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Just found out I have cancer

ScaredButFighting
Posts: 21
Joined: Nov 2017

40 y/o male.  Had a colonoscopy yesterday (Friday) following abdominal pain and blood in stool.  I pushed for the scope, Dr thought just IBS.  Lo and behold, a large mass in the descending colon (about halfway up), so large it almost blocked it.  I await the official word that it is cancer based on biopsy, but doc said it certainly looks like cancer.  No staging yet, obviously.  The past 24 hour have been a whirlwind of tears and disbelief.  I know I am supposed to be upbeat and optimistic, but I am full of despair and fear that it has metastasized and I am on a short clock.

I have a consult with the surgical oncologist in 10 days, which seems like an eternity.  

How do I tell people at work?

Should I get different opinions on best path forward?  Who do I even call?  Our local hospital is pretty good, but it isnt MD Anderson.  

How do I keep my head right?

 

Thanks for listening.  I want to live.

Cinnamon Jones
Posts: 21
Joined: Feb 2017

I was in your shoes last year and was so afraid.  Between the consults and tests it seemed like an eternity.  The doctor who did the colonoscopy also told me he was sure it was cancer.  That was October 10 and I didn't have surgery until December 1.  But l learned that this type of cancer is usually slow growing so I had time to get things in order.  By the time I had surgery I just wanted it over.  You will likely have a CAT, maybe MRI.  And you will know more about your situation before you have surgery.  

As far as work goes, I told my manager and then sent out an email to my coworkers.  I didn't want to have to repeat my situation over and over.  The support was amazing.  

The surgery went amazingly well as.  I was actually planning my funeral at on point I was so afraid.  I was discharged on the second post op day.  No colostomy.  I had stage 2a and chose not to have chemo.  I will follow up annually and that is scheduled for January.  I'm in MN and went to the U of M.  Thought they were just excellent.  Also consulted with the Mayo Clinic .  Prays for peace and a good prognosis and speedy recovery for you.  There are a lot of people on this forum to support you.  

ScaredButFighting
Posts: 21
Joined: Nov 2017

Thanks, CJ.  Your words mean a lot - you have no idea.

 

ScaredButFighting
Posts: 21
Joined: Nov 2017

Forgot to add -CT scans monday

Tunadog's picture
Tunadog
Posts: 231
Joined: Mar 2017

The journey is especially hard mentally in the beginning..

Keep thinking positive.

Peace

NewHere's picture
NewHere
Posts: 1072
Joined: Feb 2015

Sorry you are here, but it is a great place to be.  First thing it try to pause for a second and breathe.  You are young and that helps. 

Not sure where you live, but it is always a good idea to go for a second opinion if possible.  (You may wait until you get the news.)  Put your questions and concerns together.  Ask ANYTHING that pops into your head.  Get comfortable.  (I am going for a remote second opinion at Mass General right now, Cleveland Clinic and Dana Farber also have these available, as do some others.  MD Anderson will do it also.  They are a bit more complicated.  And in some cases you need to fly down for 3-5 days.  But to put your mind at ease, could be worth it.)  Mass General is $850 for remote second opinion.  It takes about two weeks to get a second opinion.  (Mass is Top 15 cancer hospital, #11, in rankings.  MD Anderson is #1, MSK is #2, Dana Farber is 3 or 4 I think.)  Heck, start it now.  (Not sure where you are located)

Do NOT get caught up in stats and prognosis.  They are based on stats which include older people who cannot have treatment when cancer is discovered and many other things which do not apply to you.  Also the stats are based on data that is usually five years old.

Do NOT get caught up in too much Dr. Google.  There is a ton of snake oil out there preying on fears.  Try to avoid it or believe it.  (I am actually pursuing some alternative treatments now, long story, but it is not some of the total BS being fed out there.  We can discuss this more.)

Before my diagnosis the thought of cancer and chemotherapy was the heinous monster under the bed which chilled my blood frozen.  Once you are in it, it is not as bad as the imagination (at least for me.)  

I had no symptoms, found by accident about three years ago.  Had surgery, chemo, met to lung (which was there from beginning), surgery for that.  (Due to a rare met, I am back in the game as as of a few weeks ago, but MANY here have had success, even with advance cancers.  Stage IVB types.)

