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vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

I went for colonoscopy 2 days ago and was told I have cancer. Am going in for CT scans today 

then see surgeon next Wednesday. This was a shock but plan pn staying positive and try to beat

the cancer. My wife is doing a little better today but it did shake her up prtty bad. 

lilacbrroller's picture
lilacbrroller
Posts: 409
Joined: Jun 2012

Welcome!  You will find this board to be a source of information and support, and I"m sure you'll make connections with a great many of us.  There's years of experience here, and we don't hesistate to share and give advice and provide support.  No topic is off limits regarding health - as indicated by recent posts on hemmhroids!

I hope your cancer is localized only.  Good luck with the tests. Try to get a PET scan too. 

all the best to you and welcome to our board - your wife can join as well as there are many caregivers on this board, and not just us patients

Karin

janderson1964
Posts: 2027
Joined: Oct 2011

Welcome to the forum. A little advice since you weren just diagnosed. Many of us including me were so overwhelmed when first diagnosed that we couldnt think for ourselves and just went through the motions following all of the doctors orders. Take a deep breath and get prepared for the fight of your life. Take someone with you to your appointments and take a pad of paper and pencil. The doctor visits can be overwhelming and very hard to retain all of the information. It is still overwhelming to me at times even after 8 years of fighting. Use your pad to write down questions you want to ask the doctors and thier answers. Take that information and educate yourself further on the internet. You might have really great doctors but it doesnt hurt to look at your options as well.

marbleotis's picture
marbleotis
Posts: 573
Joined: Mar 2012

So sorry you are here, but you have come to a great place for help, info sharing, support and sometimes just someplace to vent.

Some tips:

  1. Go to all appt with a note book so you can log all your questions and answers
  2. You will need to find out what stage your cancer is.  There are people on this forum that are all stages and all variations of stages.  Lots of help
  3. No question is stupid, only the one not asked
  4. No question is off limits here,  lots of poop questions - no one is emabarassed
  5. Take good care of yourself
  6. Do not turn into Dr. Google - there is a ton of stuff on the internet that is invalid and just not true.  Work with your Onc for your info and go to good sources (ACS, CCTA......)
  7. It is true that once you hear, "you have cancer.......", you hear nothing past that.  This is where the shock comes in.  You will be ok, breath, re-group, get all your appts made.  Be sure you like your Onc and Surgeon, 2nd or 3rd opinions are your right.  Your care should be a team effort.

You will get through this, if you are having a bad day - just allow it and move on, it will pass.

Please keep us updated, there are so many wonderful people on this site that helped me get through alot.

I will be 2 years NED tomorrow Smile.  NED = no evidence of disease.  FYI - I was diagnosed 1/13/12 with stage 3b signet cell colon cancer at 49years old.

Nana b's picture
Nana b
Posts: 3048
Joined: May 2009

Welcome and don't forget to breath.   Raquel, stage 4., over 5 years since DX.  

 

Get olenty of rest

drink water 

eat green

eat veggies

stay positive

careful you aren't being mean to family due to DX 

you will feel better in a couple months, this will become routine.  

 

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

We're a happy, upbeat group of friends that are here for you. 

We are here when you are sad, happy, annoyed, exasperated; well we're here for you whenever. 

Lots of great advice above. 

We all handle things in our own way, but following basic advice is a godsend. I was grateful when I arrived, it helped me throughout and I am a much better person for being a part of this community. 

Here's one thing that worked for me, may or may not work for you but worth a try.  I allowed myself 10 minutes a day for my sad time. I called it my 'Pity Party', mostly when I went to bed, and my whole mind was consumed with the darker thoughts concerning my diagnosis. 10 minutes to have a cry, think about the worst, cry more, then I would put it aside - still there for sure, but not consuming - and filled myself with good thoughts and hope and faith and love. 

There, thats my advice for the day. I have plenty more stashed away. HA!

Post often, we are here for you. 

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

I know that this is not a journey that you would choose. But right now, just try your best not to borrow worry. 

A diagnosis of cancer is a shock and may make you feel very angry. You may also feel like shutting down emotionally. Seems no responses are the same ... but, obviously all normal.

I encourage you to have an advocate to attend all appointments and procedures with you.  They can help prepare questions or concerns you have ahead of time for the doctor and to take notes during the apppointment.  Sometimes, your spouse is the best person ... but, if there are periods of time where your spouse is too anxious or emotional themselves ... better someone else. There were times when my husband attended his appointments with someone else and the doctor let him tape-record these conversations for my benefit.

