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Just diagnosed...

Mary1864
Posts: 39
Joined: Feb 2015

Been reading this site posts for a week now and decided to join.  I am in the swirl of having the eus toomorrow and getting staged and am terrified.  Trying to stay even through this.   I have a 16 year old daughter.  I was told that after a hospital  visit last month, which at the time they thought my appendix may have ruptured or diverticulitis, now was possibly the rupture of my colon where the cancer is.  It is 3 cm.  So i may have cancer all over mynperitoneum.  My heart is constantly racing...i am trying to be strong for my daughter and husband...i feel terrible that this is causing so much pain.  

Trubrit's picture
Trubrit
Posts: 4900
Joined: Jan 2013

The initial diagnosis, those first weeks, months even, are the worst.  No matter how many people tell you that we can now 'cure' cancer, your head tells you different. All of your worst fears are foremost in your mind. 

You have to allow yourself a time of mourning. Not for the loss of life, but for the loss of life as you know it now. 

I can tell you that once you are told what your treatment plan is going to be, and once you start, things get dramaticlly better. Knowing that you are 'doing' something to kill the Cancer, changes your mindset.

After I started chemo, my mind was racing so bad I honestly thought my head was going to explode. That is when I found meditation. I started with guided imagery. Listening to a CD when I went to bed. I slept like a dream for the first time since diagnosis. It worked for me, and may work for you, if you want to give it a go. Thing is, you need to find something that works for you. 

I had a notebook. Well, I had two. One I filled with every question, everything I was feeling emotionally and physically, and I took that to every appointment I had with my Oncologist, and made sure I went though all of it with him; writing down his answers so that I could remember them when I got home. The other notebook was a pretty little thing that I used as a journal. 

So I welcome you to the forum, Mary. You will love it here; so much information for those who are travelling the same road either as the patient or the caregiver. 

Ask anything you want.

Sue - Trubrit

Mary1864
Posts: 39
Joined: Feb 2015

Thank you Sue.  Your words to so many here on this site are kind and full of wisdom.  

I have mentally been from one extreme to the other.  I should clean out my closets and prepare to not make it through this....maybe i will be given the blessing of seeing my daughter graduate high school.  All of these racings thoughts are awful to say out loud to my husband and mom.  I am just trying to go day by day for now....

Freerayne's picture
Freerayne
Posts: 1
Joined: Apr 2015

Wow, I'm new here as well and am enjoying reading all the wonderfully supportive things from everyone!

I'm a year out from my diagnosis, surgery and chemo and I really relate to your fears as I'm sure everyone here does.  I have a 15 year old son and an 18 year old daughter graduating this year.  At this point I am clear, although just had ct scan wednesday and will get results tuesday.  Your comment about cleaning out closets really hit close to me as I've thought that for the last year as well.  It's a tough ride but so far I've learned how strong I really am and how loved. 

 

Mary1864
Posts: 39
Joined: Feb 2015

I have a friend who just lost her 13 year old daughter to glioblastoma...and it strikes me, thank god this happened to me and not my daughter.  I often think that we all have a time to begin and a time to end.  I am lucky to have had 50 yrs here, but will fight for more.  I had surgery 3 weeks ago and have a temp ileostomy, which i still hate....but am trying to deal with.   Two weeks away from chemo and i wonder if i can take it.  You are right...this is such a test of strength, and you did it!  I know for sure that when my husband said he just wants things back to normal, i told him that it wont go back to the old normal....but we can find happiness in yhe new normal, hopefully.

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NewHere
Posts: 1117
Joined: Feb 2015

I am sorry for the loss of your friend's daughter.  It is really difficult to hear of a child having to go through this, it is so wrong and unfair.  

Surreal is still a word I use often.  Not sure which chemo you are getting, I am on FOLFOX.  It is doable.  I had a port put in, and thanks to people here, made sure to get the prescritpiton for lidocaine to put on before sessions.  The port and cream seem to make things a lot easier to deal with.  I also am lucky in that I have a pump that does not require batteries, just works on body heat it seems.  So it is quiet.

