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Stage IV rectal cancer with 1 liver mets

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 489
Joined: May 2012

I am 49 with 4 kids -twins that are 14 and the best husband in the world. So scared that I won't see them graduate, go to college, get married. Diagnosed on April 11, 2012, started radiation and chemo 5FU for 5-6 weeks then surgery 2-3 weeks after. I feel like my life is on hold and everyone else is still living, I just don't know what to do - nothing matters and I just want someone to tell me I will live and no one can, I'm scared.

Lovekitties's picture
Lovekitties
Posts: 3053
Joined: Jan 2010

So sorry for your diagnosis and yes it is scarey. But you have come to a place where there are a number of folks who have been managing to live fairly well after a stage 4 diagnosis.

You need to share your feelings of anxiety with your doctor because you need all your efforts going to staying as well as you can both physically and mentally while you are in treatment.

No one can say when anyone will die, even those without cancer. The diagnosis just brings our mortality into closer perspective. Lots of advances have been made and there is no reason why you cannot be one of those who after treatment becomes a NED (no evidence of disease) person. Will it be easy? No. Can you do it? Yes.

Always feel free to come here to express your concerns, rant, rave, ask for help. The folks here are always willing to help as they can.

Best wishes for easy treatments and successful surgery.

Marie who loves kitties

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Welcome and glad you found this Board~
Your feeling of shock and disbelief at your diagnosis is one I can relate to:"How did this happen? Why did it happen? What's going to happen???"
The whole loss of control is frightening and confusing to say the least.
First of all, take a very deep breath and exhale....
Take a look around this Board and you'll see many who are living with cancer, and many who have been diagnosed as having No Evidence of Disease (NED) anymore.
The early stage of treatment is an excellent time to take people up on their offers to help you and your family. One of our friends set up a meal delivery system through Lotsa Helping Hands so I could concentrate on getting well and not worry about my meals for my family.
Say YES to all the offers of help--ppl who care about you really do want to do something--anything---and you or a trusted friend could give them some direction.
A cancer diagnosis is scary, but you can do this.
One step at a time.
Again, welcome~and a big hug too.
TommyCat, mother of identical 7-year-old twins, dx 2009 Stage 3 rectal, currently NED

swimmer22
Posts: 53
Joined: Oct 2011

We have so much in common-- so listen carefully, take a deep breath, and know that things can turn out okay. I was diagnosed at age 48 with rectal cancer. I have two children, a son age 16 and a daughter 12. I also have a great job and wonderful wife. When I got the diagnosis of recital cancer with metastatic disease of two nodules in my right lung, I thought the world was over.

I then decided to relax and move through the motions of treatment-- and focused hard on keeping a positive attitude. When people asked how I feel, I always respond with "really good" or "doing great" and that has helped me immensely. I put out a positive attitude constantly, even when at times I didn't feel that great. Somehow, putting out the positive made the bad times seem better.

I elected to have VATS lung surgery to first remove the nodules (I bypassed biopsy- I just wanted them out to know for sure). The results came back evidencing metastatic rectal cancer but they were removed with clean margins.

I next did six treatments of Folflox- to which I had a significant response in that the chemo really shrunk my rectal tumor. Next, I moved on to the 28 days of chemotherapy/radiation as you are doing. I then waited 9 weeks (not 3 as you indicated) because I was told the radiation continues to work up to 10 weeks after actual treatment ends. I had a scan and found out I had a COMPLETE response to the chemotherapy/radiation. That means the original (rather large) rectal tumor was completely dissolved to scar tissue. In essence the tumor was gone.

I then progressed to have surgery to remove the scar tissue and they harvested some lymph nodes too. The surgery was done laparoscopic--- was out of the hospital in 3 days and back to work in 8 days. Pathology showed no cancer cells in the lymph nodes or the scar tissue removed.

Finally, I just recently completed 6 months of follow-up (clean-up) chemotherapy of Folfiri. In three more weeks, I have my temporary ileostomy reversed and hopefully, this is all behind me. Numerous PET Scans since my resection continue to show No Evidence of Disease (NED). So see.... YOU CAN HAVE SUCCESS.

