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Mom most likely to be diagnosed with Stage IV Colon Cancer

Cammie88
Posts: 19
Joined: Sep 2013

So let me begin by saying I am terrified.  My mom is my best friend and I am afraid to lose her.  I brought her to the hospital on Friday morning after about 6-8 weeks of off and on vomiting & diarrhea.  After an abdominal CT we were told she had a small bowel obstruction and a small cystic lesion in the pelvic area.  After an NG tube to clear the blockage they decided to do a colonoscopy on Monday.  Turns out to be a tumor causing the blockage and a diagnosis of colon cancer.  Today, surgery to remove the colon tumor and the cystic lesion.  Alone when the doctors came in, I was devistated to learn of 2 colon tumors and the cystic lesion being mets to the ovary.  By the way, the metastatic tumor was the size of a soccer ball and the 2 colon tumors not small (no report on size).  It was confirmed she will need chemo.  Help please, I need some encouraging words and what to expect from post-op day #0.  Thanks

Chelsea71
Posts: 1170
Joined: Sep 2012

Sorry to read this news.  Did she have her entire colon removed?  Does she have a colostomy or an ileostomy?  How old is she and is she in good shape?  

Regardless, she will recover from the surgery and many people can manage their stage four cancer as a chronic illness for many years.  A positive attitude and being in good, strong physical shape are assets.

 

Chelsea

Also, did they remove all the cancer or do tumors still remain?  

Cammie88
Posts: 19
Joined: Sep 2013

Thank you Chelsea.  They said they got all of the obvious cancer, felt the liver and didnt feel anything.  They were able to remove the primary colon tumorand reattach the colon without a colostomy.  She is 72 and has diabetes (very well controlled with insulin & diet) and a pacemaker (for about 10 years).  She gets easily fatigued and has since the pacer and doesnt do a lot of activity.  She was relatively healthy otherwise until this.  As for attitude...it is amazing...I dont know where she gets it!

Trubrit's picture
Trubrit
Posts: 1709
Joined: Jan 2013

You, your mum and family are at the scariest time of the journey; diagnosis.  I and many others have found that once we get a handle on the problem, get the surgery out of the way and start the chemo regime, then the stress level goes down becasue you gain a feeling of doing something.

If you (and mum) haven't done so already, get yourself a couple of note books (I got a school standard one and a pretty one). In one, write down any and every question that crosses your mind about the cancer, the treatment, what is happening to the body and mind, and when you see the Oncologist, go through them one by one. Nothing is too small or to silly to talk about. I always iike to mention how I asked my Dr. if using baby poweder had caused my cancer. He laughed in a friendly way, but I got my answer. 

The second notebook is for your mum. I personally took my vitals (blood pressure, pulse, heart rate) every day, but write down everything. Feel tired, feel sick, eyelashes falling out, tongue got the fuzz, put it all down. Mood swings, emotions, I found it very theraputic to keep a record of what was happenig every day. 

These are just ideas of course. We are all diffenrent, and we travel this journey in our own way, so just sharing what worked for me doesn't mean it will work for your mum. 

You have discovered a great forum. So much knowledge here amoung its members. Please come often, share, weep, rant, we're here for you, and thus for your mother. 

Oh, and try your bet to keep your stress level down as that will really help mum. Hard I know, but it will be for the best. 

Blessings!

Cammie88
Posts: 19
Joined: Sep 2013

Thnk you too Trubrit.  I am sitting here in the hospital room, my mom only about 4 hours out of surgery and about 5 since the doctors talked to me.  Mom is still out of it and is not yet aware of the complete diagnosis & need for chemo.  I am trying to stay strong and not cry & keep down the stress but I am not succeeding.  I keep thinking how I will tell her when she wakes and sees it all in my eyes....

This is helping a little & I am sure it will only help more as time continues.  I will be here often & look forward to the support I receive now and will hopefully provide in time

Chelsea71
Posts: 1170
Joined: Sep 2012

It is very good that they got all the obvious cancer.  The situation could be much much worse.  You're wise to try and pull yourself together for your mom, once she awakens.  Try and be positive.  Take it day by day.  The main goal moving forward will be to get your mom up and walking and once she is ready, home from the hospital.  It will take time for her to recover from this surgery.  Chemo will be several weeks down the road.  Look at the positives.  It's great that she has lived into her seventies.  You wouldn't believe the people here at CSN that were diagnosed in their thirties, forties and fifties.  Plus she could still have many more years ahead of her.  Just take it all one day at a time.  Don't think ahead.  Focus on each day. Right now concentrate your efforts on showing your mom that you are in control and that you are going to be there for her.  You may find it feels like you are taking on the parent role.  Remember, it could be much worse.  Ignore the doom and gloom speech you may hear from the doctors.  The reality is that many people doing very well with dealing with their cancer long term.  It is also possible that she will have chemo and the cancer will never return.  A lot will depend on the pathology report which should be ready in 10 - 14 days.  We are all here for you and your mom.  Hang in there.