The chemo so far has been tolerable and I seem to have it pretty easy in the grand scheme of things.  The big thing is the tired building up each session for me.  I usually get hooked up on a Monday, get disconnected Weds and then the tired starts Thursday through Saturday.  I tend to push it a bit on Friday, and should just rest so it may make it a bit worse.  Basically if I just chill on the couch, wake up when I feel like it, watch some TV or listen to music or read it is not bad.  Getting up and walking around for a bit triggers it.  So basically, for me, it is just accepting being "lazy" for a couple of days :)  

I have the response to cold in my hand and feet, but if I keep things warm it is not bad.  Wearing slippers over socks and gloves when needed.  It is deceptive in that it may not feel too cold out, like mid 50s, but it can happen.  This is building up also like the tired, but generally managable still.  Some positioning triggers it for me (depending on how I am sitting or move). Once again, the least is when I am just chilling out and relaxing.  

Try not to worry too much about it.  My Onc explained how much it ultimately helps the prognosis down the road - cuts down recurrance by about 50%.  Though it is not something that was on my list of things to do, it has not been as bad as I expected.  

Hang in there, you will do fine.  There is a ton of support here and each time I have my doubts or worries, I look at the great people here who have walked the path before me.

Mary1864
Posts: 39
Joined: Feb 2015

 after surgery, i felt so wiped out.  I am being told that i am impatient.  Surgeon said i am recovering perfectly.  

Only 4 weeks post op.  Felt so nervous going to onc appt.  i lost 12 pounds after surgery and have boughts of fatigue.  But they want to jump into chemo?   Am i ready?  I do want to get this done, but feel very nervous.   They told me folfox....same routine...3 days on every two weeks.   I am supposed to get my port in this week, and start chemo on the 12th...so anxious.

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

The whole thing is draining, surreal, bizzarre, difficult to describe.  And because how surgery has progressed there is a certain deception.  My friend had a hernia surgery maybe 15 years ago, he was a wreck afterwards with the incision and pain.  Before going in for mine, I thought of that.  Compared to the hernia surgery, my surgery was a lot easier (so I think) when comparing the two - what I recall he went through and what I went through.  Techniques and procedures help with things, but the underlying surgery is much more.

 Do not have my surgical report in front of me, but it was between 25% and 30% of my large intestine which went give or take.  But though there is less obvious discomfort, there is still a ton going on inside.  There is a huge internal change in a major system.  It needs to heal and "get used to" the whole reworking.  Tired and resting is part of the healing.  Not saying that I do not get impatient; for instance not being permitted to lift more than 10 lbs for 6-8 weeks after the surgery then another 6-8 after the post placement is a drag for me.

I lost weight after surgery, dropped almost 20 lbs from the morning I checked in for surgery until the day after.  Does make you tired.  And this is just the physcial aspect of this all.  The emotional portion is going to be more draining in all likelihood.  

On the chemo side, for me, they wanted to start within a certain time frame.  They wanted to wait 4 -5 weeks after surgery, but also wanted it started not too much further out than that time frame.  Part of this was due to testing that was done and how long it remained "valid" and also that the time frame seemed to be a good one for optimal results.

To be nervous about chemo is also REAL normal.  Think back to what the words cancer and chemo meant to you before you got on the roller coaster.  A pair of demons that lurk in the shadows of everyone's mind.  And it just got dropped in your lap.  The stories, the visuals we have seen on television and movies and what we have seen, unfortunately, in real life with family and friends.  

But despite all the fears that we all have, it is doable.  I am four in and now coming out of the downtime, which seems to be 7 days for me at this point from date of hook-up.  And there is always going to be concern with each hook-up and what-ifs.  It is the nature of the beast in this all.  I get anxious for the treatments and what effects may creep up.  But doable.  The first hook-up is probably going to be where you get most anxious, it was for me.  But once the process was started, the curtain was lifted on that aspect of fear and concern.  Now it is one day at a time going through the sessions.  I have my calender marked with them all.

