Just found out I have cancer

If you think of it that way, then most likely it will be suffering ahead of you.  Please try to forget that you'll suffer, or you're hopeless, or you'll be sick.  Try to think that you only have trials, as everyone does.  It only comes in different forms.  Ours is cancer, others have other illnesses, or have been wronged by a crime, or by circumstances beyond their control.  What I'm saying is all of us do suffer and have problems.  What we have to do is to try to rise above these problems.  Always think that we are much stronger than these challenges, and that we will come out of it triumphant.

If you ever need someone to talk to, you have my ears.  You can message me anytime.  Its not always dark days ahead.  

SBF, I'm not sure you realize what a helpful post you've made by describing your diagnosis and emotional response.  I found out here that the initial freakout is absolutely normal and I was trying to get some stuff done in my will early to ease probate and planning on how/where to spread my ashes, all within the first week past initial diagnosis.

You're past the initial response, so this is more for newcomers who will read your post with great interest.  The online studies do and don't help and you may not be able to avoid google searching.  There are a couple good ones with great methodologies that are good to read...later.  I'm not going to post links, but if you want to educate yourself online, start with the very latest work available, there's several recent papers/reports (one in August of last year) describing the Folfoxiri+Avastin treatment and the dramatic improvement "in all parameters."  Then work backwards.  It helps to have some statistical training.  There's a really cool Greek study that evaluated the effects on survival of almost every symptom/presentation possible, including things like allopecia and % of body mass loss and statistically calculated the effect on survival time (losing more than 10% BMI is pretty bad, I ended up at 8% so I felt pretty good about that).  The trends in most studies are still useful but the data is old.  There's a really good study on Swedish cancer patients but the patient data started in 2002 and you absolutely have to ignore the median survival times.  They have nothing to do with our group now.  It's still interesting to see how presentation (e.g. presence of mets and where they are) affect survival time.  But this was the second paper I read and it was a total freak-out.

Some folks here decide not to read the studies and just talk with their oncologist.  Perfectly acceptable, they are the ones with the latest clinical practice.  I am an engineer so I can't help the online research.  You want to know the most helpful site for me?  This forum.

What the studies don't say is the collective wisdom of this group.  Think positive.  Stay positive, place yourself mentally on the far side of the median and work towards it.  Treat your body well and exercise if you can.  Hydrate, hydrate, hydrate.  Communicate with your oncologist, ask probing/open ended questions.  Talk to this group.  

I'm also young, 48, and responding well to chemo with minimal side effects (so far) and my mental state gets better and better.  I now feel that I'm on the far side of the median of the latest studies and that just reinforces the positivity.

I hope this is useful to new readers - become forum members too!

-Doug

Sorry about your diagnosis that brought you here but you're in a good place here. Our oncologists are trained in what to do yo help us live but they are not necessarily familiar with what it's like to actually live with cancer on a day to day basis. I know with my onc she has a very limited amount of time to spend with me and hasn't the time to get into all the little specifics so I assume it's the same with everyone else. On this forum you can ask about things that are odd or seem questionable about living with it and someone will have an answer.

I understand how you feel unreal about it. I still don't feel like a person with cancer and I was diagnosed just over 4 years ago. I can't remember if I posted about this before- I think I did- but I was getting an IV last month for another issue I have unrelated to the cancer and I heard the nurse at the nurse's station telling the doctor that the patient has stage four colon cancer and I thought to myself "oh, that poor woman" and then realized she was talking about me. 

I, too, had a huge tumour that was almost blocking me but they chose a different route to deal with it so I had chemo and radiation first and then the surgery. There are a number of different protocals and most of us were treated in a way unique to us and our situation. That being said, there are a limited number of chemos that will work and so someone will have been on whatever they choose for you. Make sure you come on here with any questions or concerns. It's reassuring to know what something will be like and how others reacted or dealt with it.

I wish I had found this forum sooner than I did. My husband was looking up info on colon cancer and getting very upset. I also looked it up and was disappointed in the lack of recent or pertinent information. I wasn't so much interested in numbers, I wanted to know what it's really like to have it from people who do. I found this forum and it's been very helpful.

Regarding your lack of faith, it's something I have struggled a bit with. I do have faith and it has helped me but there have been times during this where I've turned my back on it. I get over those feelings but having this and the things it has brought that have been in addition to the cancer but related to it have made me sometimes question my suffering and the reason for it. I get angry when I hear people talk about karma. Because of this I don't believe in it. I've never done anything horrible to anyone or anything. I'm a decent person with good morals. Yet I see some truly horrible people that are well and thriving and successful in their lives. If karma is a thing, why is that?

Anyway, take care of yourself and know that you can live with cancer. Even if they don't get rid of it completely you should be able to live a long time with it and just treat it. My oncologist said it's like having diabetes, you can't cure it but you can maintain it. 

Jan

I had same exact experience - same symptoms - my GI doctor assuming some sort of "itis" instead large tumor - that was cancerous.  My surgery went fine - "resection" - 6-months chemo - was happy healthy clean for a few months - bam a few spots showing up on liver and lungs - had 1 removed - back on chemo now.  As you have read - seems like many have this chronology.  Surgery - chemo - testing - more testing more chemo - surgery.  My suggestion is - get a second or third opinion for peace of mind.  Be optimisitc - but also realistic - we all seem to be on bumby roads and getting a few opinions might make you feel more comfortable.  I initially was told / thought that my situation common and I trusted my doector and surgeon - they seemed to be very well qualified and all my treatments went as planned.  Here I am stage 4 and on chemo and wonder if the path I took was the right one - hard to know but I do wish [again for peace of mind] I talked to a few more doctors / centers.  Anyway - good luck!

.. but now I'm complete on my treatment.  I had a grapefruit sized tumor, was completely bocked, and this was the first indication I had colon cancer.  They removed it, gave me an ostomy (temporary), put me on 6 months of chemo, reconnected me and told me I graduated.  I still have to have a port removed.  I'm doing much much better.

 The people who took care of me were great.  I hope you have as good or better results than me.  My best advice is stay positive as possible and laugh as hard and as often as you can. 

Ed

ScaredButFighting said:

Update - May 2018

I dont come here too often anymore, as I have been trying to live as normal life as possible.  However, I do want to update y'all.  I had 9 rounds of chemo (switched from FOLFIRI to FOLFOXIRI upon advice from surgeon), and now have my HIPEC next week.  I am excited, and also scared that they might find much more extensive (and unresectable) disease.  I have mostly been living my life as a "normal person," except for chemo days and a few days after.  It has almost been like denial or fiction - like I don't actually have stage IV cancer.  Well, here we are - no denying it anymore!

This whole "journey"  is one hell of a ride.  Surprisingly, some of it is good.  What is truly important comes into focus, and I now ignore trivial stuff.  The joy of a nice spring day is that much sweeter, as is time with my family and true friends.  Don't get me wrong - cancer sucks, and I want to beat this thing.  Just saying, it's not all crap. 

 

Thank you all again for your kind words over the past few months.  Onwards!

Wow! You have come so far in such a short time. Congrats on taking control of your attitude. There are people who actually refer to their cancer as a gift. I understand that now. It's awesome to enjoy all of our good days!

Glad to see that your doing so well. I like Darcher also was in denial. It seems to have worked as I have been Ned for two years now.