CancerCompass message board discussion started by day2day on 7/8/2008 http://www.cancercompass.com/message-board/message/all,25828,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ The more research I do, the less hope I have.  I don't see anyone who has survived stage IV rectal cancer with metastisis to liver.  From what I'm able to see it either comes back in the colon or lungs.  And it seems as though every surgery, every chemo and every radiation is just an expense borne by the family at a later date.  I love my family and I don't want to leave them, but I also don't want to leave them bankrupt for a few extra months.  I need to work to take care of my family, and all these procedures seem to incapacitate patients both physically and mentally.  Given the really low survival rates at this stage, the exhorbitant costs and the incapacitating nature of the treatment, I don't know if I can justify all of this for maybe a year. day2day Tue, 08 Jul 2008 00:00:00 GMT dont give up!  Remember that survival stastistics do not apply to individuals, they only apply to groups of people.  I am willing to bet you will find someone here who has survived stage IV CRC.  Even if the outcome is as your fear, how would you want to be remembered?  As someone who fought every step of the way or as someone who gave up? Oncrx Tue, 08 Jul 2008 00:00:00 GMT Hello,I can't give you my long term survival time, because in August I'm just coming up on a year since my diagnosis.  My diagnosis was stage IV rectal cancer w/ mets to the liver and both lungs.  When I was first diagnosed, I read all those dismal survival statistics.  They were very, very grim and very depressing.  My oncologist chided me for reading them.  He told me that all the statistics are outdated, because they are based on patients who were diagnosed and treated before the newer chemos and other treatments were available.  If you're looking at 5 year survival rate statistics, then they're definitely outdated!  My oncologist wisely told me "you're not a statistic and I have a lot of hope that you're going to beat this".  Other colleagues of his probably would have thought he was wrong to tell me that, given that I had 12+ tumors in my liver (too many to be considered for liver resection), both lungs were filled with tumors, and my rectal tumor was considered large.  But, since he never told me I couldn't be treated and that I only had a certain amount of time left to live, I had a very positive outlook and decided that I was going to prove those statistics wrong and that wouldn't be me!!  Against all odds and less that one year after being diagnosed, I am currently considered to be in remission!  I had 6 months of chemo (Folfox and Avastin) and everything in my lungs disappeared except a 5 mm tumor in my right lung (which no longer shows up on the PET, just the CT).  Most of my liver tumors disappeared and I was down to just 3 & was then considered a good candidate for liver resection (which I had on May 23 & am now recovering well from).I had radiation on my rectal tumor (which supposedly most oncologists and radiologists wouldn't consider doing on a stage IV patient).  My tumor had a complete response, in that it's gone!  My pathology taken during the follow up flexible sigmoidoscopy at UCSD showed absolutely no sign of cancer.  My colorectal surgeon was amazed.  She actually sent me a personal email late at night letting me know how pleased and amazed she was.  My advice to you... DON'T GIVE UP!!!!!!!!!!  You can beat this!Again, I don't know what my future holds & I'll be having follow up scans and checks every 3-4 months for a while to come.  Each time I have it done will bring anxiety, and I know the recurrence rate is high.  But, like I said before, the "statistics" don't have to dictate what will happen to you or me- statistics are averages- some people included in those statistics faired much better than those posted numbers.  I plan to be one of them!Best wishes to you,Lisa lisaann Tue, 08 Jul 2008 00:00:00 GMT I am not stage IV, but as Lisa said, do not worry a lot about the statistics.  Most are quite outdated as they are showing stats based on figures that are usually from pre 2000.  In addition, you need to know that NOT all stage IVs are the same.  Now that may sound silly but its true.  I don't know how many mets you have and where they are but if you have mets only in the liver or only the lung, that is better than having it in numerous places.  In addition, even if you have it in more than one place, a lot of how well you do depends on how big they are, how many there are, etc. at diagnosis.  OK, so I went back to your other post and read again that you have mets to the liver.  That's good as the cancer is not in multiple places.  You don't say how big the liver mets are or how many.  If you only have one or two, close together and small, you may very well be a good candidate for a liver resection.  