Hang in there, understand it is okay to be impatient and anxious and hang out here and post whenever there is a concern, question, thought, good joke, good news or anything else.

Mary1864
Posts: 39
Joined: Feb 2015

you sound very grounded...and in the best place you could be with this!  Thank you for your words of encouragement.

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Semira
Posts: 378
Joined: Mar 2012

... one step at a time.

How I remember this blur of thoughts and panic back in Nov 2011 when my husband was diagnosed with stage IV (mets to liver). Don't forget to breathe and take one step afte the other. Glad you found this great grop with so many great people full of wisdom. You will find much input and support here!

A big hug from Germany
Petra

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NewHere
Posts: 1117
Joined: Feb 2015

I was diagnosed a month ago (actual biopsy confirming things less than 3 weeks ago), and it has been a whirlwind including having surgery last week to remove a portion of my colon and reroute things.

Currently I am waiting for the official staging (it is III but unsure of which one) and meeting with the Doctor next week to start discussing chemo plan.

The people here have been amazing in support.  And so far the reality of things, such as the discomfort from the surgery, has been less than I anticipated - meaning my fear and stress of what would happen was way more than actually what has happened.  It is difficult not to get wound up when something like this is dropped in your lap, but the times where I am able not to think about it as much or not worry as much have been helpful.  And speaking with people here about thoughts and concerns has helped in being prepared for what is next, the advice alone about being prepared to walk after surgery as soon as possible really got me going in the right path when I was out of surgery.

Wishing you the best and speedy recovery.

Mary1864
Posts: 39
Joined: Feb 2015

I am scheduled tomorrow for an ultrasound (eus) which they me will begin staging the cancer, along with a cat chest on friday.  Did you feel like you just jumped on this train that is going 100 miles an hour?  I just feel like i am so worked up all the time and am truingnto be normal for my family.  

I was told that chemo is likely to come first...but still uncertain...of everything for that matter.

I read many posts for about a week and didnt think i would join.  Just be a passive member....but i feel like i need to talk about this scary and overwhelming disease without feeling guilty or hesitant.  And i do agree..everyone hear is so supportive.

Are you home now?   Very glad to hear that you felt better than expected after surgery.

alphagam
Posts: 5
Joined: Apr 2011

i had an EUS which stated that the tumor had grown through the rectal wall.  Went for second opinion and found that in reality the tumor was only in the rectal lining, Stage 0.  That was four years ago.  I get yearly screenings, but all is well.  My surgeon says EUS is an outdated test

Mary1864
Posts: 39
Joined: Feb 2015

What test did they do when you went for a second opinion?  The surgeon told me that the eus is 60 percent effective.  

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

I made it home within 4 days (check in the 10th, out the 14th) and I do credit the help here for it.  They all let me know walking after surgery was important, and I kept that in mind.  I probably did not get out of post-op until about 11:00PM and by 11:00AM (I guess) I was taking my first stroll.  Was not easy, and after 4 or 5 feet, I thought I was beat and could not go further.  BUT I had a great nurse and also remembered what I was told here - movment = healing = getting out of there.  (Easier to rest at home, as compared to being woken up every few hours, plus no IV line attached to walk around :) )  

I think I tried two more times that day (maybe 3) and was making complete laps without stopping.  By the second day I was doing sets of two laps, guess I got to 6 (just shy of 1/2 mile in total).  The day before discharge I did two half mile sets.  (The staff knew how many laps made a mile :) )

It is scary and overhwhelming for sure.  And I am not normally one who talks in general, but the rules changed when this landed on my lap and I have no regrets whatsoever in signing up and speaking with people here.  Not that other people do not understand, and obviously there is empathy and support, but we are now a part of this club.  I look at the posts here, the grace, knowledge and strength, and there is a ton of reassurance there.  