This is simply a great site. I have been reading it since 2008 when my husband was first diagnosed. There are many people here with different stories to share that will provide you with hope and courage.  You can also encourage your wife to come here as there are a number of current and former caregivers.  Sometimes it is a slightly different kind of support that caregivers need.

Please check back in with us to let us know what the staging of your cancer is so that we may provide more specific support.

Peace. ~ Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 They said the good news it is the most common and has not spread but

then told me they got a surprise that wasnt expected and is not related 

to the colon but there is a lesion on left kidney so am going to lose a kidney it

sounds like . Will know more next Wedensday at meeting with surgeon. 

 They did say there will be chemo also.

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

When you say the cancer has not spread ... ask them what stage it is.  Do they mean that you had a polyp that showed evidence of cancer cells but it has not grown beyond the inner layer of the colon or rectum?

Lesion on the left kidney ... You might want to ask if you are meeting with a surgeon to schedule a biopsy to determine if the kidney lesion is spread from the colorectal cancer.  There are rare circumstances where colon cancer has isolated metastasis to the kidney at the time of initial diagnosis. I don't know how they can know what type of cancer it is without a biposy.  If it is a separate kidney cancer, unrelated to the colorectal cancer ... remember there is also a Kidney Cancer forum on the site ... but, we are always here for you too.

Have hope. It is early in your diagnosis and you will develop a treatment plan.  This usually gives you a feeling of power because you are doing something to eradicate the cancer.  If you do need kidney surgery it may require only partial removal of the kidney that is affected. I have a relative that had this surgery three months ago and is doing quite well; his complications were few and his prognosis good.  

Just take things one step at a time.

Peace. ~ Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

they are scheduling a appt with a oncologist They did say the lesion on kidney was not related to the colon cancer  and that the mass on colon had not progressed past inner lining I forgot to ask what stage the cancer was tho. Still learning so will get more information as I learn what to ask.

 But I can say something real good came of my having been diagnosed is several coworkers and family members have scheduled there colonoscopy exams already after hearing about me.

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

one step at a time.  You come back and let us know after your appointment.  Remember ... take notes as you may be given a lot of imformation to process at once. Wonderful about your family and coworkers getting their colonoscopies!

Peace. ~ Cynthia

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

But I can say something real good came of my having been diagnosed is several coworkers and family members have scheduled there colonoscopy exams already after hearing about me.

This happened with me too, and  one of my church associates was diagnosed with stage 3B colon cancer. She says I saved her life. 

I feel you have a good attitude when you recognize that you can help others in spite of what you're going through yourself. 

teamzach's picture
teamzach
Posts: 35
Joined: Jan 2014

Yay! All great news! With this cancer early diagnosis is best!!! My husband was 30 and diagnosed with stage 4. yuck! Celebrating with you! And of course, welcome to the forum! I am rather new also, but the people here are great and most likely will know the answers to your questions. Keep us posted! You have your very own cheerleading team within this forum!

Janelle

annalexandria's picture
annalexandria
Posts: 2439
Joined: Oct 2011

I know we're not a club that anyone wants to join, but now that you're here, I hope we can provide you with plenty of support.

You've already gotten a lot of good advice from othe rmembers, but I did want to add that it's important to find out if the lesion on the kidney is indeed cancerous, and if it cancer, whether or not it is metastasized from the colon.  This may determine the type of treatment they offer.  Hopefully, they will just tell you all of this, but if they don't, it's worth asking.

Keep us posted!

Ann Alexandria

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 Talked to urologist yesterday she didnt think they would have to take the kidney but are going to do biopsy on lesion and maybe find a way to handle lesion without kidney removal.

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Welcome,and sorry you have to be here.Stay positive,and be sure you have someone with you when you see the doctors.I'm stage 4 ,snd I still have trouble remembering what the doctor says.We are here when ever you have questions or just need to vent.Everyone has bad days,and we are here to help how ever we can.Good luck,stay calm,and be positive.

tanstaafl's picture
tanstaafl
Posts: 1074
Joined: Oct 2010

We found special surgical preparation with selected supplements with generic medicines and extra blood tests beyond "standard care" very useful during this time period.  In fact, we credit much of my wife's "good luck" to them.

Basically immune enhancing measures before surgery as close to diagnosis (asap) were extremely helpful to my wife, probably life saving.  Life Extension has some useful articles for cancer and preparation for surgery. Background,  more background,  supplements.

Extra blood tests that we've used before and soon after [the first] surgery include CA19-9, CA72-4, LDH, GGTP, fibrinogen, hsCRP to create baseline data for possibly important biomarker data that cannot be retrieved later. At first, she was at least stage II then III, but she was really a stage IV. Extra data and precautions paid off, although they were not as thorough as if we had known all along. 

