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Just got PET scan results..... I am a mess.... HELP ME!!!!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I can barely see through the tears to type this... my hands are shaking uncontrollably. I had to come here for some answers. I have never felt such despair in all my life. This is the first pet scan i have had since surgery. I have been nervously awaiting results. The tumor that was removed had grown thru the colon and into the abdominal wall. The doc informed me a small spot was seen on the pet in my liver. now i am a stage 4. is this my death sentence? once u r a stage 4 aren't they just treating your cancer trying to prolong your life? There is no way it will just subside at this point is there? i am facing continual treatments until my death...and how long will that be....months??? how do i tell my kids... oh my god....oh my god....oh my god... can they do surgery and cut it out of me? they are talking chemo first...they say that should take care of it.... then if it does do they put me back to a stage 3.... this all confuses me. anybody out there sharing anything similar???? Please tell me your stories...advice...any input would be greatly appreciated.

Jennie

Do you think I should get a second opinion? Like at that big facility "Cancer Centers of America"?

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

Jennie,

I mean that. Sit quietly for just a moment and take some deep breaths. Quiet. Calm. OK, here we go.

Been there, done that. It is absolutely NOT a death sentence! You will find many long term stage IV folks here and they will be in later to respond. Right now they are at work or out living their lives! They are NOT in treatment. You will have a LOT of treatment options from where you're at. Much more than chemo and if you are a surgical candidate, I want to celebrate with you! You will always be considered stage IV. Not to worry, you can do this. Yes, there are some of us in continuous treatment - long-term. If that turns out to be your fate, just know that we still LIVE. I have a wonderful, joyful, full life. And you get to play the canzer card for quite awhile... :) I really am a spoiled brat!

You need a major comprehensive canzer center from now on if you aren't already there. You need a TEAM that consists of: a medical oncologist (chemo guy), a radiation onc, and a surgical onc. If you can get an interventional onc on the team, do that. I will post a link to the NCI CCC's list by state at the bottom of this post. Use it if you need it. This is the time to find the big guns. My team is part of the GI canzer clinic - liver specialties. They only deal with gi related canzers with mets to the liver. The best and the brightest.

I'm a snob about this because I started at the small local clinic (stage III), moved to the medium sized clinic 35 miles away for follow up, progressed to stage IV and moved to the big guys 75 miles away. They made this NEAD status possible for me. I would be dead otherwise, I'm convinced.

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

I'm logged into the empty chat room now if you want to talk or you can pm me. I'll be online for a little while.

Hugs,

Kimby

JR's picture
JR
Posts: 140
Joined: May 2009

Jennie,
I'm so sorry to hear about your scan. My first scan was very similar. I am also stage 4 with my liver fully involved and several tumors in my lungs. However, it is not a death sentance. I was also told that I would be on some kind of treatment the rest of my life. That's ok, we will deal with it. There are many stories of stage 4's living a long life and I fully expect to do so myself. So can you. As soon as I started chemo my liver quit hurting and has shrunk quite a bit. I feel good most of the time. Try to keep your chin up and looking forward. You have many good years ahead of you. I think your feelings are shared by all who have had similar experiances. It's devistating at first, but you will deal with it and go forward. Good luck to you.

John

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

Jennie: so sorry to hear about this scan but it is NOT an instant death diagnosis. I had colon 5 years ago and the spread to liver with 7 mets. Jennie they just cut that old liver to pieces and then i did chemo. That gave me almost two years and then anothe tiny spot on the liver and they cut it out again and I am just finishing up chemo and looking forward.

Kimby is right...I had to travel 6 hours to my liver surgeon but I do my chemo at the local hospital. Do you have a GP...maybe you should call and get a nice calmer downer like Ativan just to smooth out the next few days .....your path will appear Jennie and you will get on it.

There are lots of us Stage 4's here still going with active wonderful grateful lives.

these first days are hard when you just panic

Stay in touch Jennie
HUgs
mags

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

a death sentence anymore. There have been so much advancement in cancer drugs over the years and sooooo many Stage IV SURVIVORS on this board. In my opinion, Stage IV is term that is only given to let the medical community know that it has spread to other organs, NOT that it is consider a death sentence.

I would talk to my team of doctors, get a second or even a third opinion, until you find a team of doctors YOU feel comfortable with along with their plan of attack.

We are here for you ALWAYS :)

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Hi Jennie, well that news sucks. But do not despair, as others have said there are many stage IV survivors. I have been at stage IV since I was Dx over 5 years ago. Sure, I still have a few nuggets in me but I'm here, just finished cutting the lawn, shopping and a bunch of other things. Now I have to finish with the pool and do the garden tomorrow. Oh, and in a week or so I'll go for yet another chemo. I work full time and have been throughout this whole thing.

They CAN cut it out of your liver, you can survive and live a good long life even if it takes a while to get to NED. I did chemo first to shrink it, then chemo. That was what was best with me. Try to get the best treatment you can, if you are not happy with your team then find people you do like/trust or trust/like. Trust is more important than like.