Not sure if you saw the term NED yet (No Evidence of Disease), but it seems like 5 years of NED is the place where you want to wind up.   Since you and I are so close in time (there was also someone else) in 5 years we will all be stoked as we hit our 5 year NED point :)

 

Mary1864
Posts: 39
Joined: Feb 2015

I like thinking of a 5 year goal!  

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

Just marked my calender and also a reminder two days before :)

 

TrustHopeLove
Posts: 3
Joined: May 2015

NewHere,

I am also new here. My husband was just diagnosed with stage IV (mets to liver and peritoneum). I'm the primary caregiver. He will start FOLFOX soon. The oncologists think chemo first, surgery (hopefully) later. I'm so scared.

Your posts have been refreshing to read--even though it seems totally ridiculous to say that about cancer treatment. I'll be honest. I'm really freaked out.

He's only 33 and I'm only 27. All of the doctors and nurses and social workers (the hospital system we chose assigns a social worker as part of the care team--which is amazing) are always so suprised to see us. If it's a doctor or nurse we haven't met they usually ask us if the patient is in the bathroom or something like that.

So far we've only heard bad news and talked to people who tell us to prepare for the end. So far, nobody has talked to us about fighting back and how to go about that.

Your posts have been helpful, and hopeful. Thanks!

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NewHere
Posts: 1117
Joined: Feb 2015

Sorry you have to be here, but this is a good board.  Tremendous amount of great people. 

Sometimes there are many things that seem ridiculous when discussing things about cancer - you will see the strange jokes, stories and people laughing.  Which can seem weird :)  I have a couple of friends who have been through this, and the second I became part of the club there is a certain change and not necessarily bad.  (Yes, that sound so strange indeed)  How the outlook on life and things actually can work to be a positive.  So bottom line on that, do no worry about things being off.

It is very good that you have a social worker, it is something you should make sure to use whenever you feel like it.  It is a tough time, so all the assistance and support helps.  

Your husband is young, which should be a plus.  I am a bit older (not quite two decades) but based on my general health the doctors are optimistic for me.  Until this little brouhaha, I did not take any medicine.  My oncologist said even if it progresses, no worries because of my health overall.  They will just go in and take care of it.  And it is not like they are sugar coating things along the way.  I ask the tough questions, want to know the stats and all the rest.  Of course stats vary from person to person and are even outdated a bit as each day passes in the advances in cancer treatment.  My case is IIIC and had many lymph nodes involved.  So in theory about 53% chance of 5 year survival, 60% chance of recurrance, 25%-30% chance of recurrance with chemo.  You (meaning any of us you) can dwell on those, but ultimately they should be background knowledge and not overwhelming or a daily concern.  

The course of treatment and getting answers to questions you have is the important part.

When I was diagnosed I went to two surgeons, one more as a first opinion, because I pretty much had my mind made up I was going to Sloan Kettering.  The first surgeon was a little iffy (seemed knew to this) and almost as afterthought considered a scan (PET) to see if chemo should be done before or after.  The second doctor (the one I used for surgery) immediately sent me for a scan that day to see whether chemo before was needed.  He was fairly certain that it would not be based on scans I bought in, but he wanted to make sure.

The scan came back as not needing chemo before hand, in his opinion.  The surgery report came back with clean margins around everything (good sign) and go to chemo.  (They are also monitoring other things which may be there in lungs, kidneys and liver, all too small).  I thought for sure when I had a post surgery PET scan I would be bumped to IV, but it came back still as IIIC for the time being.  And basically they all said that the course of treatment would not change regardless.

Anyway you may have picked up on discussions of ports - it is a relatively small surgery where it is put in to access the chemo.  Based on people here, and also discussions, it helps with getting chemo (no burned out veins) and also to draw blood.  Also check into the lidacaine cream (something I also found out here) to apply before the port is accessed.  Helps make it pretty much painless for the in and out of needles and chemo.

