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Portland, Ore. Area Lynch Syndrome Social Networking Event on March 22nd

mollymuch
Posts: 18
Joined: Jul 2011

I thought this might be of interest to some in this group.

Thursday, March 22nd, 5:00-6:30 PM

People affected by the hereditary cancer syndrome known as Lynch Syndrome are invited to this informal networking event. Caregivers, family members and friends are welcome!

Light refreshments will be served. Registration is appreciated, but not required. To register or for questions or to get involved, email lynchpdx@gmail.com.

This Portland area event is organized by local volunteers affected by Lynch Syndrome in observation of Lynch Syndrome Hereditary Cancer Awareness Day.

This day seeks to increase visibility and awareness of a syndrome giving affected people greatly increased rates of certain cancers, especially colon and endometrial cancer. Over 7,000 people in Oregon are believed to have Lynch Syndrome, but fewer than 400 have been diagnosed.

For more information about Lynch Syndrome Hereditary Cancer Day, visit: www.lynchcancers.com

Location

Oregon Health Sciences University
Center for Health and Healing (South Waterfront)
3178 (3rd Floor, Room 5)
3303 S.W. Bond Ave.
Portland, Ore. 97239

Once at the building, take the elevators up to the 3rd floor and following the signs to the Conference Center. From there, look for Room 5

Directions, and parking and public transit information:
http://www.ohsu.edu/xd/about/visiting/locations/chh.cfm

Note: OHSU has generously made space available for this event but is not a sponsor.

http://lynchpdx.wordpress.com/2012/03/02/lynch-syndrome-hereditary-cancer-awareness-day/

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you for posting this informations. Although I live in WA I appreciate your efforts to get this information to others.

I find out on March 13th if I have Lynch Syndrome. My genetic counselor told me to fully expect it as my tumor showed the characteristics. A stunning blow, I had no idea that it even existed.

I fully intend to work to get the word out to others once I get through my treatment, which will be in April. I will have to start with my own extended family.

Are you Lynch positive, if you don't mind me asking? It's just nice to know/speak/type to someone else learning to deal with the diagnosis.

Thanks again,
Rachelle

mollymuch
Posts: 18
Joined: Jul 2011

Hi, Rachelle - yes, I tested positive for Lynch recently and am just trying to figure out the world of Lynch, which is one reason for holding this event. I see you'll get more information tomorrow, and I'll be thinking of you!

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I received my positive diagnosis today and I am okay with it, as if I have a choice.

Thanks again for working to inform people, I think a lot more people have this than we know.

Take care,
Rachelle

mollymuch
Posts: 18
Joined: Jul 2011

Hi, Rachelle - hmm I'm not sure if 'congratulations' are in order? Maybe congratulations for getting the information you need to get screened and take care of yourself and your family. (One of the things I've read about Lynch that I like is that those of us who get adequate screening have the same life expectancy as those who don't have Lynch at all.)

I'm fairly new to Lynch myself, and have heard from my oncologist that she's seeing more and more of us, as they do testing more. And they are learning new things all the time.

Lynch Syndrome International is a national resource out of California and they have brochures, etc. they can send you and lots of information. You can also follow them on FB. I'm personally a little worried about having my real online identity too closely tied to a genetic cancer - I worry about employment discrimination.

I got my Lynch diagnosis after finding stage 3c uterine cancer - I'm personally a little less worried about a new cancer than I am the uterine cancer recurring. I did a little write up on my story of why awareness is so important:

http://lynchpdx.wordpress.com/2012/03/01/why-is-awareness-of-hereditary-cancer-important-one-story/

My genetic counselor gave me a letter to share with my family that was helpful. Did your genetic counselor give you anything like that?

Yes - it is nice to connect to others with this "rare" problem! this is one of the main reasons why I'm organizing a local event - so I can find others, since my oncologist and gastro' say they're seeing so many of us!

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Hi Mollymuch!

I haven't been on here for awhile. I had an infected Picc line and had my 5th chemo yesterday.

I've been busy and I get a little depressed if I get on the boards too much.

I did not receive a letter from my genetic counselor to explain things to my family. I've done a lot of research on Lynch, so I feel confident that I've told my family what they need to know. Unfortunately they all live across the country from me, so they will need to find a counselor closer to home. The test will be less involved. I am just so thankful that I may be able to help prevent cancer in a loved one.

I, too, am worried about uterine recurrence more than a new cancer. Did you have chemo and radiation? I only have one more chemo and I am not looking forward to subjecting my body to radiation, I've read it does decrease the odds of it coming back though. That is my team's plan for me. I am surgically staged at 2, but 2 lymph nodes lit up on a pet/ct scan. So did my right breast, however, and nothing was there. So, we honestly don't know what to think. I will have another scan after chemo.

I know what you mean about discrimination. I have gone public because my extended family lives so far away. I have a safe job, so I think I'm okay. I just worry about my children if they are diagnosed. I have time before I need to worry about that.

Thanks for discussing this with me, I really appreciate it. I'm in the Northwest, are you out this way?

Thanks,
Rachelle

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Duh, I know you are out here. I'm in Washington.

mollymuch
Posts: 18
Joined: Jul 2011

(sorry for my delayed response - I keep thinking I'm going to get notified when someone responds or something).

Sorry to hear about the infected Picc line!

I'm going up to the Seattle Cancer Care Alliance in a couple of months for a consult with Dr. Grady re: Lynch to get information on their recommended screening, etc. - you can never have too much information, I figure. The genetic counselor I spoke to said they see a lot of Lynch Patients. And I'm trying to organize a regular meet up for people in the Portland area - quarterly, maybe. I'm going to attend a meet up of FORCE (for people with hereditary breast and ovarian cancers) to see how they do things.

I had chemo and radiation, both external beam and vaginal brachytherapy. I had different doctors encourage me to do all one or all the other or all of it all - I went with all of it all because I figured why not? In retrospect the radiation was actually a little tougher on me than I expected, but I'm still glad I did it. Not to get too personal, but for one reason and another my husband and I are not that sexually active, so the vaginal dilating to compensate for the scarring has been harder than I expected. And I had an upset stomach through a lot of radiation - Imodium became my best friend at work. Overall, I did not enjoy it, but it wasn't the worst experience ever - and far better than a return of cancer!

It sounds like our staging was pretty similar. I would have been staged earlier but for involvement of two nodes with little tiny bits the doctors tell me - but I figured those tiny bits are just what they found so again, better safe than sorry.

Overall, a year+ out from treatment, I feel great,so hang in there!

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