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Signet ring adenocarcinoma...anyone else have it?

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I had my appointment with my oncologist to where he told me that my cancer is a "variant" (his words) of colon cancer. I have looked it up and found statistics showing that it is very rare...less than 1% of colon cancers. The prognosis isn't good...but then the only informlmation i have found is old. I am thinking that i need to find a specialist...even though i really like my doctor. I am concrrned that the chemo is not going to be very effective as this type of cancer is not only very aggressive but resistant to chemo.

Is any one else diagnosed with signet ring cell cancer? Does anyone have any info....info on specialists in signet ring cancer? I am in Northern Virginia...so Washington or even Baltimore woul be ideal. I also have family in Tampa...so Moffit could also be an option.

Alex

....i am sure i will have more questions as i statt to research this.

glinka65
Posts: 132
Joined: Feb 2009

sorry to hear man!!! i live in tampa, if you can get in moffit do it, rare cancer is right up there ally!!! if you decide to go there and need info on tampa, where to stay, eat things like that just give me a hollar!! good luck, Tommy

glinka65
Posts: 132
Joined: Feb 2009

sorry to hear man!!! i live in tampa, if you can get in moffit do it, rare cancer is right up there ally!!! if you decide to go there and need info on tampa, where to stay, eat things like that just give me a hollar!! good luck, Tommy

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

Check out this site which will give you all the NCI hospitals by state:

http://www.cancer.gov/researchandfunding/extramural/cancercenters#south

Once you find one or more that you have interest in, find that hospital's main web page. There you should find a way to contact them directly so that you can ask about their experience in treating your type of cancer.

Among those in your areas of interest are Moffit, Georgetown, John Hopkins, University of Maryland and perhaps others you would consider.

Also it would not hurt to ask your current doctor for his recommendation. He should be more than willing to help you find someone more experienced in your rare cancer type.

Let us know how your search goes.

Hugs,

Marie who loves kitties

Katherine85
Posts: 11
Joined: Jun 2012

Hi Alex:

I too have been dx with Signet Ring Andeocarcinoma. Mine they said is a rare type of cancer which started in 2003. I had my appendix removed and at that time they said it was a rare form of cancer - Goblet Cell Carcinoid Signet Ring. The oncologist did nothing at that time believing that they removed all of the tumor and I had nothing to worry about. Now, 9 years later I was with Stage IV colon cancer, from the Goblet Cell Andeocarcinoma Signet Ring. I am being treated with Folfiri and Avastin. The oncologist told me that they will do another CT scan in 3 months to see if the tumors are shrinking and in 6 months see if they can surgically remove the tumors. I am in the wait and see stage.

My doctors told me that this is NOT an aggressive form of cancer so I am confused. Please, please see an oncologist ASAP. Please also keep me posted.

You are in my prayers,

Katherine

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Katherine - you sound just like me...they removed my appendix too with the colon resection. My Dr told me that this is a vaiant of colon cancer that the tumor was contained mainly in the colon. They also removed 4 nodes that had cancer and 14 that were good. There was no evidence that it had gone elsewhere - and they think that they god everything. He said that the course of treatment would be the 6 to 8 months of folfox.

I want to make sure that they are treating this aggressively. Everything that I have read is that this is an aggressive cancer and that it is resistant to the typical colon cancer chemo therapy. I only had the one CT scan when I was originally diagnosed - I asked about a PET. Right now I want a second opinion and another CT scan.

I am going to ask my current doctor about avastin the next time I see him.

I am so relieved to hear that you are still going strong after 9 years....since this is so rare - some of the information out there is so old and not reliable or very positive.

Alex

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

Goblet Cell Andeocarcinoma or Carcinoid are not aggressive forms of cancer. They can morph into Signet Ring Cell which is aggressive. If you look up pics of the cells they are extremely close looking, and even a common misdiagnosis. My first Diagnosis was Goblet cell, and after a later review was diagnosed as Signet Ring Cell.

Do not read anything before 2007 about SRC, it is not positive.

Best Always, mike

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

My thoughts and prayers are with you, Alex.

I had been diagnosed in 18 September 2007, with Signet Ring Cell Cancer. (The Date I will never forget.) Recurrence in June 2010, with 4 tumors in my small intestine. FolFox for 6 months, blah blah blah.

Do not read anything printed before 2007 about Signet Ring Cell. It is not positive. The purifying of Oxaliplatin has changed the game in our favor! MY CEA was 1125 in June of 2010, and is now 2.0.

Diet, positive attitude, and exercise will do one well in fighting the Big C.

Find an Oncologist that has experience with Signet Ring Cell in the colon. I used St. Johns in Los Angeles, Lee Rosen MD., his group of docs write about 1/3 of the colon cancer papers in the USA. They had only seen 8 cases of SRC in the colon. My treatment was no where near perfect, at the same time I am here in remission, hopefully tumor free.