I am lucky in that the chemo pump I have works on a vaccuum and body heat, no batteries.  Based on other stories here, I lucked out.  It is quiet, no need to worry about batteries.  The biggest issue is that I do not sleep on my right side for a couple of days.  I wear the pump on the right and port is on the right.  So I just sleep on the left or my back.  

As to the chemo, it is not on my Top 10 things to do, but it is not the total horror show I envisioned.  It builds up over time, so this round (#5), I am a bit more tired for extra days.  Could be inertia a bit :)  But hanging on the couch and watching TV works fine.  Plus some naps.  About 7 days out of initial hook up (two week cycles) I am pretty good.  My oncologist also has me doing only 9 of the 12 sessions with the Ox due to the fact that the chances of neuorpathy increase after 9 by a lot, but the incremental part of having that for 3 more sessions in knocking out cancer is small compared to the risk of neuropathy.  He also has a couple of extra things that adds a % or two, like he wants me to have aspirin.

Talk through whatever concerns you have both here, and more importantly, with everyone involved with the treatment.  Do not let anyone dismiss the questions or concerns you or your husband may have.  There is nothing "dumb" or "stupid" or whatever other words that can be used.  I know I ask the same question a few times, sometimes with slightly different phrasing, to make sure I am understanding it and that the people are listening.  Take a notebook with your questions and answers if you like.  

As to fighting, live your lives.  You are young and have a ton of things down the road in the future to look forward to.  Want to see a movie?  Go.  Want to take a ride to look at scenary?  Go.  I am going out and shooting photos.  I love doing it. Even when I am tired (during the more tired part of the cycle) I go out and try to find a flower, a rabbit, a bird to take a photo of and work with the photos.  A couple of weeks ago I went to one of the Rangers Games and last week went out to watch the last game with some people in a bar.  (Though had to be careful with the cold drinks, just got disconnected a couple hours earlier :) I also was just drinking non-alchohol drinks.  Probably should have had a beer.:) )  

This week I have things to do every evening, playing it by ear.  Usually can go for a couple of hours and be fine.  Getting used to the pattern now after 5 sessions.  As mentioned, chemo and cancer were not on my Top 10 list of things to do, but so far it is more annoying than anything.  How is that for a ridiculous statement?  Sealed  

There are going to be times when you and your husband may get a bit down, it is bound to happen.  I have those moments during this.  Do not dwell there.  Let it happen, then say "screw it," and move on to the good things.

Hang in there, and use this board as often as you need to.  Good news, questions, posting silly jokes, venting, whatever.  Great people here.

My thoughts and best wishes are with you and your husband.  

alabama_survivor
Posts: 85
Joined: Nov 2014

Sounds like you are handling this much better than I would have when I was your age.  You certainly have good reason to be freaked out.  BTW, I am 55, and had stage 3C breast cancer.  I just completed treatment about a month ago.  I am over here because both my brother and sister have colorectal cancer.  I remember my own cancer during the diagnostic process, and it did seem that all I got was bad news, and every visit seemed worse than the one before.  But then the tumor started shrinking, and I started getting some good news.  It was certainly a long haul, and you certainly have every right to feel whatever you are feeling, but there will certainly be brighter days ahead.  One thing that really helped me is that I embraced my faith in God like I never have before.  If that is your thing, I urge you to cling to it like a lifeline.  If that is not your thing I urge you to consider it, but certainly find something that you can cling to.  Hugs to you, and certainly come here and let us know what is going on. 

Mary1864
Posts: 39
Joined: Feb 2015

I hated the first meetings with the surgeon and onc doc....they throw statistics at you while you feel numb...just kindof in shock.  I have been through all the initial testing and had surgery.  Went for the simple procedure inserting chemo port and they punctured my lung, hospitalized for a week.  Chemo pushed back another week.  I had my path carved, ready to get to chemo, and was knocked down.

