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When were you diagnosed and what stage were you?

gwj7
Posts: 21
Joined: Jul 2012

Also, how have things been since your diagnoses? Has is generally gotten easier or harder (or stayed the same?). Please tell me anything about your journeys so far because my family is about to start our journey with colorectal cancer. Thanks so much!

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

The first few months were hell, but then I settled and started to accept things. I had a year with multiple surgeries and multiple types of chemo. Treatments and side effects were nasty. However, I'm now fine, mostly recovered from side effects, and living a normal healthy life.

It does get easier - you can't continue to function at the level of intensity that the words "you have cancer" brings to bear. You get over the shock, and then meet people who have been through the treatments - somehow we get through. It looks endless, but we do it.

Now, I have scans every 18 months. I still have some residual issues. I had to have more surgery to repair an incisional hernia, and it feels like I've just developed another - getting checked out this week. Maybe more surgery, but in the scheme of things, life for me is excellent.

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I was diagnosed at a stage IIIb ... i did not get staged until after my surgery....when they dis the pathology on my tumor and lymph nodes. Thet removed the right side of my colon, my appendix, and 18 lymph nodes. The found signet ring cancer in the tumor as well as in 4 of the nodes. All of this happened on June 15th...it took about 4 weeks to recover from the surgery then i had a second smaller surgery to insert a port near my collar bone. I started chemo ... FOLFOX .... on July 23rd and I have my second chemo treatment scheduled for this Tuesday.

Mine has i guess been the same...I've only had one chemo treatment so far. I experienced diarrea, some vommiting, loss of appetite for about 4 days, mouth sores, and some neuropathy. I also have had a couple of headaches and just today i have developed a persistant cough. I go in for bloodwork tomorrow morning...then a second round of chemo on Tuesday.

I am looking for a specialist for my type of cancer...it is very rare and according to what i have been able to find out...resistant to the chemo. I only found outvwhat kind i had this past Tuesday ...when my dr mentioned that they were treating my cancer ss a variant of colon cancer. Red flags went up immediately and i started researching what i have.

I would suggest writing down your questions. And also ask for clarification on anything you do not understand. It was only after asking questions that i lesrned that i have signet ring adenocarcinoma...which is actually appendix csncer.

Best of luck as your family starts your journey. I am fairly new here too...this group is so wonderful about answering questions and supporting each other.

Alex

Grace14
Posts: 64
Joined: Sep 2011

I was diagnosed in 2010 stage 2A. It's getting a little easier but it's something that I think about when I go to bed and when I wake up in the morning! Not a day goes by where I don't think about it. Do I think about every minute no but it never seems to leave my mind. This has changed my life forever. It's very hard in the beginning but it does get better.

So Worried
Posts: 111
Joined: Aug 2012

Did you do chemo? Thank you.

abackhou
Posts: 77
Joined: Jan 2012

Still here 40 months later, only change since initial colon surgery is disease was stable due to chemo until 12 months ago, now the secondary cancers have now progressed to other organs. It was never mentally easy for me and my wife knowing that this disease is incurable and wondering when "my end of life" would be. But the trick is to stay mentally and physically strong that is the best way to assist your body fight this disease. These comments only apply to myself being Stage 4, I do not know what stage you are at and other CRC stages will have varied responses to treatment.

Best wishes to everyone.....Andrew

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

I agree with you Andrew...we have to very mentally tough. Praying for you. Jeff

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

Dx June 2009 cancer to colon with mets to liver. Started chemo end of June and haven't stopped since. I have had many different chemos and all kinds of side effects. Since March '12 had mets to the lungs. Tomorrow will start an 8 week chemo with pump 24/7 to attack tumors on lungs. Have to set short term goals strong support systems (we're here for you). When your body doesn't feel right don't hesitate to call you Dr. You may end up in the emergency room but if you need it don't wait. I will pray for yoy. Jeff

thxmiker's picture
thxmiker
Posts: 1283
Joined: Oct 2010

I was originally diagnosed in Sept 2007 as IIa. Appendix and Secum.

Then in 2010 as IIIb Transverse Colon, and Intestines.

Folfox, 4 stays in the hospital, and 28 days overall in the hospital. The Big C is a nightmare.

The best thing is, it is a temporary battle, and a life of change. I changed my diet, added exercise, slowed down, and changed living locations to a more positive environment. We live in the mountains with the pines. We have Elk visit once a week, skunks down the street, Javelina cross the yard a couple of times a week, and an occasional big cat.

