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Got bad news today.

pscott1
Posts: 207
Joined: Jan 2011

I had MRI on Thursday. When I was diagnosed with colon cancer on 1/8, they did a CT scan and said that I had an undefined mass on the left lobe of my liver and a spot on my right lobe. When the surgeon removed my tumor on 1/14 he said he got a good look at the liver and the mass on the left lobe appeared to be something similar to veracois veins; an entangled mass of veins and nothing more. The Oncologist called me yesterday and said that the MRI report stated that I had multiple lesions throughout my liver - 15 but didn't indicate that it was mets. Today she called and said that it was definately mets. She said it was inoperable, that radiation wasn't an option because of the risk of hepatitis and chemo was the only option and it was not curable. I am absolutely blown away. I asked her what happened to the mass of entangled veins and she said it wasn't there. Where did it go?! She wants to get a port in as soon as possible and start chemo right away. My Oncologist is at St. Lukes Hospital in St Louis and I have a friend who's husband is a doctor. When I spoke to her tonight she mentioned that about 10 years ago a girl she went to HS with lived in Cleveland and was diagnosed with colon cancer. They went in to do the surgery and found it in her liver also, closed her back up and told her to get her affairs in order. She went to Siteman's Cancer Center and they told her they would probably put her thru hell but she would make it thru this. She is still okay today. My immediate plan is to contact Sitemans in the morning. I am beside myself. I'm a single mom with 2 young girls (10 and 12) an older daughter (28) and I'm not ready to leave any of them. Any words of hope from anyone?

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

Sorry to hear of your situation. What chemo are they looking to start you on? It's certainly not uncommon for colon cancer to spread to the liver and/or lungs. They do have meds that have been proven to shrink tumors in the liver too. Avastin is one of them which I took to make my liver operable when it initially was not. I would see what they are looking at giving you and I would also look into a second opinion.
-phil

pscott1
Posts: 207
Joined: Jan 2011

Hi Phil...thanks for responding. Initially before the situation with my liver she wanted to do Folfox, every 2 weeks, 12 rounds, 6 mo total. With just the tumor being removed she gave me 85% chance of non-reoccurence. It was actually looking pretty good. Now with this, she didn't even tell me what type or frequency. The killer is I haven't even heard from her since 3:30 yesterday. She was supposed to get in touch with a surgeon who could get a port in me and give me my first treatment. I'm really feeling that I won't be going back to her. It has left a bad taste in my mouth if you know what I mean. Can they do anything with lesions? What is that in comparison to a tumor? She said it was inoperable. I am so not a physician and it's hard to follow what they tell you sometimes. I appreciate your input!

Pam

rwp1958
Posts: 2
Joined: Feb 2011

Sorry to hear your news. I have been fighting the same for 3 years. I would also recommend a second look by someone else. Not so much as to make sure you have this problem but to get a second set of eyes for a treatment. I would recommend you go to MD Anderson or Mayo Clinic before you start any treatment at your home.

It took 3 years for the chemo to kill my liver (my opinion). I would also look at "alternative" treatment. I say that now that I have seen first hand what surgery and chemo have done to me. All the chemo and surgery is going to do is buy you some time.

Also ask about Y90 treatment being down in Chicago.

You can read my story at http://youfightingcancer.blogspot.com/. I pray for you and the hope of some type of successful for you and your family.

pscott1
Posts: 207
Joined: Jan 2011

Thanks for responding. So after the 3 years is it now gone from your liver? Buying more time is fine with me; my goal is to be alive with my girls and see them grow up and become adults. Ultimately maybe I'll live long enough to see a cure. Where is MD Anderson located? This is all so new and overwhelming, it's hard to keep everything straight.

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

I'm sorry you got such daunting news. Praying you can find a doctor who will have a great plan for you.

*hugs*
Gail

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idlehunters
Posts: 1792
Joined: Apr 2009

I live very near the St. Louis area (illinois side) and know the rep of Siteman. I know several success stories from there on cancer and have heard they are a very good facility. I have never gone there as I am having great success where I am. I did go to M.D. Anderson for my 2nd opinion. I was loaded down with mets in liver and lungs..... not no more! I heard your same stories.... stand strong...and keep the faith..... PM me if you want to talk in private. Take care.

