Another newbie

[tallyho]

Hello, everyone.

I hope that this won't be too long-winded. I can't believe that I'm in the position to post on this forum.

My name is Anna. I'm a 30 year old woman, and a Ph.D. student in the humanities. I also teach introductory courses in my field at my university. I've had things that I know now are symptoms of colon cancer for years - I ignored them and doctors blew them off when I mentioned them. I have always been in good health, never hospitalized, rarely sick with colds or even headaches. I'm active and kind of a workaholic. I don't have a car, but instead walk most everywhere I go - several miles a day.

When I went for a routine physical at the end of June, blood work uncovered severe anemia. (I actually almost left the clinic without doing the blood work.) I received a blood transfusion and a referral to a GI doc. I had a colonoscopy and endoscopy last week that uncovered a "likely malignant partially obstructing tumor in the sigmoid colon." It's quite large (13 cm) and the doctor also located polyps in the colon (removed) and a single polyp in the duodenum/small intestine (not removed). He believes that I have a genetic disorder, and he's suggesting genetic counseling and testing and another endoscopy to take a better look at my small intestine, among other things.

The GI doc doesn't have the greatest bedside manner, and he told me a lot of stuff while I was still pretty loopy after the scopes. However, he seemed very calm and straightforward about what was happening - I had a tumor, it was probably cancer, I'll have surgery, I'll be home from the hospital in a couple days, I'll be reading books for class a couple days after that, continuing coursework in the fall won't be a problem. I was crying uncontrollably in the hospital bed (embarrassing) and the nurse, also, tried her best to calm me down. She told me that I have a very good surgeon and that if I need an oncologist, my city has lots of those who are also excellent. (The crying mostly stopped the next day - I think it was as much an after-effect of the sedatives as anything.)

I have a consultation with a surgeon and a follow-up with the GI doc this week (on the same day, back-to-back). In the meantime, I have been distracting myself with reading, writing, and research (the things a grad student does), church activities, and a lot of quality time with friends. I have a good relationship with my family, although I went far away from home for grad school, but my parents are planning to come here for the surgery and recovery period. I also have a truly amazing support network among my friends and people from my church. My pastor, who was once a nurse, is coming with me to my appointments this week.

To say I am worried would be an understatement, but I am trying to think only about the next hurdle I have to jump (the consult and surgery - I haven't really thought much about anything beyond that just yet). I've only told a few people - my parents and sisters, my pastor, and a few close friends here, but I'm likely going to have to inform my department at the university and other folks pretty soon. I hate talking about it right now. As I think ahead, I've gotten used to the idea that I have cancer (they haven't technically confirmed that the tumor is malignant yet but due to its size, I can't see how it couldn't be), but of course I worry about if it has spread, and if the years that passed between the first time I noticed symptoms and now will ultimately cost me my life.

I also worry about things that seem insignificant in comparison, like, "If I take chemo, how will I work that around the classes I teach and the classes I take? I have to stay in school or I lose my insurance. And what's going on with that thing in my duodenum?" Things like this pretty much constantly run through my head from the time I wake up until the time I go to bed, though last night was the first night in several days that I didn't dream about it.

At any rate, thank you for reading, if you got this far. And thank you for this forum; I feel hopeful about having a normal life during and after my fight with this disease after reading many of the posts here.

Anna

[ams5796]

Anna,

You have to slow down and take a breath. You've come to the right place. You will find lots of support and good humor on the colon club. I'm inspired almost daily by these folks. The best thing you can do right now is take this one day at a time, one step at a time. At this point you're not even one hundred percent sure that it is cancer. But if it is you will get through it. It won't be easy, but you will do it because you have to. That's what we do. You seem to have a wonderful support system which will serve you well on your journey.

Please let us know how you do. We'll be here for you.

[CRguy]

I think ams5796 said it all. The support you have will be huge for you, right now. It is very much a journey we may all be on...but it always just comes down to one step at a time...breathe in...breathe out..repeat as needed.
Focus on today. What you did or didn't do last week, last year....really doesn't matter ..can't change it. Next week, next month, will eventually unfold and you will be able to engage in what you need for yourself.