I have told myself to take this one step at a time.  The difference with this disease is loss of of control.  You are involed in making decisions about your treatment, but I still feel that this is all somewhat of a guessing game, an educated guessing game.  I feel that this will be easier to cope with if I am able to accept what I cannot contol.

Focus on what is next and get through that....ask for advice, but be careful....how treatments affect one is not how it affects another. And in the meantime....you and your husband must live.  This does not define you.  

And it is not fair to only consider the bad outcomes....i dont like people telling me to stay positive...i always felt better trying to be realistic...that is, consider all possibilities....

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

My wife used cimetidine, high dose vitmain D3, K2, aspirin and a number of supplements recommended in Life Extension Foundation protocols to reduce the chances of cancer cell clusters surviving and to dramatically improve her immune response.  Our immediate response using these little known protocols, we consider to be her opportunity of her lifetime, destroying much cancer before her operation, including in the peritoneum and infiltrated fat.

Read up on cimetidine, supplements, maybe celebrex for perioperative treatments that can be done before chemo will start, in a very limited time window.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

try to stay calm. I know that's easier said than done but you're in for a marathon, not a sprint. You'll feel better once you're staged and you know what you're up against. It's comforting when there's a plan in place and you begin marching towards the goal. The 'what ifs' will drive you crazy, and I gaurantee the majority of them will not happen. Much of the stats are outdated and everyone is different so try to stay off the internet and its doom and gloom. Think positively, hug your friends and loved ones and try to come from a place of gratitude instead of panic. I know it's hard, but you have to create a mindset that allows you to handle what's happening.  And remember we're all here for you too, Good luck, best wishes!

Easyflip/Richard

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Momof2plusteentwins
Posts: 507
Joined: May 2012

I was diagnosed April 2012 Stage IV, mets to liver and lymph nodes.  The scariest time of my life.  Everything was a blur, had to take Ativan for anxiety.  My twin boys were 14 years old.  That's all I could think of is that I wouldn't be here to see them graduate.  Well they are graduating in 3 months and I am still here.  Also I am NED, so I hope to be here to see them graduate college. 

Sandy

Mary1864
Posts: 39
Joined: Feb 2015

I am just a little over a week away from this diagnosis and cannot believe that i am hoping to see my daughter graduate.  

But i am so happy to read you are almost at graduation with your boys after everything you went through.  Truly must feel like a milestone.

I have always been the one taking care of everyone...it is so hard to imagine that i will be sitting on the sidelines...the one needing to be cared for.  

Thank you....for sharing with me.

Mary

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herdizziness
Posts: 3642
Joined: Apr 2010

my last two colon tumors did not show up on CT scans, just had a CT Scan this January on my third colon tumor and it does not show the tumor at all.  I know it's there because the pain is in the same place when it hits.  My second primary tumor (highly unusual in most cases) did not show up on 5 different CT/PET scans I suffered in great pain for months before finally getting a colonoscopy which showed I was 95% blocked from the size of tumor and got it cut out.

I am gettings another colonoscopy for this third present tumor since it isn't showing up on CT Scan and am thrilled that my oncologist is recommending this one be cut out as well.

So until you have a colonoscopy I don't really think you will know what is happening in your colon, if I were you I would insist that my oncologist give me one (I had to insist on this last tumor)  they do have to listen to you.

Best of luck.

Winter Marie

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Lovekitties
Posts: 3330
Joined: Jan 2010

For everyone getting a cancer diagnosis, the instant fear is there in some form or another.

Have you had surgery?  Have you had a PET and/or CT scan?

You are not causing pain to your loved ones, the cancer is.  Yes, staying strong and positive is important, but you will also need to let them help support you. 

Please let us know what part of the country you are in, as members here are from all over and may be able to offer you some specific insights as time goes one.

There are many here who have faced dire predictions from their doctors, who continue to live and live well.  It can be done.