Jennie

pscott1
Posts: 207
Joined: Jan 2011

Hey Jennie...thanks so much for responding. I'm in sort of a stupor right now from the news. All I can think about is not wanting to leave my girls! So maybe this isn't a death sentence after all and I just need to find the right treatment for me? It sounds like you recovered so I will keep the faith! How long ago was it that you had treatment for the mets in your liver? Thanks again for the encouraging words!

Pam

pscott1
Posts: 207
Joined: Jan 2011

Thanks Gail...I guess we all know how it feels to have that cancer truck run over you and make you even more distraught than you already were. I have many praying for me and I appreciate the added prayers from you as well!

My best,
Pam

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Nana b
Posts: 3045
Joined: May 2009

Happy that you are getting some wonderful and encouraging words here from our colon friends. Keep up the fight, try not to stress! Stress is a biggie! Rest, eat right, exercise and jump in with both feet!

Stage 4, in remission over 18 months!

pscott1
Posts: 207
Joined: Jan 2011

Thanks for the encouraging words and I'm sure very wise advice. I feel like I'm in zombie mode right now but trying to prepare for the fight. Everyone that has responded to my post has given me so much hope and strength to deal with this now. I will take your advice and get on the healthy path! Thank you again so much for your thoughts!

My best to you in your fight,

Pam

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Lori-S
Posts: 1287
Joined: Sep 2010

I am sorry that you got such daunting news after having your treatment plan together and ready to go. That's what this cancer truck does. It runs over you and then backs up and does it again. It's not unusually to have some daunting twists and turns. Keep the faith as there are others here on the board that have traveled the same road with liver mets. I'm sure you will get some good advice. One of which is always get anotherr opinion. Also, I would say, don't kill the messanger (Doctor) just yet. It sounds like she was just as surprised as you by the outcomes of your tests.

I know how you're feeling about leaving children behind. I have an older son (23) but, he's been disabled since birth and I have been a single mother and his sole caregiver for all those years. It's never easy to think of what will happen if I don't win this battle. There are treatments that have worked for others in your situation. Try to focus on the positives as best you can.

Wishing you all the very best luck and sending you and your girls BIG HUGS.

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

Hi there... as a mom my heart breaks reading your story. I live in South Floriday. I just recently had a spot on my liver removed from recurrent rectal cancer. During the surgery the surgeon did an ultrasound on my liver to make sure there were no hidden spots. I am lucky, I know but I did ask him all the what if it comes back questions. He told me to stop reading the internet because the information is outdated. I said but I read that if it comes back close to an artery that you cannot operate. He looked at me like I had two heads and said even then it can be done. He said that he has seen extremely bad cases where it had spread ALL over the liver and ALL over the lungs at the same time and that those people are still alive today.

His positive attitude alone was worth a million bucks. He was so confident that I believe him. Find another doctor. You should not have to deal with a doctor that makes you uncomfortable or doesn't believe that there is a fighting chance.

Is there a Cancer Center of America near you? I have heard they do amazing things for those told there is no hope. Remember there is always hope and being a mom gives you a bullet proof vest in a sense. You fight for them. You give it your all. God bless you!

AnneCan
Posts: 3692
Joined: Oct 2009

What an uplifting post; thank-you. It sounds like your doctor is wonderful.

pscott1
Posts: 207
Joined: Jan 2011

Vicki...thank you, thank you, thank you for this post. I have been crying almost non stop since my Oncologist called me yesterday. I just got back from rushing around trying to get my records so I could get them to Siteman and get an appt right away. Your doctor sounds wonderful. What you have told me today gives me hope. I have been out on the internet googling every term from my Pathology report since I was diagnosed in January and it can scare you to death I agree; especially when you come across a diagnosis that is exactly like your own. Know that today you have helped one Mom that was writing off years with her babies be given a new hope that I'll be around no matter what. At least for longer than the Oncologist told me was possible. You literally made my day. I wish you the best in your fight; know that I will be right there with you fighting. God bless you too!

