Newbie Here - It's official

BillO60

I'd posted in the Anal Cancer board last week but can't seem to find it. Since my primary doctor refered me to a "colorectal" specialist I figured I might have been posting in the wrong area anyway. 

After a colonoscopy on 2/26 with the discovery of a mass, subsequent biopsy, today they made it official.  Malignancy - adenocarcinoma high grade. So, I had a CT scan today and have a followup G.I. consult and a surgical consult on Monday.  Then a lower EUS on Tuesday morning that will hopefully allow them to stage it. One thing I do appreciate is the speed things are moving at.

Had a CEA done that my primary said was low.  While that was good news if I recall correctly a CEA is not the best predictor.  My wife passed away 15 years ago after battling colon cancer for 5 years and finally going on Hospice during her last year.  Her CEA's would always be low once she finished a round of chemo but they would then jump back up a few weeks later. 

I know surgery and chemo are in my foreseeable future but until all the tests are in (including the ultrasound on Tuesday) I won't know which one will come first or how extensive the surgery or treatements will be.

To top things off I was informed that the permenant position I expected to be hired into had been withdrawn and I'll be out of work as of Friday the 13th.

But the hardest part of today was telling my daugher. She's 36 and only 6 years younger than her mom was when she was first diagnosed with colon cancer.  I really didn't want to tell her but could not justify not telling her. She cried and had to get off the phone for about 10 minutes but when she came back on she handled it pretty well.

I'm not really sure what to share, never having been a real sharing type but it feels even more difficult to not talk about it. So, I appreciate that this place exists and gives me some place to vent and maybe get some of my thoughts a bit more ordered about what's going on.

I wish all of you well.

Bill

Annabelle41415

Sorry

First of all, I'm sorry that you had to join our group, but secondly, you have joined one of the best groups on here.  We can answer a lot of your questions that you might have.  Once they stage it and you talk to your oncologist you will have more information to give us and your daughter.  Telling her was a good thing as if her mother and now you have had CRC she needs to be checked soon as well.  Going through this can be tough, but we are here to listen and answer your concerns.  Please see if there is anyone to go with you to appointments as 4 ears are better than two and you will hear things but your mind will wander while listening and not hear everything you should.  Also take notes and write questions down before hand so you don't forget when you get into the doctor's office.  I'm sorry to hear about your job as that has to be another big blow to what you are already experiencing.  Please keep us informed as to what you find out so we can help you further.  Wishing you the best for your upcoming tests.

Kim

skeets1961

Bill, i'm so sorry for your

Bill, i'm so sorry for your diagnosis.  Its like a punch in the gut, especially when you've already been through it with your wife.  It seems so unfair.  My husband was diagnosed with stage 4 colon cancer in October.  i have learned many things from just being on board since December, everyone is so kind and helpful.    I hope you get the information you need to proceed and strength to carry forward.  I also agree how hard it was to tell our kids.  I pray that i never have to do anything like that again.  It was heartbreaking.

Trubrit

Welcome to the forum

Its always with sadness that we welcome yet another person to our sorry, but happy group. Now you've got the Cancer though, you have made a great move in coming here. There is lots of support and love and happy things as well as sad. Lots of questions answered, advice given, telling off, dancing during happy times. A bit of everything. 

It seems terribly unfair that your wife passed away from this awful disease, and now you are struggling with it. I pray for you and your daughter, that all will go well. Be strong and be a survivor. 

I am so sorry that you lost your job. I know the fear of losing a job, having been there, and hope that something comes up for you. 

Visit often and jump right in. 

Sue - Trubrit

Yolllmbs

Welcome

I'm sorry you had to find your way here. Take a look around. You've joined a group filled with love, prayers and information. There is plenty of space to yell, scream or laugh. It's a room filled with knowledge and support. I'm hoping you find as much strength and support as I have.  

Prayers and cyber hugs,

Yolanda

NewHere

Welcome

Sorry your have to be here, but welcome to the boards.  I am one month, to the day just about, of you.  My pathology report from the colonoscopy came back 1/26.  Had surgery mid-Feb (confirmed Stage III C Colon Cancer), having a port put in next week and chemo starting the week after.  I am also not a sharing type, but having this come up has made me a bit more talkative.

The people here have been wonderful.  The knowledge, compassion, experience, tips and yes, evena bit humor, has made this journey easier and feeling less alone.  Even with friends and family support, there is a different feeling once the diagnosis hits.  Aniy question or concern should be asked here, I have found it very helpful.

Good luck with it all.