There are sooooo many options out there that you are probably not even aware of and you need to find the right team of doctors who are willing to help you.  How did your follow up with the surgeon's office go?  What did they say? This particular board is very small and may not give you an adequate representation of rectal cancer patients.  I am on 5 other boards and I know that there are many stage IV rectal cancer patients out there.  On one board I know of a man who has been battling stage IV rectal cancer for 2-3 years now and he has not had surgery.  I personally don't know all of the details (I have a good guess) but I often wonder what his prognosis would be had he had the surgery in the first place.  Yet here he is, doing all right, on chemo (not for the entire time) and living life.  PM me if you want to know of some other resources to talk with people who are like you.Chemotherapy  wouldn't be given to patients if it didn't work.  True, for some people it works better than for others and sometimes it takes a few tries to get the right combination of drugs that are the most effective.  Right now you have to believe that the team of doctors are doing their best to find the right treatment for you.  In addition, I know of many many stage IV patients who do undergo pelvic radiation for their rectal cancer and the radiation has enabled the rectal tumors to be taken care of and then chemo and/or surgery can be concentrated on the location of the mets.  A lot depends on your team of doctors and their approach.  If you don't think that the docs are being aggressive enough, seek another opinion.  There's nothing wrong with that. The waiting is probably the hardest part because during this time you either want to get on the internet and read EVERYTHING you can and many times you read articles, stats, etc. that frankly aren't all that encouraging OR you want to just curl up and pretend this doesn't exist.  Try and educate yourself (via the internet, support groups, etc) about all the possible treatment avenues that may be open to you.  Then when you talk to the surgeon or onc, ask them questions.  If, for example, they were to say, 'no radiation', ask them WHY.  Make them explain it to you and if it doesn't seem to make sense, then find another doctor.  There are no guarantees with any kind of cancer, but I can tell you that having a positive attitude goes a LONG LONG way in helping you fight this.  The last thing you want (although it's easy to have this) is to have a negative attitude because that CAN go a long long way in determining how you will fare.Jaynee soccermom Tue, 08 Jul 2008 00:00:00 GMT  On 7/8/2008 day2day wrote:The more research I do, the less hope I have.  I don't see anyone who has survived stage IV rectal cancer with metastisis to liver.  From what I'm able to see it either comes back in the colon or lungs.  And it seems as though every surgery, every chemo and every radiation is just an expense borne by the family at a later date.  I love my family and I don't want to leave them, but I also don't want to leave them bankrupt for a few extra months.  I need to work to take care of my family, and all these procedures seem to incapacitate patients both physically and mentally.  Given the really low survival rates at this stage, the exhorbitant costs and the incapacitating nature of the treatment, I don't know if I can justify all of this for maybe a year.Hi, I know how you feel. My husband has stage 3 and I did the same research. It is very discouraging. All I can tell you is don't believe any of it. It is all old news. You family is very lucky to have you. Most of us can't afford such a sickness. My husband had the same worries. But believe me I rather him be here and be poor then be rich without him. If you do die as a result of this your wife may not be liable for your bills. Most doctors will work out the final bill. Please don't let a simple thing like money make your choice. It's a hard road but we are all in it together.Toni AngelBaby Wed, 16 Jul 2008 00:00:00 GMT I can only echo the previous messages!  DO NOT GIVE UP!  Attitude is a huge factor in your successful battle.  I was diagnosed with stage III/IV rectal cancer with mets to the lymph nodes nearly two years ago.  The rectal tumor was large and nodes effected were in my chest and groin.  We elected to go with chemo prior to considering surgery.....5FU, Avasten, and Oxiplatin.  After six months a PET scan revealed no activity and a rectal scope showed the tumor was gone.  This after I had read (and refused to believe) stats showing 26 month survival average.   I've been lucky in treatment and have an excellent medical insurance plan but the thought of cost surely has been there.  The major motivation for me to fight and endure the treatments  has been my wife and family.  They want me here more than any amount of money.  