Try to exercise and eat well to get in shape, the better shape you are in, the better you can deal with whatever is coming up.  I prepped for my lung surgery by walking and running, check in to check out was under 36 hours, including the surgery to remove a chunk of my lung.  It was easy (for the most part.)  Was walking three miles a day two days later.

Again, try to breathe and take care of yourself.  

Again, sorry to see you here for obvious reasons, but welcome.

ScaredButFighting
Posts: 21
Joined: Nov 2017

Thanks NewHere and TunaDog.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I was there back this past June. I had Oncology and Radiation consults within a week and it took another two weeks to get second opinions at Dana Farber Cancer Institute. It's best to move as fast as you can even though it may not seem like it's fast enough. The scans will either confirm or rule out spread and they should be able to have a clue about regional lymph nodes.  I could tell you to relax and not be anxious but I know how I felt and it's hard to relax and not be anxious. I did find that exercise helped in many ways.

My approach to telling others is that I told close family and relatives, my manager, and very close friends. I revealed it to other coworkers later on. One coworker had cancer a year before mine so I chatted with him as well. The forums have been a source of great help and comfort because there are so many that have gone before me and many that were going through the same process, some a week or two ahead of me and some behind and you learn what's coming from those ahead of you.

Bellen
Posts: 281
Joined: Aug 2016

Hello - I'm sorry that you have joined our group - but this is a great group who are so supportive and knowledgeable.  I always make a list of questions each time I meet with my Oncologist, and go over my symptoms.  I was diagnosed last summer with CRC with multiple liver mets - told inoperable.  My cancer was initially found through an abdominal ultrasound which saw spots in my liver, then a CT scan, liver biopsy, then a colonoscopy.  I have been on a chemo combo called Folfiri with avastin.  Many group members have had Folfox instead of Folfiri.  Of course, I have unpleasant side effects at times that I have had to deal with.  I believe that many Cancer Centers use similar treatments for our type of cancer - of course, if there are mets to an organ, your chemo may be a combination of chemos - a cocktail.  This group is great for helping with suggestions, type of treatment they had, overall helping.  I also sent an email to everyone explaining that I was diagnosed and having treatment - also mentioned that I didn't want to talk about my illness when I was out socializing - just have fun and enjoy myself.  My friends all respected that and when I feel good I get out as much as I can.  I wish you all the best and post any questions, etc that will help you through this journey you may be on.

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

and counting high at that. I'd say at least 20. 

I was diagnosed exactly five years ago this week.  Because of an almost complete blockage, I had my surgery within two weeks. Oh, it was a long two weeks. Filling my head with all of the horrors that a Cancer diagnosis brings. I'm going to die! I'm going to have chemo! I'm going to lose my hair! I'm going to die! Oh yeah, the 'I'm going to die' part came up over and over again, until I thought my head was going to explode (and I mean, I literally thought my head was going to explode). 

Because of the blockage, there was no time to do any research into a surgeon. I live in rual Nevada; the big city (hospital and Oncologists) 600 miles round trip. So, off I went for surgery. Successful, yes. Thank you Mr. Surgeon. 

Then it was back to the big city for many appointments. Oncologist - assigned to me by my PCP. Radiatoin Oncologist - assigned to me by my Oncologist. Another surgery to place a port - God bless that port. If you're offered one, GET IT. 

Then there was chemo. Six months of it. Then there was Radiationa and 24/7 chemo. Six weeks of it. Then there was CT scans. Then there was Liver met. Then there was surgery. Then there was THREE YEARS SEVEN MONTHS NED - No Evidence of Disease - Those beautiful words. 

Now I wait for my next Oncology visit on the 27th, and expect to hear those beautiful words 'you have no evidence of disease', again. 

So yeah. Rough journey ahead. Whats that road sign 'BUMPY ROAD AHEAD'  

Those first few weeks though, my oh my, they are tough. All the dark thoughts flooding in. Terrible time! But, as soon as you get started on scans, surgery, treatment, you start to feel more in control - for the most part - Doing something about it, ireally helps put it into perspective. 

Being here on the forum, meeting these wonderful people, some are in the fight, some are surviving, some have loved ones fighting, and some loved ones pop back in now and again to share their thougts. You have it all, right here.  You will find someone at each point of the journey who can relate, and help you though. 

