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Hello--New Here

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

I am new here, so I guess I should introduce myself and start with my colon cancer story.

I’m 59, married, no kids but 3 dogs, and a high school special education teacher. I’ve enjoyed training my dogs in agility (which I think I read that someone else here does?) but at the moment I’m not doing any training—I hope to get back to it later on.

On August 4 2009 I went in for my first colonoscopy—I was having no symptoms or problems, and I went just because I knew I should. I was 58 then and my mother had died from colon cancer, so I knew I really should have been checked years sooner. When I woke up the gastroenterologist was with me, and he told me, “The bad news is that you have cancer. The good news is that you’re not going to be a bag lady.” He had found a malignant-looking tumor partially obstructing my colon that he was virtually certain was cancer, even without the biopsy results.

On August 11 I had a colectomy, removing the segment of colon with the tumor (2.5 cm x 2.5 cm by 1 cm) and connecting the healthy parts of the colon. I spent about a week in the hospital, went home for five days, and then had to go back into the hospital with an ileus (postoperative temporary paralysis of part of the intestines). Stayed in the hospital for almost another week with that, most of the time with a nasogastric tube and IV fluids.

I had cancer cells in three lymph nodes out of nine removed, but PET and CT scans came back clear of any spread of cancer. So I am T3 N1b MX (or M0), stage lllb. Sometimes it worries me that they didn’t get more lymph nodes to check since there seems there’s a difference in staging and prognosis between 3/10 and 4/10.

I had a port put in and started chemotherapy in September--6 cycles (12 treatments) of FOLFOX. My only knowledge of FOLFOX from a patient’s point of view was from a friend who’d also had colon cancer and FOLFOX. She was able to work straight through all her treatments, and the cold sensitivity was the worst problem she’d had. So I just assumed it would go okay for me too, and on the whole it has.

I did have to have some of my treatments postponed for a week due to white blood cell counts and platelet counts. I started getting Neulasta injections after each treatment, and that took care of the WBC issue. I have never had any problems or pain at all from the Neulasta. The platelet problem continues, so I’ve had to have treatments postponed for a week after every few treatments. I’ve also had problems with constipation during and for a few days after treatment, but Colace has worked well for that.

I had a lot of sick leave saved up so I stayed home for a few months, from the time of the surgery through the point when the WBC problem was straightened out. Since I’m a teacher of students with moderate to severe special needs, the risk of infection at work was higher than for other situations. I’m working now, but I take off the three days I’m having treatment and wearing the pump—I don’t feel safe wearing the pump around students like mine, who tend to grab, hug, pull, etc.

Fatigue has increased over the course of treatment but I try to get plenty of rest. I’ve had mild neuropathy that’s mostly gone a week or so after each treatment.

Anyway, I’ve finished 11 treatments and I have just ONE more treatment to go! My last treatment will be April 7-9, and then I’ll be done. I’m happy of course, but also to my surprise I’m suddenly feeling more anxious. While having chemo I felt I was actively doing something about my cancer. When chemo ends, it seems like I’ll just be waiting to see if/when the cancer returns. My oncologist told me it’s sometimes hard to cut the umbilical cord to the treatment center (where I’ve felt comfortable, cared for, and supported) and that I would be continuing to do things to improve my chances, such as making sure I was eating a healthy diet, getting exercise and physical activity, etc. Still anxious, though, thinking about waiting to see if anything’s changed. From reading messages here I can see that other people have felt the same way.

My oncologist told me I could have the port removed after finishing treatment, but I think I’d rather keep it for awhile. It’s placed well, works well, and can be accessed easily, and with a little cold spray I barely feel anything when the needle’s put in. I’ve seen a lot of people with port problems at the treatment center. I think I’d rather keep the one I have, at least for awhile, than possibly having to get another one that might not work as well.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"that he was virtually certain was cancer, even without the biopsy results"

"I had cancer cells in three lymph nodes out of nine removed"

"there’s a difference in staging and prognosis between 3/10 and 4/10. "

Well..... A biopsy is usually required, since a non-malignant blob can
look like a cancer blob. To undergo a chemotherapy regime without
knowing for sure if it's cancer or not... is.. ?

And for staging, you will read in the finer journals, that 20 lymph
nodes should be taken, and any more than 4 out of twenty infected
will set you up a few notches higher in staging. 3 out of 9 doesn't
appear to be very realistic for accurate staging purposes.

