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Lynch Syndrome? Kras, signet cell, etc?

jen2012
Posts: 1208
Joined: Aug 2012

My husband's surgeon has been recommending that he do the genetic testing.  I asked him if it comes back negative does that mean our kids will not need to be tested early and he said no that they should still be tested 10 yrs before their dad's diagnosis.  I can't help wondering why bother with this - just another expense.  Have most gone through this genetic testing?  What is the advantage?

Also, we have never been told anything about my husband's tumor and not sure we want to know.  I keep reading stories about kras, signet cells, etc. - is it a bad idea to assume that the doctors would have given us any of this info if we needed to know or do we need to ask for him to be tested for these different types?

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 452
Joined: May 2012

I was tested for kras and I am positive, which means some chemos would not do anything for the tumor, the tumor is resistant. Which means for me there are limited chemos to take.
Sandy :)

jen2012
Posts: 1208
Joined: Aug 2012

Thanks Sandy - did you request the test or was it automatic?

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 452
Joined: May 2012

I requested it. I know the Drs from working with them at the hospital (I was a nurse on med/surg) and I have requested a lot of things. It's kind of bad knowing to much and seeing patients die. I haven't worked since my diagnosis 4/11/2012.
Sandy :)

jen2012
Posts: 1208
Joined: Aug 2012

I can see how it would be difficult going back to work Sandy.

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

KRAS testing is a good idea...that does determine if Erbitux or Vecitibix is available for use...if you're mutant, there's not point in taking it as it doesn't help and the toxicity would be for naught. 

If he's wild, then he's got both of the other options. My first onc never mentioned this...although ready to put me on Vecitibx at the drop of a hat.  My 2nd onc actually mentioned to me that he wanted to test me for this; thought it would be a good idea. 

Signet Cell and Lynch Syndrome are more agressive cancers....cancers inside the rectal cancer family.  I can't speak of what the differences for treatments would or wouldn't be here...I'm just good ol' fashioned rectal adeocarcinoma.

But, being more aggressive cancers and knowing whether one has that or not, is a good thing....and I would want to know about it, Jen, were I the patient.  But, they should have known what type of cancer it was at the time of the biopsy in the O/R, when they could get a good, clean sample. 

I knew right away, I was adeocarcinoma. 

As for testing for the kids, maybe that decision could be reached after gaining some data from your husband. 

KRAS is definitely a good test...and money that would be considered well spent.

Alot of folks say, "Knowledge is Power..."

That's tired, I prefer to see it as "Knowledge is Choice."

And from a Choice - we might get the Chance - and a Chance is all that any of us can ever ask for.

We NEED to know, Jen...some of us may not want to know...but turning and facing what you're up against, always empowers you in your fight...because you stood straight up and confronted your adversary.

Drag the tough topic out the of the shadows - and into the light.....we can see it much better that way:)

We're in a fight and the more we know about the other side, the better we can map our defense.

Start with daddy...see what that yields...and you'll still have time to decide on the kids from what you gather.

-Craig

 

 

jen2012
Posts: 1208
Joined: Aug 2012

I know you are right Craig. It just seems like we get depressed every time we talk to a doctor. Afraid of news that will pull us down but i guess it is better to have the facts. I will be emailing the doc this weekend to see what she knows. I do remember the surgeon referring to adeocarcinoma at the first visit but im not sure what they tested for after the colonoscopy.

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

Did the surgeon say what "genetic testing" he wanted to do?  Is it to determine best treatment options?  If so, ask for the name of the company he wants to do it.  My sister's surgeon had it done and the results were of no benifit for her treatment as the testing is not based on type of cancer, recommended costly off label chemos and only phase 1 trials.  Also not all insurance companies will pay for this testing and it is expensive.

I would ask more questions before agreeing....Primarily, what does he hope to learn which will assist in husband's treatment.

Marie who loves kitties

jen2012
Posts: 1208
Joined: Aug 2012

The lynch testing. Im not sure of the company...or what it means for treatment. The surgeon is big on ccr research and has been talking about this since day 1.

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

If the Onc wants to test for Kras, it's because some chemo's don't work well if you are Kras mutant.  I kept wondering when my onc was going to test for it, and he did about a year ago.  So when I had to switch chemos he looked to see what the Kras test results were (I'm not luckily) and switched me to irinotecan.  So that aspect is important.  If it is to see if you have a genetic propensity for your children, I would (this is just me personally) worry that the insurance companies would use that against my children in the future (yes I know obamacare is supposed to happen, but what happens when they change and tweak some things?) and that would worry me more, as it easy to make sure they get tested years earlier and more often then the average person out there in the future and to look out for it, then to make a reason for an insurance company to charge them more for health care coverage.

Winter Marie

jen2012
Posts: 1208
Joined: Aug 2012

We've had that same concern for the kids about insurance. We'll have to decide i guess after we find out about my husband. We keep hoping this was caused by previous radiation and it wont mean anything to our kids.

bailee2012
Posts: 61
Joined: Jul 2012

was that the kids would need to start being watched closely ( colonoscopy etc) as early as 25 if there is a chance that they could be positive also.  Being negative for lynch means they need to start doin that 10 years younger than their father was at dx.  Which means they will have tostart at 38 years old versus 25.  We had the testing done on my husband and it was negative and ins paid.  I believe I would have followed through with the kids being tested had he been positive.   That's just my opinion and I hope all goes well for you guys in this journey.

jen2012
Posts: 1208
Joined: Aug 2012

Thanks for your thoughts bailee...i didnt realize theyd have to be tested 25 yrs earlier! How is your husband doing?

bailee2012
Posts: 61
Joined: Jul 2012

He is doin fine I guess. Been handling treatments and workin full time for the whole time.  Had a scare the other day with a arterial bleed that just so happened while he was getting chemo so we had the wonderful nurses to help him hang on until rescue arrived.  Not sure he would have survived If not for that.  The blood loss was unbelievable and unstoppable.  This whole disease is so unfair to anyone dealing with itbecause it seems to change the rules in the middle of the game. Just when you have a handle on the current issue at hand, somethin else pops up unfairly and unexpectedly.  So sorry anyone on here is goin through this crud.

jen2012
Posts: 1208
Joined: Aug 2012

I agree bailee...i hate cancer. Im sorry about your husbands bleed but glad the nurses were there to help. Scary im sure! My husband is still working full time too. Its probably good for them to keep busy and on routine. I hope you are doing ok too...so hard on the whole family.

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