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new to Colorectal cancer, any advise?

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

I found out almost 2 months ago that i have colorectal cancer and have been going to test after test after scan after scan, having both good and bad news. Bad being that they found 4 large dark masses in my liver, but good because they ended up being begning. bad because they also found a spot in my lungs. now i am playing the waiting game on the test results back from the pet scan to see if it has spread elsewhere. I have had an emotional roller coster of ups and downs and am trying to figure out what to expect for the future. I am only 30yrs old and just married this year and now trying to deal with cancer. it all seems overwhelming at times. It sounds like my Dr. is thinking about a full Colectomy, which i am pretty nervous about. can anyone tell me how to prepare for that?

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Hey there BigMan!

sorry that you have had to join this roller coaster ride. It's not fun, but there are some good things that always come through these challenging times. Keep you eyes and heart open for the goodness, and get prepared to fight the fight.

Back in 1989 I was 25 years old at the time, and had been married for four months and was diagnosed with Non-Hodgkins Lymphoma. not fun. Had radiation therapy for about six months. challenging times like these will either bring your marriage closer, or drive you apart. and, honestly, that will most likely be up to you!

You can push people away, or you can accept them into your battle graciously.
You may feel like you are a burden to others... but those who wish to help you in any way are doing this because they love you and care for you.

as for the specifics of the cancer and the doctors. I urge you to ask LOTs of questions.
Take notes and keep a book of everything going on.
and, when you're thinking... jot down more questions for the next time you're in front of your doctors.

And, this is a big one... if you hear something from a doctor that you don't agree with... quiz them, and also get another opinion, and if you don't like that opinion... get another!!

You cannot piss these doctors off. they are thick skinned and I first thought it wasn't nice or professional to get a second or third opinion. YOU need to take control of your health. You need to do research and quiz everyone.
and, if you don't like what's going on... fire that doctor and move to the next doctor(s).

quick story.
so I had cancer the first time, from November 1989 to April 1990.
in November 2011 i was dx'd with colon cancer with mets to the liver (Stage IV).
i went to the same oncologist that "saved my life" back in 1990 thinking this guy was good then, he should be able to help greatly. Anyway, this doctor told me that my cancer was very serious and that I had a choice to take treatment and go through treatment hell, or go home and get my affiars in order and enjoy my good health as long as possible.
I quickly asked... are you efing kidding me?
I told him that i needed a doctor and team who had fight in their gut and attitude of kicking cancers butt. I continued to tell him that it seems like he's been beaten up by being an ocologist so long that he needs to understand that not all patients are willing to read the statistics and just toss in the towel. I asked him to make four complete copies of all my records and then i called my insurance company, ask friends who i knew and then did online research to find local and distant oncologists who were younger and had attitude of kicking cancers butt.

I interviewed four groups, and made a decision based on my gut...
we did surgery in December and began chemo January 2012 through July 2012.
we've knocked about 80% of the cancer out of me... and i feel great.
still lots of work to do as I just began the next round of chemo drugs (different drugs this time).

it hasn't been easy,but life is worth the fight.

sorry that this post is so long, but i see much similarity to the two of us.

be a fighter man.
you can do this.

Joe.

Heart76
Posts: 26
Joined: Sep 2012

Big Man, like you, my hubby was diagnosed about two months ago. There are similarities and differences in our stories. We can so empathize with the roller coaster ride that is new doctors and test after test - sometimes with less than 24 hours notice! We appreciated the speed in getting this taken care of, even tho' it felt like trying to ride a tornado at times. So we're as new at this as you are and don't have the wisdom that comes with experience to offer.

Our case was totally unexpected - no family history, etc. - but, unlike you, we are in our early 60's with grown children. His current treatment is chemo (Xeloda tablets he takes after breakfast and dinner every weekday) and radiation (also every weekday). Today was his 14th treatment with 14 more to go. He's had very minimal side effects so far and continues to work full-time with an hour commute each way. We are very thankful for this. Surgery will be scheduled for 4-6 weeks after his treatments end. Due to his case being 'early stage', they expect to do a resection - removing a section of his colon and re-attaching the ends.

