An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

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bitchslapped
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An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby bitchslapped » Tue Mar 24, 2015 3:29 pm

DNL (wife of other DSS, ) Skyped me today re: recent dr. appt they had in Europe (American Base, former military, private insurance). He had colonoscopy in Oct (in the states, Kaiser) of which a few polyps were removed & was recommended another one in 6 mos due to family history as demonstrated in my signature. He is 33. This doc wants records from 1st colonoscopy + perform the 2nd one + endoscopy (bottom up/top down) + genetic testing for lynch syndrome, familial cancer...also bloodwork to include Vit D levels (my request to dnl awhile back). When the possibility of removing the colon, w/a colostomy bag was mentioned as a consideration in his future as a preventative measure, depending on all test results, it apparently has freaked my DSS out.

I think familial is a given.
bitchslapped
Last edited by bitchslapped on Sun Jul 26, 2015 12:44 am, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

canadiandaughter
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby canadiandaughter » Tue Mar 24, 2015 6:55 pm

Wow, that would freak me out to. It's a tough call. Not sure what I would do.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

WifeOfMike
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby WifeOfMike » Tue Mar 24, 2015 11:23 pm

Dearest Lois,
I am so heartbroken to hear he had polyps. But super glad to hear he has been tested, retested, familial & Lynch looked at. I am right beside you in the fear dept.

My Mike was 59 when I lost him this January. Mike's mom's father died of colon cancer at 38, her brother (his uncle) died of colon cancer at 36. Mike's mom has survived breast cancer, ovarian cancer and sarcoma of the hip. I have plans to have all 3 sons tested as soon as I come up for air- 22, 27 1/2 and 30. I am testing them all for familial cancer & Lynch syndrome too. Mike's MSI stable status supposedly meant Lynch syndrome was not an option. The head of the genetic testing dept at USC Norris had wanted to do more extensive testing on Mike- but his health took a dive & we pulled out of the clinical trial- and you all know the ending. I still have all of Mike's tumor slides & plan on having them run against my sons to add into the data base. I honestly think they need more research/ samples to work with and they are going to find more links than they presently have. There cannot be that much cancer in one family, and it all be chocked up to bad luck.

Genetic testing combines a study of family history with an analysis of patterns in genes and chromosomes within normal cells in order to determine the likelihood of a person developing a disease, or passing an inherited condition to their children.

familial cancer
Cancer that occurs in families more often than would be expected by chance. These cancers often occur at an early age, and may indicate the presence of a gene mutation that increases the risk of cancer. They may also be a sign of shared environmental or lifestyle factors.

What is Lynch syndrome?
Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps. In individuals with this disorder, colon polyps occur earlier but not in greater numbers than they do in the general population.

How common is Lynch syndrome?
In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year. Approximately 3 to 5 percent of these cancers are caused by Lynch syndrome.

What genes are related to Lynch syndrome?
Variations in the MLH1, MSH2, MSH6, PMS2, or EPCAM gene increase the risk of developing Lynch syndrome.
The MLH1, MSH2, MSH6, and PMS2 genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer.

Mutations in the EPCAM gene also lead to impaired DNA repair, although the gene is not itself involved in this process. The EPCAM gene lies next to the MSH2 gene on chromosome 2; certain EPCAM gene mutations cause the MSH2 gene to be turned off (inactivated), interrupting DNA repair and leading to accumulated DNA mistakes.
Although mutations in these genes predispose individuals to cancer, not all people who carry these mutations develop cancerous tumors.
http://ghr.nlm.nih.gov/condition/lynch-syndrome

There is much more here by the NIH:
Genetics of Colorectal Cancer (PDQ®)
http://www.cancer.gov/cancertopics/pdq/ ... ofessional

MANY Hugs to you and your family Lois.
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

bitchslapped
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby bitchslapped » Fri Mar 27, 2015 1:58 pm

Thx for the info Vicki. I have read up on the topics previously of course, but one thing stands out in your posting for Lynch (I don't retain everything I read), & that is other primary cancers such as skin cancer. His dad had also had a cancerous mole (basal cell carcinoma) where the sun don't shine (upper back thigh). I have told both boys to inform their docs of this, just didn't remember it as far as Lynch. Since DSS now has had two sacrificial lambs...(excuse me, everything of recent is still so fresh for me)...first degree relatives precede him, being his dad & brother, he now has every reason to be tested.
Let's hope this info will help others.

