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Karen63
Posts: 25
Joined: May 2012

Hi. I am newly diagnosed. Found out in surgery on April 12. Long story (aren't they all, though). Following a black stool, had clear colonoscopy Dec. 2010 followed by camera study of small bowel (also clear). Then, after a year of problems (which they assumed was IBS) I presented in the ER with a hemoglobin of 5 this March. That prompted another camera study in which the camera got stuck, but did present pictures of ulcers in my small intestine right where it meets the colon. Everyone said "Crohn's" and I had surgery to remove the camera. I woke up with the DX of colon cancer. Everyone shocked. I am just now beginning to emerge from the emotional roller coaster of "how could this have been missed" etc. I am stage 4 with cancerous spots on my liver. I had 1/3 of my colon removed and will have liver surgery next week to hopefully remove the cancerous areas of my liver.

I am so new to this. Any sage advice? I think I am still in shock. I asked for a psych consult in the hospital and the psych that came was very nice. I was referred to a psych who specializes in cancer patients, but had one appointment in which she asked for background info (do "I have access to firearms" - "do I take illicit drugs" questions) and then set me up for an appointment in one month!). So - you guys will be my psych support!

I have read some of the posts in the discussion group and find that I no longer feel so alone. You are already helping me! I appreciate any comments as I begin this journey.

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

oh Karen....welcome welcome and as we always say....sorry to have to meet this way.

The first days are so hard....the shock the disbelief the fury the confusion....Karen just reading your post it sounds to me like you are doing pretty darned well. Good sense of humour showing there girl with you psych story....hahah I had a social worker like that who yelled at me because I was not crying enough??????

We are here and ready to help...I am colon to liver stage IV and surviving for 8 years...you ARE not alone....

The journey is long and you are are getting started ....surgery for the liver mets so soon...is a good thing. Let's talk later about the liver resection....but for now welcome

breathe....eats a ton of protein to help heal the colon surgery....do you like boiled eggs?

with the very best love

maggie

Karen63
Posts: 25
Joined: May 2012

Thank you all so much for your responses. All very helpful and affirming! I will come to this site daily and read often. I can tell that it already is helping me with support and information. I didn't know about eating more protein - will do. My husband usually comes along to my appointments and also my son too if he can get away. It really helps. My colon surgeon has been wonderful and very responsive so I feel I can always call him. His office and the whole surgical team for oncology have been great so far. I am very encouraged to see that you all seem to retain a sense of humor and are such fighters. Something for me to aspire to!

I have liver surgery next Tuesday, May 22 and then will start chemo 4-6 after. I suppose it is the usual drugs - Folfox? Is that right? I haven't read up on that extensively yet, trying to get the liver surgery behind me first. The oncologist encouraged me to read cancer.org and to not look at anything else on-line. I am happy to comply with that. So much information/mis-information and too overwhelming. Thank you all for your best wishes and suggestions. I know that I will get to know you all over time.

I really appreciate all of your support!

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Karen you are doing so well.....so so well. Yes the protein of course contains all the amino acid building blocks that you need to heal. A wee bit of cheese, shakes, eggs if you are eating those things all good.
It may be folfox but again I think just getting the liver behind you is the next step. May 22 is soooo soon .....you are really movin there girl. Sounds like you have a good team and lots of family support too.

It will be all right in the end and if it is not all right, then it's not the end"

ask away on liver surgery when you are ready...

with love and support

mags

Karen63
Posts: 25
Joined: May 2012

Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

-Karen

Karen63
Posts: 25
Joined: May 2012

Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

-Karen

Karen63
Posts: 25
Joined: May 2012

Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

-Karen

janderson1964
Posts: 2215
Joined: Oct 2011

FOLFOX is what they gave me after my first liver surgery. Pretty standard stuff. Glad to hear about your liver surgery next week. You will be fine. It is a very common operation these days. I will keep you in my prayers.

Jeff

Jaylo969
Posts: 827
Joined: Jan 2010

Hi Karen. I am glad that you found this site early on in your journey. I was a year out from surgery before happening upon this wonderful group of folks.