Easy to say, I know, but we have all been through this, and yes...you can too.

In Harmony
CRguy

[Phuong]

Ditto. Anna, you'll also find that people will do everything that they can to help you. If you are required to be in school in order to keep your insurance, talk to the school and the professors. I have worked full time (and then some!) throughout all my treatments (3 years now) using technology and being creative with my schedule to work around appointments. Feel free to PM me if you have questions that I can help you answer. The way I figure it, we do everything that we can to physically and mentally fight this disease. No sense in worrying about the things that I can't control, so the rest of it I trust to my doctors and God. Stay strong!

Phuong

[SkiFletch]

Anna, welcome to the club, so sorry you had to join. As others have mentioned, some great folks here and I'm sure you'll love your stay . About working through chemo, it surely can be done. I just turned 30 myself and worked pretty much full-time all the way through my treatments. I'll bet that if you let your professors know what's going on, they will likely be very accomidating towards your situation. I work in a university setting myself and all my PI's were fantastic about handling my diagnosis/treatment. I couldn't have asked for more. Focusing on your studies is a good idea, distractions help .

At the risk of putting you into further info-overload, I was curious if you've had or are scheduled for a CT scan? If so, I'll assume it was unremarkable since you didn't mention it, but if you haven't had one, you'll need it. Especially with a larger tumor, making sure it hasn't spread is an important step.

Anyways, good luck and we look forward to sharing with you

[tallyho]

Thanks everyone, for your responses. It means a lot to me that you're willing to help calm someone in my position down...I'll bet I'm probably not the first person in this situation to find their way here, though.

I have not been scheduled for a CT scan or any other kinds of tests. I assume that will happen after I meet with the surgeon. If it doesn't, I am going to ask why. I think at this point they are trying not to worry me too much, which I suppose is nice of them. However, if I hadn't done some of my own research, I probably would be sitting here thinking this wasn't a big problem and it very much is.

[PGLGreg]

I was also teaching a university course when my cancer was diagnosed, but I had surgery almost immediately. It was almost at the end of my Fall semester, and my wife brought me some student papers in the hospital to read over, so I could assign course grades. Experiences with this vary a lot, but I'd expect a university is generally a nice place to be if one must have cancer. I'd be very surprised if your teachers didn't offer to accommodate you in every plausible way. I missed only two classes when I was recovering from surgery and kept up a normal work schedule during following radiation treatments and chemotherapy. Except for my department chairman, nobody at school even noticed I was having a little health problem.

[Jon Olis]

Hi Anna,

Welcome to the club. I agree with what others have said, you need to take it one day at a time. But I do understand wanting to plan. I managed to work through most of my Folfox routine. I was young like you, 36 at diagnosis. My cancer is genetic in nature. I have FAP. While you don't seem like a classic FAP case you might have the attenuated FAP. The multiple polyps and the duodenum sound like FAP but classic FAP presents 1000's of polyps in the colon which you don't have.

It sounds to me like you've obviously had a colonoscopy and an upper EGD. Did they biopsy the colon tumor? It would be pretty standard to do that. Also, I'd find out if they biopsied the duodenum polyp. If it comes back as an adenoma that would be another positive indicator that you have FAP or something similar. Polyps with adenoma's are the type that WILL turn to cancer. You might also ask your GI if the other polyps in your colon were removed and if they are adenomas.

As I write this post I realize this may not be calming you down and making you feel better but I wanted to give you this info because it is what I'd want to know if I were in your shoes.

And by the way, life after colon cancer can be great. I'm 6+ years out of Stage IIIC, 7 of 16 nodes, FAP diagnosis. I had my entire colon removed, 4 major surgeries, 6 months of chemo and I mountain bike over 2000 miles a year and climbed about a 1/4 million feet a year.

Good luck with everything and let us know if you have any other questions.

[tallyho]

Thanks again to everyone.

Jon, the two polyps in my colon were removed and are being biopsied. The doc took several samples from the suspicious mass for biopsy and also apparently took random samples from throughout the colon. The doc did not remove the "medium-sized" polyp in the duodenum but took multiple samples for biopsy.

