Hello and thoughts

Depending on the extent of surgery and your body's reaction to it (my gut completely shut down, and I was in the hospital for 4 weeks waiting for it to wake up.  This is quite uncommon) you could bounce back pretty quickly.  You may be on a limited diet while you heal, but assuming all is well, you will be eating steak and anything else again.  My bowel was resected in 3 places, and carefully reconnected.  I can and do eat anything and everything (and probably too much - I could afford to lose some weight!)  My brother had a bowel resection about 15 years ago - removed 15 inches of his colon to remove a non-cancerous polyp that they couldn't remove during his colonoscopy.  He has no dietary restrictions.

And yes, I've had chemo, and still do everything I did before cancer. 

I was in the hospital for six days. Lower Anterior Resection. I have a colostomy, it's just inconvenient.

I have Stage 2b, with some spread in my pelvic wall.

Good Luck

I was constipated at first, then few days after having abdominal pain I had blooded stools. And I mean, blood!! I got the doctor's appointment but the nurse practitioner showed up instead. After checking my rectum for blood she said I had an interna hemorrhoid and it burst causes the bleeding. So I believed her. She had me scheduled to see the GI doctor in four weeks. To make my story short, I was seen by the GI doctor and as soon as he read my filerecord he got real upset. He talked to his nurse privately. I waited in the room. The nurse came in and said the doctor is upset because the NP shouldn't waited this long to see you by the GI. This is serious,, she said. Then I was scheduled for colonoscopy right away. And sure enough, I had cancer!! The tumor went massive due to a long wait...I would say some nurses are very intelligent and caring but some are the opposite of others. What I'm trying to say is, listen to your body. It will tell you what's hurting and if it's painful get a medical attention right away. Go see a doctor not a nurse. I made a mistake and I had learned from it. Too late, maybe. Or maybe not. God bless us all

darcher said:

  Thanks for the responses

  Thanks for the responses everyone.  Sarah, in my brothers case he was working at three mile island post melt down back in the late 80's to early 90's.  Even though they assured everyone that the radiation levels were acceptable I don't think any level of exposure is safe.  

  I talked with my mother this morning and told her.  It was an interesting discussion.  She gave me more details about her's and my dad's past experiences. She had to do chemo and instead of losing hair and weight she gained weight and didn't lose a strand.  My dad just had the surgery even though he hid the fact he had something wrong for several months. 

   I suspect this was caught early on.  The symptoms that indicate advanced stages I didn't have, like being anemic, constantly tired, and things like that.  Makes sense since that's the area that makes the energy for the body to use.  I didn't even think about this, but I guess there is a chance a colostomy bag may have to be used.  The doctors and nurses never mentioned that.  There is a lot they didn't say come to think of it.  It's in the insurance record and I saw it on the monitor screen during the visits that I'm a smoker and not one of them told me to stop.  Maybe they only dish out the news a little at a time and only if necessary to keep a person from running away and burrying their head in the sand.

   

 

I don't know that stats but I do know that not everyone gets a colostomy bag. I have an illeostomy because it was going to be several months before I could get the surgery and he was worried I'd be totally blocked off before then. I can have it reversed if I want to. I think if it's caught early you often don't have a colostomy or maybe it's where the tumour is located, I'm not sure. In my grandmother's case, it was so long ago it was probably just how they did it back then. 

I'm not sure they know everything at the beginning. Mine wasn't staged until I had the surgery to remove it. I remember when I was told I had colon cancer and I asked how bad it was because every movie or show Ive seen that's what the patients asks. He gave me a funny look like I was an idiot and said "it's cancer, its bad". I hadn't suspected it so I was totally blindsided. I think they handled it badly. And he chose to get me in on December 31 to tell me so New Year's Eve day. I had to drive home and then sit there deciding if I should tell my daughter because she had plans that night and I didn't know if I should just let her have fun or if I should tell her in case I was gone by the next year and she'd wish she'd stayed home. 

Welcome to the roller coaster of cancer where nothing is for sure and everyone reacts differently and has different responses so you can only find out so much from other people who have been through it. You'll be an expert soon and will find out all kinds of things about it that you never knew. One is that most people on chemo for colon cancer don't lose their hair. We have other fun things from chemo but usually hair loss isn't one of them.