I understand your shock and emotional roller coaster. I too was one that fell through the cracks. I had problems, went for a colonoscopy, and was declared ok with just 3 tiny polyps. One year later I had a malignant tumor of the cecum as large as my surgeons fist and one smaller benign tumor at the ileocecal valve.My surgeon told me that tumor had been growing in me for a long, long time. Long and short, the gastro didn't do a complete colonoscopy and that could have cost me my life.

I think having the psych will be helpful for you. I am sure I needed some help( and still do)but it was never offered. Support groups are very helpful too and we welcome you.

Best wishes,
-Pat

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

I am also newly diagnosed 4/11/2012 after a colonoscopy, no family history was having blood in stool and small stools and urgency, Started radiation and chemo 5FU 24/7 and radiation 5 days a week for 5 weeks. Surgery will be scheduled about 3 weeks after completion of treatment, not sure when they will cut liver tumor out. Then 24 weeks of chemo after. When do you start chemo? I am scared everyday, and cry everyday. I have 4 kids, 2 married and twins that are 14 - I want to see them grow up.
Good luck on your treatment,
Sandy

Karen63
Posts: 25
Joined: May 2012

Sandy: you are just abut where I am on DX. It is still such a roller coaster, isn't it! Some days I just can't believe ths has happened. They have me slated to begin chemo 4-6 weeks after my liver surgery. The surgeon gave me an option: 3 months of chemo and then liver surgery - a month off and another 3 months of chemo or (the option we selected) liver surgery first, and then 6 months of chemo. So here we go, Sandy. Let's keep up with each other! -Karen

Karen63
Posts: 25
Joined: May 2012

Sandy: you are just abut where I am on DX. It is still such a roller coaster, isn't it! Some days I just can't believe ths has happened. They have me slated to begin chemo 4-6 weeks after my liver surgery. The surgeon gave me an option: 3 months of chemo and then liver surgery - a month off and another 3 months of chemo or (the option we selected) liver surgery first, and then 6 months of chemo. So here we go, Sandy. Let's keep up with each other! -Karen

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

glad you found this board but sorry you had to...

I'm caregiver to my husband (stage IV with mets to liver) and I normally I say that we are also new to this journey. But I just realized that meanwhile we are 7 months after diagnosis and 6 after surgery and since that time there are so many new folks here. *sigh* So sorry for everybody who has to get onto this roller coaster.

But once more WELCOME! Here you will find so much knowledge and support, information and comfort, a place to vent if neccessary and sometimes (believe it or not) even a place to laugh and smile. Take only one step at a time and don't forget breathing. (ok, I'm still struggeling with this advice but it relly helps)

Greetings from Germany
Petra

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Very glad you found this site---it makes the whole journey a little less lonely as no one gets it like someone else who is going through it.
I was thrown into a tailspin when I was first diagnosed with Stage 3 rectal cancer. During one long hospital stay, I was asked what, if any religion was I, so that a member from that denomination could come visit.
I answered "All Religions."
The medical stuff was being addressed, but I wanted someone to help me process/make sense of all the existential questions I had. (Add some pain meds to that and you REALLY get a conversation going!)
I listened, talked, observed, cussed, cried, zoned.....and cried some more. Then I just started putting one foot in front of the other to complete my treatments. That, and the passage of time was part of the answer for me.
Again, welcome~
TommyCat

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

So sorry you have the diagnosis, but glad the camera got stuck and they at last found it.

While we here try to be helpful, you may also find that your local chapter of the American Cancer Society may have have a support group in your area.

Are you being treated at a major hospital? If you have any reservations regarding your medical team or the treatment plan, you may want to consider a second opinion. For now it seems like another surgery is in your future and the removal of the tumors is a good thing.

When dealing with any doc appointments, it is helpful to either have someone attend with you or for you to take notes. It is not always easy to remember everything which is discussed, particularly when trying to understand how the heck you got to this point in the first place. Also find out how best to contact your doc with any follow-up questions you have. Some prefer phone calls, but are hard to reach. Email is a good option if they will do it.