Also vitamin D3 is frequently greatly deficient in colorectal cancer patients and there is a blood test for that.  Dosages of 5000, and 10,000 iu vD3 per day are not uncommon here. Despite my wife's initial loading rate at 16000-17000 iu per day for 2 months, we could have used more with timely blood tests.  Six months after diagnosis, my wife still had slightly insufficient blood levels even at 12,000 iu vitamin D3 per day while on chemo!

Since some of this is nonstandard, ordinary doctors and insurance may resist, although ours have learned it's smarter not to. We also use outside medical opinions on the supplements and Life Extension protocols.  When in a hurry, we pay cash and do the necessary stuff that we decide on.  

 

 

 

fatbob2010's picture
fatbob2010
Posts: 466
Joined: May 2012

Good to meet you, sorry we have to meet.  This is a great place for information and support.  Try to be calm as posible and remember that this is a marathon not a sprint.  Keep us updated...Art

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 The Drs appoinments coming in fast the urologist on Monday then the surgeon wedensday then oncologist Friday and get the port put in place on the 10th looks like I'm going to be busy for a few days. Plus making the finiancial arrangments for all the bills so Wife doesnt have to worry about all that stuff.

LivinginNH's picture
LivinginNH
Posts: 1407
Joined: Apr 2010

 

Hi,

Welcome!  Good to hear that your treatment plans are moving forward rapidly.  I also wanted to reach out to your wife and tell her that we support and welcome her too.  I'm a former caregiver, so please tell her to feel free to send me a PM if she has any questions.

All my best,

Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

Thank you I will tell her.

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 Just wondering if I am going to be able to work while being treated as I am a truckdriver 

what kind of effect are the treatments going to have or should I start applying for disability

now? 

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

diagnosis at age 67. He only stopped working because he had a preplanned retirement date.  His biggest problem was fatigue but he was also lucky and had no complications during that time. I can't say it was easy for him, but he did continue working full-time for four years while having continuous treatment (his cancer was not curative from the beginning). His job did not require heavy lifting or long-distance driving though,

There are aspects of your attention that may be affected by your chemotherapy treatments ... you just feel a bit foggy.  That may interfere with safe driving but it likely will depend on what stage of treatment you are in and the nature of your trip. Do you have to do long-distance driving?  Safety may be an issue. Do you have to do any heavy lifting?

I googled something you may find interesting ... on a website called The Trucker's Report ... they are having some messages back and forth about this very question. Copy and paste this into your search engine:

http://www.thetruckersreport.com/truckingindustryforum/driver-health/134155-chemo-and-my-cdl.html

Here is a link that describes when you can get social security benefits for colon cancer:

http://www.disabilitysecrets.com/resources/disability/when-you-can-get-social-security-disability-be

You will be able to handle all this ... it is just a great deal to figure out in the beginning. Things will settle down.

Peace. ~ Cynthia

annalexandria's picture
annalexandria
Posts: 2439
Joined: Oct 2011

as everyone is a bit different in how they react, but I will say that if you are given the standard first line chemo (FOLFOX), you will almost certainly have some digestive problems that may make trucking difficult.  Unfortunately, most people don't get through this without some significant side effects, and while they have great meds that will help with those, they often make you sleepy.  Probably not great for driving a truck!

Would short-term disability be a possibility for you?

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

I was on the FOLFOX & 5FU. I had chemo brain real bad, lost focus and peripheral vison. I ran my husbands car into a rock and was not allowed to drive after that. 

But that was just me.  As people have stated, the meds affect us all in different ways and you may be fine.

My advice is to just be aware of your body. Keep a notebook by your side at all times. Jot down EVERYTHING that is happening both physically and emotionally. I would go into my Onc's appointment with a list as long as my arm. Be honest with yourself. If it feels as though you shouldn't be driving, don't drive (mistake I made, because I knew something was not right). 

Good luck with all of your appointments. 

Keep us posted. We are part of the team now. 

hippiechicks's picture
hippiechicks
Posts: 465
Joined: Sep 2012

I think we were cut from the same cloth!!  I could not drive or walk a straight line for that matter!  

 

marbleotis's picture
marbleotis
Posts: 573
Joined: Mar 2012

I did not drive for nearly a year.  I couldn't walk a straight line yet alone drive. Yikes........

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

I couldn't walk straight either and ended up with a walker. I looked like I was 100 years old, especially when my hair fell out and I looked like Gollum. 