You deserve (and should get), a second opinion from an oncologist
and a good colorectal surgeon. Three and four "other opinions" aren't
out of the question, either. You would want the other opinions to be
from qualified physicians that are not members of the same group
or organization.

I found it interesting that you (and others?) feel anxious regarding the
stoppage of chemo. Chemotherapy drugs are, by their very nature,
carcinogenic. They are the cause of the most serious neurological
problems that patients suffer, lasting long after the drugs have worn off.
They are also responsible for "second cancers"; cancers caused by
the drugs themselves.

I understand and appreciate the fear of having cancer, and how much
it so radically changes our lives; we -never- stop feeling anxiety over
the fact we had cancer cells inside us. But the fear of toxic chemicals
being injected into us, should be as great.

Be glad you are moving beyond the treatments, and take measures to
build up your immune system, so that perhaps it will fight any further
development, should it occur.

Eat well, be well.

John

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

Thank you for the welcome and your response!

Re:
"that he was virtually certain was cancer, even without the biopsy results"

I'm sorry, I guess I wasn't clear on that. The gastroenterologist felt sure it was cancer from seeing the tumor during the colonoscopy, before seeing the biopsy results, but of course there was a biopsy and the results showed it was malignant. We knew that before the surgery and way before chemo was even being discussed.

I was concerned too about the number of lymph nodes taken, since staging seemed to depend on x/10 (at least) and they'd only checked 9 of mine.

I'm more than ready to be done with treatments and to feel better--but there's still that bit of anxiety as it ends. I'm going to focus on healthy diet, exercise, and as you suggested, building up the immune system.

Daffodil324

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

Welcome.

Sounds like everything is going well. I agree with you about the number of lymph nodes removed. A study has shown that 15 or more should be removed, but each surgeon is different.

I disagree with you about the port removal. Mine was removed 3 weeks after chemo ended. It took that long to get an appointment. If left in, you have a constant cancer reminder. You also have to go in for it to be flushed every 4 -6 weeks (again, depends on the doctor) and you have a risk factor for clots and infection. Your chance of having this move to Stage IV is about 20%. If it does you can have another port put in at that time.

I didn't have any anxiety after treatment ended. I have had some 'what if' days, tho. My first post treatment CT scan is this coming Tuesday. My CEA on March 16th was stable and within normal range so I expect good news.

About the staging.... the treatment is the same for IIIa-IIIC so it isn't a big deal. In my humble opinion, I think the aggressiveness of the tumor and how far it had penetrated the colon wall (i.e. if it had burst through) are of more concern.

I'll be 60 this year. I was dx'd 3 days after turning 58. My tumor was 2 cm. I had 5 out of 17 nodes with 'a few microscopic cancer cells'. No family history for me and my parents are 82 and 78. My husband teaches math at a local high school. He's working with pregnant girls (ages 13 and up) and other kids who may not pass the graduation testing. He'd worked with special ed (not the same as you) for the previous 3 years.

I'm doing ABCDEF:

A= Aspirin 325mg daily
B= Better diet with no red meat
C= Calcium supplements
D= Vit. D3
E= Exercise
F= Modified Citrus Pectin (Fruit rinds) and FAITH :-D

Mediterranean Diet Click Here

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

Thanks for the welcome and your suggestions!

I'm still considering what to do with the port--still leaning toward keeping it for awhile anyway, until I feel more sure that everything's going okay. But I'll see how I feel about it after the post-chemo appointments, tests, and scans.

Thanks for the ABCDEF plan and the link to the Mediterranean diet!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

You are already a good way into your journey, and with your personal history, you can probably tell us all a thing or two about this battle! Sounds like you are really doing well with the FOLFOX! I look forward to hearing more from you on the board and look forward to your hearing good news after this treatment! It's really normal to start feeling anxious when your current "active" phase of fighting your cancer ends ... but it will definitely be nice to have the break from chemo. Your fight will continue, with strengthening your body and all, just different from now.
mary

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

Thank you for the welcome! I didn't realize how hard a time a lot of people have with FOLFOX before I started the treatments, so at least it was one less thing to worry about.

I'm looking forward to finishing my treatments in just two more weeks!