Stay in touch, try to stay calm, it's not anywhere even close to the end.
-phil

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

5 years ago tomorrow I gave myself a b-b-q asking family and friends to come give me strength and inspiration as I fought stage IV rectal cancer with 3 mets to my liver and 1 to my left lung. Surgery was not an option, so I did chemo (folfox with avastin). At the time deep down inside I think the party was more of a way for me to say goodbye while I still looked and felt good. Like you, the news of stage IV hit me really hard and took days even weeks to really sink in. I was told chemo would extend my life 2-3 years and I heard that but I don't think I ever really believed it. My oncologist mentioned that he had had his fair share of miracle patients and I decided right then and there I was going to be one of those!

So here I am 5 years later, NED for over 4 1/2 of those after never having surgery on my liver or lung!!! Non-surgical remission it is called.

There is a really cool procedure the bigger cancer centers can do called RFA (Radio Frequency Ablation) that laser zaps single mets without the major surgery a liver resection involves.

The liver is an amazing organ, if you do have to have a resection, it regrows!!!

Get to a major cancer center for a second opinion to find out which of your 3 options is the smartest one for you: Chemo, RFA, or a liver resection.

I will enjoy my memories tomorrow of having 160 wonderful people in my yard listening to a live band and eating good ole North Carolina b-b-q. And you imagine where you will be in 5 years!!!

Lisa P.

PS Like Kimby I got a second opinion 60 miles away at a comprehensive cancer center and KNOW I would be dead or dying today had I not.

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Jennie:

I am so sorry that you have cancer.

Your post this morning was a very personal reminder to me of the total despair I felt three years ago when my husband was diagnosed with stage III (later stage IV) colon cancer.

I remember sitting in the surgery waiting room at Hoag Hospital for what seemed like hours numb with the news of my husband's disease. Like your experience, I couldn't see through the torrents of tears that overtook me. I remember virtually collapsing into the arms of a duty nurse on my husband's surgery floor. Those were the worst moments of my life. Our situation seemed hopeless.

My world view at that point was very much shaped by the unrelenting negativity of coverage of cancer treatment in this country and by the terrible experiences of my family twenty years before when my father died of multiple myeloma.

What I have learned over the last three years, however, is that cancer treatment has made enormous strides, that negative assessments of the survivability of cancer are too often based upon outdated data, and that the human spirit can prevail even in the most frightening situations. I have also learned that it is critically important to assemble a team of positive, competent and informed doctors and nurses to guide you through your recovery.

My counsel to you is to listen to the wise and kind people on this board who have sent you messages of hope today. They have been where you are and they have survived.

In my husband's case, he has not only survived a stage IV diagnosis but he is thriving. His most recent CT scans showed no evidence of cancer.

Sometimes now I still have trouble seeing through torrents of tears but they are the tears of relief and happiness.

I send you my best wishes for your recovery. Stay close to this board and the positive support, wealth of information and real-life success stories that it conveys.

I'm sure it is difficult to think of yourself as lucky today, but you are lucky indeed to have found the good people on this board to support and comfort you. I can't tell you how much I wish I had had this board on that awful night when my husband was diagnosed.

Hatshepsut

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

I'm in NED right now and have been for 6 months. I'm on Xeloda and Avastin as a maintanence. Are you on any maintanence regimine now??

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

And, Jennie, I know it is very hard.

Nothing more shocking than a Stage IV diagnosis but it is absolutely NOT a death sentence. In your case only 1 "spot" showed on PET - that is really good news. Many treatments are available and you will doubtless hear from many others. I can only tell you my story........

I was diagnosed in May 2005 with sigmoid tumor and liver met. Sigmoid colectomy 6/05 - 6 cycles of Xeloda/oxaliplatin/Avastin from 7/05 - 12/05. NED (no sign of disease on PET or CT) after 3 cycles. We took a "chemo break" in 12/05, but frequent negative CT and PET scans kept me on that "break". So I never even had a liver resection or radio frequency ablation, because my liver met disappeared so quickly with chemo.

On my 11/09 scans a tiny lung nodule showed up - technically PET negative (SUV less than 1.0), but still vaguely brighter than surrounding lung tissue ( I sat with my radiologist and looked at it). We followed it with CT scans in Jan and Mar 2009 - no change in size, but since it hadn't shrunk we decided to remove it via VATS (scope surgery of the lung). We did that mid-April (easy surgery) and the nodule was a colorectal met - the only one as far as the surgeon could tell. So, now I am doing 6 cycles of Xeloda plus Avastin, the Avastin to continue alone for probably a year. My liver is still perfectly clear according to diagnostic CT and PET. I have lived and am still living a good and active life.

Please take time to breathe and relax. It is important to take this one step at a time and to know that things can turn out well. I'll be thinking of you.

Betsy
diagnosed Stage IV 5/05

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

My husband and I have sat home and cried all day. We keep checking back and reading your posts. It is giving us so much hope. You are all "real" people with the same thing or close to the same thing that I have. How you deal with it, your outcomes and advice is priceless. My onc. is so booked up that he can't even see me for 2 weeks to discuss a treatment. That bothers me. The ray doc i had today i did not like. That bothers me. I am flying to chicago to the Cancer Center of America for a second opinion.... which i will actually end up getting before my first opinion because that doc is too busy. Please continue to post. If any more of you have had the cancer move to your liver as i did i would like to hear the course of treatment you chose. Something else I wondered..... are there people out there that have been NED for 10+ years or do people not post here anymore after so long? I have never heard anyone say that as of yet. Thank you all so much. I hope you know how much you are appreciated.