 

annalexandria's picture
annalexandria
Posts: 2439
Joined: Oct 2011

don't you think?

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

Glad I didn't get the Gollum teeth though. 

thxmiker's picture
thxmiker
Posts: 1283
Joined: Oct 2010

Start the application for disability. It make take years to get.

 

Welcome to the forum!   At the same time we are sending our thoughts and prayers for your strength because you are here.

 

It sounds lie you are on top of it!   I was able to work and carry on as normal for my first three years.  We did not even tell either of our families. (They are a little religious wacko.)  The second round of surgeries, chemo etc.... was  ahiney kicker for me.   Others have done better, some have done worse.   I would ride out the storm and see where you are at.

 

Best Always!  mike

fatbob2010's picture
fatbob2010
Posts: 466
Joined: May 2012

Each person has a different reaction to treatment.  There are stresses on your body both physical and emotional.  I do not know what you drive or what kind of mileage you put in daily.  

Check with your local licensing authority and perhaps even DOT to get an idea what to expect from your next physical.

Always be hopeful since it is often no where near as bad as we imagine.

Art

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

Somebody here probably has some tips for that sideways thing ... I am not sure myself.  Good news is, we can see you and it is always nice to put a face to a name.  I know this is not where you want to be ... but, it is a good group of folks that will do their best to help you every step of your journey.

Peace. ~ Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

took a few trys but got the picture right side up

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

How did your appointment go yesterday? 

And I like the picture too. I like putting names to faces. 

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

Urologist said that they are going to leave kidney and do biopsy to see if the lesion is because of the colon cancer then may try to only remove lesion after the Chemo treatments. 

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

Your doctors are proceeding with caution and that biopsy will help them assess if the lesion is a spread from the colorectal cancer.  When do you start with your chemotherapy treatments? It is a rough time and so many things are happening. Crograts to you on figuring out that picture thing, I have some that are sideways that always puzzle me.

Peace. ~ Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 They haven't said when chemo starts yet I see surgeon tomorrow then oncologist Friday then they are putting the port in Monday. 

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

Oh, I was so thankful for my port.  I watched other poor souls getting poked and prodded and thanked the good Lord that I was able to get a port. 

For me it was a breeze to access, no pain, not even discomfort. I was SO apprehensive about getting it accessed. I wished I had found this forum then, it would have taken half the fear away. 

I'm glad things are rolling along for you, Van. No doubt you'll find out on Friday about the chemo. 

marbleotis's picture
marbleotis
Posts: 573
Joined: Mar 2012

It is no big deal having put in and will make the chemo go smoother.  It would be horrible to get poked in the veins in the arms bi-weekly for months.

Trust me, you will learn to love that port!

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 Met with oncologist Thursday I now know the chemo treatments I will be recieving one is 5FU and I have the name of other one at home and will add it to list later. Gettingport on Monday and they had to move appt with surgeon until Tuesday because of weather so dont know yet of they are going to do Chemo or surgery first. Then wedensday they are going to biopsy the lesion on kidney. I was told that they also saw a spot on lungs but they are just going to watch it for now and see if the chemo will shrink it. I was told that there will be at least 6 months of chemo tho. Am trying to get back with VA hospital before my bosses decide that Im not going to be able to work for awhile. I drive truck for asphalt company which requires a lot of attention as working in high traffic areas and around dangerous equipment with lots of backing and tight turns was also pulling lowboy hauling the equipment so I have to consider the safety of coworkers also any distractions could be deadly for somebody.

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

It sounds like everything is moving along, in spite of the weather delays. 

It always feels good to be doing something, even if it is appointments. 

Considering your work, it will be good to be extra vigilant during your treatments. As I said above, I lost my peripheral vision, which caused me to dent my husbands car to the tune $5,000. Better safe (for yourself as well as others) than sorry. 

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

The other Chemo is Oxaliplatin

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

I know it seems like a whirlwind of activity but things will slow down once you begin treatments. Your appointments will have regularity to them. You will also feel like you are actively doing something and that will help make you feel more in control.

The port … as others of said, the port placement is a surprisingly easy procedure and makes everything easier.  My husband had only minor discomfort the first 24 hours after placement. The area just might feel a bit tender. It is a great device when you have chemo, blood work, or certain scan injections. In the beginning, they will give you some numbing cream that you put on your skin with a little adhesive patch to keep the cream from getting on your clothing before you go in for treatments.  After a while, my husband no longer used the cream because he said that he did not even feel it when the port was accessed.