 

Chelsea

 

Trubrit's picture
Trubrit
Posts: 1709
Joined: Jan 2013

I know how we alll used to hear the word 'cancer' and see it as a death sentence, but that is not so, not for allot of people; not any more.

OK, we're not pulling wool over our eyes, but we've come a long way with threatments sincee those days when there was no hope.

There is hope, and your mum needs to look at this as a trial to overcome.  

Cry now, while mum is still sleeping. Get it all out, then when she comes around, be positive for her and for yourself. 

'We'll get through this mum, day by day'.  Tell her what a wonderful forum you've found, with many survivor stories and mcuh support, because thats what we are here for; love, support, information and sadly sometimes  mourning. 

Still here for you.

SUE

lp1964's picture
lp1964
Posts: 912
Joined: Jun 2013

...a million times tougher and stronger than you think and so are you. You are not gonna shock your mom with any news, trust me. Just collect your thoughts, find a convenient time, a quiet situation and tell her what's gonna happen. Don't worry about statistics and survival rates . Just concentrate on the next thing. Somebody said here: you don't need to see the entire staircase to get to the top, only the next step.

Stay here, ask questions and tips, thousands if you need to. People here are kind and will never get tired to help you two.

Bless you both and let us know.

Laz

Cammie88
Posts: 19
Joined: Sep 2013

Thank you Laz!  I am learning how tough my mom is.  She always has been but her attitude and her pain tolerance amaze me every second.  I am also stronger than I realized.  I had found ways to talk to my mom and dad as well as other family members, both as a daughter and loved one & with my medicall experience (although knowledge of cancer not being all that strong) .  it is funny that you told me not to worry about statistics because that is what I have told my family.  My brother (who I am extremely unhappy with at the moment) is worried about prognosis.  What can I say to him to get him off that mindset?

 

Christie

traci43's picture
traci43
Posts: 448
Joined: Jul 2007

Cammie - I was diagnosed 6 years ago with stage IV at 45 years old.  Mets to ovary (5 pounds!) and omentum and one small primary tumor in the colon.  I had surgery to remove tumors and chemo and a couple of recurrances since then, but I'm still working full time and living life.  As others have said it's a scary time until you have a game plan, which will likely include chemo.  There are so many people here with lots of good information to help you, your mom, and other newbies.  Take a deep breath and take things day by day.  I hope your mom recovers from surgery and does well with the chemo.  The standard treatment, while not fun, it relatively tolerable for most people.  Some folks even work through the treatment.  More and more, Doctors are treating even stage IV colon cancer as chronic and not as just pallative.  We'll be here when you need us.  Traci

Cammie88
Posts: 19
Joined: Sep 2013

Traci,

It is encouraging to hear of all of the successes and survival.  I am so happy to hear  that you are living life.  Thank you for the Chemo "warning"  mom is more afraid of that I think than the diagnosis!

 

Christie

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Annabelle41415
Posts: 4411
Joined: Feb 2009

This will be the most scariest for you as you know nothing that is going on, plus there will be many more tests taken without delay because of the size of the tumors.  Much is to be happening for you all within the next couple weeks with many tests, scans, blood etc.  If someone could be with your mom during these visits it would be helpful because you almost need a second pair of ears.  It's going to be hard and it will be hurry up and wait.  I'm glad that you found this site and we can help you get through most of your questions.  Wishing your mom the very best and hoping for a speedy recovery.

Kim

Cammie88
Posts: 19
Joined: Sep 2013

To everyone - I am so overwhelmed by the love & support I feel already.  The stories of hope & encouragement are & will surely help my mom, me & the rest of my family.  My mom & dad both have incredible attitudes.."it is what it is"  and that is wonderful.  I am getting there and we will fight this with all of you.  I  have a brother who is not always the most supportive & doesn't call often.  any suggestions on how to get yim on board & more involved?