Jennie

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

Jennie,

If you are a candidate for liver resection, that has the best statistical outcome for long term NED. Second choice for me was radiation (external beam or stereotactic) and it's worked well. But there are many choices including: Therasperes, Sir Spheres, HAI pump, HPH, RFA (and many other ablation therapies), and I'm sure I'm leaving out several others. Sorry, I just returned from Chicago this week and I attend The Liver Symposium. I'm quite full of liver treatment info. LOL Hope I didn't overwhelm you. Just know you have options. Which procedures are best for you will depend on your individual situation. Just know that most doctors will not know about some of the newer procedures, may not have read the success stats, and/or may not be willing to discuss a procedure not offered at their facility. That's why I went - I need to know so I can make choices for my own health and longevity.

HTH,

Kimby

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hmmm I wish my old mate Foxy (Virginnia from new zealand)still visited the boards.
She would have a few words of advice. She was dx with st4 colon ca with a large met to the liver. She had a wedge resection of the liver and twelve months of 5fu and levamisole. Last time i spoke to her(about two years ago) she was 13years clear of cancer. We had a bit of a celebration ,I was dx st3 with 6 nodes involved and had just reached my ten years ca free. To traditional views both of us were pretty much considered terminal.
From here on Jennie you have to make a firm commitment to life and living. Make a descision to beat ca and get on with your life. There are plenty of long time survivors of st 3 and 4 here to show you the way. My best wishes for a speedy recovery,ron 11yrs/6mos.

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

AMCP has a story for you ...Her hubby was told there was no hope for him and now he is doing very well just by getting second opinions. They found a place that would go the extra mile..Im sure she will see this and tell her story...Its a great story with a great end, if it doesn't appear soon PM her...she will share it with you.....Good Luck and Chin up...

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Jennie,

I'm praying for you and your husband. I know this news has hit you hard (I'm sure I'd be a mess). Lucky for you that you have found this site and have the benefit of hearing from so many who are doing so well after hearing similar news. You've already received so many good responses, and I'm sure you will get more.

I hope you are resting a little easier after reading some of the remarks.

*hugs*
Gail

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

....You were just like me when I learned of my diagnosis, a few weeks before my 44th birtday, I have Stage 4 CC with a tumor in my liver, and I was horrified! I had no symptoms, no sickness, no bleeding in stools or anywhere, I have 4 children, and a wonderful husband, just started gaining alot of weight, but I knew it wasn't normal weight, it was fluid and swelling, and feeling a hardness on my left side.. lo and behold, it was the tumor growing!

I cried and hugged my kids, thinking I was going to die in a couple of months, but my doctor and his team told me that Stage 4 that I had may not be curable, but it IS treatable, and won't even give me any kind of prognosis...because there are so many people who they thought wouldn't be here past a certain time, and had proved them wrong! they still have patients who have had stage 4 for like 9 years, 14 years, I mean, they just gave me so much hope. The stuff online I read about it will scare the hell out of you, so don't read the internet statistics and crap, it's wrong!

I started on chemo, and am on my 4th treatment, out of 12, and just got my first CT scan results since dx, and my doctor told me that the chemo has killed most of my cancer, so I know it's working!

Keep that positive attitude, and just go in fighting, don't let the beast get to you, and just keep moving forward with humor, and a great attitude, it will help in the healing and you will be just fine! Here I am almost 6 months later since dx, and I feel great, chemo really helped me feel better, I lost 30 lbs of fluid that was making me feel bloated and uncomfortable, but let me tell you, chemo isn't easy, but it does help, and it will knock the heck out of you, you will bounce back though! just get your boxing gloves on and come out swinging, there's alot of us Stage 4's fighting, and will do it for as long as we can!

Hugsssss and good luck!
~Donna

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Donna... thank you for your post.... we seem to have a lot in common from the cancer all the way down to wonderful husbands!

Kimby.... you are a walking library.... I wrote down all your info to take to my onc. visit.

Ron.... congrats on being C free all those years....thats amazing!!!

Buzzard, Gail JR Mags, Nudgie, Phil, Lisa P., Betsy, and Hatshepsut...... thanks you for making such a depressing day for me and my husband turn out to be a hopeful one. I no longer feel this is the end and you all made me realize not to sit on my *** and sulk..... but FIGHT... and I will....