Pam

luvmum
Posts: 457
Joined: Dec 2010

Hi Pam,

I know how you feel right now, I have been fighting this with my mum for 4 months (exactly 4 months). My mum's situation and prognosis was really bad back then. The oncologist said to me, there was very very very slim chance for her to have liver resection, and her K-RAS result was mutated...leave her only limited chemo regimens. To make the situation worse, she ended up in hospital after every chemo. Her oncologist keeps saying, maybe we should stop chemo, it's totally not worth all the pain and hardship. With all these limitations, my mum's recent PET scan showed good improvement and even the colon surgeon said, maybe liver resection can be re-considered. But then my mum's oncologist discouraged us again. He said,' you know, even if you have liver resection, there might be cancer cell hidden somewhere in your body, it's not worth the risk to have liver resection'. Worst still, he asked my mum if she still wants to continue chemo as well. I have to say, he is a good oncologist, at least he does not after money and just keep asking his patients to have chemo. However, he is a very conservative oncologist. He seldom tells me what is his plan for my mum, except asking her to stop chemo and live a happy life.
So maybe your oncologist just like him. To cut the story short, with all these disadvantages and limitations, my mum and I are going to see the liver surgeon tomorrow and discuss about the chance for liver resection.
My mum has been very positive all these months and believes she will recover one day. I also keep telling her that she will recover and see me being a mother in the future. I truly believe positive thoughts and prayers help my mum. Keep up your good spirit, tell yourself you are young and healthy and you can recover! My mum is already 70 and will turn 71 in 2 months time!
May God give you peace and hope!
Dora

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

Hi,

I was dx'd 3-1/2 yrs ago as stage IV colorectal with many mets/lesions in my liver and both of my lungs. I think I had 12 visible tumors in my liver when I started out. I did chemo (Folfox plus Avastin) for six months and many of the liver tumors shrunk away & I ended up having a liver resection after all when they told me at first I was not a surgical candidate. So, you see that just because one oncologist or surgeon tells you no surgery, doesn't mean that it still won't be able to happen. I know that is also the case with several other people here on the CSN board too. I've had recurrences since then, but I am still here! I'm doing chemo and some natural things too.
Mine has not spread any further than my liver or lungs, but I do keep fighting it. By the way, I also have kids at home- ages 11, 15, & 17 (they were 7, 11, & 13 at my diagnosis) & so I know how much you want to be around for your kids- me too- it gives us a reason to keep strong and keep fighting!

Keep seeking out options and never give up!

Best wishes and prayers too,
Lisa

pscott1
Posts: 207
Joined: Jan 2011

Lisa...thanks for your post. I really hate to hear that people are going thru this but I also am encouraged to hear that what is happening to me has happened to others and there is some sort of hope wrapped up in it all. I can't imagine how you've made it thru all of what you've been thru but when I get to the part about having young kids like I do, I understand the motivation behind doing all you can to survive. I know none of it will be easy and I'm scared to death of the whole chemo thing but I can't give up now. I just want as many years as I can possibly have to enjoy with my family. You've helped give me the drive to never give up even when I feel like throwing my hands up and just sitting there.

My best to you in your continued fight,

Pam

AnneCan
Posts: 3692
Joined: Oct 2009

I am really sorry you received this news. Getting a second opinion is a good idea, + also try to take things one day/one treatment at a time (often easier said than done, I know).

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I was dx 2 years ago with several mets to the liver by then not operable , after 9 rounds of chemo they shrunk or disappeared most of them and was successfully operated! Hang in there chemo works!

pscott1
Posts: 207
Joined: Jan 2011

Pepe..thanks for the encouraging words. I have to be honest; when first diagnosed I was dead set against ever taking chemo....now I just want to live. I'll do whatever makes me better. I will take your word on it working! My best to you!

pscott1
Posts: 207
Joined: Jan 2011

Thank you Anne; I feel the same way. Even the nurses I spoke to today at the Oncologist office said they would do the same thing if it were them. Once everything settles in my head, I will try to stop getting ahead of myself (have a tendacy to do that alot). I appreciate your post and hope you are well.

