CSN Login
Members Online: 5

You are here

I dont know where else to go...but here...

marc24
Posts: 92
Joined: Mar 2009

Hello, i am actually a son of a cancer patient and I was looking for people/inspiration who have gone through what my mom has been diagnosed just this monday. The doctor stated that the colorectal cancer might have spread to the liver based on the CT scan. I have been reading alot of info and it states it is Stage IV colon cancer. How does she deal with this treatment wise because I understand it is the most severe of the four stages? IS treatment still possible? If so, please share you experience so I can share it to her. God bless you all and thank you!

And also, the doctor first mentioned that surgery might be required but after the CT scan and some testing, i believe surgery is not possible anymore. I know that means serious but i want to give my mom some ideas to cope with this serious illness. Please any help is appreciated. I'm really scared for her but im hoping for the best.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

There are a lot of Stage 4 survivors in here...I am sure that they will be along shortly to answer all of your questions. One thing to do...DO NOT GET ONLINE AND READ ABOUT SURVIVAL RATES FOR CANCER....The internet will scare you to death if you delve into it and read all the stories. It is normally 5 years behind and there are new things for medication and procedures being produced every day. You will get your up to date and correct information in here by people who have been there and done that and you can bet your socks on these loving, caring, and brilliant "Semi-Colons" as we call ourselves. There is a wealth of information in here and you as well as your Mom need to stay in close contact with all of us and become as you have by joining us "Part of our Family"...We turn no one away and have always straightforward but kind and gentle (for the most part) ways of communicating with each other. We laugh together, we cry together,we vent in here, we really become close in here because we share the same problem but all have different paths and journeys we take for this problem. .....Please tell her to become a part of our family as you have. She will feel in here as you will the feeling of necessity of coming in here each day to get uplifted and become aware of things that will come along on this journey and the shortcuts in handling most of them.......Stay strong and smile for her...that has a healing power in itself, and always think positive...you will be glad you came in here, I promise.....God Bless you and your Mom and I am sure we will talk again.....

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Many of our semi-colon friends were Stage IV and many are now cured or NED (no evidence of disease). Stop reading NOW and go with your mom to her oncologist who will give her options and hope.

Numbers are just that. New studies show that a positive attitude, exercise, reservatol (grape juice, etc), weight loss or a good healthy weight all help increase the odds by a great number! Prayer is another wonderful factor. Do not give up!

FYI, the WHO/CDC figures show that out of 100,000 people who die each year, 20 die from colon cancer. 20 out of 100,000..... 20. I can 'live' with that! :o)

Praying for your mom!
Diane

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm sorry to hear about your Mom, it's a scary time. First off, I have been living with Stage IV cancer for over 5 years. I have gone through a bunch of operations and rounds of chemo. I'm still here and doing rather well. While I am not NED (No Evidence of Disease) I lead a pretty normal life or at least, it's my new normal. Stage IV cancer means that it did spread (or metastasize) to other organs, it's very common to go to the liver first, then sometimes the lungs. First off, be wary of what you read on the internet. Much of it is old data, there have been a lot of medical advances in treatments plus, you don't have to have any medical experience to make a web page with info on it. All you need to know is HTML coding. Just keep that in mind. Some info is great and right one and other stuff is just crap. My first (idiot) doctor who diagnosed me wanted to operate then try chemo. sort of a shoot first, ask questions later. I had a huge tumor right around my hepatic artery (the main one to the liver) and it was considered inoperable. I got a second opinion over at Sloan K and their attitude was that while it's serious, it's not hopeless. They gave me chemo first (FOLFOX and Avastin) which shrunk the tumor in the liver and made me operable. I have an operation to take care of the colon (which was minor) and they removed 65% of my liver which does grow back BTW. They also inserted a pump that would give chemo directly to the liver for about 6 months. I also got systemic chemo (systemic meaning all over the body) to take care of any strays. My liver and colon have been fine since then but I have been dealing with small mets to my lungs for the past 3 years and that is still going on.

So yes, treatment and survival is possible with Stage IV colon cancer.
I would also get a second opinion if you haven't already done so.
I would also talk to the Oncologist about treatment first to shrink the tumor, that could make your Mom a candidate for surgery.
That's my opinion having lived with Stage IV colon cancer for 5 years

Best of luck to you all,
Positive healing energy coming to you...
-phil

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Marc,

I'm glad you found us so quickly. This is a tough time. I know you feel like the floor was pulled out from under your feet. Take a deep breath.