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

Hi Jennie,

I'm just reading your post (yes, it's after 2 a.m. in California as I type this- I'm just not tired- thank goodness tomorrow is Saturday!)
Anyhow... been there, done that, as others have said. I have to say my situation was far more dire than yours and I'm here still here and doing well a year and nine months after my diagnosis. A week after my diagnosis where I thought I was a stage II, I got my "routine CT scan" results back, which instantly jumped me up to a stage IV. I had 12 tumors in my liver and many tumors throughout both lungs, all in addition to the large rectal tumor which had grown through my bowel wall. I was not a surgical candidate because of how widespread it was, so I immediately started on chemo- Folfox and Avastin. My oncologist amazingly told me "we're going for cure!" I don't know how realistic that actually was, but his attitude definitely helped me change into the fighting mode instead of the mode of thinking I was going to die. It's so important to have an oncologist who will support you and give you hope- some treat all stage IV patients as hopeless and "let's keep them comfortable until the end" instead of "let's do all we can to blast this out of you!"
To give you hope of what is possible, listen to this... after just three rounds of chemo, I had a CT scan and a PET scan, which showed I went from 12 liver tumors down to just 3. If just three rounds of chemo could make 9 of my liver tumors disappear, I know it could do wonders on your one!

Actually, with just one, a liver resection (surgery) is probably your best bet, with follow up chemo (I know a major bummer, but it really is important to follow up w/ chemo after surgery to "mop up" anything that might be floating around in you). As I said, surgery before chemo would probably be the best option, although you will need to be evaluated for surgery to check on the tumor's location, size, etc. They can sometimes do stereotactical radiation, RFA, or cyberknife to blast it without the major surgery. Also if you want to go the surgery route to "get it out of there as soon as possible", and if one surgeon by chance tells you you can't have surgery for some reason, definitely go to another major cancer center for a second opinion. What one doctor says can't be done, often another more specialized doctor/surgeon will be able to do it! When I was down to "just" three liver tumors, I consulted with a reknowned liver surgeon and also with a radiologist about cyberknife (which is similar to stereotactical radiation but probably more precise- google both of them). I went with the surgery after I was convinced by something the surgeon said. He said that when you have the surgery, they can get in there and physically examine the liver with a handheld ultrasound device. They can check carefully to see if there's anything else they missed, etc. Well, I'm glad I went with the surgery- he actually found three additional tumors that had never shown up on the CT or PET for whatever reason (so I guess that means I actually had 15 liver tumors to start with). I thought I was getting three tumors removed, but it ended up being six- most in my left lobe so the left lobe was entirely removed and then I had a wedge resection on my right lobe, where they took a "chunk" (wedge resection) out since that tumor was close to the liver surface. You might be able to have the laparoscopic liver surgery (depending upon the tumor's location, proxity to a major blood vessel, etc.) which is faster recovery time
Prior to getting the surgery, I was at the point where none of those liver tumors were lighting up on the PET scan anymore, and so my oncologist told me I really didn't need to do anything at that time because he believed they were "dead tissue" since they didn't light up on the PET. Well, guess what? Even though they were PET negative, the post surgical biopsies on all six tumors tested positive for cancer. So they were not "dead", but just dormant at that time, I guess. The surgery got them out of there.

The area where my oncologist then failed (in addition to telling me I didn't need to do anything to the "dead tissue" in my liver) was that he didn't give me post liver surgery chemo (called adjuvant chemo), so I suffered a recurrence four months later and then had to do 7 months more of chemo. Tomorrow (actually today since it's now after 2 a.m.) marks one year since my liver resection. I had mine done at Thornton Hospital at UCSD (San Diego) by Dr. Andy Lowy. He is awesome & I'd definitely recommend him to anyone. If there's a major cancer center nearer to you, though, I'd go there if I were you. My insurance, for some reason, allowed me to go to a major cancer center for my surgery, but not to the oncologist. So I did not get the "team" approach. That definitely frustrated my surgeon, as he complained to me a couple of times prior to my surgery that he'd call and leave msgs. for my onc, but he wouldn't return the calls. I felt like I had to be the liason for the two of them. My onc is much better about communication and knowledge lately, fortunately.

Yes, having cancer (especially stage IV) really sucks, is awful, not fair, etc,. etc! But I guess we were never promised in life that all would be roses- but some rose buses have less thorns than others, don't they?! I've got three kids myself (ages 9, 13, 16), so I know what it's like to have that fear of what to say to them when you don't know the future. My husband and I have been fairly open with our kids about it all. We try to not give them too much detailed information, but they do overhear our conversations and so we try to be honest and real about it, while trying to remain as positive as possible, especially for their sake. They've seen both of us cry and react after getting bad news, but they've also seen us rejoice and praise God for some of the good news I've received. It may seem quite bleak to you right now, but I believe that can definitely turn around and get beyond the horrible shock and sick and perfectly normal sick and/or angry response.

As someone also already said, don't believe what you read on the internet about survival statistics on stage IV colorectal cancer patients. They're depressing, and most importantly to know, they're definitely outdated. Statistics, by the very nature of being a statistic, are always going to be outdated because the people in the study had to have been diagnosed and treated at least five years ago. Five years ago we didn't have some of the better chemos and biological agents that we have to use today (like Avastin).