Granted, there are not guarantees that cancer still doesn't reside somewhere but I find it amazing I had a stage IV diagnose in December of 2011 and 16 months later show NED. Treatment can work both for a potential cure and for giving us that extra time we all need to take care of our commitments to children and family.

Also, I've continued to work full-time thought all of this. Granted I missed time for doctors’ appointments and a total of 4 weeks for two surgeries but overall I tried to keep my life as normal as possible. Rather to choose to lie in bed when I was tired and not feeling the best, I forged ahead keeping my normal routine and that really helped me a lot.

Take your life off of being "on-hold" and continue living....in my mind, that is a huge part of success. Consider this the new-normal and keep marching on. Like me, I pray that you too will find yourself coming out well on the other end of all the treatments. Stay positive my friend and come here frequently to talk it out with those who have already walked the path for help! You will be okay.

Coppercent
Posts: 148
Joined: Jan 2012

Wow! I love your attitude. I believe a positive attitude is the way to win this battle! I stay away from all of the "Negative Nellies". I too have continued to work and stayed out of bed and off of the couch. I have only missed work for hospital stays and appointmets. I return to work the next day or soon after I am released from the hospital. My oncologist's advice when I was first diagnosed was to stay active with my normal life and increase my exercise. Far different from the days they encouraged rest!

Really enjoyed your post! Some great advice!

Antpopoola
Posts: 10
Joined: Jun 2012

I am 52 years old. I was diagnosed with cancer of unknown primary on January 27th, 2012. I started having problems with my stomach in September, 2011. Been to the doctor several times and they didn't find anything. Until I started bleeding heavily through my rectum. A colonoscopy was done and that's when I found out it was cancer that possible metastasised from the ovaries. The moment I got my diagnosis I was determined to beat this cancer. I had a PET/CAT Scan done but there was no cancer showing any where except an 8 cm mass in my rectum. I did 3 chemos (Taxol Carboplatium). I must say that after I read and look at several books and videos I decided to changed my diet. I stopped eating red meat, chicken and sugar. I try to eat mostly whole grain food. I was fortunate that my doctor allowed me to do juicing. I tried to dring at least 30 ozs of vegetable, mostly green ones daily. I did another CAT SCAN and the doctor was very amazed to see that the tumor has shrunk 75% after 3 chemos. It is now 3 cms. I personally believe that it is the result of not only the chemo, but also my diet, a positive attitude, family, friends and most importantly lots of prayers. I am now waiting for a date to do the surgery. My friends are amazed at how well I am doing. They often tell me I am not sick am faking. I wish that was the case. I keep my self very busy. I was told that it will be an all day surgery. I will have a hesterectomy and a temporary illeostomy. I agree that our attitude play a very important part in our healing. I have no doubt that we will be ok. Be in tuned with your body and try to rest when needed. I have been off from work by choice. I spend a lot of my time with my friends volunteering to teach people the bible. This lifts my spirit. We must cherish each moment we have and feed our minds with positive thoughts.

geotina's picture
geotina
Posts: 2082
Joined: Oct 2009

I am here to tell you that yes, you will live. Will there be some tough days ahead, well, yes but there will be many more good ones. Go have yourself a good cry, scream, yell, pound your fists on the floor, whatever, then get down to the business of living. You did nothing wrong to bring this cancer on, it just happened.

My hubby was diagnosed 3/09, Stage IV, multiple mets to the liver and lungs and he is still here and kicking and driving me nuts.

Take things one day at a time. Treatment is a marathon and not a sprint. There will be ups and downs. Through all of this please remember to enjoy life, enjoy the things you always do.

Remember, no question you have is too big or too small. Don't worry about terminology, most will know what you are referring to so please come back with any questions you may have and others will share their experiences.

Take care - Tina

maglets's picture
maglets
Posts: 2459
Joined: Jun 2006

gosh....I can hardly think of anything to add to all these wonderful folks who have replied. I too feel I know where you are at right now. I am stage IV with mets to the liver twice and a terminal diagnosis and still going strong after eight years.