Feel free to bring any questions you have here. While we may not have definate answers, we can help steer you in the right direction based on our collective experience.

Glad you found us. Please keep in touch and let us know how you are doing.

Hugs,

Marie who loves kitties

Karen63
Posts: 25
Joined: May 2012

Marie: I neglected to answer your question about whether I am betng treated at a major hospital. The answer - yes. A university research hospital. In fact, I got to be the subject of their tumor board meeting a few weeks ago in which they collectively devised a plan for me. That brought me in early for my PET scan and after a review of that the following week with the onco., I met with the liver surgeon. The PET showed the liver spots (which we already knew about from my colon surgery - already biopsed), but nowhere else except a pesky spot of "something" in my sigmoid colon. I will need a colonoscopy to check on that when my colon is healed enough to investigate (here is where I say - but do I trust the colonoscopy?) and the liver surgeon is going to "take a look" when he is doing my liver surgery. I am not sure what that means and frankly, I don't think I want to know :). Thanks again to everyone! -Karen

Karen63
Posts: 25
Joined: May 2012

Marie: I neglected to answer your question about whether I am betng treated at a major hospital. The answer - yes. A university research hospital. In fact, I got to be the subject of their tumor board meeting a few weeks ago in which they collectively devised a plan for me. That brought me in early for my PET scan and after a review of that the following week with the onco., I met with the liver surgeon. The PET showed the liver spots (which we already knew about from my colon surgery - already biopsed), but nowhere else except a pesky spot of "something" in my sigmoid colon. I will need a colonoscopy to check on that when my colon is healed enough to investigate (here is where I say - but do I trust the colonoscopy?) and the liver surgeon is going to "take a look" when he is doing my liver surgery. I am not sure what that means and frankly, I don't think I want to know :). Thanks again to everyone! -Karen

Karen63
Posts: 25
Joined: May 2012

Marie: I neglected to answer your question about whether I am betng treated at a major hospital. The answer - yes. A university research hospital. In fact, I got to be the subject of their tumor board meeting a few weeks ago in which they collectively devised a plan for me. That brought me in early for my PET scan and after a review of that the following week with the onco., I met with the liver surgeon. The PET showed the liver spots (which we already knew about from my colon surgery - already biopsed), but nowhere else except a pesky spot of "something" in my sigmoid colon. I will need a colonoscopy to check on that when my colon is healed enough to investigate (here is where I say - but do I trust the colonoscopy?) and the liver surgeon is going to "take a look" when he is doing my liver surgery. I am not sure what that means and frankly, I don't think I want to know :). Thanks again to everyone! -Karen

Karen63
Posts: 25
Joined: May 2012

Marie: I neglected to answer your question about whether I am betng treated at a major hospital. The answer - yes. A university research hospital. In fact, I got to be the subject of their tumor board meeting a few weeks ago in which they collectively devised a plan for me. That brought me in early for my PET scan and after a review of that the following week with the onco., I met with the liver surgeon. The PET showed the liver spots (which we already knew about from my colon surgery - already biopsed), but nowhere else except a pesky spot of "something" in my sigmoid colon. I will need a colonoscopy to check on that when my colon is healed enough to investigate (here is where I say - but do I trust the colonoscopy?) and the liver surgeon is going to "take a look" when he is doing my liver surgery. I am not sure what that means and frankly, I don't think I want to know :). Thanks again to everyone! -Karen

Karen63
Posts: 25
Joined: May 2012

Marie: I neglected to answer your question about whether I am betng treated at a major hospital. The answer - yes. A university research hospital. In fact, I got to be the subject of their tumor board meeting a few weeks ago in which they collectively devised a plan for me. That brought me in early for my PET scan and after a review of that the following week with the onco., I met with the liver surgeon. The PET showed the liver spots (which we already knew about from my colon surgery - already biopsed), but nowhere else except a pesky spot of "something" in my sigmoid colon. I will need a colonoscopy to check on that when my colon is healed enough to investigate (here is where I say - but do I trust the colonoscopy?) and the liver surgeon is going to "take a look" when he is doing my liver surgery. I am not sure what that means and frankly, I don't think I want to know :). Thanks again to everyone! -Karen

janderson1964
Posts: 2215
Joined: Oct 2011

Welcome to the forum. I am glad you found it early on. I didnt find it until 6 months ago. I was in the same position as you over 6 years ago. It seems lik it was yesterday. I have been through 3 liver surgeries. I will be happy to help any way i can.