Best Always, mike

herdizziness's picture
herdizziness
Posts: 3647
Joined: Apr 2010

Diagnosed February 6, 2010, called stage IV terminal, 4 to 6 months to live tops with chemo, no hope of surgery.
Did a lot of crying, the why me thing, and I can't believe this is happening to me thing, then started planning for death, didn't care for that period of time at all.
Did chemo, had surgery in December 2010, presently going to college full time, working part time, babysitting grandchildren, taking care of husband.
53 years old and still counting at this time.
Have not done any supplements (am on heart medications at this time but whole different non-cancer story)or changed much in diet, did contain love of hot dogs to a few a year, and bacon is still a treat I have now and again (I used to do a whole lot more)did increase chicken intake, yogurt, salmon and berries, attempting to do more veggies, not quite as successful as I'd prefer to be.
It was hard at first even thinking of chemo, it wasn't near as bad as I had imagined it, I was lucky in that aspect. Been on oxiplatinun, xeloda and avastin. Surgery was many hours, had colon resection, liver resection and ureter resection done at same time. Recovery was about 4 weeks.
I just got through climbing some mountains and the Lambert and Pothole Domes in Yosemite last month, and find myself taking my grandson on hiking trips now.
On no chemo at present since last avastin in March, I actually find being cut off from avastin (due to heart)kind of scary, kind of like having apron strings cut.
Now I live life as full as I can, leaving memories for those I will some day leave behind, and hoping to live a few more years finding joy in my children, grandchildren and their successes in life.
May your family's journey find your mother on her way to NED as soon as possible (NED is no evidence of disease).
Winter Marie

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

In May 2010 I came out of anesthesia from a colonoscopy with the doctor pointing a gun in my face and it's been there since. I'm Stage IV with mets to the liver and right lung. My first two PET scans showed so many tumors and so large that it was impossible to count them. My last scan in May showed they had shrunk to where we could count 6 of them and the largest was 1/5 of it's original size. The primary tumor in my colon is gone leaving only scarring from radiation. The one in my lung is almost completely gone.

For the first year, chemo was pretty spotty because of my WBC, but Tuesday will be my 31st consecutive treatment out of God only knows how many. The nausea and diarrhea are nowhere near as bad as they've been in the past, the fatigue and fog after treatment has grown steadily worse. Exercise helps a lot with both, however. I recently bought an exercise bike and try to do 15 minutes at 15 mph every day (increasing to 20 minutes this upcoming week.)

Attitude is a huge part of this fight. No matter how bad I feel not a day goes by that I don't say "it's a great day to be alive." When I start feeling sorry for myself, it stops when I remember that no matter how bad I think I've got it, someone else has it worse.

To be honest, cancer isn't even my major concern: I worry more about my dog than I do myself. And for the things that cancer has taken from me, I've gained things which are more important. Most important is that I've been reunited with my daughter after almost three years of estrangement.

Hooley's picture
Hooley
Posts: 156
Joined: Aug 2012

Great news. Great attitude. What treatment shrunk ur tumors. Im praying mine shrink cos it's been two years and no shrinkage but No more either!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Mine started to shrink right about week three of radiation. By time I was done on 10 Aug 2010 it had been eradicated. I shook the docs hand and thanked him for saving my ass.

Coppercent
Posts: 151
Joined: Jan 2012

I was diagnosed with stage 3 rectal cancer on Friday, July 15, 2011. I was in shock most of the weekend. On Monday night my GI doctor called me to give me the results of my CT scan and asked if I had any additional questions. I had decided on Sunday I was strong and a fighter and that I was going to stay positive and fight with all I had in me. If cancer were to take me I would go down fighting! Overall the past year I have been really lucky and it has not been that bad.

I started with 6 weeks of chemo/radiation with the chemo being Xeloda. Since Xeloda is oral it is much easier on the body to handle so these six weeks went really well. I continued to work and did my radiation treatments at the end of the work day. At this point I had not told anyone at work about the cancer except my two bosses. None of my co-workers even suspected that I had cancer and were shocked when it was announced I would be going out for three weeks to have my resection and I had already started treatment.

At the end of November I had my resection surgery and unfortunatley due to other issues found in surgery it did not go as smoothly as planned. But I had two awesome surgeons who handled things really well. I did end up with a complication and ended up going back in to have a second surgery. I have a temporary ileostomy loop but it is not as bad as you would think. It is quite managable. Actually, I am going to have it reversed this October. I had to wait until I was through with chemo for the reversal and now I am waiting for a slow time at work as not to inconvenience people. My co-workes have been great! For surgery and hospital stays I have had to miss 6 weeks of work this past year. I have had two additional surgeries but all is well now.