While I cannot imagine this happening at your age, I can tell you that I have a friend who came back from his honeymoon to learn that he had advanced testicular cancer. That was 19 years ago - they have a teenage son and my friend is doing great. He's been cancer-free for 18 years. Another young friend was diagnosed with advanced stomach cancer 7 years ago after two years of marriage. He has been cancer-free for over five years and they just had twin boys after being told he would not be able to have children b/c of all the radiation and chemo. There are many, many stories of hope and miracles out there. Seek them out - especially when your spirits get low. Draw on your faith. Just about everyone says that attitude plays a big part in your battle.

And it is definitely a battle - not an easy one. Fight as hard as you can, Big Man. You can do this! If anything about your doctor(s) doesn't 'sit right', don't hesitate to get more opinions and change doctors. You want doctors who are fighters. Get copies of EVERYTHING - in some places, it's possible to get all of your test results (films?) on a cd (assuming they were done at one location). The American Cancer Society will send you a free plastic case with folders set up to organize all of your records in one place. Just call the 800 number.

One of the best things we've read about all this was - 1) Fight as hard as you can!, 2) Don't give up!, and 3) Never forget 1) and 2).

Our hearts and prayers are with you and your wife.
C

Annabelle41415's picture
Annabelle41415
Posts: 4266
Joined: Feb 2009

So sorry that you have to join our group but here you will find many wonderful, giving and helpful people always willing to give you advice or just some comfort. Yes you will feel like you have gotten on a roller coaster or merry go round and can't get off. This will continue for several months. Try to make sure that you take someone with you when you go to an appointment or test and always bring a notebook to take notes. The extra person's ears are a good way to hear things that your mind might be wandering off on from the last sentence your doctor said to you. Like mentioned above, if you don't like the answer to your doctor's response then get a second opinion. Also, take a look at long they've been in practice, that was a big factor for me especially with the surgery. Please feel free to ask any questions you might have. Welcome to the board and hoping we can help make your journey a little easier and less confusing.

Kim

John23
Posts: 1832
Joined: Jan 2007

Re:
"......i am playing the waiting game on the test results back from the pet scan ....."

"......It sounds like my Dr. is thinking about a full Colectomy, which i am
pretty nervous about. can anyone tell me how to prepare for that?......"

Well, first... The PET scan was originally designed to attempt to provide a
better picture of a tumor, to help the surgeon prepare for his job. It was
not designed to be used as a treasure hunt to locate cancer cells here, there,
and everywhere.

It uses radioactive glucose that causes the film to "light up" in areas that
have a more pronounced amount of glucose. Simple theory, right?
A cancerous tumor is normally outlined well, although many surgeons
will still choose the CT or MRI over a PET.

But cancer cells do not always uptake more glucose than good cells.
Any cell that's in a healing process can use more glucose, and cancer
cells that are not growing as fast as their surrounding cells, will not
light up at all.

It's always bothered me that oncologists always seem to want PET
scans, and many will want one soon after surgery. Isn't that great?
Cells healing all over will light you up fairly nice and make it appear
as if you have cancer cells from head to foot.... Opinions of PET
scans differ greatly between oncologists and surgeons.

A colostomy or ileostomy isn't the end of the world. But if it's
decided that you oughta' have one, come back here and we'll
tell you what to demand prior to surgery. A well placed stoma
will mean a decent life, or one of continual annoyance; trust me.

The most important thing you should do now, not later, is to
locate an experienced colorectal surgeon that is not of the
same group or association as your present physicians. You need
to have another opinion (or three), and you would want those
opinions to be from colorectal surgeons, not general surgeons
or oncologists; It is important that you do that.

All respectable surgeons welcome "second opinions", since it
provides them with new ideas and techniques that they often
not become aware of otherwise. The guys are busy, and don't
always keep up with the newest and greatest! So -do not-
feel that you might insult you present physician. If they do get
insulted, then you most definitely had the wrong one to begin with.

Most well experienced colorectal surgeons can tell the difference
between a normal tumor and one that is cancer, just by looking at
a CT scan. A biopsy might be scheduled before surgery, just so
they don't open you up needlessly.