Take the time to feel the pain, the shock of this diagnosis. You life is about to change, but your life is definitely NOT over. Stats are old. Out of date. We have come a long way these past ten years. Many, many Stage IV survivors, and I am one of them. 

Chin up. Onward and upward, new friend. You will do well. 

Tru

LearningAsIGo's picture
LearningAsIGo
Posts: 27
Joined: May 2018

I needed to come here and read this today. Thank you Tru for your post, I’m so appreciative already for this group, with my new diagnosis of Stage IV with mets to omentum. One day at a time, and I’m latching on to positive outlooks as much as possible! So many unknowns, but I have to believe this is going to be okay. Thanks again -B.

ScaredButFighting
Posts: 21
Joined: Nov 2017

I am in tears at all the goodwill, love and support that is being offered here.  Thank you.

This is such a strange feeling.  Cancer is a thing that happens to OTHER people, not to me.

 

ScaredButFighting
Posts: 21
Joined: Nov 2017

Sorry - that probably sounded rude.  Not my intention.  It just feels like an out of body experience to actually have cancer.

 

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

So sorry that you are in this situation. It is a shock to your (our) system, when you hear that you have a canccer. I was diagnosed with stage 3C colon cancer last May. I had surgery to remove the cancerous portion of my colon, along with attached lymph nodes. I have just completed 6 months of chermo, and feeling positive that it is gone from my body. Why dwell on the the worst case scenario without having the facts? I also went for a second opinion, which I felt more comfortable with. You could discuss with people in your geographical area, as I'm sure you could be referred to the best doctors in your area.

I am fortunate to live just north of Boston, so Mass General Hospital is where I hade my surgery and follow up treatments.

With regard to my co-workers, I told those that were closest to me firsty, and as time went on I asked them to share the news with coworkers I really wasn't that close to. It is and will be a learning curve on how to deal with this diagnosis; every one of us has dealt with it in our own way, but wer are all here to support and share our thoughts and experiences with each other.

 

Good luck and look at the glass as being half full not half empty!

 

NewHere's picture
NewHere
Posts: 1072
Joined: Feb 2015

 It just feels like an out of body experience to actually have cancer.

 

Lily Flower's picture
Lily Flower
Posts: 248
Joined: Jul 2017

Sorry that you have to join this forum but this is a great place to come to. We have many wonderful and caring people here that will give advice and support. Some are patients (like me), some are caregivers and some are survivors. 

Colon cancer is treatable and even curable. You will have to go through some blood tests, Ct scans and MRI before the suregery. Then followed by adjuvant chemotherapy. 

Being scared is normal. When my GI doctor first told me that I have a tumor in my colon and it didn't look good. I was stunned and I was already planning my funeral in my head. That was back in July. Since I had surgery and I'm currently half way done with my chemo.

Don't read up the WebMD. I almost gave myself a heart attack reading it right after my tumor was discovered. I know it's easier said than done but worry will only stress yourself more. I know waiting is the worse. Keep yourself busy at mean time. You will beat this! 

I only let few of my close coworkers know. Eventually everyone noticed I was missing and curious and wanted to know what happened to me. They texted and FB messaged me. After my surgery I posted on my FB. By that time it didn't bother me for everyone to know. 

Annabelle41415's picture
Annabelle41415
Posts: 6150
Joined: Feb 2009

First off it's good that they found what was causing your problem.  Second, you need to find out from a CT scan what they find and then the staging.  Third, you are going to need an oncologist that deals with your specific cancer and can put you on a treatment that can be successful.  Fourth, You need to get a great surgeon.  One that is going to cut that out if that is what is recommended.  Fifth, you need to come here and express your concerns and worries so that we can help you get through this.  Please keep us informed.  We can help you and give you much needed experience and advice as we have all been through it  - maybe not all of you will be going through but most of it.  Wishing you well and praying for you.

Kim

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

    I recall all too well the day I found out,  June 19. I was a complete mess, still am to some degree but a little more polished and composed. Your about to go through a lot of life changing events.  There is no way around it but keep in mind that what ever you do.  DO AS THE DOCTORS TELL YOU!   Most of them have a lot of experience, training, etc, and know exactly how to handle this.  We don't.  No matter how much reading you do you'll never catch up on 10 years+ of education and training.  If you're given an option take the one that results in more treatment, not less.  The better you are at that the better you'll finish.

