Rollercoaster of fear and hope

[Lifes2short]

Hi all,
I just need to vent a bit. I'm sick and tired of riding this colon cancer roller coaster. I just want it to all go away, even for a day.

Two months ago I had my last round of Folfox. I stopped after six rounds because the side effects were too much for me to handle. Up until then, things were looking pretty promising. Each scan showed that the lesions in my liver were shrinking and there was no new cancer. My CEA was dropping with each test.

I had a PET scan ten days ago and my surgeon called and told me that it was "cold". This was wonderful news. Now it seems the news is gradually getting worse. The PET scan wasn't completely cold. There's still a mass in my rectum that they've been watching since surgery last year. It's still lighting up and suspicious for cancer, but it's not changing much so nobody's very worried about it.

I was told that I'm in remission. I began to have hope for living for several more years - maybe even beating this beast completely. I went through the very difficult decision of whether or not to have liver resection surgery. I've had every opinion from "must do" to "Don't even consider it". Finally had a nice meeting with my surgeon last week and decided to hold off on surgery at least for a few months. I was finally feeling calm and looking forward to a few months of blissful remission.

I met with my Oncologist last week and had a blood test. My onc called me Friday evening and informed me that my CEA is on the rise again. He also got a copy of the PET scan report and told me that they saw a spot in my spine light up. The radiologist couldn't confirm it as cancer. My surgeon didn't even mention it to me. Now my oncologist wants me to have a bone scan. He says the CEA combined with the metabolic activity in my spine could be a sign of mets to the bone. Now I'm terrified again.
I'm still suffering from severe fatigue. I've been blaming the chemo but now I'm worried that the cancer is back.

Last week I dared think about seeing my kids grow up. Now I feel hopeless again. I hate cancer and all it steals from us!

[missjv]

hi,
i know it sucks and it makes you feel like crap and you wish it would all go away. i think we all go through it. i answered your liver resection post and gave my opinion about the surgery it sucks it hurts but after 3 months i feel great my liver has no cancer on it and my scans are clean. when i had resection of liver my scans showed no activity yet when surgeons got on my liver and got the 3 spots out they showed residual live cancer that did not or will not show up on any scans 70% of my 3 spots were dead but not all the way and if they were not surgically removed they would just grow again. thats why i was stressing the surgery so much to get the cancer cut out. just cause you can't see it on scans does not mean it is not there and if it is there it will spread. thats why i chose liver resection and adjuvent chemo for 6 months because there have been alot of success in the place i go with this treatment. go with the most aggressive form of treatment you can get. if you go to a place that regularly does liver surgery then the risks are very low that there will be complications. sloan kettering, md anderson, vanderbilt, fox chase, upmc in pittsburg those are some of the well known places for this type of surgery. there are people who have been cured from stage 4 or are living with it as a chronic condition and have been around long after diagnossis anything is possible but you have to go search out the best treatment. i was told at 1st onco visit i had statistically 2 years and you can't go cutting up body parts well neither are true but i had to go refer myself to sloan kettering that bonehead doc just wanted to put me on palliative chemo which was bull crap im only 40 and have an 8 year old child and i didn't care if i had to go to the fricken moon to get the best treatment i could i was going to get it and so far things are looking better and better. if cancer can be surgically removed then do it. good luck try to keep your chin up i know it is hard i went through the depression, the anger, and everything else that goes with cancer but now i figure i went to the best place in america for treatments and i feel good and my brain says i will beat this crap thats my mode of thinking now and it helps me stay sane.

missjv

[Noonie2]

So you have had a 'spot' around your rectum that has been showing up on a PET scan for a year+??!!

You have lessions on your liver but the surgeon tells you to 'wait'??!!

Take this into your own hands and start demanding......NOW!

To me, it sounds like you could have been 'taken care of' a long time ago!

Second opinions, new doctors??!!

Where are you from?

Love and Prayrers,
Noonie2

[missjv]