Pam

GaryinUK
Posts: 63
Joined: Feb 2011

As posts already say, mental and eating is important, I am a partner of a Stage 4 with mets in Liver and just in the peritoneal cavity, 19months since diagnosis. We are in UK, though partner is American living here.
The treatment options are similar but maybe the Dr's there are more driven.
Think positive, live with it rather than let it determine your everyday, drink green tea, blueberries and make sure you ask questions, if you have not got someone to see the doctor with get someone, you need an 'eyes and ears', I am with my partner for everything, he hates hospitals and goes into a trance almost at every visit, so even when they are taking bloods I am there, I do let him pee on his own though.

My partner had a 'pic' line put in 18months ago, not the most pleasant thing, but it gets the treatment in and bloods out easier, no problems at all with it.

Fight is on, start with a light training schedule and build up to give it a battering, you can do it, you can all do it and we the 'significant others' can be in your corner having ensured the towel is out of sight.

Regards

pscott1
Posts: 207
Joined: Jan 2011

Thanks Gary....I guess the gloves are on; no choice really. Best wishes to your partner in his fight!

Pam

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

Hi PScott! First, I'd like to welcome you here... you will find out shortly that there is no more of an informative group than this one you have stumbled upon. Who knows better what it's like to go through cancer and all the complications, treatments, side affects and success stories than other folk who have, or are going through, the same things you are facing? Doctors are extremely intelligent, having spent their earlier years learning everything they could get their hands on about their chosen field... but many of them fall short on the bedside manner/talking to a patient as a human being where all of this is new to them. Not all doctors, but a big chunk of them have not spent as much time on their bedside manner as they have on their schooling and clinical practice. But that's ok... you WANT doctors whose priority is to take on the challenge and make you better. For bedside manner, support, hand holding and reassurance that it is possible to come out successful... you hang out here. There are some amazing success stories from every day folk who were told to put their affairs in order... and are still here years later defying all the odds and statistics that you will find out on the internet.

For starters, you will hear this over and over again... by the time information is proven, studied, signed off by all the committees and experts that have to sign it off and then make it to the internet on information sites, statistic sites, medical sites, into medical journals, etc... 5-8 years have passed. So when you are reading a new breakthrough finding... it's not really new at all... it's at least 5 years, if not more, older.... it's just new to the public, internet, etc. Also, there are still the snake oil salesman, quacks, "experts" with no expertise, etc. publishing stuff on the internet because the internet is not owned or controlled by anyone.... so any one of us could publish whatever we wanted to. I could do up a very official looking website, with lots of letters after my name and posting a new cure for colon cancer... 10 animal crackers a day, but not just any animal, 5 giraffes, 2 bears and 3 monkeys. There will be those of you who will see right through this and label me a big quack, out to make money on someone else's vulnerability. And there will be those who are leary about the animal cracker cure, but figure it can't hurt, so they will give it a try. And there will be those who fall for it hook, line and sinker, having all their friends collect all the giraffe, bear and monkey animal crackers... and if, along with their other treatments, they find their tumours have shrunk, they will swear it was the animal crackers that did the trick.

Soooo, internet reader beware! You really don't know what is legit out there on the internet and what is done by a very clever quack. You also don't know what is new information and what is 5 or more years old. A good example of this is just this past week we had a topic/discussion about the dangers of caramel colouring in dark sodas (coke, rootbeer, pepsi, etc). It has been on the mainstream News this week, as if this is something they have just found out... but in fact, they have been discussing the harm of caramel food colouring in foods for years. The first I heard/read about it was back in the late 90s... although it could have been known even earlier than that.