  I'm sure you've read survivor stats.  We all did at first. Here are some facts they don't disclose that skew them.  After talking to the medical staff I've learned a few things. A good portion of the people who don't survive don't because they did not keep all their appointments, did not take all their pills, or wandered off thinking some ancient chinese herb or some other unproven nonsense is going to cure them.  Two examples.  While I was going to radiation I was told a lot of people quit before they're done.  Another is while waiting to pick up a load of chemo pills I saw a short clip on the TV in the waiting room that said only about 20% of the prescriptions issued are taken as prescribed.  Also, a number of those survivor stats are based on older people (70+) getting this from 20 years back. Not to seem morbid but some of them were going to die within the 5 or 10 years anyhow plus what we have now in procedures is a lot better.   At 40, even if it's stage 4 you'll make it through just fine.  Age and physical make up matters a lot. 

  Dealing with others whether it be wives, husbands, relatives, co-workers etc, keep this in mind.  They do not have cancer, you do. That was a mistake I made expecting a certain level of compassion  That's impossible and until a person has this there is no comparison to something else.  You'll get mad, sad, and all sorts of other things.  I've got a garage door and dryer with big dents so a little anger is perfectly fine and normal. 

  Time will be your enemy for the moment.  It's also ok to push for sooner appointments.  Be dramatic if need be on the phone. It worked for me in the beginning to get some of the tests done quicky.  Depending on several factors you could have an ultrasound, PET scan, CT scan, MRI, or others.  Purpose is to get the treatment ball rolling as soon as possible. 

  The treatments can start with surgery or could be radiation and chemo prior to surgery.  It will depend on where the tumour is and of course its size and so forth.  In case you're wondering, if yours is up as high as you indicated you won't end up with a bag.  That's also everyone's big fear.  I had chemo and radiation at the same time up until Sept 11.  I then had surgery which was just 2 weeks ago.  Side affects from any of that can vary wildely from person to person.  Some of them will sneak up on you without you realizing so it's a good idea to have someone monitor your drinking/eating habits.  I lost my sense off thirst and hunger plus the added bonus of getting forgetful as someone with dimensia.  I'm not convinced it's tied to the chemo entirely since a good portion of your thoughts are going to be one thing, I've got cancer. It's inescapable and will cloud your judgment and just about everything else for a while until you've got solid answers and know the course of action.  If you've got a hobby or some activity try to put as much time to it as you can.  It's not perfect but you'll find it can distract you from this for a while.

  I'm now waiting to start the post surgery chemo and ran head on into a disagreement between the surgeon and oncologist.  The surgeon said there was no lymph node involvement and it didn't appear there ever was.  The oncologist said he didn't buy that since the chemo/radiation I had prior to surgery MIGHT have masked it.  He said it was exceedingly rare to have a tumour the size I did and it not be invasive.  He wanted to give me the standard stage 3 follow up.  The purpose of which is to ensure the next PET scan doesn't show it's moved to greener pastures.  I told him I know enough to know I don't know so what ever he suggests I'll go along with. For the next four to six months I'll be a little miserable again but in the long run there won't be any regrets.  My comfort is knowing I've done what I'm supposed to.   

  

abita's picture
abita
Posts: 585
Joined: Dec 2017

Thank you! I had thoughts that maybe that is why the stats are as they are since my surgeon and oncologist seem bery confident I can be cured and make it through. I know there are always possible factors to mess that up, but I feel confident that this is all worth it to be a survivor. I also understand why some won't do the finish up chemo after the surgery, but I plan on getting mine. I want all possible bad cells killed. I have two infusions down. My colon tumor was removed before chemo, had to be. After my 4th infusion, if the liver lesions have shrunk enough, I will have surgery to remove them, then finish the last 8 infusions. It is tough and I have my bad moments, but I try to stay positive. I am lucky that my surgeon and oncologist keep me feeling confident.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I think that I've mentioned this elsewhere but it was the same thing between my surgeon and the oncologists. The surgeon thought that I could skip the Oxaliplatin because of the pathology report and the oncologist indicated Oxaliplatin because it's not possible to know without have taken biopsies on the suspicious lymph nodes.