 

Thank you all again so much.  I am heading to bed for now and hope to wake with fire & fight!!!

Christie (Cammie)

lp1964's picture
lp1964
Posts: 912
Joined: Jun 2013

Just want to warn you that the "it is what it is" attitude is not enough. You hear hundreds of missdiagnoses, mistreatnents, misread tests and scans, misinformation about diets, supplements from doctors and nurses. In my short little journey I had three pretty major mishaps sofar and if it wasn't for this forum I would have been screwed. Always get second and third opinions, always. And let this forum no what's happening. Professionals are busy people too and make mistakes like anyone else.

Las

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

We use "it is what it is" in my family too. To me, it means you zip past "Why me?", "poor me", "it's not fair", "I can't believe this is happening", etc. It says, "However I got here, this is where I am now. Where do I go from here?" It provides a strong basis for forward-looking decisions.

 

 

Cammie88
Posts: 19
Joined: Sep 2013

Kim,  

It is so helpful to hear from experience.  I don't think there is any chance of any appointment being attended alone by mom.  I already have a notepad for questions and answers receive (thanks to recommendations from others here.

Thanks for the well wishes...they are working!

 

Christie

Scubadan (not verified)

All the comments are right on target. You've come to a great site. My only addition to the spot-on advice is the first step, after giving yourselves a few days for letting all the overwhelming questions and feelings soak in, start with finding the right oncologist for her. Choosing an oncologist might seem easy since your PCP, surgeon, & gastroenterologist will refer you.  Do your own research. Cancer Treatment Centers of America have an excellent track record, but I found their indoctrination and introduction day to be overwhelming by itself and my insurance was not in their coverage. I live in Fort Worth Tx and we have Texas Oncology which is a subsidary of US Oncology. US Oncology has followed Houston MD Anderson programs and most of US Oncology oncologists have fellowship degrees from MD Anderson. However US Oncology has gotten so big and has such a good success record  that thay have their own development and research facilities now.

Where to start with choosing an onc is from friends and relations who have cancer. Ask about their experiences with the docs and staff. Did the onc answer their questions and spend time with them? Were options explained and discussed. Many of us with cancer have years of experience and have no reservations with open discussions about treatments and support. The main thing is not to go into chemo with expectations of being sick all the time. Some do not tolerate it well, but many of us tolerate it with only a few side effects and are able to maintain our activities of daily living with only a few concessions. Cancer is not a death sentence any more. It's a challenge for you to overcome and face as a step by step, day by day attitude of being the one who beat it.

Dan   

Cammie88
Posts: 19
Joined: Sep 2013

Hello again friends,

I wanted to update you on mom and get more feedback.  One of her surgeons was in today and said she came thru surgery with flying colors and they are confident they got all of the cancer (2 colon tumors and mets to right ovary).  She was started back on a liquid diet today which she is extremely happy about!!!!  She also met her oncologist, who she seems to like (I was not here) and he told her Chemo once every 2 weeks for about 6 months.  I guess that works out to about 12 treatments.  Has anyone else had it in this manner?   Also, for when we go for the office visit in about 3 weeks, could you all throw out some names of Chemo drugs that you have had, side effects etc?  Mom seems more concerned about the Chemo than the diagnosis itself.  

Thank you to all of my new friends & those to come,

Christie

PS:  just realized I never told you mom's name is Julie.

Lovekitties's picture
Lovekitties
Posts: 2998
Joined: Jan 2010

I am glad that you found this site and that you feel it is helping you.

I had a rectal tumor and only did surgery.  However my sister has endometrial cancer and was also concerned about having to do chemo after her surgery.  She is stage 4.  One of the thngs that I remined her of was that if the chemo becomes too difficult to handle or severely impacts quality of life, you can always stop.  Another thing that helped was that her onc. office had a 1 hour group meeting for new patients to tell them what to expect and what to do when things come up during treatment.  This was a great help because it gave assurance that all of the staff was on the "team" to support the patient.

Another important thing to remember, is that every person is unique and not all suffer the same side effects. 

If your mom goes for chemo, it will be important that she immediately communicates any issues with her onc.  My sister's onc has an after hours number to call for anything from fever, to nausea, to more severe side effects.  There are pre-meds and prescriptions which can be given to help midigate most of them.

Wishing your mom all the best.  She is lucky to have you on her "team".

