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Where do I begin?

mamalala
Posts: 25
Joined: Jan 2010

Hi, everyone; a good Friday and good weekend to you all, and you-all know what that means in our world! I am a newbie/oldie who has been lurking for days now. You seem to be, not what the doctor ordered but what I need: a caring, supportive and knowledgeable community of individuals who, like me, had a dx (I'm learning your jargon)of colon (or rectal) cancer. I must tell you right off, I have not been able to personally meet anyone during my treatments with colon cancer nor anyone in my age range who is a colon cancer survivor. Lucky (?) for me that I found YOU. I don't know exactly what I can bring to the community, but wherever I can offer support, information (and that is somewhat sparse at this time), I promise to comment.

I recently had my 71st birthday. I was dx March 4, 2009, had surgery to remove the tumor (ascending colon) and resection of colon on March 6. "They" staged it as 3B; one lymph node out of 12 was involved, so I guess that puts me in a higher category? Between May and Oct. 2009, received 6 cycles Leucovorin/5FU here locally. Had my 3 month (since end of chemo) 1/4 and scope on 1/11. Yippee no polyps, and generally speaking a good report (CT Scan and blood work); however, liver did show a stable cyst and small lesions. I think that all sounds good. (Don't you just wish English were the chosen language of these reports! I guess the docs understand them. Bloodwork:CEA at 3/3 (H) don't know if I should be concerned.

My major dark thought which I keep trying to push out of my mind is that my mom died of colon cancer in her early 70s. I do answer that too with she had no treatment, yadda yadda, and things and times have changed since the '80s.

I already appreciate all the info, support, and humor I have found as I lurked on this site. Sincerely hope I can offer some perspective, insight...or whatever. Thank you, thank you.
mamalalalynn

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Good to meet you. I'm 59 and also Stage III with 5 out of 17 lymphs showing a few microscopic cells. I had much stronger chemo than you and am surprised you didn't have FOLFOX.

I don't know what a CEA of 3/3H means. A CEA of 3 or less is 'normal' for a non smoker but some labs are using a new test with new highs and lows.

Again, Welcome!

mamalala
Posts: 25
Joined: Jan 2010

Diane, thanks; good to meet you, too. Interesting, no choices were presented by my onc about chemo drug; don't know why he gave/chose 5FU; I understand that 5FU is a drug that's been around for quite awhile? Good to read that I'm normal; I thought the H meant 'high'. Onc did say he doesn't become concerned unless CEA reaches 5. It looks like I have a lot more questioning to do of him.

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

I too am fairly new to this place of wonderful supportive folks. I am 62 and just starting this journy with cancer.

As far as the reports go, don't ever be afraid to ask your health care team to put it in English for you...after all...it is your right. My personal feeling is that the more you understand about your personal situationn the better you can make your treatment choices.

You have found a good group of folks here who are willing to share and care.

Marie

mamalala
Posts: 25
Joined: Jan 2010

Good to meet you, Marie. I don't have another appointment with onc until April but I think I'll make an appointment now just to ask more questions, especially since I now have colonoscopy results. This time I'll take better notes! Sometimes I get a bit overwhelmed but IT all and am so into the moment that I don't take notes.Thanks for your reply.
Lynn

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, you've already begun, so you're off to a good start :)

Stay on top of it - if there is a benefit from this disease, it is that have caught it and you will now be watched and monitored, so if anything presents, then you'll catch it early from here on.

Nice to meet you, BTW. Any questions, just post and someone will come in and try to answer your questions to the best of their ability and experience.

Best of luck going forward!
-Craig

mamalala
Posts: 25
Joined: Jan 2010

Craig, thanks for your kind words. Your perspective is encouraging; I hadn't thought about how many people are involved in my care and monitoring. Dah! That does help me relax quite a bit. All I could think of before was that 'I have no control over this part of my journey.' Looking forward to reading your posts.
Lynn

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Happy Friday to you as well. I'm also a new member of this community. Keep pushing those dark thoughts about your mom's death away. I sounds like your treatment is going well and that you have much to be hopeful about. You and I are a little over three decades apart in age, but we're in the same boat; and we'll stay strong together.
Peace,
Roger

mamalala
Posts: 25
Joined: Jan 2010

Yes, age doesn't make a difference among people with our 'gift'. I do all I can to stay young and active and healthy, so my numbers are that of a younger person. I'm hopeful; thank you for reminding me of that. My friends and family have been hopeful through all this too. Sometimes I overlook that and my own caring for myself is put aside as I am also my husband's caregiver at times. Staying positive is not easy but I'm getting better at it with all the love and support I feel from everyone. Good to meet you, Roger.
Lynn

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Two new people today.. I dont know if that's a good thing or not?? LOL. WELCOME to our family!!! Lynn, sounds like eveything is going good for you. Great job!! It's a hard road to go alone. But now you have us to help you through the rest of it.