ScaredButFighting
Posts: 21
Joined: Nov 2017

Again, thank you all.  Your words are giving me hope and courage (between bouts of tears and rage).  

 

betula's picture
betula
Posts: 78
Joined: Mar 2017

I am sorry that you have to be here but you have come to the right place.  My husband was diagnosed with rectal cancer Dec 13, 2016...almost a year now.  Seems like a blurr. This board has been invaluable to me for questions, information, and support.  

I cannot even begin to put into words the roller coaster of emotions, etc that we went through.  Just know that what ever you are feeling is okay, this is tough road!

 

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

Sorry you are going through this, but I was in your exact place over 11 years ago at age 39 (see, not the death sentence some might think).  I too had blood in my stool that prompted a colonoscopy that found a large mass nearly blocking my colon in almost the same place as yours. After surgery, I received the dreaded news that it was Stage 3 cancer due to some mets in nearby lymph nodes. I underwent 6 months of chemo and was declared NED until the cancer came back as Stage 4 in 2013 as mets to the liver. I again underwent surgery and another 6 months of chemo followed up by 1.5 years of maintenance chemo. I was declared NED again until it returned this year as mets to another lymph node and in the vertibrae. I just completed another standard chemo regiment and am now doing 1 year of maintenance chemo but am NED for the third time. I feel pretty good (or my new normal) despite the lingering fatigue that goes along with chemo treatments.

Just remember, everyone is different and how they respond to treatment is different. Do not let any statistics get you down because they don't always apply to every situation. How your body responds to cancer and treatments has A LOT to do with your attitude and mental state. Not sure how you feel about faith, but I can honestly say that this whole experience has definately brought me closer to God and to my family. I don't know how those who do not believe in God are able to cope with the struggle of having cancer. One of my favorite scripture verses that really helped me put perspective on my own battle is Joshua 1:9 "Have I not commanded you? Be strong and couraeous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."

Even though this is not something you know how to cope with now, we are all here to support you through this fight. I will be praying for good results on your upcoming tests.

ScaredButFighting
Posts: 21
Joined: Nov 2017

Thanks again.  Just had CT scans and fought to get my surgeon appointment moved up to tomorrow.  I have no problem being a squeaky wheel to take care of my health!

 

NewHere's picture
NewHere
Posts: 1072
Joined: Feb 2015

Good move getting it done as squeaky wheel - and early on when being hit with this news is always a good time to do that to get answers and plan.

caregiver3
Posts: 46
Joined: Oct 2017

My husband was just diagnosed in September.  I know what it feels like to just be hit with all of this out of the blue!  I'm still learning myself about this, but wanted to wish you well and hope that you get answers quickly!! 

ScaredButFighting
Posts: 21
Joined: Nov 2017

Ct scans indicate no evidence of spread beyond the primary mass.  Clinical Stage 2.  Surgery in a couple of weeks.  Happy to have a plan, and ready to kick the s&!# out of this thing.   Surgeon well regarded, but am also working on getting second opinion. 

 

 

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

That was quick and a good result considering the situation.  Once they do the surgery you'll follow that up with chemo afterwards in a few weeks or so.

ScaredButFighting
Posts: 21
Joined: Nov 2017

having a hard time keeping it together.  I dont care about me dying as much as I dont want my wife to be sad.  I am scared of years of pain and suffering I would drag her through.  Found out my cancer is signet ring cell, so my odds are getting worse.  i am so sad and scared, and in denial.  I keep wishing I lived in the world of a few weeks ago, when I kind of thought this was IBS.   surgery in a week

Tunadog's picture
Tunadog
Posts: 231
Joined: Mar 2017

I know how you must feel.

Keep it up, you'll do just fine.

Peace

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

  I was in a similar position . I was 48 and had a mass in my transverse and descending colon. GI could not get the scope past it. i had immediate surgery due to the likelihood of colon rupture. It turned out to be an aggressice stge 3 tumour into 6 nodes. My surgeon thought he got it all but was unsure if it had reacged the fatty tissue at the base of the flange > I had a year of intense chemo and have been cancer free since then.  22jan 2018 will be my 20th anniversary of surgery still cancer free. Best of luck Ron.