I had spots on my liver, lungs, etc., aside from a major fist-sized
tumor that grew through the colon out, and into the colon again
where it reverses direction (traverse). And 7 of 28 nodes with cancer.

Stage 3c or 4 in 2006, depending on who I wanted to listed to.
I chose "3c", since it was easier for me to adjust to.. I found out
in 2010, that I had been a 4 right along.

Staging is for the pros, it isn't for us. I have had friends with stage 1
die within two years of DX, so the stage really doesn't mean too much.

Cancer is a tricky thing. There are many ways to fight it, but no-one
knows what's best. So take your time as long as you have it, and
learn as much as you can about cancer. Do not fear it, learn about it.

By the way.... I read your bio here, and got a good laugh with the
part that said:

"..... i was getting pretty scarred because the surgon that i went
to see told me about the masses, and he asked when i was going to
go see my oncologist because he would tell me how long i have to live. "

That sir, is why you need to locate a good colorectal surgeon.

And personally? I wouldn't waste a minute doing so.

Better health will come your way!

John

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

Bigman, I'm sorry that you have to join our little family as a patient, but look forward to getting to know you. I agree with everything posted above and offer the following advice with the caveat that I just had chemo today and am in the throes of what you will learn to call "chemo-brain."

You mention that you're a newlywed so congratulations and plan on a long and happy life with your bride. If you want to have a family, have sperm samples preserved before you begin treatment. Your oncologist will be able to provide you with information on how to do this. Also, get the full radiation done before any surgery if possible. This will reduce the amount of tissue that will need to be removed and may even negate the need for surgery altogether. When I was first dx'd, my surgeon told me there was no way I was "getting out of this without a colostomy bag" but radiation completely killed off my primary tumor and I ended up not having surgery and don't have a bag.

Your handle indicates that you're a faithful Christian, let that offer you aid and comfort and help to up lift your heart. I won't go into my own beliefs at this point, but if others are interested I will in either pm's or in a separate post. Suffice to say for now that among other things, I am an ordained minister.

Your strong weapon in this battle will be to use a strong sense of humor. Laughter truly is the best medicine. I don't consider it to be "gallows humor" or "whistling past the graveyard" but as an affirmation of Life and a refusal to give in to the little wretch who has affected all of our lives.

When you begin chemo, pack a chemo bag for treatments. In this bag you'll want to have anti-nausea meds such as Zofran (a melt in your mouth pill) and Fenagrin (a suppository) as well as an anti-diarrhea drug like Lomotil. Get these scrips from your onc in advance and take them at the first sign of nausea of diarrhea because once they get started it's hard to get them under control. Along with the meds, take along crackers, not only are they good for a snack, but can be helpful against nausea. A book, portable DVD player, music player, puzzles or other distractions will help during the long hours of chemo infusion. You may also want to bring along a blanket to keep warm during your treatments.

I know that there's more, but can't think of it right now. Others will no doubt step forward with excellent advice. You will be in my prayers and as send you hugs, as will others.

God Bless and keep the Faith.

Ray/Doc

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

I just remembered a couple more things to share. First off, remember that this is your cancer. Accepting it as such empowers you to realize that each of our cases are different, although there will be similarities. You've been living in side your skin for 30 years and you know it better than anyone else. If you feel that something isn't right, let your doc know at the first opportunity. Also, ask questions here: there's probably over 100 years of combined experience and wisdom available to you on this board right at your fingertips.

I don't like to use absolutes, but here I will. NEVER accept a timeline. If a doc tells you that you have so long to live, get more opinions. There's not a single person that has ever been born who had an expiration date stamped on their butt. New treatments that are coming up which will negate a "death sentence."