 

 

lilacbrroller

NewHere said:

Welcome

Sorry your have to be here, but welcome to the boards.  I am one month, to the day just about, of you.  My pathology report from the colonoscopy came back 1/26.  Had surgery mid-Feb (confirmed Stage III C Colon Cancer), having a port put in next week and chemo starting the week after.  I am also not a sharing type, but having this come up has made me a bit more talkative.

The people here have been wonderful.  The knowledge, compassion, experience, tips and yes, evena bit humor, has made this journey easier and feeling less alone.  Even with friends and family support, there is a different feeling once the diagnosis hits.  Aniy question or concern should be asked here, I have found it very helpful.

Good luck with it all.

 

 

Welcome!

Hi - welcome to this forum! Bummer you have to be here, and so sorry about your wife as well.  Has your daughter started getting colonoscopies yet? 

Good luck with all your tests.

all the best to you

Karin

TheLadySkye

Welcome, Bill.  I'm sorry

Welcome, Bill.  I'm sorry that you find yourself in the position of needing this support, but now that you're here, please know that you're surrounded by a wonderful, knowledgable group of people who treats each other like family.  Don't be shy, and feel free to ask anything you like.  Chances are, someone (or several someones) have been through it and are always willing to share their thoughts and experiences.

Thinking of you and praying for you!

Easyflip

That's rough

Bill with a layoff to boot. Having cancer you may qualify for social security disability, check into it. True staging will come once they remove the tumor and send it to the lab. If you're a stage I or II you'll be fine as it was caught early. Stage III and IV are still curable but a little more complicated. You're in the "what if" worry time but try not to stress until you know your exact stage. Sorry about your wife and yes, I would tell your daughter to get scoped. Good luck and best wishes. The people on this board are smart, supportive and they've been a big help to me. Imagine, battling their own disease and yet a strong desire to help others. It's heartwarming and restores the faith. And we with cancer could all use a little bit of that : )

Easyflip/Richard

Lovekitties

Welcome

You are right that CEA is not always a good indicator for everyone.  Mine wasn't.

Having been thru this with your wife, I am sure you have a better understanding than most newbies who find their way here.

No question is dumb, no physical or medical question is out of bounds.  This disease makes it impossible to be offended over things having to do with bodily functions.

Please stay in touch and we will try to help you along.  It would be helpful if you could share what part of the country you are in.  We have memebers all across the USA and other parts of the world.  Knowing may let someone offer specific help in your location.

I know others have said it, but I can't stress enough...please have your daughter get a colonoscopy soon and regularly after that.  Some doctors and insurance companies don't beleive in the genetic factor, but whatever the cost, early detection is key to best outcome.

Wishing you best outcome.

Marie who loves kitties

Fight for my love

It's very tough. Until now I

It's very tough. Until now I haven't told my parents about my husband's cancer and it has been 7 years. Hope every step of your treatments goes well and I will pray for you.

BillO60

Lovekitties said:

Welcome

You are right that CEA is not always a good indicator for everyone.  Mine wasn't.

Having been thru this with your wife, I am sure you have a better understanding than most newbies who find their way here.

No question is dumb, no physical or medical question is out of bounds.  This disease makes it impossible to be offended over things having to do with bodily functions.

Please stay in touch and we will try to help you along.  It would be helpful if you could share what part of the country you are in.  We have memebers all across the USA and other parts of the world.  Knowing may let someone offer specific help in your location.

I know others have said it, but I can't stress enough...please have your daughter get a colonoscopy soon and regularly after that.  Some doctors and insurance companies don't beleive in the genetic factor, but whatever the cost, early detection is key to best outcome.

Wishing you best outcome.

Marie who loves kitties

Daughter and colonoscopy

Lovekitties - First, thank you for the welcome.  My daughter grew up with a mother who was an R.N. and I was a medic and EMT in the Air Force and worked E.R. and med-surg while in the military and then worked as an LPN for about 10 years after I was discharged. So, my daughter grew up with two people who worked in healthcare who weren't shy about discussing healthcare issues with her. She's had two colonoscopy's in the past 5 years and lets any doctor she see's know about her family history.

I'm in the Los Angeles area and I'm being treated at the V.A. Medical Center here.  The V.A. has gotten alot of bad press lately, some of it deserved, but I have a primary doctor here that is as good or better than any I've ever had and they have been moving quickly to get me through the initial diagnostic tests in preparation for surgery / chemo.

I am lucky because of my healthcare background (and I do not claim to be an expert by any means) and being an avid reader and researcher I might have a better handle on the terminology than most and I research what I don't understand (or when I think the doctors and clinicians are blowing smoke). 