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

So glad to hear you made it through! I am a little over 5 years out, stage 4. I did keep my port until 2 years ago. It is a much more serious surgery to have one put it than taken out, and my surgeon and onc. encouraged me to keep it awhile. It was also handy for the frequent testing the next couple years, even though it stopped giving blood, it still worked for injecting, and iv's and so on. Hope things stay stable for you too.
Pam

Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

Thanks for the congratulations! I'm looking forward to finishing that last treatment. Thanks too for sharing your experience with keeping the port for a time. I'm still thinking about what to do with mine, leaning toward keeping it for a little while anyway.

coloCan
Posts: 1956
Joined: Oct 2009

My name is Steve; I'm 59 too, no kids, not married, live with caregiver girlfriend, retired, stage 3c, did preop chemo/rad, am a bag man, two more doses of postop chemo to go, if second picc dioesn;t give me any more problems (just had it sewn yesterday to arm with more sutures so it doesn't move anymore.....hopefully won't need third picc). Don't think I'll miss going to cancer center at all when Tx ends-outside of scans,bloodwork,etc or to say "hello" to people who kept me alive.......Definitely won't miss pump......Hopefully current side effects will eventual disappear

Jaylo969
Posts: 827
Joined: Jan 2010

And what a timely name. I was outside today and the Daffodils are just glorious this year.
Glad you are here with us. Encouragement and support is always readily found here.

Congrats on the 11 treatments! I am in my 7th. Did 5 Folfox and now am on Xeloda.I think I understanmd the anxiety about cutting the umbilical cord. When I went in for my 6th round of Folfox and the Doctor wouldn't give it to me I felt like I had been kicked in the knees. No more onc nurses, infusions, pumps, ports, steroids. I actually cried and felt like a loser because I couldn't tolerate the Oxi.Now I just go in and have blood draws and see the Doc every 3 weeks. Don't even have to have anyone go w/me.After the 'shock' I got over it pretty fast.This is easier, just takes some mental adjustment.

Best wishes.
-Pat

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Daffodil324,

I had no symptoms but decided to have a colonoscopy too (over 50). That was when the malignant polyp was found and the story began. I finished my chemo in December. What a relief it was for me. I did a lot of happy dancing.

I am married, 54 and have one poodle. We live in South Carolina.

I do try to eat better (more fruit & veggies). I am enjoying everyday now with a different outlook on life.

Welcome to our family! You will find great folks here!

Lizzy

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

Hi! Welcome to our family here. It sounds like you're doing well, and I pray that will continue.

*hugs*
Gail

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Welcome to our little community. Congrats on finishing the FOLFOX program.

End of treatment is a time of celebration and transition. The transition out of regular check-ups and contact can seem a little like being left out in the cold. You will have a follow-up plan for bloodwork and CT scans. Gradually pick up things as your energy returns and enjoy life. Try not to worry about recurrences. As you get further out in time recurrence anxiety will diminish.

Be well... Rob;in Vancouver

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Hi
I am also a high school teacher- age 52, dx'd May 20, 08, surgery, chemo, take down of colostomy- living in the post-cancer phase of life :) Also a stage 3B

I was also concerned that not more lymph nodes were taken, I can't remember the exact numbers, but it was close like yours, like 3 out of however many they took. A couple of different things- obviously I would have been more comfortable had they taken more lymph nodes- but the surgeon didn't, so we do live with that. I did feel better that a Mayo colorectal surgeon did the surgery- ie. I wouldn't have trusted a general surgeon in even knowing where the lymph nodes were for the colon :) And also, the treatment options are not any different between B and C.

I was pretty sick with chemo- was hospitalized 3 different times for a week each time- and was very grateful for a lot of sick days I had as well as a very understanding administration.

I also had the port removed several weeks after finishing treatment. Entirely optional.

I am clean and clear, it will be 2 years June 7 since my initial resection. CEA, CT and colonoscopy have all been fine in the last year. The anxiety does get better with time. You find yourself living your life, working your job- you adjust and find a new normal. It takes awhile but really you do start thinking that it was all a bad dream, that it truly is behind you. And you know what, even if it isn't- if I have a reoccurance, I actually prefer to think and believe it is behind me and to live in the present. Not always possible, but striving for it!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

first may I say how much i love your name. The Canadian Cancer Society features the daffodil as their symbol. This week as part of their fund-raising they sold daffodils....I have a big bouquet sitting beside me and they smell wonderfully...we will not have daffies in our garden for a little while yet.

I identify with doubts about leaving treatment....I felt the same way...glad but sad and scared too. Rob is right...you do sneak away from the beast gradually...I have been hauled back twice but that's ok too....you get through that, pick yourself up (sounds like a song coming on) and start all over again.

I am a teacher too...started with high school art but decided later to move back down to elementary...

welcome Daffodil

mags

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