First, Second and Third Degree Relative

A first-degree relative is defined as a close blood relative which includes the individual's parents, full siblings, or children

A second-degree relative is defined as a blood relative which includes the individual's grandparents, grandchildren, aunts, uncles, nephews, nieces or half-siblings

A third-degree relative is defined as a blood relative which includes the individual’s first-cousins, great-grandparents or great grandchildren

I don't know what I would do or recommend either, cd. It seems those younger CT members here have adjusted to the bag ok, considering the options. Voluntarily opting for colectomy as a preventative measure @ a young age (33) certainly a tough decision. I hope it doesn't come to that. Might need to order him a copy of the CC's Colondar if he is faced w/this decision.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

teachpdx
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby teachpdx » Fri Mar 27, 2015 7:02 pm

My surgeon had mentioned having preventative removal of my colon before I had my surgery. I'm Lynch positive and my mom and gmom died of colon cancer. I kinda freaked out too. I may be Lynch positive, but they're not taking my colon unless there's some cancer attached. It's not like having elective mastectomies (not that that would be a piece of cake either) - you end up with a colostomy. I wonder how many people ACTUALLY get their colon's removed preventively. :shock:
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

WifeOfMike
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby WifeOfMike » Fri Mar 27, 2015 9:00 pm

You are more than welcome Lois. I love to help- butt YOU know that one, LOL

Along with the cancer's in Mike's family listed above, I add unfortunately have to add these:
My sis has had melanoma cancer removed several times along with pre-cancerous bits & pieces- nasty one on forearm & pre-stuff around face
My pop had bladder cancer (two bouts, then NED for life till 96), Mike's one (of two) sisters has had pre-cancerous polyps removed several times
More reasons I am pushing my sons to be tested. Everyone at risk- please test YOU & your loved ones & friends

Hugs,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

bitchslapped
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure?

Postby bitchslapped » Sun Mar 29, 2015 12:38 pm

teachpdx, I agree w/you as the same thoughts crossed my mind re: mastectomy. That would be bad enough, but certainly not the maintenance required on a daily basis I would think, especially @ a young age. I wonder how many get past the "mentioning" & actually into the "discussion" phase. Those such as yourself, that have had to deal w/this & Lynch positive would certainly carry a lot of weight w/me. There would have to be some very high risk % to get my attention.

bs
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

bitchslapped
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby bitchslapped » Sun Jul 26, 2015 12:43 am

DSS #2 had the genetic counseling, Lynch positive, MLH1 mutation. It has been recommended he take 450 mg daily aspirin for 4 years, yearly scopes + a capsule (camera) endoscopy. Believe he has had the regular endoscopy as well. He also tested deficient in Vit D so on those supplements. My 7 year old grandson...well I have my concerns there too w/a 50% chance of inheriting this gene mutation. He will not be considering any invasive measures @ this point. I wonder if a CEA baseline would be beneficial at all.


And the beat goes on...

Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

WifeOfMike
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby WifeOfMike » Sun Jul 26, 2015 1:48 pm

bitchslapped »
I wonder if a CEA baseline would be beneficial at all.
My 7 year old grandson...well I have my concerns there too w/a 50% chance of inheriting this gene mutation.


CEA baseline may be a good thing. BUTT, CEA works for some as an indicator, for others it does not. I do not know why, I don't think anyone else does either. It is a question for perhaps DK37 or grouseman, or another one of our resident experts???? Search CT for CEA, I know it has been discussed many times here in the past.

Not so sure I would jump on the colon removal at this juncture. Testing & following DR's orders are imperative though. Familial polyps can grow quickly, and has to be watched with a hawks eye, so as not to get out of control.

Yes, I would be fearful too, as I am for my 3 sons... 30, 28 and 22. I am pissed waiting/ being in limbo over 4 months, in moving my mom in with me. I want my 3 sons tested NOW, baselines made etc.... just in case cancer is in their cards. No more stage IV at the get-go's for me & my loved ones. But my dance card has been overwhelming with major stuff, so it is on the wait list. I'm hoping for some down time in the cards to fit in this important testing to be done. Where is the fast forward button, when you need one?