First, treatment is possible and longterm survival is likly. If you can start to think of this as a chronic illness (like heart disease and diabetes) it will help you see things differently.

I'm stage IV diagnosed 8/07 and still in treatment. It hasn't always been easy but it has been worth it. I live a good life even with all the crap. I've had 5 surgeries, liver radiation and almost continuous chemo. I have more procedures coming and 2009 will be filled with them. I was 43 at diagnosis and I just need to be around for awhile.

Your mother needs to be seen at a major NCI Comprehensive Canzer Center. Here is the link:

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

No matter what is said with her current doctors, second opinions are wonderful. If you get the same answers you start treatment with confidence that you are doing the right thing. If you get different answers then you start treatment with confidence that you had choices. Win - Win. And remember, surgery not being possible today has nothing to do with it being an option later.

HTH,

Kimby

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Another Stage IV person checking in here. First, let me welcome you to one of the most supportive online forums you are going to find out on the internet. We may not all agree with each other since we come from different areas, different backgrounds and different beliefs... but the one thing we do share is that we all either have cancer or are caregivers for someone who has cancer. This is a terrific place to come to ease the worries and fears.

Yes... if you read anything about Stage IV colon cancer on the web you will scare yourself to death and the next time you visit your Mom you are going to have that look of terror on your face. If you talk to any of her doctors/specialists, they will talk very seriously to you about how Stage IV is the LAST stage of cancer... and well, we'll do our best to keep her comfortable.

Bah!! Poppycock!! Stage IV is one word and a number... that's all it is. There is Stage I, Stage II, Stage III and Stage IV. Depending on how one has been staged, that will determine what treatment they will get. The combination of treatment, attitude and the will to live will determine the outcome... not some document that was written up with "statistics". Statistics are gleaned from "data"... and you can make whatever statistics you want if given data. Heck you and I can be given the same data and told to come up with some statistics and chances are we will both have totally different statistics.

Soooo, here's what I recommend to you. Print off some of these messages (we have a ton of them throughout this forum) of success stories (look for a recent topic titled something like "Dead now NED"... fabulous story of one of our members. Take these success stories to your Mom and let her know that she is NOT a statistic!

A recent story about myself... I am stage IV where the colon cancer spread to my lungs and my adrenal gland of all places. It's because of the spread that I'm now a Stage IV. I was referred to an interventional radiologist to see if he could do lung ablations on me (that's where they blast the tumours with radio frequency waves). He took me on as a patient to do one ablation, but the whole time was all doom and gloom, "After all, you ARE a Stage IV so I don't really see how this ablation is going to benefit you." I looked him right in the eye and told him, "To have one less tumour is a benefit... it sure beats the alternative of keeping it in my lungs to grow." He did the ablation but pretty much told me that he wouldn't be doing any more because I have multiple nodes (7 at that time) and the others are too small to ablate. By the time they start growing, there will be others. Yesterday, I had my two month followup appt. with him and as the others can testify, I was a little nervous about meeting up with Dr. Gloom and Doom. Well, yesterday, he was much more positive... and even said that yes, if the other nodules are to grow, we'd re-look at ablating them on an as needed basis.

So NOTHING is carved in stone!! What is inoperable today, may react well to chemotherapy, shrink and then become operable. What may look hopeless today is easy to treat tomorrow.

Cancer is NOT fun and no one should have to go through the terror of being DX'd with it... but it is not necessarily a death sentence either. Yes, for some it is, but not for everyone and certainly not just because someone has been given the label of Stage IV.

Hugggggggs,

Cheryl

marc24
Posts: 92
Joined: Mar 2009

I know we all dont know each other but you guys have been the bravest people i know..period. You guys are awesome and i will definitely make sure we get a second opinion. As far as the CT scan results, it states it has extensive spread in the liver, but the lungs as well as the other organs seem normal. I hope this means they can target the drugs towards the liver since it seems that it is the most and seriously effected. Thank you for the feedback, and please keep coming your experience since my mom as as brave as all you guys are too in this forum.