Marie who loves kitties

Cammie88
Posts: 19
Joined: Sep 2013

Marie,

Thank you so much!  I didn't realize there were prescriptions that could be given to help.  I will tell my mom today when I get to the hospital, that may calm her.  Also, thank you for the info about the after hours number and meeting on what to expect.  I will be calling the onc office today to see if those things are offerred, along with anything else.  I feel so blessed to have found this site and all of you!  

 

Christie

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

but it is doable.  I've known a number of people who worked while doing it.  Full disclosure...I personally got hit hard by side effects, but many people have a much more manageable experience.  And even with my "outlier" case, I did have at least a week or so out of every cycle (mine was chemo every three weeks) when I felt decent and was able to live quite normally.  We took a lot of weekend trips when I did chemo, despite feeling crappy at other times.

And the typical first chemo for colon cancer would be FOLFOX (two drugs, 5-fu and oxylaplatin); if your mom is on something different, side effects may vary.  But typically you would experience nausea and diarrhea, fatigue, and neuropathy (numbness and tingling in the hands and legs).  You can also get this weird cold sensitivity in your mouth and hands that makes it pretty much impossible to consume cold drinks or get stuff out of the fridge with bare hands (I wore thin gloves a lot).

But they will give your mom a lot of drugs to help with these side effects, and she should take them religiously.  The key to avoiding a complete wipe-out is staying on top of the symptoms before they get too bad.  And it's also important to stay in communication with her doctor.  Dehydration is a common problem, and she will be able to get IV fluids at her clinic, so long as she lets her team know what is going on.   I could have avoided a couple of trips to the ER if I had known in advance to call my doctor if I started to feel dehydrated.

Once she gets started on treatment, you will no doubt have more questions...and we will have more advice!  We've all been through this, and your mom can get through too.

Hugs to you both~Ann Alexandria

Cammie88
Posts: 19
Joined: Sep 2013

hi Ann Alexandria,

 

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

 

Christie

danker
Posts: 773
Joined: Apr 2012

 I had a chemo pump for 5 weeks giving me fu5 24/7.  I was also getting radiation M-F .  Only side effect was diarrhea which was controlled with LOMOTIL.  Good luck to her & you!!!

Cammie88
Posts: 19
Joined: Sep 2013

hi Ann Alexandria,

 

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

 

Christie

Cammie88
Posts: 19
Joined: Sep 2013

hi Ann Alexandria,

 

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

 

Christie

Cammie88
Posts: 19
Joined: Sep 2013

hi Ann Alexandria,

 

Those or the two Chemo drugs her onc. talked about today.  He told her she will wear a pump for 2 days out of every 2 weeks.  He told her she could take it in pill form but she is not good at talking large pills.  How did you take it if I may ask.  I will make sure she takes the meds to combat the side effects.  She hasn't said in so many words, but I think that is her biggest worry!  thanks so muchtoo about the info of possible cold side effects and dehydration.  Knowledge is huge and I can't thank everyone enough.  I know everyone is different, but the more we know before and what might happen will certainly ease some of the anxiety!

 

Christie

daisey1
Posts: 1
Joined: Sep 2013

I was diagnosed with stage 4 colon cancer in June 2013. It has spread to abdominal cavity, and have a very large mass which is not removable.  I too had a colectomy,

removed right side of colon, cecum, appendix etc. and was reconnected.  I had surgery on July 1, started chemo on August 8.

 

I am taking Irinotecan, 5FU and lucovoran.  The irinotecan, lucovoran are done through picc line in arm every two weeks in chemo clinic, then I come home with a tube of 5Fu for 2 days. This treatment is for 6 months every 2 weeks. The chemo drugs make me nauseated for about 5 days, very weak and tired. I was on oxaliplatin which had horrible side effects, they had to change it to Irinotean.  I have had 3 treatments and am going in for 4th treatment next week.  Starting to lose some hair at this point.  I have a very possitive attitude and  very supportive family and friends that help me get through this.

I went in to chemo thinking the side effect would be worse than they are, so tell you mom to hang in there.

Darlene

Cammie88
Posts: 19
Joined: Sep 2013

Thank you Darlene,  all of the information you are all provding me with is helping with all of the building anxiety. 