If you can get copies of your blood work do so and then log them in a spreadsheet so that you can keep track of your numbers. Ask your onc what they all mean so that you can take actions to help in your battle. You are now at war and knowledge is power. Some of the most important numbers are your CEA or cancer count. The CEA is not always an accurate measurement, it varies from person to person. In my case, it has been very accurate. This is the number of cancer cells in your body measured at the rate of nanograms per milliliter. Don't be overly alarmed if you see a sudden increase in your CEA, dead cancer cells being flushed from your system can create a false high reading. Your white blood cell (WBC on the CBC panel) count is also important because your immunity level is compromised by chemo. Your liver functions are measured in the AST, ALT, Anion Gap and Alkaline Phosphates and will tell you how well your liver is functioning.

There will be times that you are afraid, it's only natural. Just don't let it overwhelm you, fear is contagious.

Finally (for now that is), if you do manage to avoid the colostomy you'll want to stock up on rubber gloves, wet wipes and incontinence pants (adult diapers.) Anytime I leave the house, I carry a bag with those items as well emergency meds (anti-nausea and diarrhea meds.) You'll want to get some barf bags (I call them the ghost of Papa Smurf because they're blue) and have them available not only on your person, but at key places in your house and car. It's always best to have these things and not need them than it is to need them and not have them.

I hope that these suggestion help and offer you hope for a long and healthy future.

John23
Posts: 1832
Joined: Jan 2007

"..CEA .. ..is the number of cancer cells in your body measured
at the rate of nanograms per milliliter.........."

Well, not "cancer cells", but a type of protein that's been associated
with cancer tumors. Having cancer may or may not change one's
CEA reading.

Big.... FYI:

From: "Lab Tests Online"
"On initial testing, patients with smaller and early-stage tumors
are likely to have normal or only slightly elevated CEA values.
Patients with more advanced tumors or tumors that have spread
throughout the body are more likely to have high CEA values. When
CEA levels decrease after therapy, it means that most or all of
the CEA-producing tumor has been removed. A steadily rising CEA
level is often the first sign of tumor recurrence.

Increased CEA levels can indicate some non-cancer-related
conditions, such as inflammation, cirrhosis, peptic ulcer,
ulcerative colitis, rectal polyps, emphysema, and benign breast
disease.

Since not all cancers produce CEA, it is possible to have cancer
but also have a normal CEA level.

That above link can help you figure out what many of the strange
sounding items listed on the blood test mean.

But beware, owning a medical book can lead to hypochondria!
And digging too deeply into readings that really don't mean that
much alone (like CEA), can lead to needless anxiety...

Just sayin'

You'll do fine! (just get another opinion, ok?)

Best wishes,

John

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

Oops, my bad. I did know that it's the protein and not cancer itself. Hence the caveat!

jen2012
Posts: 1208
Joined: Aug 2012

I'm confused about the CEA level - my husbands was 1.7 at diagnosis. It rose to 9.4 by his first treatment and then went down to 6.3 after the first treatment. Seems strange that it was so low at diagnosis, yet he is stage 4.

I love docs advice about timelines. I hate that doctors (my husband's doctor specifically) even give a timeline. Make sure you only ask questions you truly want the answers to and I would take that question off the list!

jen2012
Posts: 1208
Joined: Aug 2012

Congrats on your new marriage! Amazing how fast life can change huh?

We are new to this too - my husband was diagnosed stage 4 in August after many tests, with distant lymph node involvement. I don't have any advice to provide, but will pray for you.

The folks here are such a blessing. They have been through it all and can answer questions and offer so much hope. Keep praying, share the news with others and ask for their prayers. My husband says he can feel prayers for him and he is handling this much better than I am!

Keep fighting, keep reading, ask questions. See if you can get your doctors email address to ask any non-urgent questions.

janderson1964's picture
janderson1964
Posts: 1623
Joined: Oct 2011

Get a second opinion. This is a constant roller coaster ride. I have had 7 years of this roller coaster ride. The important thing is to enjoy the highs and live in the moment. Judging by your name you must be a believer. I couldnt have endured the last 7 years without HIM.

