signet ring genetic

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lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

signet ring genetic

Postby lovingstepmom » Sat Mar 02, 2013 6:50 pm

Has anyone else had genetic testing done once they were diagnosed with Signet Ring Cell? I am just wondering how many people actually had any positive results.

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prtza
Posts: 405
Joined: Mon Apr 02, 2012 2:47 am

Re: signet ring genetic

Postby prtza » Sun Mar 03, 2013 10:24 am

I haven't no. What type of genetic testing do you have in mind?
DX CRC 2/29/12 Signet Ring Cell @44 YOA
Left hemicolectomy 3/9/12
T4N2M0 Stage IIIc 10/11 LN
April-June 2012 30 treatments chemoradiation
6 cycles XELOX 7/11/12-11/7/12
12/7/12 NED
Recurrence Jan '13
Starting FOLFIRI 2/20/2013

mtlimpactfan
Posts: 96
Joined: Fri Dec 28, 2012 2:02 pm
Location: Montréal Quebec

Re: signet ring genetic

Postby mtlimpactfan » Mon Mar 04, 2013 11:53 am

I think that you might be referring to the Lynch Syndrome? There's a website fully dedicated on this issue and it was posted by NWgirl a couple of days ago (http://www.lynchcancers.com/). There's a great medical article that I found on that website on the behaviour of colon cancer with SRC features. It seems like these bad cells do not like to migrate in the human body and therefore SRC tend to be less metastatic than other cancers.
Finally, before you test for the Lynch Syndrome, we were told by our oncologist to test (pathology) for the MSI indicator. Here's the article on that issue: http://www.hindawi.com/journals/cdi/2010/170432/
DW 38 DX 1/09 CRC(T3N1) 3/33 LN (colitis @19yo)
6/09 Temp Ileo J-pouch
Folfox 12 rds
06/12 regional recurrence SRC adn poorly diff Gr3/3
28rds ChemRad
surgery (hyst, ileo)
12/12 Folfox 12 rds
2013 All neg Pet/CT
05/14 It's back, inoperable
09/14 Vectibix

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: signet ring genetic

Postby Laurettas » Mon Mar 04, 2013 12:30 pm

Um, my husband had SRC and his cancer spread like crazy, but primarily through his lymph system. Within 16 months of diagnosis, he had a 3cm tumor in his brain which normally takes a long time with regular colon cancer to develop. He had tumors in his lymph system everywhere as well as tumors in his lungs. His peritoneum was also covered in tumors when he had his initial surgery. My understanding is that SRC metastasizes very rapidly and is often stage 4 at diagnosis.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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prtza
Posts: 405
Joined: Mon Apr 02, 2012 2:47 am

Re: signet ring genetic

Postby prtza » Mon Mar 04, 2013 1:06 pm

Less metastatic? Mine spread to the small intestines very quickly. I think SRC tends to recur locally e.g Peritoneal more than other types which tend to spread to liver and lungs.
DX CRC 2/29/12 Signet Ring Cell @44 YOA
Left hemicolectomy 3/9/12
T4N2M0 Stage IIIc 10/11 LN
April-June 2012 30 treatments chemoradiation
6 cycles XELOX 7/11/12-11/7/12
12/7/12 NED
Recurrence Jan '13
Starting FOLFIRI 2/20/2013

lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

Re: signet ring genetic

Postby lovingstepmom » Mon Mar 04, 2013 7:20 pm

My step-sons has tested negative for Lynch syndrome and there were a few other genetic tests done that were also negative. There is a large panel of genetic testing that they are planning to draw on him. He is a stage 4. He had bone and lymph metastatic disease. They have told us that the genetic testing could change his treatment course if any of the test come back positive. I was just wondering if anyone has had any positive genetic tests, because we were told with his young age this cancer is usually a genetic cancer. Yes we have been told that the SRC is aggressive and often holds a poor prognosis, but his oncologist is going to fight hard with him. After 12 cycles of the folfox most of the lymph and bone mets resolved however the tumor itself didn't lose any metabolic activity with the PET scan. So the tumor hasn't grown but it didn't shrink.

Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

Re: signet ring genetic

Postby Dori » Mon Mar 04, 2013 7:26 pm

I'm so glad to hear that your step-son is responding to treatment! I had signet ring colon cancer and I've asked my oncologist about genetic testing. She never indicated that the SRC cancer is any more likely to be genetic, but I think it is true that CRC in younger patients is more likely to be genetic than in older patients. That's what I've heard, anyway. I'm no expert!
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

Re: signet ring genetic

Postby lovingstepmom » Mon Mar 04, 2013 7:28 pm

You are pretty young yourself, I would have thought they would have done testing on you. Colon cancer is unusual in anyone under 50-60 from what I was told.