Ok... so, where does that leave you? Well, first you can acknowledge that the news you have recently heard is scary... on so many levels. Scary because it's you they are talking about, scary because the unknown is always scary, scary because you have young children that of course you want to be around until they are grown, self-supporting, possibly married and have children of their own. Wrap all of this up in one big basket and is it any wonder you are scared, terrified, numb, shaken up and just when you think you have it under control, you think "What if..." and the tears start flowing again. Well, I have news for you... what you are going through and feeling is TOTALLY NORMAL!! If you weren't scared or terrified or feeling the panic after being told what your oncologist told you, then your mind would only be putting it off and you would feel exactly as you are feeling now... but down the road. And it might have hit you when there was no reason for it, so you'd then think you were losing your mind. So acknowledge that you have had a huge scare and your reaction to it is TOTALLY NORMAL, nothing to be ashamed of and absolutely no reason for you to try to explain your reactions to anyone else.

But now is the time to say... ok, now what? What am I going to do that will be in my best interests? Because, my friend, right now it IS all about you and once you have a plan of action in place, then it will benefit you and your kids. I promise :)

For sure... get a second opinion. It's not that you are going to get two opposite opinions, but if anything... you need the assurance that Onc #1 and Onc #2 both have your best interests at work here. If both say the liver is inoperable... then so be it. Right now, at the end of Feb 2011, it's inoperable... which means you need a different treatment (other than surgery) to either get you to a place where they can operate, or maybe a chemo/drug treatment will shrink everything down so it is now manageable.

Quite often, once a cancer has spread (hence staging it as a Stage IV) the medical term for Stage IV is "incurable" and/or "advanced cancer". Scary words, right?? No one wants to be told they are incurable, or that they have advanced cancer... because the imagination goes crazy and you think of both as a "death sentence". But it's not... those are medical terms and how you treat advanced cancer or incurable cancer is different than if it was a Stage 1, isolated to one spot. It would be a HUGE mistake if, as a Stage IV, your onc treated you as a Stage I.

It sounds like your Onc is going to start you on a pretty standard treatment of chemo to try and shrink or get rid of the mets. A lesion or tumour are really one and the same things. Cancer cells that have gotten together to form a mass/tumour/nodule/spot that shows up on an image. You will be a pro with the terminology in a very short time... so don't worry. Anything that confuses you... just ask :)

Any words of hope? There's LOTS of hope! You have a long road ahead of you with a variety of different kinds of chemo that can be tried. Don't worry about the horror stories you hear or imagine about chemo. Sure, no one would PICK going on chemo for the fun of it... and yes, there are a heap of various side affects that each of the chemos can have. But everyone is individual and no two people seem to react the same way. So although you will be given a list of potential side affects, it does not mean you are guaranteed of getting them. And if you do get some, everyone gets them to different degrees. You will read lots of stories here where people continue working while on chemo. You will also read about how tired chemo can make you. So arm yourself with all the possibilities and have back up plans should you need help. Having the two young girls who are young and need their mom, but are also old enough to know Mom might not be feeling well some days, you will probably want a close girlfriend, relative or someone the girls are comfortable with to be around to help out on some days. This is not to say you are going to be on your sick bed... but hey, we all know when we aren't feeling well, or are just too tired to do anything... it sure would be nice to have the help around :)

Ok...enough babble! I am a babbler from way back. You just make yourself comfy here and know you have landed in the middle of a group of friends who you will get to know us all over time... and we are here to help you decipher any confusing words your doctors may tell you. And take a notebook with you to appts. so you can write down what is said... because I guarantee you will forget most of it by the time you get home :)

Cheryl

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

like

pscott1
Posts: 207
Joined: Jan 2011

Cheryl...you are amazing! You covered probably every area I could think of and haven't even had a chance to think of. I will try to learn the lingo along with mastering the patience when it comes to dealing with these doctors. My end goal is to get better and I'm in this for the long haul. I appreciate you taking the time to type all that information out to me. This board has been so helpful to me since I found out about it thru a co-worker who is a breast cancer survivor. Thanks for enlightening me about the internet because there are moments I obsess over cases that "sound like me". Thank you for being there now and in the future because I'm sure I'll have days where I feel lost again. My best to you Cheryl.