The Anti Cancer Diet - David Serban Schreiber MD is a really positive read. It is not about SRC but about cancer and about the research and cures that are up and coming. It also deals with the Doc's own battle with "incurable" cancer.

Best Always, mike

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thank you Mike! I will try to be conscious of the date of anything that I read. I am still looking for a more local doctor..mi am in Virginia. If i have to i'll travel to Baltimore, new York, Tampa, philadelphia, r even LA. There has got to be someone near me..mafter all i am near the national canfer institute (i have a call in to there), georgetown, and NIH. Right now i am on Folfox....i just want to get to a specialist so that we can fight this with fullninformation.

I have changed my diet...and will check out your book recommendation.

Alex

patmchere's picture
patmchere
Posts: 1
Joined: Mar 2013

Alex -

I am a colon cancer survivor and my wife is currently fighting appendiceal cancer (poorly differentiated signet ring cell adenocarcinoma).  Her doctor here in Atlanta is Dr. Daniel Dubovsky and he is following the protocols established for peritoneal carcinomatosis originating in the appendix with signet ring cell features.  Cytoreductive surgery (CRS) followed by HIPEC (heated intraperitoneal chemo) is typical for peritoneal cancer.

In trying to get more information for my wife's care, I received a recommendation to Dr. Edward A. Levine at Wake Forest.  He is reputed to be an expert in your specific type of malignancy.

http://www.wakehealth.edu/Faculty/Levine-Edward-A.htm

My wife is scheduled for an evaluation by MD Anderson Cancer Center.  Dr. Paul Mansfield and Dr. Keith Fournier both have significant experience with this type of cancer and practice at MD Anderson.

 

Hope this helps!

Patrick

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

Sorry, I can offer you no information regarding Signet Cell. But, there is a current thread on the Colon Club regarding this type of cancer and several members there have it. If you are not familiar with the Colon Club just google it and you can read the thread. Perhaps their members can tell you where they are being treated and what type of treatment they had.

Take care - Tina

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thank you! I just went over to the colon club...looks like that will be another good resource for me.

geotina's picture
geotina
Posts: 2042
Joined: Oct 2009

Another great resource is Fight Colorectal Cancer and Colon Cancer Alliance. Wish I could be of more help.

Tina

thxmiker's picture
thxmiker
Posts: 1198
Joined: Oct 2010

Thanks Tina! Two good new resources.

Best Always, mike

PS I just got a juicer and am adding juicing to my diet!

Mrs. B.
Posts: 7
Joined: Oct 2011

January 2011 I was diagnosed with stage 4 appendix cancer, signet ring cell. My appendix was removed, cancer on the peritonea, one lymph. Oncologist said aggressive, 40% chance of responding to chemo, prognosis 18-24 months with chemo. 6-8 months with no treatment.. I talked with American Can Society, same info. So I chose no treatment-- began juicing veggies, taking vitamins and supplements and became a strict a vegan. CEA and C9-19 numbers have dropped. I feel fine, no symptoms. Scan shows cancer on peritonea with minimal growth. This may not work for everyone, but it's working for me. Last appointment oncologist said he was surprised, thought we would have problems by now.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Mrs B ...what vitamins and supplements are you on? I am trying to eat healthier...no red mea...but i have been eating a little fish and chicken. I am doing chemo right now and have a call ijto someone at NIH...whch is thankfully close to my home.

Mrs. B.
Posts: 7
Joined: Oct 2011

Hi Maxiecat,

I apologize for not answering sooner.  I hope you are doing well.  I am still symptom free and still surprising the oncologist.  I take several vitamins and supplements.

I start the day with an organic essential detox, IP-6 & Inositol by Cell Forte, Milk thistle, ginger, turmeric, grape seed, Liver Guard by Source Natural, vitamins B, C & D.

I believe the vegan diet is really important. 

donnastar61
Posts: 1
Joined: Jan 2013

MRS. B,

I would like to ask you how you are doing at this time?  I see this thread stopped and I am wondering if everyone is OK.

I am a Colon Signet Cell Survivor and it never even dawned on me that my Oncologist at Duke may not have any other patients with signet cell rings.  In any event, I had traditional chemo and ressection and NED at this time. 

 

I have not participated in any internet forums and this is my first post.  So please understand I am not used to communicating that much on line. 

 

Thanks.

Mrs. B.
Posts: 7
Joined: Oct 2011

Donnastar61,

I am fine.  I am still trying to find my way around this message board.  I received your message in my csn email box, and sent you a message.  My last blood work had CA19-9 at 48.9 and my CEA stays normal at 4.80.  My oncologist says it is rare variety of a rare cancer.

