would do a PET scan as opposed to a CT scan.

It is difficult to shift from the chemo/treatment mindset where I felt like I was actively doing something to more of a "wait and see" mindset where I try to figure out my new normal. I am visiting with a psychologist who specializes in working with those of us with cancer so I can get my head straightened out.

I truly appreciate the support and all of your kind words!
Becky

Just in case someone got searching here, in need: a trial for Signet Ring Cell Carcinoma. Immunotherapy. Not yet recruting. New Jersey. Talimogene laherparepvec + Nivolumab (IMLYGIC® (talimogene laherparepvec) was the first oncolytic viral therapy approved in US, in 2015). https://clinicaltrials.gov/ct2/show/NCT02978625

Maia wrote:Hi, Becky!
Sorry you need to be here but glad you have found great folks as those who replied you here.
Do you know if your tumour has been tested for MSS/ MSI? That opens a door to other possible, specific therapies, in recent years, like immunotherapies.
Wanted to direct you to other fellow who has SRC (and is MSI), receiving immunotherapy that has kept her stable after chemo failure: viewtopic.php?f=1&t=56560&start=15#p447261
I hope your scan is wonderful and you don't need anything of this! But just keep in mind that if it is not, it can be manageable.

Hello. I'm new to this so I hope I'm doing it right. My husband has signet ring cell colon with mets to paritoneal cavity. He is MSS. Can anyone offer me any help?

Goldfish wrote:Hi Becky,

You indeed have found a bunch of great people, including the always helpful splendid and very well informed Maia.

I am Stage IV SR CRC (Sigmoid, 8/39 nodes) for 18 months now. Sigmoid tumor removed with 1 peri-mets, and a LAMN tumor in my appendix in July 2015. Three months of CapOx followed by HIPEC (dec 2015, three more peri mets killed) and another three months of CapOx. Yesterday I got a clean CT and great bloodwork back, so I am technically 1 year NED.

Yes, SR cells are agressive and more difficult to visualize on scans. Yes, prognosis is poorer (about half of the overall average, roughly 30% instead of 60% for stage III) but they DO respond to chemo. A part of the poor prognosis is related to the location of metastasis, as SR cells tend to prefer to spread to the peritoneum first over lungs and liver. Peri mets are always very persistant.

I have read a dozen studies on SR so feel free! For instance about a study 2000+ SR cases (1989-2010) in the Netherlands.
A wise person (not Churchill) said once: There are lies, huge lies and statistics.

Vincent

WilliamsStrong wrote:
I'm new to this so I hope I'm doing it right. My husband has signet ring cell colon with mets to paritoneal cavity. He is MSS. Can anyone offer me any help?

WS, yes, you're doing it right. I asked you in other thread something, to try and see what's available to you (here: viewtopic.php?f=1&t=56992#p450633 ). So, asking you again here: Are you saying that it has been determined he is not a HIPEC candidate? And the primary in colon hasn't been removed?
The microsatellite status (MS) is MSS, then. Any other mutations?
Where is he treated, or in which State are you located, if you feel comfortable sharing that? Are you able to travel for treatment...?
For example, there is a clinical trial that I've mentioned in this thread, but who knows if location is not a problem for you.

As Goldfish said, SRC responds to chemo (even if metastatic cancer is not cured by chemotherapy), so maybe other chemo regimen, or an immunotherapy, could convert his cancer to resectable. And you have read that some people has complete responses (that is, no visible cancer) to chemo for peri mets, during many time. Other chemo regimen will be the standard of care offered to your husband.
But knowing if you're husband is treated at a large centre, if his onc talked about clinical trials, how he/she consider them, is important to determine how to help you. There are treatments outside USA, for example, but might be absurd even mention them.

Hello Colon Club Warriors--

I wanted to check back in. My chemotherapy ended in August, 2016. I have had 3 scans (at 3 month intervals starting with the post chemo one) that have shown no evidence of disease. I am due for my next scan mid-May. I am hopeful for a clear scan so that I can enjoy a summer with my 11 and 13 year old. I am slowly learning to live and enjoy my moments--even my most mundane ones--because I am at heart so very frightened of the course of action should cancer re-occur. Perhaps in 5 years if I am N.E.D. I will be more optimistic about surviving?

Incidentally--I live in St. Louis, MO. A few weeks ago, an industrial boiler blew up and took flight. The piece of machinery--equivalent to a mini-van--crashed through the ceiling of a neighboring business. Two brand new employees (a husband and wife) were sitting there filling out paperwork and were killed immediately. Horrible stories like these remind me that none of us know for sure when we will take our last breath or what will be the cause of our demise. SO--Colon Cancer Warriors--LIVE! Enjoy your moments...even the most mundane of them. Today, a friend also shared this with me.... very powerful and true: http://www.inspiremore.com/to-my-fellow-working-moms/

Keep living...keep laughing...keep loving.
Becky

Hi,

I'm so glad you are continuing to do well! I also had signet ring cell colon cancer in the sigmoid colon. I had 14 out of 18 positive nodes (stage 3c) and a few other factors working against me. I had my surgery in May 2008 and I have not had a recurrence. I know how terrifying it is to go from scan to scan worrying about what tomorrow will bring. It sounds like you are hanging in there though!

Take care,
Dori

Oops! LOL I see that I responded with nearly the same words back in January. Still sending you my best wishes!

Hi everyone on this thread, I just wanted to say well done on your NED - I hope you are all continueing to do well.

I have posted a couple of times on here and most recently in a bit of sheer panic, but having read this thread and seeing people fighting and having NED gives me hope and reassurance for my husband !

All the best to you all & hoping you are all still doing so well