At this point, I look at my cancer as a chronic illness that I need to keep getting treated for. I can deal with that, as I know a lot of people in life deal with a lot of lousy things- kidney dialysis, being physically handicapped, M.S, and on and on. When put in that perspective, it makes me realize that, yes, I can do this. And you can too!!!!
**I know of many stage IV'ers on this board who are NOT currently undergoing any treatment- some even that thought they'd have to be in treatment at least on and off their whole lives, but their scans showed all was clear (NED- no evidence of disease), and so they're off living life!! There will always be the followup bloodwork and scans, but many people today with stage IV colorectal cancer are in a very good place! I've heard of people on this board who are 5, 9, and even 12 years out of treatment after being diagnosed and treated for stage IV cancer. I, myself, am currently in the nonactive cancerous state. We call it NEAD (no evidence of active disease). I still have numerous nodules in my lungs, but my PET scan at the beg. of April showed nothing "lighting up" with cancerous activity. Since I had the recurrence in my lungs in August, four months after liver surgery (and four months of not being on any kind of treatment) I'm now on a "maintenance dose" to hopefully keep it that way!! I'm still hoping and praying, though, to become NED with nothing left in me!

You can get through this with the help of your husband and family and friends around you. Take on the attidue that you're going to put all your anger and frustration and fear from this into energy to fight it! Also, if you believe in and have faith in God, I'd like to let you know of the amazing things that have happened to me, which have strengthened my faith, instead of weakening it). If you care to discuss anything about that and faith, let me know and I'd be happy to chat with you more via the private message system. I'd like to be a support to you in that way, if you so choose. I won't be offended in any way if you don't respond (you're aware, I'm sure of all the controversy we've had with that recently & I don't want to offend anyone or start all that again), but just know that I am here for you and I care & I will gladly pray for you, if you would like me to. I know what a scary and uncertain time you're going through. Chin up- you can do this!! Kick the cancer's @ss!

Take care and hugs to you, (sorry for making this such a long post, but I wanted to try to
Lisa let you know as much as possible and to encourage you) :)

polarprincess
Posts: 210
Joined: Aug 2008

you were asking if anyone was 10 years NED from stage 4. there is a guy over at the colonclub.com named todd colitti who is nearing 10 years (9.5) who had multiple liver tumors.. he is also on of the colondars so you can read his story in that section or just do a search of his name

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

Whenever you are down and feeling bad you can always come in here and find someone doing the Happy NED Nekkid dance....If your down thats always uplifting to hear that...Most of us do leave the windows down though....there are some that don't...and some that just dance that way because they can...so be careful in here, we could make you smile......we are diverse, that has been proven..but there is more information in this forum than Google has.....so kick a trashcan across the yard, then come in here to the best place on the planet...Most of the time you can get a show in here with your dinner..... :)

mom_2_3
Posts: 965
Joined: Nov 2008

Jennie,

You can click on my username for my personal story dealing with a Stage IV diagnosis. Basically I was diagnosed on 10/10/08 (my birthday) and I became NED on 2/20/09 (my surgery date). Right now I am doing adjuvant chemo for the next 5 moonths. My next CT scan is mid-June and I pray to be NED again.

The others that have posted have given you really great advice. Lisa's post is fantastic. I would add just a couple of things for you to think about...

1. If you can get to a national cancer institute, do it. I go to Memorial Sloan Kettering in NYC and your team works together on your treatment plan. Communication between my surgeons, oncologists and nurses is seamless.

2. Doing chemo prior to any liver surgery is recommended so that the doctor can assess whether the particular chemo regimen is effective with your liver tumor. If they remove it immediately and you then go on chemo there is no way to know if the chemo is working killing all the little microscopic cells. In my case I had 4 treatments of chemo resulting in 40% shrinkage and 5 treatments resulted in 80% shrinkage and 90% necrosis. But, even if the tumor disappears or shrinks with chemo push for surgery to remove what remains as studies have shown that there is an over 60% chance that there are still active cancer cells.

3. Do not listen to any opinion about your liver tumor operability from anyone other than a liver surgeon. If your oncologist tells you that you are not operable, ignore him/her. Try and go to a hepatabiliary surgeon or one who does liver surgeries only. I would not let a general surgical oncologist operate on my liver. In my case I had 2 sets of surgeons, one for the colon and one for the liver. The first consultation I had with a general surgeon he was telling me he could "do it all." Knowing what I know now I breathe a sign of relief that I did not entrust my surgery to him. He was fine for implanting my power port (for chemo) but not for my major surgery.

4. There are plenty of Stage IV long-term survivors. Some doctors will say that after 5 years of no recurrence a person is cured. My doctors feel that the timeframe is 10 years of no recurrence. My surgeon told me that at MSK they have a 60% DFS (disease-free survival) for Stage IV with operable liver mets. He also said that the cure rate for it is over 40%. These are still challenging odds, however, the statistics are getting better year after year with the introduction of new technologies, biologics and other treatments. If you search this board for "stories" you will see a recent post about some survivor stories. I personally keep a journal where I have written about 100 names down of individuals that are going strong after a Stage IV diagnosis. In fact, read the story at this link (http://www.mycrcconnections.com/profile/Heidi). Heidi has also posted here on CSN, however, I don't know how often she visits the site. As others have mentioned, many that are 10 years out of treatment aren't spending lots of time on cancer forums. I find myself even spending less and less time on the forums than I used to. There are weeds to pull, flowers to plant, t-ball games to attend, hot summer days to watch my kids in the sprinkler. I try not to lose sight of the fact that while support forums are great I can't stop living my life.