I'm a cat lover as well. It's one thing I miss about where I live - they don't allow pets.

Best wishes and thank you.

Bill

 

 

BillO60

Easyflip said:

That's rough

Bill with a layoff to boot. Having cancer you may qualify for social security disability, check into it. True staging will come once they remove the tumor and send it to the lab. If you're a stage I or II you'll be fine as it was caught early. Stage III and IV are still curable but a little more complicated. You're in the "what if" worry time but try not to stress until you know your exact stage. Sorry about your wife and yes, I would tell your daughter to get scoped. Good luck and best wishes. The people on this board are smart, supportive and they've been a big help to me. Imagine, battling their own disease and yet a strong desire to help others. It's heartwarming and restores the faith. And we with cancer could all use a little bit of that : )

Easyflip/Richard

What.. me worry?

Okay, that's a quote from Mad Magazine. You're right about this being in the what-if stage but I tend not to worry about things I can't control since I have enough things I do know about that I can get stressed over. Thanks for the note about social security disability.  My wife was on it but it took a few months and (if my memory hasn't totally failed me) it wasn't approved until she'd reached a certain stage.  But I'll need to check in again. I'm at that age where it's become more difficult to get work but I still need to work to pay bills and eat and loan my daughter money.

Thanks for the greeting and I wish you well.

Bill

BillO60

Annabelle41415 said:

Sorry

First of all, I'm sorry that you had to join our group, but secondly, you have joined one of the best groups on here.  We can answer a lot of your questions that you might have.  Once they stage it and you talk to your oncologist you will have more information to give us and your daughter.  Telling her was a good thing as if her mother and now you have had CRC she needs to be checked soon as well.  Going through this can be tough, but we are here to listen and answer your concerns.  Please see if there is anyone to go with you to appointments as 4 ears are better than two and you will hear things but your mind will wander while listening and not hear everything you should.  Also take notes and write questions down before hand so you don't forget when you get into the doctor's office.  I'm sorry to hear about your job as that has to be another big blow to what you are already experiencing.  Please keep us informed as to what you find out so we can help you further.  Wishing you the best for your upcoming tests.

Kim

Hi Kim

Kim - Thank you for the welcome and excellent advice.  When my wife was ill I was the other set of ears and the one who tended to push on getting answers. Both my wife and I had backgrounds in healthcare but even with that there was still alot of information being given (or in some cases not being given) that requires time and energy to filter through or to go back and get clarification on. I also have a smartphone with a recording app that I carry with me to make notes about things while they are still fresh in my mind. I've found that using that is generally much easier to understand and sometimes is useful in helping me to decipher any of my illegible paper notes. 

Best wishes and thank you.

Bill 

BillO60

skeets1961 said:

Bill, i'm so sorry for your

Bill, i'm so sorry for your diagnosis.  Its like a punch in the gut, especially when you've already been through it with your wife.  It seems so unfair.  My husband was diagnosed with stage 4 colon cancer in October.  i have learned many things from just being on board since December, everyone is so kind and helpful.    I hope you get the information you need to proceed and strength to carry forward.  I also agree how hard it was to tell our kids.  I pray that i never have to do anything like that again.  It was heartbreaking.

Sometimes it's emotionally harder on the family

Hi Skeets - My attitude may change as I begin moving into surgery / treatment but at this point I'm okay. My late wife would agree that my attitude is always good just as long as I get to whine alot.  I think that being the caregiver you have been given one of the most demanding, stressful, and emotionally draining jobs on the planet and you have my sincere respect. Hopefully you are taking care of yourself and have the support you need. 

Thank you for the kind welcome and I wish you and your husband well.

Bill 

BillO60

Trubrit said:

Welcome to the forum

Its always with sadness that we welcome yet another person to our sorry, but happy group. Now you've got the Cancer though, you have made a great move in coming here. There is lots of support and love and happy things as well as sad. Lots of questions answered, advice given, telling off, dancing during happy times. A bit of everything. 

It seems terribly unfair that your wife passed away from this awful disease, and now you are struggling with it. I pray for you and your daughter, that all will go well. Be strong and be a survivor. 

I am so sorry that you lost your job. I know the fear of losing a job, having been there, and hope that something comes up for you. 

Visit often and jump right in. 

Sue - Trubrit

Thank You

Hi Sue - Thank you. I have a bit of an odd sense of humor and when I read the first sentence in your note, a Groucho Marx quote came to mind that went "I don't care to belong to any club that will have me as a member."  However, I understand what you're saying and, while I really wish this was a club with no members I am grateful there is a place for people like me to join.