hi noonie,
im with you i don't understand her doctor at all. especially the liver lesions that surgery is getting to be so common now and the only way to keep cancer spreading is remove it from the body. unless there is cancer in other parts then they won't do liver surgery. i feel bad for her i wish she would go to a place like sloan or md or somewhere where they are aggressive. some docotrs just aren't aggressive enough my 1st onco would have killed me for sure if i had not seeked out another opinion and researched my ass off. i was told by doctors at sloan they only way to significantly prolong survival or possible be cured from stage 4 colon cancer is if the mets whether on liver or lungs can be surgically removed. if cancer is surgically removed it can't spread. these pet scans are good but they will not pick up small stuff thats why resection surgery is usually followed by months of chemo. chemo alone very rarely will cure metastatic cancer and just cause scan might say no sign of cancer it is highly possible it is still there even for those of us with resection done but thats why the months of chemo following surgery. my 3 month scans were clean from what they can see but im still far from being out of the woods cause there could be micro crap that is not seen so im hoping my 6 months of chemo gets rid of it. im a firm believer that the treatment one receives is critical in surviving this crap. i at 1st was given no hope and put on plliative chemo because of 3 very small mets on my liver and was told can't go cutting out body parts well here i am spots removed on chemo till june with a much much better prognosis just from seeking out better medical care. i knew nothing of colon cancer, liver mets or anything i had to be my own doctor until i finally got good ones who wanted me to survive. i hate to say it but some docs don't give a crap. my 1st doc didn't seemed bothered that i was 39 years old with a young child she treated me like just another person coming through the door with a disease considered incurable which is not the case very many people have been cured and most of the ones who are have been treated by the larger cancer centers. there is not one doctor in my city who does liver resection and i live in a pretty good sized town with a great hospital so if they don't do it where you are you often don't here about such procedures that can save your life. i had to travel from florida to new york and still do once a month yes it can be a pain but im here i feel great and i got a chance. please go get another opinion and don't believe that remission crap from a few rounds of chemo. my liver lesions responded very well to chemo and did not show on pet before surgery but when surgeons got to my liver those spots were still there not as active but still alive enough to keep spreading and growing if they were not removed. so just cause my scan said so called remission that was not the case im so glad i did not take that and still did the surgery. good luck! i hate sounding like a bit.. but you need to go find more aggressive docs. i had read one of your posts before stating that after you have liver surgery your doc recommended no chemo cause cancer will be gone. this is a systemic disease just cause he cuts it off liver does not mean it is not hiding in a lymphnode some where thats why the follow up chemo. im not a doctor but i have had many opinions and 95% say adjuvent chemo following resection is the way to go. im not being mean i hope you don't take this post the wrong way i am just a young mother like yourself and am concerned you are not getting the best treatment that you deserve.

missjv

[Lifes2short]

I've had second, third and fourth opinions. My surgeon IS an M.D. Anderson trained surgeon. The "spot" in my rectum was seen during initial rectal resection. It was and is inoperable due to extreme radiation damage in that area. We've been watching it for a year and it hasn't changed, but the fact that it's there makes my a sketchy candidate for liver surgery.

My surgeon is very aggressive and wanted to operate in spite of the rectal mass. Second, third, and fourth opinions weren't so high in the idea. They figure theres as much as a 95% chance of recurrance within a year of surgery. So why go through it? The surgery is also extreme. They'd first have to do a portal vein embolization to kill my right lobe in hopes of growing my left (no turning back after that). In the end, they'd likely remove as much as 70% of my liver - very dangerous on a liver that has had chemo.

It appears that the risks outweigh the potential benefits. The fact that my CEA is on the rise again also pretty much excludes me from being a resection candidate.

So it's really not so simple as "see a real doctor" or "go to Sloan". I was mostly looking to vent my frustrations. Not to hear how stupid I or my doctors are.

[missjv]

HI,
I OR NOONIE WAS NOT CALLING YOU STUPID. I WOULD HAVE HOPED YOU UNDERSTOOD THAT AS I STATED IN THE POST I WAS NOT TRYING TO BE A BITCH OR MEAN OR ANYTHING LIKE THAT I WAS JUST CONCERNED THAT IS ALL. I HAD READ BACK ON SOME OF YOUR POSTS AND I DID NOT SEE WHERE THE RECTUM SITE WAS DAMAGED MAYBE I MISSED THAT I HAD SEEN WHERE YOUR SURGEON HAD RECOMMENDED LIVER RESECTION AND YOU WERE CONCERNED ABOUT THE SAFENESS OF THE SURGERY AND OUTCOME. AS I UNDERSTOOD YOUR POST YOU HAD ONLY A FEW LESIONS MAYBE I MISUNDERSTOOD I AM SORRY I DID NOT MEAN TO OFFEND YOU IN ANYWAY I WAS JUST WONDERING IF YOU MAYBE WERE IN THE SAME BOAT THAT I WAS IN WHEN I WAS FIRST DIAGNOSED AND I HAD DOCS WHO TREATED ME AS A LOST CAUSE AND I WENT ELSEWHERE THAT IS ALL I WAS TRYING TO IMPLY I WAS NOT TRYING TO MAKE YOU FEEL LIKE CRAP. I JUST DID NOT UNDERSTAND HOW THEY CAN TELL YOU THAT YOU ARE IN A REMISSION WHEN FROM WHAT YOU POSTED SOUNDS LIKE IT IS NOT THE CASE SINCE YOU STATED A SPOT WAS NOT EVEN MENTIONED AT ALL TO YOU AND THE RECTUM SPOT IS STILL SUSPICIOUS. AGAIN SORRY I DIDN'T MEAN TO OFFEND YOU I WAS JUST TRYING TO OFFER SOME HELP SINCE I HAVE BEEN THROUGH THE LIVER METS, THE RESECTION AND THE REST OF THE CRAP THAT GOES ALONG WITH IT. GOOD LUCK I HOPE EVERYTHING TURNS OUT WELL FOR YOU AND YOUR FAMILY.