For them I fight and so should you. keep the faith and don't give up......Terry C. TerryC Thu, 17 Jul 2008 00:00:00 GMT Hello,My father was diagnosed with rectal cancer in May of 2008.  He had a colon resection that they removed a 6 cm tumor.  Also had 3 positive lymph nodes found during the surgery.  My father is 74 years old and is set in his ways.  I'm sure between my mom and dad they are mixing up what the doctors or medical staff are telling them during his visits.  And of course my dad will not take me along with them to the doctors.  Monday he is starting his chemo.  They are putting him on fluorouracil, oxaliplatin, and leucovorin.  Also taking a antimedic of Emed.  Radiation is starting in September.  My dad states he most go in twice a week for his chemo so the office can clean his machine.  Also he states that he is going to be on chemo continously for 4 months.  They are starting him with a strong dose on Monday and decreasing the dosage when he starts radiation which will be a whole month.  The radiation doctor told him to tell people he will not die.  I don't know how a doctor can promise that to a patient but he did tell my father this information.  I'm trying to stay positive but still am scared.  I'm glad to see all the positive feed back on this message board.His doctors told him if he has children that they need to go for a colonostomy since this cancer can be genetic.  Also they told him that his tumor is aggressive because it never broke the bowel wall but mets to the lymph nodes.  Thought I would sign up on this site to interact with patients and family members to help me get through this time.  It scares me the word cancer.Barb bapper79 Fri, 18 Jul 2008 00:00:00 GMT Well, it's only been 20 years for me to survive Stage IV but guess it still could 'get me' if there was anything left in there to 'get'. Don't remember liver involvement, but they have liver-specific treatments now that didn't exist then, so I'd get a second or even third opinion and go with whatever feels right to you for your body. Chin up, the way they are coming out with new meds and treatment all the time, there might be a cure right around the corner and what if you give up the fight and miss it?!? I've lived to have two more kinds of cancer, skin and breast,(that was a 5 year go-round) and am now cancer free so NEVER give up hope and Always plan to win. I said then that as long as I had 51% chance of living, I would take it. They lied, it wasn't even close to 51% but I believed them and it happened anyway. You never know what combination of mood, will to live, meds, staff, friends and relatives will work, so try whatever feels right for you. I was exhausted, as I planned to live and also planned to die, just in case. I put labels on everything, a name of the person the item was 'to go to', just in case. Took me years to find all those little stick-ums & remove them! There are all sorts of things available now, immuno-suppresents-sp., hormone based, targeted, gene therapy, etc. I also wore funny t-shirts to radiation to cheer up the techs.(well, it was snowing and they drove 30 mi. on ice to give me the weekend treatments one weekend)Before I had my surgery in '88, I was given 6 wks to live if I did nothing. I was 42. Nat'l Cancer Board said there were only 4 others like me at that time. Squamous cell. Anal, rectal, colon involved. I was to try a new protocol, First was rad. & chemo, to stop it, then surgery, then clean-up chemo. Apparently it worked pretty well, I'm still here. They wouldn't tell me about the other 3.Radiation every day for, I think, 4 or 6 wks first. Then I was started on 5fu and Cisplatin infusions, both before and after the surgery.  They did an AP resection, found many positive nodes, gave me a permanent colostomy and a tummy tuck and surgery was over. Apparently about everything in there was affected, but all cancer cells were necrotic (dead) by then. Then the clean-up chemo 'just in case'. I was pretty sick both chemo runs until started on THC tabs, then much better. Only thing that cured the nausea. Food smelled bad and tasted awful, so it was prepared in another room and I'd go in last minute and take a bite without smelling, held my breath getting in there, then it was fine. We found that cold things were best, little odor. Coffee smelled like skunk. Thank God for exhaust fans!I never 'had a feeling' if I would live or die, so just planned for both and hoped for the best. Holidays were bittersweet, was it my last? I fully believe, along with medical care, that friends get one thru just about anything. Make the most of each day, do what you enjoy, take time to tell your loved ones that you care. Rest. Read. Meditate. Socialize. Have a pet or borrow one. A good balance keeps you involved, gives you things to talk about so people want to be with you, not scared off by your doldrums. Form a care team of friends/relatives to share the work and the fun. Read the book 'Share the Care', by Cappy ? and ?  ?  ,  it will tell you how to set up a Care Team. I treated mine to a weekend in a wooded cabin at the lake after it was all over with the breast cancer treatments, surgeries, etc. etc. and we are all still friends. Good luck to you . . . hope this helps. Never give up! BarbInTexas Thu, 07 Aug 2008 00:00:00 GMT I survived two snycronous (sp?) stage III tumors, one in the rectum & one in the colon, 5.6 years & if they where not snycronous then I was stage IV My oncology surgeon said it spread from the colon to the rectum All others MDs said it was simultaneous (sp?) I have repercussions, chemobrain & frequent & urgent BMs but I survived Please don't give any more energy to the cancer than it already has, allow the medicine to work, find the best MDs you can & pray!!! keep the faith & be one Mikey halfagut Thu, 07 Aug 2008 00:00:00 GMT Just wanted to say that my dad got stage 4 bile duct cancer and chose not to have treatment......It tears me apart every day that he didn't try to fight it. So for the sake of your family, PLEASE DON"T GIVE UP. I was 15 when dad died, and we would have slept in the car if it meant having him here even for a little while longer. I now have stage 4 colorectal and I have 3 children under 6 years of age and I'm fighting it every step of the way. I'm not giving up without a fight, no matter what financial cost, beacuse I know they would prefer to be poor with me here than rich without me (Not that we have any money now anyway!!!!)Please don't give up. Mihalo mihalo Sat, 09 Aug 2008 00:00:00 GMT  Don't ever give up.  My husband was diagnosed in June of 07 with stage IV mets to liver.  We felt the exact same way after reading all of the stats.  However, after a lot of deep prayer, a lot of positive information, and a great support team from the medical community, family and friends, my husband is currently NED.  He went through a lot to get there and we still pray deeply for his body to stay disease free.  He is following best he can a preventive diet and will soon begin to be able to exert some physical activity.  He is finally being released to return to work and his mind has always been strong but even stronger now.  Every three months he will have ct, pet and blood work done,  His surveillance itself will be a preventive measure for in the event of anything suspicious, there is time to do something about it.  I must admit, I stay confused a lot these days, but I always ask in prayer for God to see us through this and for him to keep his almighty healing hands on my husbands body and mind.  Our spiritual journey this last 14 months has been the only thing that relieved our worries.  As the caretaker, I can honestly tell you that your family doesn't want you to give up or feel as though there is no hope.  They love you and they hurt for you, but they also want you to fight with everything available to you.  There is so much in the medical arena to get you through this and you must believe in your heart and soul that a cure is in deed coming. With all of my hope and prayers to you, stay strong and positive, and DON'T EVER GIVE UP.Melinda  quickdraw Sat, 09 Aug 2008 00:00:00 GMT Melinda, bless your heart, thank you for your words of encouragement.  It's really weird, I've never felt unhealthy, I have only had one week where I couldn't work and I have been working out and really for the most part living pretty normally.  I made a breakthrough when my Father sent me a copy of Dodie Osteen's book "Healed of Cancer".   And over the course of the past 6 weeks and going into my 3rd chemo tomorrow I have been blessed by a healing from my Father and my local church has started a 21 day fast and prayer for healing.  So I am blessed and believing in a healing.   I will pray for your husband, please send me his name so we can be specific.  You can contact me directly if you like at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- .  Thank you again for your words of encouragement, I can't tell you how much they mean to me. Cheryl  day2day Tue, 12 Aug 2008 00:00:00 GMT Thank you, and bless you for all you're going through and reaching out to me.  I will tell you that I did have a complete change of heart when my Father sent me the book "Healed of Cancer" by Dodie Osteen.  I recommend you get that book, if you can't get it, let me know and I'll send you a copy.  It has changed my life - saved my life.  I'm sorry for your father and I'll pray for you and your children.  If you need someone to talk to you can reach me directly at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- .. Cheryl S day2day Tue, 12 Aug 2008 00:00:00 GMT A POSTITIVE ATTITUDE is very important.....I need to thank everyone on here who has showed me that YOU CAN WIN......I fear EVERYDAY, I will lose my husband....after reading everyones posting on here....I HAVE HOPE....we ALL must have hope and postitive thinking...........THANK YOU.                                                 Sheila 570sheila Wed, 20 Aug 2008 00:00:00 GMT