I started Folfox chemo in January and the first few treatments went well with little to no side effects. I would get my treatments on Wednesday mornings, be done by noon and back to work at 12:30 so I only ended up missing Wednesday mornings but I always made up the time. I ended up with an additional medical issue and was in the hospital for two weeks then back to chemo. Due to this medical issue I was switched to Xelox however one more non related cancer issue and I ended up stopping my treatments at 7 treatments. In January, as I started treatment I started to train for a 1/2 marathon. This is thanks to my Onc! I figured if I had to exercise 7 days a week I needed a goal to keep me motivated.

I went into remission in December 2011 and have remained that way to this day. My last treatment was June 5, 2012 and since then I have felt great and have been pretty much back to my old self. Well maybe a little more appreciative of the little things in life and I never put anything off until tomorrow. If I get an opportunity to do one of the items off my bucket list I don't hesitate and do it! Plus I exercise a lot more now. I used to exercise 3-4 days per week and now I exercise at least an hour every day. Something my oncologist "nagged" me to do! By the way, I love my oncologist! On our first meeting since I did not know anything about cancer I said I want everything straight and not to sugar coat anything. Well he didn't sugar coat a thing! But he said my cancer journey will be effected by my attitude and activity. He said stay positive and stay active and keep my normal life. He said through treatment I will have days I want to stay in bed but to push my self and in the end I would feel better and he was so right!

There were several rough patches. I literally almost died twice but they were just bumps in the road in my cancer journey. I remvoed all of the negative people from my life and surrounded myself with positive people. Kept cancer talk to a minumum. I have a cancer diagnois. I am not a cancer victim. I insisted my boys keep normal lives and not to change any plans for me. My youngest son is in college a couple hours away and I know it has not always been easy for him but he has kept focued.

I will add I just became a Grandma last Friday! So proud of my son and daughter-in-law! He was giving his son a bath for the first time with the nurse and I walked up behind him. I over heard the nurse say that a new baby is such a blessing. My son replied that our family has had a blessed year. He said my Mom was diagnosed with cancer and that she is now in remission. The nurse said that it must have been a hard year. My son replied, it was rough sometimes but overall not that bad. He said my Mom is strong and a fighter!

Good luck to your family as you start this journey! Cancer does not always mean death. It is just one of life's challenges!

YoVita's picture
YoVita
Posts: 589
Joined: Mar 2010

I had parts of my colon, rectum and my appendix, uterus and ovaries removed. Following recovery from surgery started my treatment. Folfox, followed by radiation and chemo, finished with Folfox. Very challenging, I experienced all the possible side effects. So the first year was very difficult. I did feel a sense of death looming over me every day for the first year. Since then, I've felt well. I deal with some permanent side effects, digestive, neuropathy. But overall, my life is fine. I have improved my diet (never bad to begin with) and I doubled my exercise efforts. One lung nodule was recently detected and I'm having that removed this week. I will deal with whatever comes.

Please take this one step at a time. Attitude does help you deal with the challenges. Things will get better. Good luck!

danker's picture
danker
Posts: 856
Joined: Apr 2012

I was dxed in December 2009 as stage 2 boarering on stage 3. Surgeon treated as if stage 3. Currently NED for last 14 months. Tere is hope for us all!!!

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Started out originally as a stager 3er. (5/10)
6 nodes positive. Had to have a perm osotmy, rectom removed.
Radiation, then 12 rounds 5fu.
Thought that was it & getting scans every 3 months then Bingo, had spread to both lungs.

Now a stage 4er, opted for 2nd opinion at MD Anderson. They set me up for more chemo and now have had surgery and all nodules removed on one of the lungs. Getting surgery done on the other lung there in about 4 weeks....stay tuned.

Hooley's picture
Hooley
Posts: 156
Joined: Aug 2012

Can I ask we're ur lung mets on inside of lung. Imhave 3 nodes in one and 1 in the other. My onc in Australia says cos their on the inside can't operate! Haven't found anything to shrink them yet!