 

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am doing well right now too.   I finished chemo in January and am now dealing with the neuropathy side effects.   I had a scare at the beginning of Feb... My liver panels were dnormal the normal range and I was sent for an MRI.   We believe the Neurontin I was on for the neuropathy caused it... Went off of it for 2 weeks and now back to normal.  I have been having some pretty much daily lower back pain... Dr is sending me for X-rays tomorrow.   I go back to see him on the 26th of March.  For now he is putting me on Lyrica.  he did not have my latest CEA number for me ... They did some bloodworm for it today....last time it was 0.9 ... Which is great.   We just changed insurance plans ... So now we can figure out which is the best specialist to see.   My current drs believe that they got everything out in the resection....I don't have any peritoneal issues right now.   I did ask for a PET...but this office believes in ct scans and MRIs.   I'll get my PET Scan one way or another..I'll just have the specialist order it?

 

I hope everyone else is doing good.   I am going to incorporate some of the other supplements that I am not already taking.

Alex

John23
Posts: 1832
Joined: Jan 2007

 

I don’t know why they tell you signet cell cancer is “rare”, since you’ll find a very large percentage of individuals right here that have it, including me.

 

It’s called “an aggressive” cancer, but it moves slowly; it just manages to spread better, I suppose?

 

I’ve had my dx in 2006… and many others have been around at least  that long, so try to relax a bit and look towards longevity, rather than demise.

 

PET scans were devised to outline a tumor with more clarity than a conventional scan. It uses radioactive glucose with the assumption that cancer cells use glucose at a faster rate than a good cell. Unfortunately, good cells that are in the healing process, or of a faster “recycling” organ, can uptake glucose faster than a cancer cell.

Those are the things that they don’t tell you.

 

The PET was not designed to be used for “fishing expositions”, or like a “treasure hunt”, it was designed to help surgeons locate a cancer tumor more accurately, not to locate individual cancer cells, or small clusters of cancer cells.

 

If your surgeon does not require or need a PET, you should take that as a good thing, not as some sort of a mistake. Across the years since 2006, I have never had a PET. I had been ordered one (while I had laid in ICU recovering from a resection), from an oncologist hell-bent on starting me on chemo (while in ICU), but the PET was cancelled as fast as it had been ordered. My surgeon concurred that it was foolish to have a PET while the body was in the healing process.

 

We’re all a bit scared of cancer, and rightfully so, but we should not allow that fear to point us into directions that can be more harmful than good.

 

In my case (as the surgeon informed me), I would have “lit up like a Christmas tree” on a PET scan, from all the healing going on. That of course, would have caused the oncologist to insist that chemo was needed to fight the enormous amount of scattered cancer cells inside me.

 

Don’t fret the absence of a PET scan; if your surgeon doesn’t need one, try to accept the decision.

 

Best of health to you,

 

John

 

Sonia32's picture
Sonia32
Posts: 1062
Joined: Mar 2009

I have that on my record. But it was never really mentioned to me. I only found out as I asked for my illness to be investigated.

Anyway I am in remission at the moment, from the class of 2009. I have a scan coming up soon, so I will see if I hit four years.

I had surgery, and 6 momths of chemo.

marbleotis's picture
marbleotis
Posts: 472
Joined: Mar 2012

Hi Maxi,

 

It is me (marbleotis) your signet cell buddy.  I had stage 3b signet cell.  R Hemichlectomy with 19 nodes taken, 3 were positive.  I went like insane when I read the signet cell on the labs.   I did not know what it was, what it meant.  So I did what every other cancer patient does, become "Dr. Google".  What I found is pre-2007 - do not bother. I worked myself into nutty-girl. My Onc was great and went over all the data.  Rare=so so , more agressinve than regular colon cancer, yes slightly.  But they are seeing it alot more now.  I have clear CT Scans, and the CEA is very low and not moving.

 

I had the surgery, 6 months of Oxi, 5 FU.  At 1 yr colonoscopy very small polyp found, removed.  Otherwise I am ok.  I spoke to many surgeons and they all say it is not uncommon to have a small polyp within that time frame.  Most important it was found and removed.  If it had stayed, well .... we know that answer.  This is rare/aggressive.  But let's face it all cancer is aggressive when you think about it.  It sounds like you are staying on top of it.  Get additional opinions - whatever makes you feel better.  I am closely watched, have completly changed my diet, exercise routine and life.

Information is power - we will have to be closely watched, maybe a colonoscopy every 6 months?  That is ok, what ever it takes to keep me NED.  I may pursue other specialists, not sure at this point.  I know it is totally scarry to read the words, "signet cell", trust me .......I really know.  But stay informed, positive, healthy, active and anything that comes your way you can react to.  I was so upset with the polyp, just to find out approx 40% will have small polyps to deal with.  It was removed, and I dealt with it.

 

Keep us informed.

marbleotis

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