I called today to find out if the pathology reports or biopsies were back and they aren't. They are expected back tomorrow. My appointments are on Wednesday so I think I'm going to let that be for now, and just wait to see what happens then. I was mostly calling to find out because my parents and sisters have been asking if I know more yet and I don't.

I'm keeping busy, staying calm, and praying a lot.

[joeyooser]

Anna, it is rough news to hear at any point. It sounds vaguely similar to my story, in that I had symptoms for several years and doctors just kept telling me to get more fiber. I even had a nurse laugh me off, saying I'm getting to the age of needing to eat better.

Long story short, it's a year later and I'm fine. I seem to say this on a lot of posts, but for me, chemo went really fast. Let's hope they can get it taken out soon if that's what is needed, and get on the road to recovery.

[RayGirl]

I think we've all fretted through this waiting period and wanting an exact plan. Unfortunately everything has to happen in it's own time, but before you know it you'll know more than you every thought you would about colon cancer. One thing I was warned by an onc was not to pay attention to a lot of the statistic you find online, because they are usually statistics over ten years and a lot of improvements have incurred over ten years. Also a lot of the numbers include the full age span and the treatment plan for an 80 year old and a 30 year old aren't always the same.

As far as working through chemo, for my xeloda treatment I had no problems working. Now this series of FOLFOX has been a different story, but once I got the right anti-nausea medicine, I could work any day but infusion day (1) and day 4, my crash day.

So breathe and take heart, you have support whenever you need it.

[Twinsmom]

Anna,

In a lot of ways, you are going through one of the most difficult parts of the process right now. It is agony when you are first diagnosed and have to get used to the idea of getting cancer. Personally, I felt much better once the initial tests were complete, I had met with onc and he had outlined a course of treatment......you will feel more in control at this point. You have also come to a great place to find information and people who have gone through similar ordeals as you can see.

Please do not worry for now about the treatment and the chemo. Your youth and physical fitness our on your side in terms of how you will feel throughout the treatment. Yes - you will need to make some modifications in your lifestyle but it is extremely probable that you will be able to go to school throughout the chemo. I was 16 years older than you at diagnosis and proably not as fit yet surgery was only modestely uncomfortable and I worked through the chemo at a high stress job.

Colon cancer is curable at stages 1-111 and there are many things that they are able to do to treat even a stage IV.

Stongest throughts,
Wendy

[cptmac]

Because you will be getting a lot of information, I always suggest bringing a tape recorder. Even the doctors appreciated it, so that they didn't have to repeat themselves, because I ask a lot of questions. What do I mean by a lot of questions? I once asked over 100 questions and the doc spent over an hour with me answering all of them. I was in shock, I kept waiting for him to kick me out.

[Jon Olis]

Thanks again to everyone.

Jon, the two polyps in my colon were removed and are being biopsied. The doc took several samples from the suspicious mass for biopsy and also apparently took random samples from throughout the colon. The doc did not remove the "medium-sized" polyp in the duodenum but took multiple samples for biopsy.

I called today to find out if the pathology reports or biopsies were back and they aren't. They are expected back tomorrow. My appointments are on Wednesday so I think I'm going to let that be for now, and just wait to see what happens then. I was mostly calling to find out because my parents and sisters have been asking if I know more yet and I don't.

I'm keeping busy, staying calm, and praying a lot.

Ok, good to know you're waiting for info. Just hang in there if you can. As others have said this is probably the hardest time of any cancer diagnosis (i.e. the beginning). Let us know what you hear.

[LoriJo]

Hello Anna,
Sorry to hear about your news, but you have found the right place to be here for support. I like Jon have FAP, the attenuated form. I didn't find out I had it until I was 44 years old. It is genetic. The gene either mutates with you or you inherit it. Jon's was mutated with him, and I inherited it thur my grandpa (which mutated with him) then thur my dad. I passed it onto my daughter not my son. I know that it is a lot to take in when you hear the "cancer" word, but take a deep breath. It does take a while to sink in, but with a good support group (which it sounds like you have) it will be easier to handle. I will wait for you to post your update. If it does turn out that you have FAP, feel free to contact me for more info on it. PM me if you want. God Bless you.
LoriJo