Hugs,

Marie who loves kitties

Mary1864
Posts: 39
Joined: Feb 2015

I live in New Jersey.  I had a colonoscopy last week which the doc found  a 3 cm mass and knew it was cancerous.  Pathology came back as adenocarcinoma last friday.  Met with surgeon this past monday.  Had my baseline cea bloodwork on wednesday.  Eus ultrasound on thursday and a chest cat scan today.  I am feeling so withered....was doing good thru the week but i am just so exhausted.

 

The eus results were that the cancer has spread into first two layers...not into muscular wall.  So he classified me as a stage 2.  But i know that is not a final diagnosis because i still have chest results to wait for....could jump right into stage 4.   I have to get better at dealing with the rollercoaster ride i am on.  The doc said that he saw two lymph nodes involved.

LindaK.
Posts: 490
Joined: Apr 2013

Wow, you have had quite a week, no wonder you are exhausted.  That is a lot to deal with in 1 week.  Try not to worry too much, easier said than done.  Try to get out this weekend (I know it's cold, I live in western NY) to do something to get your mind off all this if at all possible.  My husband had colon cancer but I'd never heard of a an EUS unless that is an endoscopy.  He had 2 in September for placements of stents when his bile duct and duodenum were blocked.  I am glad you are getting all the information so quickly, that is a blessing in disguise.

Hopefully your oncologist will have a plan for you soon.  Whether it is surgery or chemo or radiation first.  It's a lot of information all at once.  Hang in there

Linda

Mary1864
Posts: 39
Joined: Feb 2015

Thank you!

 

The Eus is the internal ultrasound....mostly to see the cancers penetration into intestinal wall.  I was grateful that it wasnt fully grown outside, but i know that doesnt mean it has not spread either.  I did have a lower cat scan in january, but it was for a post hospital stay workup.

 

I went to the er in december with hgih fever and pain low to the right side.  They thought it may have been appendicitis or diverticulitis.  Never confirmed.  I went on antibiotic therapy, got better and went home.  Did follow up cat scan in january to find the source.  Doc could not determine.  The results showed a benign cycst on liver.   Now i am wondering if it really is benign.  Do they know right off from a cat scan whether it is benign ir malignant?

Is having a cocktail ok with colon cancer?   Think i could reeeeaaalllllly use one!

Always good, trying to find humor in this somewhere!

LindaK.
Posts: 490
Joined: Apr 2013

That was one of my husband's first questions.  His oncologist said he could have a drink or two (and held up his fingers indicated a small size) as long as he could tolerate it.  When he was getting Folfox, he could not drink anything cold for 3 or 4 days after the infusion.  He did not have much nausea and did enjoy a drink or a beer once in a while.  It didn't seem to have any adverse affects. 

I can't recommend it, but I would think it's OK now since you have started any treatment yet.

I'll toast to you when I have a glass of wine later tonight!

Linda

Mary1864
Posts: 39
Joined: Feb 2015

Starting off friday night with a chocolate shake!   End the day with a Glass of wine!  

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annalexandria
Posts: 2573
Joined: Oct 2011

hang in there!  You are in what is one of the toughest stages of the journey, imo.  It really helps once you get a plan in place and start working on getting rid of this crap.

I too had a large tumor that ruptured the colon, and I did end up with peritoneal implants, as well as seeding in other areas.  But these were all removed in a series of surgeries, and I have been clear of disease (NED=No Evidence of Disease) for over three years.

So there is hope.  And we will do all we can to support you through this.  It's a hard path to walk, but you don't have to do it alone.

Big hugs~AA

Mary1864
Posts: 39
Joined: Feb 2015

It is easy here to say things....and share my fears.  Thank you.

Mary1864
Posts: 39
Joined: Feb 2015

Your post...that you are ned.   I know how ignorant i am right now to what is in store...but to read how people have made it through multiple surgeries and chemo...i feel hope.  I sat in surgeon doc office on monday and had a panic attack...i am not going to make it through this.

 

Then i joined this network and started reading the stories of endurance and bravery.  I will read these posts as much as i need to remind me that surviving this is possbile.