5. Once a Stage IV, always a Stage IV unfortunately. I sometimes like to think of myself as a Stage III but it doesn't work that way... :)

6. My doctor told me that the only things I could do to help avoid recurrence is exercise and watch my weight. I am normal weight so I do my best to exercise every day. I have a checklist of things to do each day and it is my responsibility to do them and I try not to get distracted by other activities until I complete them. I am currently on disability so I consider it my "job" to put my health first. My checklist includes the following: 1 hour cardio exercise, 15-30 minutes of sun exposure, 2x daily vegetable/fruit juicing, 10 minutes meditation/praying. Each day I review the list and ensure I am hitting my goals for these activities as I feel they have a positive impact on my cancer. Finally, google "sugar and cancer" and consider removing items from your diet that are high in sugar or high fructose corn syrup. I have found some research that links insulin levels to cancer so avoiding sugar and exercising every day can have positive impact on maintaining a healthly insulin level.

7. Don't hesitate to come here for support, to ask questions, to vent. Your husband will not really understand your feelings (unless he is also a cancer survivor) like we will. Everyone here on the board will lend an ear or shoulder. Take advantage of that kinship. Studies have shown that breast cancer patients that participate in support groups do better than those that don't. We are here for you.

All the best,
Amy

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I got my husband involved in this club (JR). He was DX last October. Very much the same feelings you have. It is so hard to wrap your head around finding out you have cancer. Are family was in shock. Take the advice from these people in the network. They are living and you will too.
My heart goes out to all of you. I thank you all for being here for each other.Paula G.

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

Paula,

We aren't just here "for each other", we're here for YOU and JOHN, too. I'm so glad you're here and have found us helpful.

Hugs,

Kimby

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Thanks for your responce, Kimby. It was appreciated. Paula G.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Jennie, I know how you feel.....and you have received many
good words here but since I have recently gone thru this,
thought I would add my story. Was diagnosed in 2004 with
Stage 2 colon in section close to appendix, had resection,
no chemo recommended......thought it was all over.....then
in 2008, a met was found in my liver which was very large,
....what??.....I got 4 Folfox treatments....which apparently
liquified the tumor and made it appear even larger on a
scan....first report from oncologist was that tumor had
gotten larger when actually it had not shrunk but melted....
the surgeon and all of us were hoping not to take so much
of the liver but when it was all said and done, my right
lobe was removed, 50% of liver.....I made it through surgery
and 8 more Folfox rounds and here I am at this moment NED
and feeling great......it was truly the most terrifying time
of my life especially since I was found in such an early stage
and expected no more events....since then I have learned that
this is a journey which will have some bumps in the road.. there has been so
much improvement in treatment....and I expect to be around for
a long time to come and the longer I am around, the more
improvements in treatment there will be.....so hang in there,
YOU CAN DO THIS!

Huggs,
Barbara

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I went in for my 4 week after-surgery pet scan and although a couple places lit up on the pet, one on the liver and one on a lymp node, they are both very small and the oncologist thinks they may be afer affects of the liver resection. I am starting my next six treatments of chemo and then wil have a pet scan done end of August.

For now still healing from the liver resection and watching my hair fall away....:-(

But, all is good and remaining positive that the lit up spots will just go away!!!

Hang in there, and this is really a great group. I don't post much, but I read a lot, very imformative info and all about what we are going through.....live life to the fullest.

Diagnosed 11/2008, colorectal sugery 11/08, liver resection 4/2009.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Ron,

I mentioned Foxy as one of my inspirations on another thread just a few weeks ago and lo and behold she responded and reminded me how bad my chemo brain was. She is now 16 years NED (stage IV). Amazing and a great story for us all. Stacy who is another of my stage IV inspirations is out of town this weekend but she is nearing 8 years.

Jennie, there are many people that come here while in treatments but once they hear NED and get back to their lives, the don't visit as often, if at all. There was a thread a few weeks ago "calling all semi-colons" that some people responded to that have not posted on here in at least a year, some several years.........

One of my CSN sisters says it's like we "graduate" after a few years of being NED. The treatments change over time too so being able to help changes too.

Hopefully after our US holiday weekend, you'll hear from many more.

Keep us posted and you are right, fight, cancer cells hate that!!!

Lisa P.

PS. I also wanted to mention that this site was not around 10 years ago and the internet was nothing like it is now. That also has a great deal to do with not seeing many "longer survivors".