Jeff

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

...the club nobody wants to join. But we're here and friends on this board care -- a lot. I'm where you were a couple of months ago and I've found lots of support and information here. It's a good place. There's some people that have been here a long time that are very giving with their time, and plenty of hugs. I haven't consulted with a psych, but when I met with the surgeon that installed my port, he said "you seem so calm." Of course inside I was dying, as was my wife, but all I said was "I don't know what else to do." Stage IV is a shock, but I'm taking it as it comes. I think I'm finally beyond the "I keep thinking I'm going to wake up" phase. Hang in there and don't be afraid to ask any questions to this group. I don't have many answers yet, but a lot of people here do and they'll help you. One thing I've learned is that nobody is the same. And none of us have an expiration date!

Hugs,

Dan

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

So sorry about your diagnosis it is so shocking when were told we have cancer and even worse when in stage 4. This group here is great because we learn so much but even more so we become connected through our crazy cancer ride. Everybody seems to react different but then again a lot is very similiar. There are some people that seem to match exactly up to what your going through which is good because you can really relate. This is a great place for those days when you need to vent because we really understand what your going through. Sometimes its hard to vent to family because I don't want to put more burden on them so i will come here. Ill be praying hard for you. Jeff

Luckygirl2
Posts: 308
Joined: Mar 2012

You will find lots of encouragement and tons of wisdom on this site and even some humor! Keep laughter in your life. I know you are scared. As the others, I'm sorry for the reason you had to find this site but it will be a great inspiration to you. One of my favorite posts is every Friday I look forward to the "Hello mates, its' Friday..." We are from all over the world. I wish you the best on your journey and don't be afraid to ask questions. I was several months in my journey before I stumbled upon this wonderful site and all the wonderful people who post. Remember to laugh, I found myself laughing at myself quite often..even now..like when I run into doors, on my 5th trip in a row to the bathroom, stumping my toe because I can't feel my toe very well due to my neuropathy.. of course, I had a small pity party for myself last night after my 2d trip to the bathroom! which makes me laugh now! You do have a journey too make but you have many here who will make that journey with you.

sending a smile your way
Debbie

Annabelle41415's picture
Annabelle41415
Posts: 6550
Joined: Feb 2009

This is terrible what you have been through and going through all this testing and then to find this diagnosis. You were proactive and I'm surprised that with technology something wasn't picked up sooner, but you can get through this and there are many people on this board that can prove it. You will be coming to many tests and doctors and you will feel like this is so overwhelhming but we can answer a lot of questions that you might have. Make sure you take someone with you to the visits with your doctor. A great pair of extra ears is so important. Good luck with your upcoming tests and welcome to this board. We are a great family and share many things.

Kim

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Welcome Karen. So sorry that you have been through so much. But this is the place to be.
I too have had a colon resection, and 2 liver resections. First dx 2004. I am still here and doing well. There are stages of emotions, you will get through them. We will help, we will be here to listen and celebrate your successes.
Stay strong, prayers coming your way.
Hugs,
Judy

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Hello Karen,

When I think back to how scared I was when I was first diagnosed (Dec 2, 2008) I can't believe how far I have come. It is so hard to deal with the news at first, but in time you will find a new normal. Everyone always talks about how hard it is on your body to go through this, but they never talk about emotionally what a roller coaster it is. I am glad you decided to see a counselor, I think most people could use that when they get this kind of news. I hope that you continue to come here whenever you need support or to rant. We have all been there, you are not alone.