Jan

It's common to be in shock when the initial words are heard, but it's also common to want a plan forward.  The CT scan will show the oncologist what direction to take.  You can always get a second opinion if you don't agree with first or just want another view point.  Be your best advocate as you will have to look out for you.  Best of luck in your future journey and hope that scan goes well.

Kim

It seems like your head is screwed on right, and you are heading into this with a great attitude. Being positive and pushy is good, and you seem to have both. 

I am one who did lose my hair. It didn't fall out like you see breast Cancer patients, bald, bald is what I call that, but it thinned to the point I looked like Gollum from Lord of the Rings, and I had to shave it. It was no big deal shaving my head, but it certainly was devestating as it fell out by the handful. I'm thinking you're a guy, and aren't guys supposed to be 'OK' with hair loss? - semi kidding -

Chemo has a vast array of side effects, I think I had them all. Some have very few. 

I have a list of what I went through, somewhere on this forum. I'll see if I can pull it up and link.  It will give you an idea what CAN happen, but as I said, different for everyone.   - Here it is: https://csn.cancer.org/node/292593 -

I will send a prayer or good vibes your way for Tuesday. Hope the CT shows little to no uptake. 

Keep us informed. You're part of the family now. 

Tru

darcher said:

sounds familiar now.

   A lot of this is sounding familiar.  I swear, I blanked out a lot of it at the time but reading the responses now, Oh Yeah, the surgean did say they may not know exactly how bad it is until they get in there and dig around. There was mention of lymph nodes and having those checked for progression. 

    I agree that being an advocate for myself is absolutely necessary. If I would have relied on what I was "told" I'd still be waiting for a call on the colonoscopy that was never coming.  I'm kind of pushy in some ways because I can't stand sitting around waiting for something or for someone else to do something.  I'll call and pester and politely push and beg when it's important.  That's how I got the colonoscopy done as quick as I did and got connected with the surgean within a few days versus the months they would have made me wait.  It's our lives at risk so we have to go in knowing it's up to us to get the job done.  I don't believe health care workers really care.  If they did, they'd be insane with the amount of suffering they're exposed to so they tune it out from what I understand.    

   Jan, it's kind of funny in a way referencing movies as to what is asked.  I did the same.  How big is it?  That's a fair question and since one doctor inflated my guts like a carnival balloon and had a camera up my butt, I figured they'd know.  Nope, the surgean told me they can only see so much.  One question.  You said "other fun things" from chemo but not hair loss.  Ok, I'm almost dreading to ask because I know it isn't good but like what?     

 

 

It depends on the chemo chosen and different people have different responses or varying degrees of responses. Usually it's fatigue, because chemo can't differentiate between healthy cells and cancer cells so it kills whatever it comes across. The idea is that it will hopefully kill as many cancer cells as possible as it does this. But we have way more healthy cells so killing them isn't as much of an issue. But it takes its toll on the body and makes us tired while the body tries to heal itself. 

Some people get nausea, some people get other minor annoying things. If the chemo cocktail includes oxypalatin (I've probably spelles that wrong) it almost always gives neuropathy to varying degrees. This makes the person cold sensitive and to have the feeling of when you've sat wrong and cut off the circulation in your foot or something, that tingling sensation. It usually just lasts for the duration of the chemo regimen but some have had it much longer. I've had it in my feet for two years now. I hardly notice it most of the time. Another chemo drug is called Vectibix. Some of thenames can be abit different in the states, we live in Canada. Anyway, it causes a rash. Supposedly like having teenage acne. I had one treatment of it and my face turned into hamburger. I went toxic but this usually doesn't happen. Now I'm on called Xeloda. It's an oral chemo and can cause severe diarrhea. I have an ostemy so I don't notice the difference. It can also cause hand and foot syndrome which I haven't had so far. Probably the worst is anything that involves the oxypalatin. Usually it comes in a cocktail called Folfox. Its pretty rough while you're on it but it seems to be a popular chemo. FiveFU is another one that I was on before my surgery and it just caused fatigue.  The typical cancer patient that loses their hair and throws up all the time isn't typically what we see with colorectal cancer. But it can happen. Trubrit lost her hair. And some people complain of nausea.

Hope this helps!

Jan 

darcher said:

Trubrit and blessed 39 I read

Trubrit and blessed 39 I read through your links.  Inspiring.  I think once I have the CT scan and the results I'll be able to put this in a more clear perspective.   I'll keep everyone posted. 