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Jennie,
I just wanted to add one more story to your list. I was diagnosed Stage III over 7 years ago now. I did one round of chemo after my initial colon resection and at the very first checkup following 6 months of chemo I found out there was a tumor (one) on my liver. I was devastated just like you so I know how discouraging it is..I then went to MD Anderson for my surgery followed by more chemo.
Honestly I would suggest you get that thing removed. Hopefully that is what your doctors at CCA will recommend.
Anyway, I also later had surgery to remove 2 nodules in my right lung. That was over 4 1/2 years ago. Lisa P. and I are both approaching the 5 year mark of NED. Please don't despair! Change "What if I die?" into "What if I LIVE" and believe it! You have a very good prognosis still even though it is "Stage IV". Can you be cured? You bet!
Best Wishes,
Susan H.

serrana
Posts: 163
Joined: Apr 2009

I have just read all the posts and agree totally with everyone.
Was dx stage 4 8/08 after a met was found by PET in my lung 6 months after my rectal surgery( no tumor found after pre surgical rad/chemo) and 4 months of folfox to mop up. I felt the same way you do at first when they announced the met. .... you are "normal" in your panic

However, panic not, dear survivor. Take these posts and read them daily as I think they are all too true. My oncologist ( a famous gi onc at an NCI cancer center) fueled my despair by changing his demeanor immediately and putting on an Eeyore face mumbling about "advanced disease" yadayada moan and groan. That approach does NOT HELP. We MUST be with doctors who are supportive, positive and caring and not burying us. ( I changed docs)

In addition to going to an NCI cancer hospital( do not go anywhere else oh please) for treatment and having a supportive positive caring doctor many things are in your control to help your body......... exercise daily, avoid of negative emotions, avoid ALL processed food and ALL sugar and sugar substitutes except stevia for example.Consider acupuncture. Essentials are prayer and good supportive friends/family . If friends/family aren't positive cheerleaders, broom them, as they will drag you down and contribute nothing to your wellness. Read everything that Bernie Siegal, MD has written and believe that you will survive. Be at peace knowing your body will do everything to stay well.
Serrana

amcp
Posts: 251
Joined: Jan 2009

Jennie..I am amcp that Buzzard wrote about. In 8/06 my husband had a colonoscopy and was told at that time he had cancer and it had been there a long time. We were later told he was stage 4 colorectal cancer with mets to the liver. In 9/06 he had a coloscopy done and was given a permanent bag. The oncologist that came to the hospital told my husband and I that if he did not have chemo he would live 6 months maybe...if he had chemo treatments he could possibily live 2 years. So chemo after chemo for over two years, mets growing on liver, CEA going higher and told all along this was pallative care. In 12/08 our oncologist said there was nothing more he could do for my husband ...nothing was working and there was now a nodule in his right lung. Our medical oncologist said he wanted us to go to Vanderbilt in Nashville to see if my husband qualified for a clinical trial. Our appt was on 12/29/08, our oldest son drove us the 3 plus hours to Nashville TN to meet with the Medical Oncologist Dr. Laura Williams Goff. After receiving all his records and copies of all his PET scans, CT scans, and radiology reports she said that he qualified for Phase 1 which is strickly experimental. Medication which has never been tested on humans...only on human cells etc in the lab. We drove home to wait for her to contact us for a clinical trial. Not excited but better than nothing. A week or so later, she called stating that after taking my husbands records before the board that meets on every patient, she felt that he was NOT a candidate for clinical trial but WAS a candidate for liver surgery. Sent to see a Liver Surgical Oncologist named Dr Alexander Parikh. He said YES my husband was a candidate for liver surgery resection but since he had a nodule in his right lung that had to be taken care of first. We were then sent to DR Eric Lambright a Thoraci Surgical Oncologist. He ordered more test and another CT scan. The nodule lite up which more than likely meant cancer. My husband was a smoker and had smoked for 45 years...my husband is 62. Dr Lambright said he could remove the cancer but that my husband had to quit smoking and after two weeks they could do surgery. My husband quit smoking that night cold turkey and has not smoked any since then. So on Feb 10 my husband went into Vanderbilt for a right lung resection..the plan was to take the upper lobe of the right lung and look through the lung to make sure there was no more nodule or anything that looked like cancer. My husband only had to have a 4% wedge taken out of his right lung with no other cancer found. After recovering for 6 weeks, we then went back to meet with Dr Parikh about the liver resection. Surgery was scheduled for April 29. They were very worried ..cancer had grown and multiplied..CEA was over 16,000. and my husband was not in great shape after two plus years of chemo and lung surgery. We (the family and him) were not sure that he would even make it through the surgery. After 7 hours plus of surgery, 7 units of blood, 4 units of plasma, removing the gallbladder, repairing his stoma, removing the cancer that had grown and attached to his diaphram, removing 75 % of the right lobe of the liver and several cancers on the left lobe of the liver, he made it through and was put in intensive care. Doctor came out and told us he now had a 1 in 3 chance of never having any more cancer EVER, 1 in 3 chance of if cancer returns it would be treatable and or operatable, and 1 in 3 chance of it taking his life. 2 out of three is not bad when you came with No Hope for over two plus years. He was in the hospital just 6 days and then released. It now has been 3 weeks since his liver resection...he is my miracle man. He has good days and bad but he is doing great. We are on cloud 9...from no hope to having no cancer is amazing. We believe definately in second opinions and in going where they specialize. Even though it is a 3 plus hour drive each way..we will continue to follow up there from now on. The care we received was unbeatable. Also the cancer society has what they call HOPE LODGE where you can stay free of charge when coming in for appt and treatment, you only have to have a referral from your oncologist. Please do not give up...go to a major hospital that specializes in cancer. I do not know where you live but there are great hospitals all over just read recommendations from others on this site. You can PM me or my personal email is frankannap@netzero.com if you have any questions. DO NOT give up ...stage 4 is NOT a death sentence. There is HOPE!!!!!!! we have a web site that you can go to and read our day to day journal of Frank's fight against the monster "cancer" www.caringbridge.org/visit/frankproctor
you can read the journal or guestbook and even leave messages.
Hugs,
Anna