 

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

You're braver than you think, we have you're back.

Easyflip/Richard

John212's picture
John212
Posts: 116
Joined: Jan 2015

Welcome to the club no one applies to join. As someone else mentioned, this early period of discovery can be terribly wearing and once you have a plan of attack in place, you'll feel better. Doing something concrete is always more satisfying than just worrying and getting yourself to one test after the other. My case may have been simpler than yours but I'm another who can point to a successful attack of surgery followed by chemo. It wasn't a joy ride but it made things better. I wish you all the best in your journey.

Stick around. These are some good folks here.

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

Hi, Mary.  A quick note from an 8 year survivor of metastatic mucinous adenocarcinoma of appendiceal origin, with much spread throughout the peritoneum:  if this originated in the appendix, or you have peritoneal spread from a rupture, please see an appendix or peritoneal surface malignancies specialist!  I go to Dr. Paty at Memorial Sloan Kettering.  Most oncologists, even experts, don't know this cancer ( it's too uncommon.)  It is not treated like routine colon cancer.  Get an expert involved before chemo or surgery.

You are in the whirlwind phase; life will settle down (we've all been in your shoes.)  Ask questions of us, of your drs.  Push for explanations.  If you have any questions you want to direct to me, I suggest you send a private message, as I don't get on this board as frequently as I used to.

Wishing you the best,

Alice

Caitibug01
Posts: 1
Joined: Feb 2015

My husband was just dx 1/29/15 with stage 4 colon cancer that started in his appendix he had right large colon removed along with 3 sections of his small bowel 7/12 lymph nodes positive poorly differentiated cells all grew on the outside of his colon the dr says it's as bad as it can possibly be but in the same breath tells him he can have him in remission by the end of the year he starts chemo Friday hus dr is using "the big guns" once a week for a year there will be four meds used how can his body handle that much chemo any help would be appreciated mona

 

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

Mona,

Please, please have your husband consult an Appendix Cancer specialist before going any further.  The treatment for appendix cancer is not identical to that for colon cancer.  Growth outside the colon is usually treated with some sort of Intraperitoneal Chemo (HIPEC or EPIC.)  I know.  I'm a 7+ year survivor of Stage 4 Appendix Cancer (mucinous adenocarcinoma of the appendix.)  Click on my name to see my story.

I'll send you a private message to make sure you see this.

Alice

Trubrit's picture
Trubrit
Posts: 4900
Joined: Jan 2013

It is good to hear that you are about to start the chemo.  You will love the port (once its all settled in the chest), it saves those veins and accessed properly, doesn't even hurt. Ask for a prescription for Lidocaine Gel, or have them use the spray right before they access the port. It really helps. 

It is normal to feel tired after major surgery. The body is still trying to revover.  They do like to wait about six weeks post surgery, so you're on line for that. 

You are also right to tell your husband that it will never be the same again, but it will be normal. You both have to find that 'new normal' place. Cancer will always be a part of you. Hopefully the chemo will rid you of the actual Cancer, but it will live with you in your head.

Keep visiting us and we will help you along in this journey.

Sue - Trubrit 

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hi Mary, I remember that feeling.  Terrifying is a good word.  Someone on here said these words to me and this is what helped me "cancer is not a death sentence, many people heal or live for a really long time with routine treatment".  I think we all have this 80s way of thinking where everyone dies.  I think it was PhillieG who said it and those were the best words that I ever heard.  It didn't help me that day but it helped over time.  Once treatment starts, you'll be a lot calmer because you feel like you are helping yourself.  I hope time passes quickly, it always seems to slow down when we're at our most stressed.  

Helen, mother of a 26, 17 and 16 year old and a grandbaby age 2.

2 years in and now 2 years out=)  

Really important to talk to your daughter to let her know cancer does not have to mean a death sentence and that you will do your best in treatment and recovery.  I didn't and that was disastrous, my middle one had a serious meltdown, poor kid.   

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