amcp
Posts: 251
Joined: Jan 2009

My husband was diagnosed with stage 4 colorectal cancer in 8/06..had colostomy and two plus years of chemo. Told by our local oncologist liver was not operable and spot in lung was growing so slow it would not be what killed him. He told us in 12/08 there was nothing left to do ..he could sent us to Vanderbilt in Nashville for possible clinical trial. We went and was told at first my husband qualified for Phase 1..experimental trial..first time used on a human. We agreed but went home to wait for a trial. A week or so later we got a call from the same oncologist at Vanderbilt...she said her team had been studying my husbands case and there was a possiblity of surgery. We have now gone back 6 times. My husband had to quit smoking after 45 years and then they did lung surgery to remove the cancer met in his right lobe and 4% of his lung. Now we just got back from Vandy again and we go next week for them to do an embolization to his liver ( stop blood supply to right lobe of liver causing that side to begin to die and left side to grow} Then in May we go back to see how the embolizm has worked and surgery for liver resection will be schedule. The Liver oncologist said this was Frank's " BEST HOPE FOR A CURE". We have gone from nothing left to do ..no hope..to possible cure. Get a second opinion at a major cancer hospital. You will not believe the difference. We met a man and his wife while in Nashville that has been fighting cancer for 8 years...stage 4 colorectal with mets to lung, and liver. Now undergoing clinical trials but he is doing good. Never let her or yourself give up. Only GOD knows what tomorrow will bring. We will keep you in our prayers. Keep us updated. We are here for you and your mom.
These people are the most fantastic people you will ever come in contact with. They will help listen, pray , care, advise, etc.
GOD be with you and your mom,
Anna

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

No doubt about it, stage 4 sucks. Your mom has a tough road ahead. Research every possible avenue of treatment. She has to be strong, diligent, and unwavering in her belief that she can fight and win. Expect the worst, hope for the best and you guys should get through this together.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Marc,

I know you're scared and worried right now, and that's why I'm so glad you've found this group. You're going to find a lot of good information and a lot of comfort here. Don't be afraid to ask anything or expressing any feelings you're going through.

I'm praying for you and your mom.

*hugs*
Gail

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Marc,

I'm sorry about your mom's diagnosis and the effect it will have on everyone. I was diagnosed at age 41 as stage IV with it in liver and both lungs. I thought I was going to die soon, as I was told I was inoperable because my tumors were too widespread. Well, five months of chemo (Folfox and Avastin) made most of my liver tumors disappear and I did end up being a surgical candidate after all & had the rest removed surgically last May. Oh- in between ending the chemo and before that surgery, I had a radiation and chemo combo (called "chemorads") for six weeks on my rectal tumor. I had amazing results- my rectal tumor disappeared (which everyone told me never would happen- the radiation was just to "prepare and slightly shrink the tumor for surgery"). Doesn't happen to everyone, but I'm living proof that it is possible!
Now, over a year and a half after my devastating diagnosis, all tumors in me are gone except some "small stuff" (under a centimeter) in my lungs. Most likely (still awaiting a PET scan), I'm about to start "maintenance", which will probably be Avastin only every three weeks. I can definitely live with that and am excited to think that "normal life" will be able to start continuing on for me and I won't have to focus so much on my "illness". Actually, other than dealing with chemo every couple of weeks (I think I forgot to state above that I did start on chemo again this past August for stuff growing in my lungs again)- well, even with dealing with all of that, I've still been able to be the busy "chauffeur" mom, drving my kids to and from school, dance lessons, and games. I do nap daily and sometimes don't feel so well, but "normal life" goes on! I'm told that nothing I have in me now is life threatening- so we'll hope that it all goes away, but for now, as long as it can be kept small and be kept from growing anymore, I should be fine!

Now, how's that for giving you hope for your mom?! I know firsthand how horrible and devastating it is, especially at first. When I was first diagnosed, I read those lousy internet statistics that talk about "5 year survival rates in stage IV patients as anywhere between 5% and 12%, depending upon the particular study. Well, guess what?? ALL statistics are outdated because, in order to be a 5 year statistic, the patients have to have been diagnosed and treated at least 5 or more years ago! Five years ago, patients didn't have access to some of the newer treatments that we have available to us today. If your mom's doctors quote those dismal statistics to her/you, then I'd find a new doctor! Some of the "old school" type doctors who aren't up on what's the latest should not be the ones to treat her! There IS hope- they also are working on lots more right now that is just in the clinical trial and study stages- I imagine a lot more will be coming out in the next few years. Your mom will still be around then- I just feel it!
It won't be an easy road, by any means, but there is hope-

I have learned so much from other people on this discussion board- way more, actually, than from my own doctors. When I have a question, this is the place I go first!