The start is so hard.....you do not know what to do and you cannot see a path through this wilderness.....soooooo you have to just put one foot on the path and concentrate one step at a time...one foot in front of the other.

No matter how hopeless it may feel right now.....it is NOT hopeless. You can survive....you will get into the swing of surgery and chemo and radiation....all just one step.

Welcome welcome welcome to this humble family....we are here. Do not hesitate for one second to ask anything....or just vent or whatever....

you can survive!

best love,

maggie

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 489
Joined: May 2012

Thanks for all the positive encouragement - I still cry a lot everyday. I. Am a nurse at a hospital on med/surg so I am unable to work now with radiation everyday and a 24/7 chemo infusion. I have lots of time to think about it and read horrible statistics on the Internet. My daughter is 28 and got married last year and is thinking about getting pregnant later this year - it will be my first grandchild that I want so bad. I know I am rambling so I'll stop, but thank you everyone, and I will be on here often watching you hoping for only good news for everyone.

Sandy

danker's picture
danker
Posts: 797
Joined: Apr 2012

Age is no factor. I was d'xed at age 77. Like you went though continuos Chemo while getting radiation 5 times a week. Then resection ,iliostomy and reversal, while 78 Last year had my second colonoscopy and am still ned. WILL BE 80 NEXT MONT-LIVING NORMAL LIFE. SO THERE IS HOPE. DON'T BE AFRAID!! MY ONCOLOGY NURSE SAID,"BE GOOD TO YOURSELF." You mighht haave bad days, but then you will recognize the good ones. GOOD LUCCK WITH IT ALL,

Luckygirl2
Posts: 308
Joined: Mar 2012

I was dx June 10, 2011 and had my surgery on Monday the 13th. It was a shock and still is really. I was stage IIIB. How I did not find this board until just a few months ago I still don't understand but it has been a great source of information and comfort (I've quit looking up stuff, I just come here now and ask my questions because I know someone who has already made this journey I am on can give me better advice than anything I can find on the internet. When I read Stage IIIB on my pathology report, I thought crap thats just a step away from Stage IV but I now know from all the great Stage IV people on this board that it isn't a death sentence, it is an opportunity to make better use of your life and live to enjoy it. Will it be an easy road for any of us, no. But as others have said, come here and vent, come here and ask questions, just come to talk. You will love having a grandhchild, I have two, ages soon to be 13 and 9. A grandson and granddaughter. The day after I was dx, my daughter in law and granddaughter took me to get a pedicure - it was during this pedicure when Kalie was sitting between me and her mom and she reached out her petite little hand that I almost lost it because like you, I thought how many more of these will I get to share with her. You see, I still cry when I think about that moment. But then I fast forward to about 3 weeks after my surgery and I'm trying to get out of the recliner and she has my hand and is pulling me up with her feet sliding forward saying, We can do it, Nannie, we can do it! and I smile. We can do it, whatever, that "it" is. You too, I bet, will look back and have similar thoughts, you will cry and you will smile. Come talk to us whenever you need. I wish you the best and will keep you in my prayers.

Debbie

Brenda Bricco's picture
Brenda Bricco
Posts: 564
Joined: Aug 2011

Hi Mom,
Crying can help relieve stress and this stuff has plenty of stress.
I want you to look forward to that grand baby and love him or her with all your might.
It was just last year that my husband was given his death sentence and the horrible statistics. He is now NED and enjoying his life daily, I wouldn't worry about the "statistics" I don't believe they apply to 2012 patients. Yes, this is a very sad dx and no one wants to find themselves with it BUT you have alot to live for so plan on living. Just make sure you have a team of docs that are cutting edge that know all of the options and how to apply them. There are some docs that want to cure you just to despite the cancer.;)
GOD bless you, my heart ached reading you post. You have taken care of a lot of folks and now it is time to let your loved ones care for you. I just want you to know that there are people thinking about you and saying prayers on your behalf. Believe in miracles, they do happen. :)
Brenda