ScaredButFighting
Posts: 21
Joined: Nov 2017

Had surgery a couple of days ago to resect cancerous portion of bowel.  Unfortunately, they found multiple mets in the peritoneum that werent seen on CT, and sewed me back up.  Stage IV Signet Ring Cell.  Start chemo soon.  So lost and hopeless.  I’m only40.  I‘ve lived a resonably healthy life and I dont want it to be over.  WTF?!?!  (Tears and expletives)

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Do you know what your cancer mutation is? There may be some targeted options based on mutation.

ScaredButFighting
Posts: 21
Joined: Nov 2017

no I dont know.  I meet with oncologist in a week.

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

Allow yourself the horror of this news, and then, when the time is right, pull out those fighting gloves. You ARE too young, and this doesn't need to be 'the end'. Once you get past these new, raw emotions, get yourself into a good place of positive thoughts and determind fight. 

We are here to help you through, if only with words of encouragement. 

Sending my best thoughts and good vibes. 

Tru

ScaredButFighting
Posts: 21
Joined: Nov 2017

Thank you for the kind words.  How does one maintain hope in the face of very tough odds?  

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I'm not facing very tough odds - just a lot of long and often painful treatments. But I do see lots of folks that do fight very hard against very tough odds. There's a thread on Colon Talk called Wives of husbands with Stage IV Colon Freaking Cancer and there are a lot of brave women over there fighting for their husbands. You might read through Zig2017's notes - her husband went through normal stage 3 treatments and then they found mets while doing Adjuvant Chemo. He has BRAF V600E which is extremely aggressive and has poor prognosis. There are other mutations like KRAS G12V that have poor prognosis too and you'll find individuals and spouses doing their best to fight through these more difficult mutations. So these folks might be good to chat with to see how they manage. There are, of course, folks here with stage 4 (or that had stage 4) and they're folks to talk to as well. And of us at stage 3 or 2 could become stage 4 as well so we do have anxieties and worries about survival.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=18704&p=468442&hilit=wives#p468442

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

I'm going to beat this, unless I don't. 

So yes, you're right, it is a contradition. BUT, that is exactly how I face life. I believe I'm going to be one of the lucky ones, while knowing that my present, good, situation could change on a dime.  Its a 'place' you have to find, in yourself. It doesn't happen over night, you have to look for it, sometimes you have to look deep. Some folks never find it.  Does it mean you will beat the Cancer? No, but it means that you will have joy in the 'hope' of beating Cancer. 

If I am going to die, then I damn it, I am going to die happy. 

But first, take time to come to terms with the news you've just recieved. Its OK to hurt. To cry. To be angry. Just not to wallow in it, because it will bring you down, and when you're down, your body won't have what it needs to fight. 

Upward and onward. 

Tru

beaumontdave's picture
beaumontdave
Posts: 976
Joined: Aug 2013

We have some long-term signet ring cell survivors here, maybe they'll see this and chime in. It's a tougher road but others have walked it and are still chugging onward. Allow yourself to believe the best possible results can happen and otherwise stay in the moment, taking each day for what it can be. Live in the now, rather then trying to stare down the future. I always told myself "hell, a big rock can come out of the blind spot of the sun and take us all out, any time, and then all that time I spent scared and worrying will just be a waste". It's crude, but it gave me some perspective, I hope you find some as well, however it may come...................................................................Dave

Annabelle41415's picture
Annabelle41415
Posts: 6150
Joined: Feb 2009

Can very much understand your issues and concern.  It's great news that it has not spread.  It sounds like you have a team in place and they are already planning the treatment and surgery for you.  If surgery is in a week your head has to be reeling and now it's going to be a roller coaster for one appointment, surgery, tests, treatments and more tests for quit some time.  Just try to take a breath while going though this, come on this board and let us know how and what is happening, and get support from us.  We are your new extended family for months on out so get used to us - we are here to help.  You will get a lot of knowledge and support here.  Wishing you the best with all coming up.