Best wishes,

Bill

BillO60

Yolllmbs said:

Welcome

I'm sorry you had to find your way here. Take a look around. You've joined a group filled with love, prayers and information. There is plenty of space to yell, scream or laugh. It's a room filled with knowledge and support. I'm hoping you find as much strength and support as I have.  

Prayers and cyber hugs,

Yolanda

Thank you for the Welcome

Yolanda - Thank you. I'm planning on picking everyone's brains once things start happening. As I'd mentioned in an earlier post, I wish this was a club with no members but I'm glad it exists for people like me to visit.

Best wishes,

Bill

BillO60

NewHere said:

Welcome

Sorry your have to be here, but welcome to the boards.  I am one month, to the day just about, of you.  My pathology report from the colonoscopy came back 1/26.  Had surgery mid-Feb (confirmed Stage III C Colon Cancer), having a port put in next week and chemo starting the week after.  I am also not a sharing type, but having this come up has made me a bit more talkative.

The people here have been wonderful.  The knowledge, compassion, experience, tips and yes, evena bit humor, has made this journey easier and feeling less alone.  Even with friends and family support, there is a different feeling once the diagnosis hits.  Aniy question or concern should be asked here, I have found it very helpful.

Good luck with it all.

 

 

Thank you NewHere

Hi NewHere and thank you for the welcome.  I hope you are doing well and prognosis is positive.  There is definitely a different feeling.  I was in healthcare and worked with a variety of patients, including oncology patiens. My wife went through it and I was her primary caregiver until she went on hospice. I could empathize but I could never really know what it was like. So, having others who've been there, done that is going to help take away some of the unknowns and that is always a good thing.  

Best wishes,

Bill

BillO60

lilacbrroller said:

Welcome!

Hi - welcome to this forum! Bummer you have to be here, and so sorry about your wife as well.  Has your daughter started getting colonoscopies yet? 

Good luck with all your tests.

all the best to you

Karin

Thank you for the Welcome

Hi Karin - Thanks for the luck. I can probably use all of the Good type I can get.  My daughter is 36 and has told every doctor she's been to that there is a family history of colon cancer. She's had 2 colonoscopy's in the past 5 years and both are clean.

Best wishes,

Bill

BillO60

TheLadySkye said:

Welcome, Bill.  I'm sorry

Welcome, Bill.  I'm sorry that you find yourself in the position of needing this support, but now that you're here, please know that you're surrounded by a wonderful, knowledgable group of people who treats each other like family.  Don't be shy, and feel free to ask anything you like.  Chances are, someone (or several someones) have been through it and are always willing to share their thoughts and experiences.

Thinking of you and praying for you!

Thank you for the Welcome

Hi The LadySkye - (unique screenname.. I like it). I have been impressed with the warm welcome and response from the group for a newbie. I'm planning on taking everyone's offer of knowledge sharing (got to love the information age).  Hopefully I'll be able to intelligently contribute from time to time as well once things progress a bit further.

 

Best wishes

Bill

NewHere

BillO60 said:

Thank you NewHere

Hi NewHere and thank you for the welcome.  I hope you are doing well and prognosis is positive.  There is definitely a different feeling.  I was in healthcare and worked with a variety of patients, including oncology patiens. My wife went through it and I was her primary caregiver until she went on hospice. I could empathize but I could never really know what it was like. So, having others who've been there, done that is going to help take away some of the unknowns and that is always a good thing.  

Best wishes,

Bill

No Worries

I read your others posts in addition to your reply to me.

First, thank you for your service.

Second, as I was advised, and what I believe, the sense of humor is important.   Anyone who quotes Groucho (that line went through my head immediately also when I joined) and the sage Alfred E. Neuman, is okay in my book. Great minds    I was told to put together a list of good silly movies.  Someone actually mentioned Monty Python and Airplane! as silly - no, indeed they are high art. 

Third, your health care background should help.   My health care background has has helpd me a bit and you have a far greater background by far.  I am a volunteer EMT.   I can still respond to 911 calls to crawl into car wrecks if my white blood count drops when I start chemo, but not for calls that would put me near people with the sniffles 

Regarding empathy - I do my absolute best with patients to ease their minds on my calls  and can usually find something to make a connection.  My ability to make a connection with cancer patients became different when I heard the words applied to me.  An instant on switch.  

Sorry once again for all you had to go through and are going through now.  But you really did find a good bunch of people here. Just ask away, or chat, it really does help.