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

I was dx this February, Stage IV, mets to liver, chemo for life. I'm not considered "operable" but the chemo has worked well and my CEA has dropped all the way to 0.9, which is fantastic. Not sure where I'm headed, but I'm staying positive and plan on living a long time. And a month after my dx, my only daughter, who was married last year, found out she is due in August with our first grandchild! The best news we could have gotten after the devastating news the month before. So I wish you get the same good news and a grandchild is in your near future. We're so excited we can't wait. Prayers and hugs from Kansas.

danker's picture
danker
Posts: 797
Joined: Apr 2012

I too had a chemo pump 24/7 while getting radiation 5 days a week for 5 weeks. Then surgery. Now 2 years later I am NED. AND AGE IS NOT A FACTOR. I was 77 when dx ed. As those above have said, it ain't easy but you can do it. Best of luck!!

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Wow, what encouraging things everyone has already said - things that I will never get tired of hearing. I know its scary but it is true, keep living your life. You were handled a raw deal but you will keep living. There will be some changes here and there but nothing you cannot handled. I found it easier to just share the news with a few close people at first. That gave me time to adjust to everything myself and convince myself that I am a fighter. Once I got my game plan in place (several months later and after the chemo was done), I let other people know because I had reached that point where I knew I was okay and I was able to reassure them as well. No one even knew I had been doing the chemo because I continued to do things I normally did - kind of like working when you have a cold. And, please, don't listen to anything people tell you about your health. Leave it up to the doctors. I cannot tell you how many times I would go see the doctors with some horror story my well-meaning friends told me that simply were not true. They were trying to help but doctors they were not. I know this is long but one last thing if you want encouragment... my doctor introduced me to someone that was a year out in her cancer process and we became Facebook friends. Seeing all the pictures of her smiling and enjoying holidays and life were a real eye opener. She didn't ball up and stay in bed for a year, neither did I and neither will you. Happy times will continue.

joann p
Posts: 50
Joined: Apr 2012

Maglets,
Your post gave me encourgament. My husband is 71 years old and recently dx with NET. He had colon CA in 2010, adenocarcinoma without mets or lymph node involvement. No chmeo, radiation needed. Last year it was prostate CA with 44 sessions of radaition. This year he went for a repeat colonoscoy, and low and behold, a large tumor was found behind the ileocecal valve that wasn't seen on the CT scan 2 years ago. The tumor was removed. His lymph node involvment is 2b, wnich means between 7 to 15 nodes involved. CT and PET scan's show + liver involvment with 5 to 6 tumors. We started on VP 16 and Cisplatin on May 16th, 1-6 hour session followed by 2-2 hour sessions. He did great and will be starting session # 2 next week with a WBC count of 28,000. Any more encourageing words from you would be greatly appreciated!!! I am an ER nurse and it seems that everyone patient I come in contact with recently has some form of CA which makes me more depressed than ever!!!! I am glad that you are doing so well, God Bless you and keep up the good work!!!!
Jo-Ann

Annabelle41415's picture
Annabelle41415
Posts: 4478
Joined: Feb 2009

Sorry you heard those three words that no one ever wants to hear. Right now you are going through an emotional rollercoaster and it will be that way for quite some time, but you can get through this as many here have been where you are and are still posting on this board years later. We will always be here for you at anytime of the day. There is usually someone posting so if you have a question that you need answered or just need some reassurance, don't hesitate to start a new post. There is no trivial questions here either - EVERYTHING is important. Welcome to the board and wishing you the best. You can do this.

Kim

tootsie1's picture
tootsie1
Posts: 5037
Joined: Feb 2008

I know it's scary and feels like your whole world has collapsed. You WILL feel better about things.You've hardly had time yet to wrap your head around this diagnosis.

It's not going to be a picnic, but you CAN conquer this beast!

*hugs*
Gail

taraHK
Posts: 1961
Joined: Aug 2003

I am so sorry about your diagnosis.

FYI, I was 44 when diagnosed -- Stage III rectal. My kids were 10 and 12. They are now 19 and 21! Yes, it's been over 9 years. I've had some recurrences (lung, bone) but I am still alive and kicking -- and enjoying my kids! I'm looking forward to the weddings, grandkids, if that is what happens....