Please show your mom all the postings here- so many of us here are LIVING proof that those lousy statistics are outdated!!

Do you and/or your mom have faith in God? If so, I believe He does wonderful things. At first, it could be normal to be upset at God (you didn't say anything about that, but I know many people do have those kinds of thoughts)- I don't believe God ever "gives" people illnesses. Perhaphs "allows" them to happen, though- a result, I believe, of God allowing us freedom and that freedom includes living in a fallen world- a world that also contains illness and other bad things (as well as the good). He can take a situation and make blessings come out of it. Here, I'm still dealing with cancer, but my situation is SO much better now than I would have ever imagined at the time of my diagnosis. Also, many people I know have been blessed by discussions we've had about faith, when they might not have ever been willing to discuss these kinds of things before. Anyhow- my extra two cents about that thrown in there- for whatever it might be worth to you (or not).

Don't despair- there is hope and passing the news of that along to your mom can make a lot of difference in her attitude and willingness to fight this beast.

Stay strong and God bless,
Lisa

marc24
Posts: 92
Joined: Mar 2009

Hello again, those of u who are familiar, i am a son of a cancer patient and i'm just trying to gather as much information possible as we move on ahead. Got the CT scan results, unfortunately i see that my mom's liver got affected the worst stating "soft tissues throughout the left and right lobes of the liver ranging from few millimeter to 3.3cm". I couldn't believe it but i hope that chemo will focus on it and help do its job. I know that sounds bad but the rest of the results/organs turned out "normal" or "within normal limits". Basically my mom was diagnosed as extensive metastatic disease to the liver and i just found out was given a year. It felt devastated as a 24 yr old and i feel like the above liver results is the main problem although I AM NOT GONNA GIVE UP and i will get second opinions....I just want to know if this is similar to any of your "Results" because i see each and everyone of you as inspiration for myself and my mom and family. Thank you and god bless...i will show this forum because alot of you guys have been/are in the same position and can really help us and each other. Thanks again in advance.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi again Marc,

I see you're up late- me too! Anyhow, just a comment on your mom being told "she has a year". I was, fortunately, spared hearing that from my doctor. (I later found out from my husband that he told him that, had I not come in for diagnosis/treatment when I did, I would have probably only lasted another 4 months- but he did NOT give me any "amount of time left" announcement) If I had been told that, I don't think I would have had as much energy and gumption to be such a fighter. It's really too bad that doctors feel the need to tell their patients how long they have, when the treatment hasn't even begun! I supposed some patients ask that question and it deserves an answer, but I really don't feel doctors should say anything if they're not specifically asked. Please don't get too discouraged. Only God knows how long each of us have left- the doctors aren't God! Like I said in my other post, I had serious metastasis in my liver (12+ tumors spread all over the liver) and also numerous tumors in all parts of both lungs- pretty bad!! But, I'm here today to tell you that most all of that is GONE! Keep up the hope!

Take care, and go get some rest now- I think I will too!

Blessings,
Lisa

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Marc,

My liver started out much like your mothers. I have multiple (10+) tumors across both lobes. There are many treatments that may be available to her: resection, rfa, radiation, hai pump, chemoemboliztion, sir spheres, teir spheres....it is very individual. It isn't time to panic yet. There is HOPE. Help her to have fun, laugh at what you can, live every day...and fight. It will be a long, bumpy road, but you can navagate it together.

Hugs,

Kimby

taraHK
Posts: 1961
Joined: Aug 2003

Hi Marc.

Sorry to hear about your mother's diagnosis -- it is a huge blow for the whole family, I am sure.

As others have said, you have to take all the statistics and predictions with a HUGE grain of salt. Treatments for cancers are changing so rapidly.....and people DO beat the odds.

I was diagnosed with Stage 3 cancer over 6 years ago. I had a couple of recurrences, to my lungs. But I am currently "NED" (no evidence of disease). And leading a great life. I'm one of those that takes a "chronic health disease" model -- I may need some medications/treatments from time to time, but I can live like this for many years.

An excellent medical team is important, but so are other sources of support. I have two sons, and they have been a huge source of support and inspiration for me -- I plan to dance at their weddings and bouce their babies on my knees (hopefully no time real soon -- they are 16 and 18 now!). Your mother is lucky to have you in her life at this time. Sending best wishes to you both and the rest of the family.

Tara

Subscribe to Comments for "I dont know where else to go...but here..."