Cammie88
Posts: 19
Joined: Sep 2013

Dan,

 

I don't know if you have seen some of my other comments, but mom is most worried about the Chemo.  moreso than the diagnosis itself.  She is exhausted today (2nd day post-op) so when she is ready I will read her exactly what you wrote.  And once home I plan on getting her on here so she can ask questions from her side of things.  I will tell her of all of the wonderful people I have already met and  the incredible love & support I have experienced in just 3 days.  I don't know really how I found this site because I wasn't looking for a support group.  And to be honest, I never would have thought of myself as needing one.  But I do and it was God's work!

 

You all will be the ones who beat it, mom included!!!

 

Christie

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

It sounds like they got it all. That is a good sign. Hopefully it will never return or at least give her several years NED (No Evidence of Disease).

BTW, I am an 8 year stage IV survivor who is currently NED. Hope that helps.

Cammie88
Posts: 19
Joined: Sep 2013

hey Janderson!!

the more I read, the more I am encouraged.  so happy for you and all who are survivors.  And yes, IT HELPS!!!  :)

Christie

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

connected and infused on Tuesdays, removed on Thursdays.  Your mom will need to be there for several hours the first day, only a quick visit on disconnect day.  I found that I didn't feel too sick those three days, it was on the weekend that I got really sick.  By the following weekend I would be feeling better, and have a pretty good week after that.  But that was on a 3 week cycle.  I wonder why they want to do it in 2 weeks?  If it's the same dosage of chemo that I got, it seems like it won't leave much time for recovery.  Might be worth asking about, as everyone at  my clinic was on the same cycle that I was with this particular treatment.

One other thing to keep an eye on...the neuropathy caused by the oxylaplatin can be bad, and long-lasting even after tx ends.  My doc said to tell him if it got to the point where it wasn't going away toward the end of the cycle, and he would reduce the dosage, or even remove it all together for the last few cycles.  It apparently only accounts for about a 5% difference in outcomes, and the long-term neuropathy can be really bad.  I think it's one of the symptoms I hear mentioned most often on these forums...it really bothers people when it hangs on for months or even years.

Will she have someone to drive her to and from chemo?  That's really helpful if available.

And I was also wondeirng if they had confirmed that the "soccer ball" sized tumor was actually a met.  Those giant ovarian tumors are often benign, in my experience, so I was just wondering if they had done the testing on it to confirm things.

ETA that I'm also stage 4, NED for 21 months (knock on wood).  It can happen, so stay as hopeful as you can.

Cammie88
Posts: 19
Joined: Sep 2013

So I haven't been on the site at all because mom came home from the hospital on September 7th & had her stapples removed yesterday, the 16th.  Mom is doing very well and I want to thank everyone who has posted back to me and supported my mom and me to this point!  Anyway, mom and I were a little shocked when at the surgeons office yesterday, we were told that 5 of 15 lymph nodes removed were cancerous.  Right after the surgery, I was told they were positive for "indicators", not positive for cancer.  Anyway, I guess we were shocked when he said that meant that there is a 40-60% chance that the cancer will spread.  Mom & I still have an extremely positive attitude, but I have to admit, now having numbers makes it harder and my extended family, to put it bluntly, is freaking out. 

Has anyone been in this situation?  I know that once diagnosed with cancer, you have it and it is never gone, and you look for NED on tests.  I guess I don't exactly know what I am asking...maybe, I am asking, does that percentage make a difference?  Would she still be treated with Chemo if there was no cancer in the lymph nodes???

 

Thanks & blessings to all<

Christie

annalexandria's picture
annalexandria
Posts: 2324
Joined: Oct 2011

does change your mom's staging, and therefore the recommended treatment.  You should ask your mom's doc (or have her ask) about this.  They will be able to tell you more exactly.  But if the tumor that you mentioned that was so large is in fact made up of colon cancer cells, then she's automatically stage 4.  Did you ever find out about this?  It makes a big difference in terms of treatment and prognosis.  And as far as I know, chemo is pretty standard when lymph nodes are involved, but again your mom's doc should be able to tell you and your mom what to expect.

Keep us posted!  AA

PS I had 5 of 38 nodes involved, so NED can certainly be achieved, even when the lymph system is involved.

Cammie88
Posts: 19
Joined: Sep 2013

Thanks AA....We are going to the oncologist for the first time tomorrow to set up a plan.  I have my questions all written down and will notleave without answers.

PatchAdams
Posts: 272
Joined: Nov 2011

I had 5 out of 17 nodes positive for cancer back in Jan. 2009.  I have had a recurrence but it was found early and surgically removed.

Your mom is 70. With surgery and chemo, she might easily beat this and die of old age.  Don't give up hope!  

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