You are not alone.

Tara

herdizziness's picture
herdizziness
Posts: 3551
Joined: Apr 2010

I so remember those feelings, knowing I wouldn't see my newest grandson born, my son graduate from college (with associate's). Not only did I see my newest grandson born, he will be two years old on the 17th of this month. I watched my son graduate from Cabrillo College with his associates degree and I will be there to watch him graduate from UCSC next year with his Bachelor's degree, I will also be there to watch my daughter graduate from Wright State University with her Bachelor's degree. All things I thought I would never be here for. I'm here still going strong. I had mets to my liver (soo many mets to the liver)mets to the ureter, mets to the lungs, etc. The mets to the lungs calcified with chemo, the liver mets shrunk and many calcified to the liver, the mets to the ureter shrunk, the tumor in the colon shrunk, all enough to have surgery. I've been around 2 1/2 years since diagnosis, I expect to be around many more. I expect that you will be too.
It's hard to wrap your head around a diagnosis of colon cancer, much less stage IV, but you will, and you will find your strength, and you will go on, and you will survive. (By the way, we've all had our pity parties, and we've had them here on the board, and it's perfectly okay to do so, I did a LOT!!!)
My heart goes out to you, but remember, you will survive.
Winter Marie

Karen63
Posts: 25
Joined: May 2012

I was diagnosed with stage 4 colon cancer with mets to the liver on April 12. I understand what you are going through! I had colon surgery that day and then after a PET scan they decided to do liver surgery - thought they could get it all first before chemo. That didn't work out - 9 tumors - so, starting my first chemo tomorrow - June 1. I am antsy and so all these wonderful folks who responded to you have now helped me too! I am just trying to take it one day at a time. I know it is hard. It is just so hard, but with so many wonderful people - doctors,nurses - this board! - we will make it! My very best to you - Karen

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 489
Joined: May 2012

I see that you only had 3 show up on PET scan, and they opened you up and you had 6 micro spots. I am seeing surgeon tomorrow and going to ask for MRI first - I guess that will show the micro spots. Good luck with your chemo - I will be starting after surgery and recovery - 24 weeks every other week.
Thanks,
Sandy

lesvanb's picture
lesvanb
Posts: 909
Joined: May 2008

so not much to add except to just keep living ..and ..breathing ..and enjoying.. this precious life.

I was diagnosed stage 4a (one met to the liver) 5/'08 at 56 yrs; was NED (no evidence of disease) after liver resection surgery 10/'08. I had a recurrence in my lungs, 4 mets, 6/'10 and was NED after SBRT (stereotactic radiation) 1/'11.

Still NED, now 4 years later from diagnosis,....and riding in my first bike race this Saturday June 2 - 36 miles on my mountain bike -(really a ride and celebration with 3500 women in Logan UT and raising money for the Huntsman Cancer Institute.)
25th annual Little Red Riding Hood http://www.bccutah.org/lrrh/

So life goes on!

all the best, Leslie

Phil64's picture
Phil64
Posts: 565
Joined: Apr 2012

Especially to Swimmer22! I'm encouraged when I read the positive reports from people who are facing and going through similar trials. I'm believe I can speak on behalf of Sandy (MomofTwo) and myself when I express this appreciation. My wife has been very emotional these last few days, since the stage IV diagnosis, and both she and I read these posts last night. Swimmer22 - your post sounds almost exactly like what I'm going through. I too skipped the biopsy and had the lung nodule removed on Friday. I had a colon resection done a few weeks ago (5/11). And now, not unlike what Sandy is doing, I'm trying to figure out what the prognosis is for me given stage 4 diagnosis... I too have a young step son (12 years old) and four other older children and I want to be around for hs graduation, mariages, grand babies, etc. Your positive reports really help me keep a positive outlook on the future and help my wife deal with things as well. God Bless you and keep them positive reports rolling in.

PS. I'm learning the cc jargon and the one Acronym I'm going to post above my bedroom door and hit every morning on the way out, before I face the day, is NED! This is my goal!!! I want to be classified as No Evidence of Disease!!!

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