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

I was dx in the Spring of 2009 with Stage 3 rectal cancer. Entered a clinical trail to receive extra oxalyplatin (hope I NEVER learn to spell that right!), so I did before and after chemo treatments (50 total), 30 rounds of radiation, complete hysterectomy,appendix removed, part of colon and rectum removed and a temporary ilestomy for a year.
Now, I'm doing fine.
You will hear time and again how cancer is bumpy, a roller coaster ride, a marathon not a sprint, and all those sayings are true. It is very difficult, but it's important to remember that your loved one CAN get through this.
One foot in front of the other. One step at a time....
We are ALL here for you!
Take care, and chin up. Battle on!
Tommycat

annalexandria's picture
annalexandria
Posts: 2480
Joined: Oct 2011

never given a stage, i guess because I have a funky tumor type that doesn't fit into the traditional crc categories. But at the time of dx, the cancer had spread to five lymph nodes, other parts of the colon, the small intestine and the peritoneum, so I consider myself stage 4-ish. I'd been misdiagnosed for months and was a mess by the time they finally figured out what was really going on...massively anemic, losing weight like crazy, spiking fevers every day (the primary tumor had eaten through the colon, causing peritonitis). I've been through multiple successful surgeries and two failed chemos over the last almost three years, and finally got a NED scan in March. I feel pretty good overall, and have surprised the heck out of all my doctors, none of whom thought I would still be around at this point. I know all too well this may not last, and that the scan coming up next month could change everything yet again, but I'm happy with the time I've been given. My youngest was going into kindergarten the month I was dx'd...never thought I'd be here to worry about which teacher he's getting for 3rd grade! So there is every reason to have hope. Keep us posted as you go along your journey, we're rooting for you! Ann

danker's picture
danker
Posts: 856
Joined: Apr 2012

Since you are now NED, there is no reason why you cannot live to be 90. Stats say if you make to 80 you will probably make it to 90.

I was also dxed in 2009.and was declaired NED last summer. Since i'm now 80, I assume i'll make it to 90. LOL

annalexandria's picture
annalexandria
Posts: 2480
Joined: Oct 2011

why quit while you're ahead? :)

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

Love your comment very much :)

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I'm betting that Danker makes my goal of 120!

ron50's picture
ron50
Posts: 1395
Joined: Nov 2001

At age 48 .Stage 3c into 6 of 13 lymph nodes. 48 sessions of chemo, 5fu and levamisole.
Cancer free since but not in good health due to long term side effects of treatment. Still at work at 62 and still fish when feeling up to it,Ron.

omrhill
Posts: 125
Joined: May 2012

In april of this year, stage 3. Large rectal tumor and several lymph nodes, but luver and lungs are clear. 28 treatments of radiation simultaneously with the 5 fu pump. Successful in removing tumor. LAR schedule for this thursday - wasn't nervous at all until this morning. Now i feel very out of control. But, my concern is more about the surgery itself than the cancer. My treatment thus far as been very successful with relativrly minor side effects.

(Except the side effect of late night binges on the colorectal message boards! I never get to sleep on time anymore.)

Please journey with us. We all need each other.

Robin

PatchAdams
Posts: 272
Joined: Nov 2011

Stage IIIB colon for over 3 years then a met to liver.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 499
Joined: May 2012

Diagnosed stage IV, mets to liver. Started chemoradiation 4/18/2012 for 5 weeks. Waited 4 weeks, had surgery 6/19/2012, rectal tumor, gallbladder, liver mets taken out with good margins. Recovered for 4 weeks, now on FOLFOX for 6 months, had 2nd dose last week. Stated out CEA 54 after surgery CEA 0.5, CT scan scheduled for September. I go to bed thinking about cancer, wake up thinking about cancer, and think about it all day. I don't cry everyday now but I think about dying and leaving my family a lot. It has only been 4 months but life has changed. Best wishes for your treatment.
Sandy

Helen321's picture
Helen321
Posts: 1107
Joined: May 2012

I'm 42, staged at I in Feb 2012 by a local doctor. Had first surgery, it didn't work. Went to a cancer hospital, best move I ever made because local guy was about to do another surgery with no chemo/rad and I'm now stage III so he probably would have made things worse. Even thinking the last biopsy he did of my lymphs may have been what spread it to my lymphs from the reading I've been doing about the risks of biopsies (someone on the boards mentioned that so I did some research). Or it could have been it just wasn't showing yet on the initial scan, I'll never know. What I have learned is that it is very important to get a second opinion preferably from a cancer center even if you end up getting local treatment, I can't say that enough. Ask a lot of questions when getting tests done. What is the risk with this biopsy, what are my choices, what else do you recommend I should do outside of treatment. Be proactive. My cancer was doing something called tethering and my first doctor completely missed that. My cancer center doctor used the words "misdiagnosed" several times in my initial appt. and said that tethering is very important and has to be looked at and treated differently. The other course of treatment (just having a second surgery with no chemo/rad) wouldn't have worked because it had already spread.