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

I just want to say thank you all for your support and advice. I feel lucky that this website is out there to get advice and support from other folks who are going through this or have gone through this before. Your stories have all been really encouraging to me and i have a bright out look on the future. I have no doubt that i will be here for a long time and i look forward to getting to know everyone better! there is a lot of good advice that i will definitely take to heart. asking questions is not always my strong suit but i realize that it will be a neccessary requirement to really understand what is going on. I am lucky enough to have a wife that is not afraid to ask questions for me :) Although i have started a list of questions that i will be asking the Dr. today! I will be keeping every one of you in my prayers!

janderson1964's picture
janderson1964
Posts: 1623
Joined: Oct 2011

You are on the right track by making a list of questions. You are overwhelmed right now and need to have your questions written down. Also spend as much time as you can on the internet researching the disease and its treatments including alternatives. You need to feel and show the doctors that you are empowered by knowledge. BTW stay away from reading the statistics. They are always outdated since it takes many years to compile the information before it is published and we are all individuals not just a number.

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

As Twain said: There are lies, damned lies and statistics.

Another little piece of advice isn't related to cancer but posting here. Before clicking on the Post Comment button, it's a good idea to hit Ctrl A and then Ctrl C to copy what you've written, especially on long posts. Too many times I've lost a post because of how long it can take the site to update and then I get a nonresponse page. Very frustrating trying to remember what all you just typed!

I think I'll leave CSN an old 8088 in my will so they can upgrade the server!

annalexandria's picture
annalexandria
Posts: 2256
Joined: Oct 2011

and I'm very sorry you have to join us, especially at such a young age. That truly stinks.
Lots of good advice here, so I don't have much to add, except you might want to ask your doc about taking cimetidine/tagamet pre- and post-surgery. Some studies have suggested it can help control the spread of cancer that can happen during surgery. I've had five surgeries and only used tagamet on the last one; that happened to be the one that led to my first NED (no evidence of disease) scan in a three year battle. May have been a coincidence, but it's a harmless thing to try with potentially great benefits. You can read more here:
http://www.lef.org/magazine/mag2007/may2007_report_cimetidine_01.htm

Keep us posted on how you're doing! Hugs~Ann Alexandria

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

Haha.... i learned my lesson already that was one of the first things i did when i found out. scared me a little bit and actually just made me sad and a little depressed so i decided that i dont need to look at those any more!

bigman4christ's picture
bigman4christ
Posts: 87
Joined: Oct 2012

So i met with the Oncologist yesterday to go over the results of my PET scan, didnt turn out as good as i would have liked it to be. Origianlly they found 4-5 large masses on my liver and did the biopsy of one of them and that actually turned out to be benign so that was a huge releif for me. they spoted a small spot on my lungs so they did the pet to see if the cancer has spread anywere else. the results that they found actually showed 2 large active spots on my liver that we thought were bengin but now doesnt appear that way. the GOOD news is that the spot on my lungs didnt really show anything so that is good! the bad news is that they found a small spot at the base of my brain, but not actually in my brain. so that is a little worriesome but he said it was pretty small and it is pretty hard to tell for sure because it is such a hard area to look at on the PET. so i am staying optomistic. I thought we were just going to have to cut the colon out and be done with it but instead we are going to start Chemo probably within the next few weeks. so i guess my journey to beat this is going to take a little longer than i had thought it was going to. but as long as we beat it, it will be worth it!

marbleotis's picture
marbleotis
Posts: 492
Joined: Mar 2012

So sorry about your DX. This is a great forum for support and info. First ask alot of questions, DO NOT google, only go to good sites ( ACS, MAyo Clinic, CCTA...). Each cancer patient is different, even the same cancer at the same stage in 2 people is different. Make sure you are comfortable with all your doctors, if not get new ones. Second opinions are always a good way to go. Try to get exercise as it helps with "nerves". Just walking outside helps. Don't worry about yesterday, focus on what you need to do today and plan for tomorrow. cancer loves to mess with your head - don't allow it - you will find you are alot stronger than you ever thought. Please continue to post and let us know how you are doing. There are wonderful people on this forum that have helped me trmendously.

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

Get the BEST oncologist you can find.
I met a 79 year old man Wednesday at Sloan Kettering who was DX Stage IV CC in May 2004.
He also did HAI pump therapy with my Onc and is still around and overall doing OK.

-phil
DX Stage IV Colon Cancer
Feb 2004
Living with Cancer

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