MISSJV

[meighan]

I am posting to your original post.............. I completely hear you and it is a roller coater ride and i like an easy going ferris wheel One thing from reading this board and going through it as a family you realize one day is all good news and another all bad, how can it change that quick, how can our mind and heart ever feel safe??? My husband is facing his one year scans and one side of me believes whole heartedly that it is all going to be clear. So how can another side of me remember getting the news last year and be preparing for another round?? One moment i am full of hope watching the first signs of spring and another i am wondering if we will ever do all the things we hope for........... and as his scan aproaches on good friday it gets worse. It is a holy week and we deserve good news right but who dosen't deserve good news and we know it doesn't happen that way.............. just read this board and you can see that. I watched my mother fight cancer for 12 years she was considered cured when it came back so how do i find comfort in that word even.(By the way she was treated at sloan, great hospital true but there is still no cure that even they have) One thing is i have gotten tired of being scared of cancer and yet it still finds me just when i think i have figured it all out. So i understand how you feel maybe from another view but i have been to all the remission celebrations and to the deep dark despair of what now.... it is a roller coaster and i hope this post finds you on the top with a great view. Take care of yourself.

[missjv]

hi,
well to anyone i might have offended sorry again. no sloan doesn't have a cure for cancer thats true. i was only trying to make the point that sometimes you have to leave your realm and seek help somewhere else. my town has no doctor that performs liver resection so therefore everyone looked at me like i had 3 heads when i mentioned it. so therefore i took myself somewhere where i was told not all stage 4 cases of colon cancer are incurable as i was told in my little home town that it was incurable. i was not trying to make anyone feel stupid. my point was sometimes the larger cancer centers who deal with more cancer patients and do research can offer more treatments then other places can. so far i am showing no signs of cancer since my liver surgery. wonder where i would be if i had not gone and got treated elsewhere and sat plugged into chemo, more then likely the cancer would still be on my liver???? again sorry to offend anyone.


missjv

[bossan]

I'm still suffering from severe fatigue. I've been blaming the chemo but now I'm worried that the cancer is back.

Last week I dared think about seeing my kids grow up. Now I feel hopeless again. I hate cancer and all it steals from us!

This will pass, remember that. When we hit bad news we go into shock.

There are many people who post here that are beating this disease AND think they have it figured out in a way that applies to all.

There are many serious complications that can arise from surgery that can reduce your quality of life that sometimes outweighs any potential benefits.. Just because some have success with it does not mean it is for everyone. we are all very different.

Note to MissJV, you run on posts are very difficult to read. Short paragraphs work much better, especially for chemo brain sufferers like me

[missjv]

hi bossan,
sorry for my long posts i am a chatterbox. i don't mean to go on i just wish all here could beat this disease and have an easier time of things thats all. i know some respond better then others to treatment your right whats right for one is not for another, just trying to help and spread some hope from a person who was given a big write off at diagnosis. take care!


missjv

[georgemma]

Hi meighan and all: I agree that this is a roller coaster ride . . . one near my house is called "The Beast." We all want to ride The Beast and destory it. Many years ago, my mother, newly widowed, faced a mastectomy, then chemo and radiation on her own. When the treatment was over, she threw a party to thank all her friends who had been so supportive. A few months later, she found out that there were liver mets, and she died weeks later. My radiation oncologist keeps asking if I am going to have a party to mark the end of my treatment, and every week I answer no. This is just one part of the ride that is coming to an end; who knows where the journey will take me?

[Lifes2short]

Thanks for the support all. I agree with the ferris wheel analogy. I think even a ferris wheel is a bit extreme for me these days. Perhaps I should just stay on those little carnival horsies that my kids like to ride; I think I can handle the little tiny ups and downs.