Pam

schnauzerheads's picture
schnauzerheads
Posts: 53
Joined: Jan 2011

WOW! If you decide to write a book, I'm buying it! Pam, you'll beat this.... I was diagnosed Stage III (December 2010), they said to expect 85% thumbs up after resection and chemo. A couple weeks later, after the PET scan they said they found some in the liver, so Plan B. I've just finished week 3 of treatment, and the majority of these posts are right along the lines of what my oncologist has recommended. Pay attention to these people. All my research, consults, etc etc, and facing alot of the same emotions you're going through has led me to believe that this can (WILL) be beat. Ask questions, don't stop believin' (one of my all time favorite Journey songs). Positive attitude is such a big part of this, PLEASE keep your chin up and kick this thing. Your kids and the rest of us are counting on you. :-)

Kevin

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

Get a second opinion! Sooner better then later.

We interviewed 6 Oncologists before we made a choice. Even the second time, We interviewed 3 additional Oncologists. Some were so old school and not into the current information that I would not be around had we chose one of them. One told us surgery and Chemo was not even necessary!

Find out the Exact Cancer that they have. Read what is the standard treatment. Anything before 2007, weigh in less. Things have changed that much!

Ask about the options, surgery, Chemo before and after surgery, Radiation, etc....

Our thoughts and prayers are with you!
Besy Always, mike

pscott1
Posts: 207
Joined: Jan 2011

Mike...I'm scared to go thru that many but I will look into the Siteman Cancer Center. I've been told that the doctors there are on the cutting edge of everything so I guess I'll "go with the best". I'm only at the end of line ready to get on this ride (and I don't like rides at all, especially roller coasters)I just hope I make it thru to the end. Thanks for the advice.

My best,

Pam

taraHK
Posts: 1961
Joined: Aug 2003

My sons were 10 and 12 when I was diagnosed -- over 8 years ago. They are now 18 and 20 - yea!! Got to see them both graduate from high school, and so much more. I have had 4 recurrences since my original diagnosis/treatment. Three treated with surgery + chemo. Latest not operable (bone mets) and being treated by chemo alone. It's discouraging to have recurrences -- and I will almost certainly never be "cured". But it's VERY encouraging to still be alive! And, I've been very fortunate in my ability to tolerate chemo. I've been able to continue what I consider to be a good quality of life. (Planning a trip to Puerto Rico currently -- yes, while on chemo! -- got squeeze stuff in between treatment!). Will I have to cancel? Maybe -- but fun to plan!

You've received lots of great advice here already. Good luck to you as you make decisions and carry on the fight

love,
Tara

pscott1
Posts: 207
Joined: Jan 2011

That definately gives me hope Tara. I'm with you; ultimately of course I'd love to be cured...I'd love for all of us to be cured but if the best I can get right now is to still live my life and tolerate the chemo and all the while be there with my family then I'll take it. It helps to hear the encouraging side of things...a little scary to hear the things like "recurrence" but I just need to adjust to all of this and move ahead. The unknown right now is what is bothering me the most; getting the port in, finding out how I will tolerate whatever chemo they decide to give me. I also have a trip planned to Maui on March 31st; I was given an award at work and this is the actual ceremony, all expenses paid. I just pray I won't have any horrible reactions to the chemo while I'm there. Won't get a chance like this again!

My thanks to you and everyone who have given me their input on my post; it just helps me settle in to what has become in my mind the second half of my life, "Pam Part II".

Thanks again Tara!

Love,

Pam

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Pam, Hi... so sorry to read about what has happened but as others have said do not give up hope, get a second or even third opinion and believe. My story.. was in exact same place as you in Nov. 2009. Short time to live, end stage IV colon w/mets to liver, my liver about 70% tumors, inoperable.

Colon - only 1 tumor, not large, had not spread any place else, even to lymph nodes or had not gone thru colon wall, no surgery, started Folfox with Avastin, early Dec. 2009.

Some side affects, neuropathy, fatigue was horrible towards the end, loss of appetite. Tolerable all of it.