Darcher:  Something you said really rings a bell for me, it is your life that is at stake and you should be assertive in getting answers to your questions and getting the best treatment as soon as possible.  Also, do not be shy about asking for a second opinion.  I rejected the first surgeon and I am glad I did.  They were going to remove 60% of my colon, but when they got in there, they only needed to remove 25%.  I am not confident that the initial surgeon would have had the skill and experience to make a split second decision that has benefited me greatly.  Also, rely on your intuition.  If things do not feel right, ask more questions or find someone who makes you feel right.  Good luck with your journey.

darcher said:

   Had the CT scan this

   Had the CT scan this morning bright and early at 8:00 am.  I got a call from the first doctor who did the colonoscopy around 4 this afternoon.  I dozed off and the phone ringing is what woke me up.   I wasn't expecting to hear from anyone until tomorrow at the earliest.

  They want to run another test and I honestly dont remember the name of it is but he didn't say PET scan.  Maybe doctors don't say PET and use the more correct term, what ever that is.   I should have wrote it down but I was still groggy from my nap that I wasn't able to think.  What I do remember is he said it didn't spread which I guess is good but then he said "There is a good chance it's curable",  That's a far cry from what he said the first time that "it is" curable.  My legs got weak and I almost collapsed hearing the reality of this.  Almost collapsing and almost crying tells me I still haven't taken it in.  It kind of reminds me of my 5yr old son.  He'll say his name versus "I" for a given situation especially when he doesn't like it.  The little guy doesn't have a clue what's going on.   My other adult children are another matter.   They're being helpful so that's good.

  The doctor went on to say the surgeon will probably want to do some radiation treatment before the surgery.   I've read that it isn't uncommon and is done to catch the clusters of cancer cells that might be floating around. The sub-million cell counts that can go undetected by the scanning devices used.  Being opened up it might allow these drifters to migrate to other areas so it makes sense.    

  What really stinks about this is about 6 years ago I decided to get healthy.  I lost about 70 lbs from 240 to 170, quit eating junk food, and took up archery as a hobby to offset the stress from work.   I had and still do have a lot of stress from work.  The hobby turned into an obsession and I began entering tournaments.  This was when we were still living in San Diego.  I got pretty good and won a lot of the local events a state championship and two seconds in national events.  We moved to colorado about a year ago and I've fallen away from it.  Still thin and in shape but the hobby got dropped. That might have been a mistake. 

  I've read that stress exasperates cancer but there isn't any hard evidence that it causes it.  I suspect it may depend on what kind of cancer it is as to stress being a potential cause.  When a person is subject to anxiety what's the first thing that usually starts to hurt. The stomach area.  Do it enough and something bad is going to happen.  My laymen's opinion.

  Has anyone else experienced this.  You tell a relative or friend about the cancer and they seem to distance themselves.  I don't know if that's normal or what but it sure as hell makes a person feel that much more alone.  Maybe it's the presumption that we are 'needy' and will drain them or there is a fear that it's somehow contagious. 

 

Sorry to hear about your not so good news.  For clarification you could call back and speak to a nurse who would read to you the note the doctor most certainly put in your file.  I think you will find you need to be assertive to get the best care, and your health is at stake here.

I am with you on the getting healthy thing.  I totally cleaned up my diet and lifestyle four years ago--but that was not soon enough.  The tumor probably started growing ten years ago.  That is how long you need to look back, but looking back is only helpful in my opinion if it leads you to remedy what you are doing wrong.  Otherwise, it seems to me that it is best to accept what is and put your energy into strategies to maximize your chances.

I have had pretty good experiences in telling people about the cancer--but both myself and my friends and neighbors are probably a bit older than you and have experience dealing with such issues.  As I have learned, cancer touches just about every person and family at some point.  If people pull back, that is a shame, and probably based on their lack of life experience, but you have a lot to keep you occupied, so I would recommend focusing on yourself and not on them.  Just be proud of who you are and how you deal with things.  Also, you can develop, to some degree, a new peer group here--people who understand very well what you are talking about.

Anyway, sorry that the news is not clearly good, but it is what it is.  It is fine to feel down and concerned, but I would recommend channeling your energy into having the best future instead of looking at the past.  At least that is the strategy that works best for me.