Six months of chemo … is a fairly standard treatment regimen given before potential surgery.  You will do ok, but the effects will be cumulative so don’t be surprised if it makes you feel a bit worse as time goes by. If you have 5-FU, they may provide you with a pump that you wear around your waist for 48 hours so that you can have continuous, low-dose infusions.  Many folks here have experience with the pump so come back to ask questions.  You may also be given the 5-FU in pill form that some find more convenient.

Side effects … each person’s experience is different.  It will also depend on what other chemo drugs are administered. My husband had mild nausea, loss of appetite, fatigue, and cold sensitivity.  As you begin to experience any discomfort, come back to the site and we can you give you some tips that can help make you feel better.

Driving … I really hope you can just take a break, get your treatments, and concentrate on your health for a while.  It really could be dangerous and frankly, I don’t think you will feel like it. 

You mentioned the VA hospital … thank you for your service to our country :)

Peace. ~ Cynthia

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

 Update got the port yesterday. Then saw the surgeon today found out there is lymph node involvement also spot on lung and kidney scheduled for biopsy on kidney tomorrow and PET scan friday. Surgeon finally gave me a stage for now which didnt surprise me when she said it is stage III. But I do realize that is still not postive until after biopsy and PET. Wife went and got a dog she says to keep me active. Must admit hes very active and friendly.

relaxoutdoors08
Posts: 521
Joined: May 2011

My husband and I walked the Dog to the Dog Park on my 5FUPump days but I needed extra water to stay hydrated e when doing Folfox.  I am a IIIC and still here 3 years NED No evidence of disease. Next Scan in April.  My advice take one treatment at a time. I think your wife had a great idea to give you a dog ....  My prayer words were given when my Priest gave me the a anointing of the Sick.  Courage, Hope, Health. I took a good breath and prayed these words before each scan and before each treatment. Sending these prayers for you.

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

I also did the 5FU and Oxaliplatin, so I can commiserate with you as time goes on. But (Oh, I know, I shouldn't say butt), the time does go by, and soon it will be behind you (Oh, behind you. Just can't get away from these body related expressions).

Glad your port surgery went well. And even though its not good news about the spots, you are on the road to getting rid of that cancer. 

Hoping the Kidney biopsy went well, and will be thinking of you on Friday. 

Its all go, go, go (see, another body related expression). 

Be good to yourself and love that puppy. 

Annabelle41415's picture
Annabelle41415
Posts: 4544
Joined: Feb 2009

I've been off board for a couple weeks, but glad you found us.  Please post all your thoughts and concerns here as we are a great bunch of people.  We will help you through this rough journey.

Kim

vangbi's picture
vangbi
Posts: 62
Joined: Jan 2014

Me and dog getting along good He is a Shebi not sure if i spelled that correct but kind of looks like Golden lab hes about 1 Yr old so very active and loving. 

 I got thru the biopsy ok yesterday still a little sore today and that port is a blessing no more sticking me in my arms. Go in for pet scan of lung tomorrow and surgeon said she may have me see pulmonary specialist also to make sure I have lung capability to get thru surgery I sure hope so.

Wife still having good and bad days sometimes cheerful and sometimes crying.

 The costs are already starting to get to me as Insurance doesnt cover everything Applied for disability and still waiting for answer from VA administration but am getting worried as backup funds running out fast. Trying to stay positive but finacial stuff starting to get me down. Need to stay as upbeat as I can so Mary can stay positive. 

Trubrit's picture
Trubrit
Posts: 2083
Joined: Jan 2013

I started to worry too much about money while I was doing chemo, and it wasn't good for me so I just let it go. Now I'm feeling better I just have to deal with it month by month. Luckily, as long as I pay something toward the different Doctors (five of them, plus two hospitals and one diagnostic centre) they leave me alone. 

Still, I am grateful for the insurance company (except when they wouldn't cover the PET), or I'd have been in debt and my kids and grand kids and great-grandkids. 

Onward and upward. Will be sending good vibe and positive energy your way tomorrow. 

devotion10's picture
devotion10
Posts: 640
Joined: Jan 2010

Somewhere I have some great instructions for how to put a picture in your message.  I would love to see a pic of him! Name? You might want to start a new message .. maybe after your next appointment ... it could be Update or My New Dog ... whatever.  This one is getting long -- you have so many new friends here!

Remind your Mary that she can come here as well and there is also a specific Caregivers site too, but we do have many active caregivers who post here on the Colorectal forum though as well.  I know she is scared and worried.  She is my kind of gal if she went out and bought you a dog to help you get through all this -- I did the same thing!

Peace. ~ Cynthia

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