You would think with the load of family you and I have lost to cancer/ major illness YOU and I would be given a pass- or at least some frigging GOOD news. Makes me hate the saying "you are only given what you can handle" and want to find the smart ass who coined the phrase... Like "Murphy's Law" I HATE that guy with a passion!!!!!!!! Sorry, I had to break the heaviness of yet another heart breaking news headline from you darling. Otherwise my heart would splinter. Wish you were nearby..... I would scoop you up in a heartbeat. I think of you, so very often

MUCH love sis,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

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CRguy
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby CRguy » Sun Jul 26, 2015 10:44 pm

WifeOfMike wrote: Makes me hate the saying "you are only given what you can handle" and want to find the smart ass who coined the phrase...
"Dear Whatever Doesn't Kill Me :
I'm strong enough now. Thanks." - somεεcards


Like "Murphy's Law" I HATE that guy with a passion!!!!!!!! Sorry, I had to break the heaviness of yet another heart breaking news headline from you darling.
Then you'll REALLY hate O'Toole ...
O'Toole's commentary on Murphy's Law
"Murphy was an optimist."


I don't know ? this may be the tough love part ... heavier on the love part ... BUTT

If there is something going on ... find out, figure it out, plan your work ...
THEN work your plan.

How many of us here know that knowledge is power ... AND the earlier we gain that knowledge .. the MORE powerful it is for us.

Good for you BS and Vicki, for pushing for info ..." You WILL miss more for not looking than not knowing..."
NO, it may not be comfortable for loved ones dealing with the truth of it ... BUTT you do know the alternative.

Keep pushing all .. you are doing GOOD !

Cheers and Harmony
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

WifeOfMike
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby WifeOfMike » Sun Jul 26, 2015 11:11 pm

CRguy »
WifeOfMike wrote:
Makes me hate the saying "you are only given what you can handle" and want to find the smart ass who coined the phrase...

"Dear Whatever Doesn't Kill Me :
I'm strong enough now. Thanks." - somεεcards

Like "Murphy's Law" I HATE that guy with a passion!!!!!!!! Sorry, I had to break the heaviness of yet another heart breaking news headline from you darling.

Then you'll REALLY hate O'Toole ...
O'Toole's commentary on Murphy's Law
"Murphy was an optimist."


YES, O'toole is on my shit list too! :evil:
YOU on the other hand are on my FAV list :lol: :mrgreen:

Peace out brothers & sisters
:lol: :lol: :lol: :mrgreen: :lol: :mrgreen: :mrgreen: :mrgreen:
Vickster
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

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exaussie
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby exaussie » Mon Jul 27, 2015 10:49 am

I hate that we had to test everyone in the family
I love that we tested everyone in the family

UGH.........................knowledge is power but I would rather be naive on some days
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

bitchslapped
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby bitchslapped » Wed Jul 29, 2015 10:03 pm

I can always count on compassion, humor & wisdom on CT. I had told my DNL: "It is not good information to hear, but good information to have."
Thanks you guys for your comments.


BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

bitchslapped
Posts: 1538
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby bitchslapped » Sun Aug 30, 2015 3:21 pm

The genetic counselor did not consider it medically ethical to test my 7 year old grandson for Lynch Syndrome & burden a child w/this information. His mama wants to know & went through the pediatrician to get the blood work done. They have gradually tweaked their diet, lifestyle due to risk factors over the last four years & even more so now that DSS has tested positive for Lynch, lost his brother to colon cancer recently, in addition to his father.

I really have mixed feelings on this, but I understand it. Should know in a few days.

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

justin case
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Re: An Ounce Or Two Or Three Of Prevention=A Pound Of Cure? Update, Lynch Positive

Postby justin case » Sun Aug 30, 2015 5:28 pm

bitchslapped wrote:The genetic counselor did not consider it medically ethical to test my 7 year old grandson for Lynch Syndrome & burden a child w/this information. His mama wants to know & went through the pediatrician to get the blood work done. They have gradually tweaked their diet, lifestyle due to risk factors over the last four years & even more so now that DSS has tested positive for Lynch, lost his brother to colon cancer recently, in addition to his father.

I really have mixed feelings on this, but I understand it. Should know in a few days.

BS

Let's count 1, 2, 3 and both of us let this cancer shit leave our thoughts, until it is necessary to think about again :roll: :roll: :roll: 8)
Michael
Oh, and I forgot, ha!
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012


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