Dori
Posts: 426
Joined: Mon Jun 23, 2008 10:29 pm

Re: signet ring genetic

Postby Dori » Mon Mar 04, 2013 7:36 pm

Yeah, I've wondered about it too, but I guess they don't test everyone who gets CRC at younger ages. It may be an entirely different story at your step-son's age though. I've worried about whether I am susceptible to other cancers because of this, but I try not to over-worry (which is very hard for me!).

Sending all my best wishes to your and your step-son and the family!
47 years old
Stage IIIC, high grade signet ring, 14 out of 18 nodes affected
Colon resection 5/15/08
FOLFOX 6/08 - 11/08
Mom to a great 11 (!!) yo girl
Currently NED

lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

Re: signet ring genetic

Postby lovingstepmom » Mon Mar 04, 2013 7:39 pm

Thank you

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: signet ring genetic

Postby so-scared » Mon Mar 04, 2013 7:43 pm

I have thought about you and your stepson often. It is nice to get an update. If I remember correctly he is only like 16 years old. That is soooo young! I am so happy to read that he has had a good response to treatment!

My husband is the one with cancer, not me. The genetic counselor feels it is definitely genetic. His father and all three of his fathers brothers died from CRC cancer but they were all much older than my husband. He has had a lot of genetic testing done and all of those tests have come back negative. This does not mean that it is not genetic. It just means that the specific mutation has not been identified yet. We decided to bank his DNA for future use as genetic testing advances etc. This will benefit our children if my husband is no longer with us. :cry:

I hope that your stepson continues to do well!!
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

Re: signet ring genetic

Postby lovingstepmom » Mon Mar 04, 2013 7:57 pm

Yes he is 16. Currently they are giving him a mental and physical break from the oxiplatitin and he is taking a oral chemo for 14 days (xeloda) and avastin on one day. The oncologist feels this is the best time to give him a break from all the negative side effects (cold sensitivity, muscle cramps, feeling of the lump in the throat) However she has warned us that he may only get 2 cycles or 12 cycles before the cancer worsens. (each cycle is 3 weeks) I pray he gets as many cycles as possible.

The genetic testing they are wanting to run through the city of hope. They specialize in genetic testing. Not only do I want to see him get the appropriate treatment but I also fear for my daughters. Signet cell is so aggressive and we found out about his during stage 4.

I pray your husband beats this awful disease also.

lovingstepmom
Posts: 23
Joined: Sun Sep 09, 2012 7:39 pm

Re: signet ring genetic

Postby lovingstepmom » Mon Mar 04, 2013 8:02 pm

Laurettas wrote:Um, my husband had SRC and his cancer spread like crazy, but primarily through his lymph system. Within 16 months of diagnosis, he had a 3cm tumor in his brain which normally takes a long time with regular colon cancer to develop. He had tumors in his lymph system everywhere as well as tumors in his lungs. His peritoneum was also covered in tumors when he had his initial surgery. My understanding is that SRC metastasizes very rapidly and is often stage 4 at diagnosis.


What symptoms did your husband present with for the brain tumor. I didn't think that SRC typically went to the brain. My step-son was diagnosed at stage 4. His peritoneum, lymph and bones were peppered with metastatic disease. He has had occasional headaches but the PET scans which he has frequently show no abnormal metabolic activity in the brain. I am so scared with the aggressiveness of this cancer.

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: signet ring genetic

Postby so-scared » Mon Mar 04, 2013 8:06 pm

I am sending you a PM. Please look for it in your message box. Give me a minute to type it though. :wink:
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: signet ring genetic

Postby Laurettas » Tue Mar 05, 2013 1:21 am

What symptoms did your husband present with for the brain tumor.


First of all, I have to say how very sorry I am to hear about your stepson. He is so very young to have to be dealing with all of this. My husband was 24 when he had Hodgkin's disease, a form of lymphoma, but that is old compared to your stepson!

It is somewhat difficult to explain my husband's symptoms of his brain tumor. His back was bothering him so he took a couple of Hydrocodone for the pain. Immediately after, he began showing signs similar to a stroke. His arm was pulled to his chest and his leg on the same side was not working properly. He quit taking the hydrocodone and the symptoms began to subside but when we told his onc, he wanted a brain MRI just to be sure it was the medication and not anything else. Well, it turned out that he did have a tumor in his brain.

He had been mentioning for months also, that he thought something was not right with his vision but his onc dismissed it and told him to go to the eye doctor. Turns out that his tumor was probably causing him vision issues for months before he was diagnosed. We just didn't even think about that as a possibility.

He, however, never had headaches from his tumor so I can't help you with that at all. We were told that MRIs were the most accurate way to scan the brain for tumors so that is what we had done. I certainly hope that your stepson does not have to deal with that also. He has so much already. My heart hurts for your stepson and all your family. I hope that you are able to find peace on this most difficult journey.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace


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