Kim

Mickeyclaude's picture
Mickeyclaude
Posts: 21
Joined: Dec 2017

Hi.i was diagnosed nov 3 and here I am one week after the surgery already. The surgery was laparoscopic and minimally invasive.i am 47 years old and can honestly say that the c section I had may have been worse. I meet w my surgeon on the 14th again. I am not privy to the different types and stages and had never even heard of signet...I hope that we all are on the road to long lasting health and I am thankful to read these posts during my insomnia...I get this often since my diagnosis.

 

 

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

Welcome to the forum

AS I mention in reply to your other post, we would love to see you post a new thread on the forum home page. That way we can welcome you here, and answer reply to you specifically.

Here is the link:  https://csn.cancer.org/forum/128

I had terribly insomnia during chemo (slept surprisingly well during radiation/chemo) and found that a guided meditation CD helped me no-end. 

Looking forward to getting to know you. 

Tru

Lily Flower's picture
Lily Flower
Posts: 248
Joined: Jul 2017

I'm so sorry to hear SBF. Just know that we're all here for you. Although we may not be there physically but we're definitely here on this forum. Don't look at it as a death sentence. Believe me we all do at first but medicine have improved over the years and cancer can be cured. Having a positive attitude plays a big part in healing.

ScaredButFighting
Posts: 21
Joined: Nov 2017

started on FOLFIRI a few weeks ago, have had 2 treatments.  Good news is CT and PET scans show no distant mets.  Also, the peritoneal mets were localized as of time of surgery. So docs think I am a good candidate for HIPEC, which isnt curative, but maybe I’ll live a bit longer.  We’ll see how it goes.  

Hard to have hope - I’m a glass half empty guy to begin with.

What an absurdity life is.  I have no faith to lean on, either, and everybody wants to convert me.  I dont resent it, I know they mean well, but I am just not a believer.  So here I am, with a great life behind me, only suffering in front of me, and it all means nothing.  What a joke

 

 

PamRav's picture
PamRav
Posts: 244
Joined: Jan 2017

Great life behind you?  Well that certainly counts for something. 

Only suffering ahead?  No no no no that’s not true at all.  You’re going to have bad days for sure,  but they’ll be good ones as well if you’re of the mind to see them   You’re going to run into lots of good people with lots to teach you if you’re willing to listen and learn.   And I’m not talking about religion.  You don’t have to convert to any thing or any religion to see the good out there. 

plsletitrain
Posts: 253
Joined: Jul 2017

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.  

Trubrit's picture
Trubrit
Posts: 4781
Joined: Jan 2013

and I'm sure it looks like its darker clouds ahead, as well.  

I remember how despondant I was when I was told my diagnosis and prognosis. I was so angry at God.  I was two days out from my lbowel resection, and hurting physically; then came this blow, and now I was hurting emotionally as well. 

Being at an emotional low is to be expected, but staying there is dangerous.  I do hope that you are able to find a meaning in your life, that will lift you up, and sustain you through these troubled times. 

You know that we are here for you.

Tru 

 

Annabelle41415's picture
Annabelle41415
Posts: 6150
Joined: Feb 2009

That's good that there is no distant mets.  Hopefully the HIPEC will help.  There have been people on this board that have had this, and I'm hoping that some of them will chime in to help you with this.  You're not having faith is a personal choice, although I've had faith all my life, that is something that you choose.  Don't feel bad about not having it and thinking you should have it.  Make things right with you and your family during this time.  It's time for you to have a good plan with your doctors too and make sure you are comfortable with the treatment going forward.  You are not alone here.  We are all here supporting you.  Wishing you the best.

Kim

Macdougal's picture
Macdougal
Posts: 18
Joined: Dec 2017

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

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

tishy
Posts: 3
Joined: Dec 2017

Need some help.  My sister got only one cycle for CRC. Her tumor is a high grade neuroendicrine of the colon with spread around her liver.  SHe got very sick from

only one cycle of chemo and recovered but has not left the hospital.  Now her oncologist claims she is chemo resistant, for the scan showed growth of her liver tumors.  I thought check

required full treatment first.

He won't 'argue' when I ask about Avastin or other treatment, or how he determines she is chemo resistant.  He has offered her PDL-1 as immunotherapy only and 20% chance it will work.

He snet palliative and then suggests hospice!  He has done nothing for her.  I am desperate, we are trying to find another oncologist and he says all will agree with him!

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