Was fully panicking at first (in a major way) but a few months have passed and now I'm dealing with the present mostly calmly, even have some great days. I have cancer, there are treatments that can save me, I can do things to help myself. It's all very tolerable so far. Sloan doctor is trying things in a different order based on a study done in a sister hospital in Australia so I'm doing chemo, then chemo/rad, then surgery. It's usually chemo/rad, surgery, then chemo. I'm on my third round of chemo- xeloda (for local treatment) and oxaliplatin (for regional treatment) and I do this every other week. One thing I will say, get a port put in right away if the person needs IV chemo and the person is able to. I did my first infusion through IV in the arm and that was just unpleasant all around. Last two rounds, I got stuck once through the port and it was simple. I will do chemo/rad after this. Then I'll have my rectum removed, ileostomy (a hole where you have to go to bathroom into a bag) and then I'll have that reversed and go to the bathroom normally. Lots of people live with this, lots of people go into remission, lots get cured. The statistics are outdated and need to be updated. Helen

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

I was diagnosed stage IIIB in December 2008. Things are fine now, it is almost like it never happened health wise. I hope the same for your family member.

Al422
Posts: 2
Joined: Aug 2012

My nightmare is fairly new, and in the grand scheme of things I guess I have nothing really large to complain about. The tumor was found in a colonoscopy conducted on June 12, 2012 in response to a complaint to my doctor that I could not get food down.

The resection surgery went very well thanks mostly to the brilliance and skill of the doctor. I am mostly healed from that now.

Chemo started last month, 2 infusions down and 10 to go, the standard 5FU, leukovorin and oxaliplatin. Neuropathy was really bad last time and will probably get worse, but that is the only really debilitating side effect. Other sides have been minimal to non existent.

My biggest fear, by far, is after doing all of this, the nightmare will come back. I know survival rates are really high, but not high enough to make the feeling of terror go away. It overwhelms me so badly that I would gladly accept a doubling of the neuropathy in exchange for a 100% guarantee that once the chemo is over, the nightmare will be over too.

I just can't fathom how I am ever going to lead a normal life with this hideous sword of Damocles hanging over my head forever. How do the rest of you deal with this?

Grace14
Posts: 64
Joined: Sep 2011

I was diagnosed in 2010 and i worry all the time about this coming back. It does get easier but boy does 3 months go by fast! The last time I was scanned which was In Jan. I thought I was gonna die I was so nervous! Like I said before I go to bed thinking about this and I wake up every morning thinking about this. There is not a day that goes by that cancer is not on my mInd. My life will never be normal again. I will always be looking over my shoulder. We just have to learn to live with this new normal!

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

First diagnosis was a polyp with clear margins. I read my report before gastro surgeon told me the news. My regret is I trusted my local hospital surgeon and oncologist. I did not educate myself about later stages and was going thru a difficult time with my ex-husband and busy with my two active kids.

It was luck that I found the cancer advanced just about one year ago. Felt great
but had some wierd breathing when I would lie down to sleep.
It was the statement, "We missed a spot on your liver from 2008" and nodules in both lungs that had me rush to an NCI hospital for two surgeries and treatment. I was an emotional rollercoaster upon diagnosis and have had many dark moments with the surgeries and chemo.

There isn't a day I don't think about the future of what I can handle and may lose. It is very scary and I have friends as support mostly.
My son and daughter are 20 and 22. They are being more understanding which really helps. I am finding some resolve with all of this but the anxiety sometimes is overwhelming.

I try very hard to make each day count as I feel well. Next week I will scan and know if I am going back to work. This will bring a new host of adjustments to deal with but I hope some normalcy.
Its so difficult living with so much unknown.

Thank you for letting me share this...

So Worried
Posts: 111
Joined: Aug 2012

I know exactly how you feel. Even though it's my hubbie and not me, our life is a nightmare. I feel like things will never, ever be anywhere close to what they were before. It's so sad. I do not know how people deal with it either. I think they have had it longer and they adjust and try to be positive and live day by day.
Good luck to you.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Stage IVb, and diagnosed 3 years ago. As with any major life change, it is a journey and we deal with it differently at different stages and on different days.

There are no right or wrong answers on how people deal with it - you find your own way.

After 3 years there is way too much to read on my Caring Bridge page, but feel free to read what you want to see how I've dealt with it over time. Click the link below.

CARING BRIDGE

HollyID's picture
HollyID
Posts: 942
Joined: Dec 2009

Diagnosed in November of 2009. left hemicolectomy and 7 rounds of FOLFOX, 5 rounds of 5FU and Leucovorin. I'm NED with some complications due to the chemo. Feeling great most days. Had a new cancer in June of 2010. Surgery to remove uterus and ovaries. Chemo has caused a few side effects I wish it hadn't.

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