Life is funny sometimes

Brooks

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Another new person to welcome to our wonderful family! Lynn, put those dark thoughts away! I too, also had dark thoughts, my parents were only 40 and 46 when they died, back in the '80's, amd I will be 45 next month. My mom died of Leukemia, I was only 16, and my dad died of Liver cancer 4 years later, when I was 20, so I know how you feel. Back then, the doctors sure sucked at trying to take care of my parents. My mom died 19 days after she was diagnosed! they didn't have much back then 1981 like they do now, the treatments are greatly advanced with some great technology, and the chemo isn't what it used to be. They didn't have the good drugs back then either to help their pain and nausea. I try not to think of it, and hope my fate won't be like theirs, as I have 4 children that I want to see grow, and be a grandma!

We're here to help you with anything you need, please keep posting, and we're here to chat about anything...just be with us on our journeys :)

Hugsss!
~Donna

mamalala
Posts: 25
Joined: Jan 2010

Donna, thanks for your insights and good to meet you. So sad that you lost your folks at such a young age. It must have made you a stronger person? It's so good to be on this journey with people like you.
Lynn

mamalala
Posts: 25
Joined: Jan 2010

I'm grateful to be with you-all. Good to know there's a place to go! Brooks, life is funny...most of the time we can find some humor around. My sense of humor gets me through the hard parts. Nice to meet you.
Lynn

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Lynn, Marie and Roger

lcarper2
Posts: 638
Joined: Dec 2009

Welcome to our world this place is the only place to be when you are fighting cancer. Everyone in this room will give you advise and support in ways you won't get any place else. I am fairly new my self 62 yrs old cc 34 nodes 19 were cancer. Brittle diabetic couldn't take infussion chemo blood sugar went to 700 now on Xeloda until April . I got the news today from onc that I am cancer free...This is a battle and you must have faith and stength to fight for your life.Will be praying for you.

Louann

mamalala
Posts: 25
Joined: Jan 2010

Louann, congrats on being cancer free. How does the onc arrive at that conclusion? Tests? Thanks for your prayers. In the past I hadn't been much of a fighter, but 'times, they are a=changing!' I'm try to arm myself now with as much information and good actions as possible. I'm finding already that people in this community are so knowledgeable and sharing with info the docs don't tell me. Louann, keep up the good work.
Lynn

lcarper2
Posts: 638
Joined: Dec 2009

they do C scans and if there is no cancer in any other organ than they say you are cancer free
plus blood work is done and they look at your numbers and mine has ran normal since surgery

AnneCan
Posts: 3692
Joined: Oct 2009

Welcome to this board; I hope you find it as helpful as I have.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Welcome to the most awesome group of people you could ever communicate with. I'm sorry for your dx but glad that you found out about this site.
Blessings,
Joanne

mamalala
Posts: 25
Joined: Jan 2010

Thanks for your welcome, Joanne. Even in this short span of time since I've joined, I can see how awesome a group it is. Best wishes for a good weekend, Lynn

mamalala
Posts: 25
Joined: Jan 2010

Anne, thank you for your welcome. I already have found much help. Hope I can offer the same at times.
Lynn

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Just wanted to say HI and welcome to the board. Lots of informtion on here. You mention "small lesions on the liver", did the doc say exactly what this was? Other than that, sounds like a good report. Take care -- Tina

mamalala
Posts: 25
Joined: Jan 2010

Hi, Tina. Thanks for your response & welcome. All the onc said was that he was no concerned; I guess I need to ask for further explanation, huh? Of course, when the word 'liver' pops up on the test results, I am prone to over-react unless given details. The report read, 'low-attenuation liver lesions, stable since the last report.' Thanks, Lynn

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Stable is good, in fact those are "golden words" around here. Our oncologist and his PA always give us everything in English. If you don't understand something, tell the doc that you are not understanding something and to tell you again in English that way you are not left guessing and looking words up. Take care - Tina

mamalala
Posts: 25
Joined: Jan 2010

I'm collecting words for my office wall. The first plaque says, 'it is what it is.' Now I'll print up the word STABLE! Thanks, Tina. Lynn

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Lynn.

Welcome to the board! I know you feel confused and worried right now. I'm glad you've found our board, because support is so essential in this situation. Jump in with any remarks, questions, or whatever.

*hugs*
Gail

mamalala
Posts: 25
Joined: Jan 2010

Gail, I accept your hugs enthusiastically! Hugs back at you. Lynn

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Welcome and sorry you had to go out and find us! Glad you did find us though!

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