eric38's picture
eric38
Posts: 588
Joined: May 2009

Amcp - you posted on my discussion board and I came here to see your husbands story. I was recently diagnosed stage 4 with 3 - 4 mets to liver. It just goes to show you that no matter what situation you are in somebody else has it worse and there are always those who have overcome. Your husbands story is very inspirational. He is a walking miracle. Most people in his situation would have given up and now look at him. He is still alive and kicking with a 1 in 3 chance of cure and a 2 in 3 chance of having manageable disease. That is a far cry from where you began. There was seemingly no hope. Now you with the help of God have created hope.

pmppals
Posts: 4
Joined: Jun 2002

Dear Jennie, I was diagnosed at Stage IV with Appendix Cancer...eleven years ago!

Technically, I am still at "Stage IV" and will likely never be disease free. However, there are many, many of us who are LIVING WITH cancer as a chronic illness, just as people are LIVING WITH diabetes, HIV and other diseases that used to have such poor prognoses.

Although we would all like to be CURED there IS HOPE for us and LIVING WITH a disease and LIVING WELL with it, are the next best things to a CURE!

We, the members of the PMP Pals' Network, invite you to visit our website at www.pmppals.org where you will see the smiling faces of other Appendix Cancer patients and were you can find many resources for the treatment of this diagnosis and helpful tips for recuperating from treatment (surgery and chemo!)

With best wishes for your good health,
The PMP Pals' Network at www.pmppals.org

krystle singer's picture
krystle singer
Posts: 109
Joined: Feb 2009

Jennie,
I am so sorry you had to go through this. No, I don't know how you feel, but I may as I am still waiting for a CT kidney scan in August. Truly, the confusion is rampant. The other folks on the list are right, tho. Stage 4 is not a death sentence. As for the second opinion, personally, I think it can't hurt...although time will pass and time is not a person with concer's friend when it comes to healing or treatment. My biopsy was sent to Mayo's and it was a miserable two weeks while I waited to find out the results. I was lucky, the growth was only PRE=cancerous.

I echo some of the others, breathe deeply and slow your heart rate. Above all, don't give up. Certainly I'll be praying for you...it does help. Without all my friends and a lot of people I'll never know, I wouldn't have made it this far.

You're in my heart!
Krystle singer

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi, Jennie

Wow, I've been out getting our cars maintenanced and have been out all day, just getting and ready your post.

By now, everyone has chipped in and helped you and am so glad you feel a little bit better...I know you've been scared and we' talked a few times and I've been concerned and try to help you with what I know.

I'm considered a Stage IV as well. Colorectal cancer, met to the Liver and possible to the pleura of my lungs...we spoke of this the other day.

But I'm working full time and was working even during all of my chemo treatments and I've still got my chores to do and bills to pay, so life will go on, it's just an unsure time right now. But hey, this board flooded you with help and there is alot of experience out here...I wish I had known half of this when I first started.

Click on my Avatar and you can see how my life and surgical and chemo treatments were. Mine is a similar story to others now, except I've got a lung issue that I have not read too many people dealing with so I differ a little bit there...of course I'm concerned about it and am waiting on my 2nd opinion to see which way I go.

I just wanted to post and say I'm sorry you were hurting so bad today, so glad everyone reached out and helped you, and just wanted to tell you that.

If I can be of any continued help, you already know how to get hold of me.

Have as good an evening as you can....alot of us are Stage IV and still kicking....I just started my SIXTH year of this stuff, so really I do understand and I think as things go by, you will be better equipped to handle this situation...and the great news is that we're still all here.

-Craig

donnare
Posts: 266
Joined: Jun 2009

Hi Jennie,

I am so sorry you and your family are going through this. My husband was dx Stage IV colon cancer with over 11 mets to liver about a month ago. It was devastating and I found it very difficult to sleep, eat, work, stop crying - do anything but be terrified. I came here and found compassion and much needed hope. I'm still scared and it certainly sucks, but I have so much more hope than I did just one month ago, and I am determined to not have my family be defined by this dx, to not let it steal any more of our joy, and to definitely not live in fear.

As you've already seen from all the posts, there are wonderful people here who are LIVING with Stage IV cancer. It is not a death sentence. Ask for a prescription to help with the anxiety - Ativan helped my husband and Xanax has helped me. Get as many opinions as you need to feel comfortable that you are getting the best treatment possible. And try to stay in the present moment and not get ahead of yourself too much - take it one day at a time - meditation may help. Check out books/CDs by Jon Kabat-Zinn on meditation and mindfulness - my husband is reading "Full Catastrophe Living" and used some of the techniques to help himself relax after his initial dx.

You and your family are in our prayers.
Wishing you peace Jennie.

Donna

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