shincy
Posts: 9
Joined: Mar 2012

Sorry to hear you had to join our group. My husband has stage 4 colon cancer so I know how scared you are. If I have to give you a piece
Of ad ice I would say it would be learn all you can about your cancer. Because with knowledge comes power to handle what you will go through. This is a great plan e to start because a lot of what you need to know is here. Please keep us informed on how you are doing. Lots of prayers coming your wy. God Bless. SHEILA

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

I'm wondering have you had a pet scan, and/or a CT scan? Have they told you, your CEA markers? This is all good information to have. I would think the liver surgeon already did a CT and he just isn't going in fir a look without it.

I had my colorectal surgery, 3 months of chemo, then one month off of avastin, then 60%liver resection, then healing and back on chemo for 3 months.

I have been NED (no evidence if decades for three years) but my CEA is going up again. CEA is our cancer markers. accurate for some and not for others.

I'm glad you found us.

Karen63
Posts: 25
Joined: May 2012

Nana: yes. I have had CT and PET scans. I also had a CEA - which showed 7. The oncologist said that the CEA's are not necessarily accurate, but just another piece of the puzzle they try to use. The PET showed 2 definite areas on my liver (which were biopsied by the colon surgeon during colon surgery and are colon cancer areas) and another spot which the liver surgeon thinks may be a lymph node - we will find out in a couple of days now. You and others give me much encouragement - that you are living with colon cancer, but are not totally consumed by it. You still have lives! thank you so much. -Karen

steved
Posts: 835
Joined: Apr 2004

Sorry to find you here but in truth it sounds like you are in a position where a board like this can be of great value to you. I too have stage 4 cancer and in fact am also a psychiatrist in the UK. I am well down this journey having been diagnosed 8 years back and can understand the mental journey you are beginning to get your head around. In truth professionals can be helpful to some going through this but really what you need around you is people who you can talk to, off load to and can understand your situation which this board is great for. You also need time as it is all very early and new.

Be patient. You may find that a bit down the track having a professional to talk to or even psychitric input may help but for now give yourself time to simply digest the huge change that has happened and adjust to the fact you have this diagnosis. By the sounds of your posts over the last fews days I can hear you are beginning to do that.

Be patient.
steve

Karen63
Posts: 25
Joined: May 2012

Steve: thank you. I was feeling adrift without seeing a psych until early June, but you are making me understand that it might be an advantage to settle down a bit first. I think I am beginning to understand my cancer diagnosis. I know the surgeon told me that I would need to stop thinking about the past and start moving toward the future (a great and caring surgeon) and I think I am beginning to manage that a bit. I am also beginning to laugh at some of the things that happen in life - even in context of cancer. I am beginning to get anxious about my liver surgery on Tuesday - but I guess that would be normal enough. Thank you for your support and hope you are also doing well -karen

bspangler47's picture
bspangler47
Posts: 145
Joined: Sep 2010

Hi Karen.

My name is Barbara, and i no longer colorectal stage 3. Have a total of 5 kids, first 3 are 26, 23, 18, 12 and 20.

Had my first surgery in March of 09. When I woke uo I was so pissed at the world, I didnt want to survive with they I was. I even seen drs in the hospital to speak to me but that didnt help. I would alo attended church, had people bring over food for us. friends came over to help etc. I also started to writing in a jorunal that help a great deat. There were time I would scream and yell. you are in my prayers

please keep us posted u r in my prayers

Barbara Spangler

Karen63
Posts: 25
Joined: May 2012

Thanks, Barbara. A journal is a good idea. I bought one and then couldn't make myself write. I will try again. I understand your anger, too. thanks so much - Karen

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

karen a journal can be daunting at first. How could you possibly write down all the emotions you are feeling. At one point in my cancer journey I started to write down one thing I was grateful for on the day.....no matter how crappy the day was I would record a single smile a flower anything .....it kinda gets you out of yourself just for one second.

also later it is great to record tests or meds or cea.....things you think you are going to remember but don't

you are doing well kiddo...hang in

mags

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