Finished folfox May 2010.. went on Avastin only, once every 3 weeks.. tumors shrinking and disappearing. Talked with oncologist about going to see a surgeon, he felt best place for me was Mayo Clinic in J'Ville (I live in Orlando)... went a month ago, surgeon hopeful but would not commit to surgery until MRI, CAT scan, Pet Scan, etc.. saw him 2 wks ago, he is doing the surgery. WITH one exception. I have 1 tumor left in left lobe, that is the one he will resect first. In about 2 mos, if all goes well, he will resect the right lobe where there are 4 smaller tumors left. ALL the other tumors are gone/dead!!

I had a colonscopy Thurs. and GREAT news the tumor there is gone. I was at Mayo all day yesterday for pre-op and my surgery will be Mon. 3/7. AND the good news is it appears he will do it with cameras, not an open surgery.. I am still smiling.

When all is said and done, Mayo says emphatically I will be cured. However they remind me that in 50-60% of these, the cancer reoccurs. I hope it does not, but at least I hopefully have bought more time with my 4 kids, 5 grandchildren, that is what matters most to me, too. And by the time it does reoccur IF it does, I hope there will be even more treatments.

PLEASE PLEASE do not give up hope. And try to think that you are going to fight this, survive it and be here with your children. I know it's the hardest thing to think right now. You have come to the best and only place for the best experience, best support and "family" there is. I could not have done what I have if it weren't for the people here. I don't post a whole lot, but I read almost all the posts all the time and they are what have inspired me.

Please let me know if you ever want me to call you, I would be happy to. Except the week of March 7, lol. With hugs and love, Joyce

pscott1
Posts: 207
Joined: Jan 2011

Joyce...thank you. The more I read the better I feel. I felt like Chemo was the enemy at the beginning of all this but the more I hear stories like yours, it does give me hope. I'm going to Siteman Cancer Center in St. Louis and hopefully they are an equal scale of Mayo. So unlike what my Oncologist said, the tumor can be resectioned. Maybe she's just saying at this point it is inoperable. Hopefully once I start my treatments I will have the same success. "Cured" ... what a beautiful word. My goal. I wish you the best on the 7th and will be thinking of you and praying for you! You're right about this being almost like an extended family...there are not just days I don't think I could make it thru without talking to all of you but sometimes minutes.

Take care of yourself and I will have nothing but positive vibes coming your way!

My best,
Pam

JoyceSteele's picture
JoyceSteele
Posts: 146
Joined: Nov 2010

Pam thank you for writing back. One day a few months ago when I was still "inoperable", for some reason I sat at my desk and started bawling, thinking of all the things I was going to miss..grandkids' Little League games, going for outings with them to the bookstore, just hugging them and laughing. Usually I'm pretty positive but could NOT shake it that day. So I came here to the board and asked for hugs.. I got many of them and within a few hours was smiling. I will never forget that day.

The very first day I had chemo, my wonderful nurse was explaining everything to me. At the end she said the most important thing for you is to say "I Believe". My kids got me a coffee mug that says I Believe, and my "ex" husband got me a gorgeous placque that says it too. I am happy you sre going to St. Louis. Please keep us posted and you are in my prayers. Believe!!! You are going to make it. Hugs and love, Joyce

Erinb
Posts: 295
Joined: Apr 2010

See if you can find SCOUTY and read her personal story. It is very encouraging. My husband was able to have a resection but they weren't able to get it all. The good news-the pathology reports showed all of the small tumors that they could remove showed complete nuecrosis (dead cancer tissue). He is still in treatment, but doing well.

You may have an excellent response to chemo. Try to stay positive.
Erin

pscott1
Posts: 207
Joined: Jan 2011

Thanks Erin for responding...(beautiful baby by the way). I looked thru 40 search pages to find Scouty and gave up; I'll search again this morning. That's hopeful what you told me about your husband. I'm not giving up, I'm just still trying to get to that point where I don't cry every time I think about this. I'm going to fight just like everyone else. I can't let this beat me. I've been thru alot of things in my life and I don't want this to be the last battle I ever fight. My best to you and your husband...

Pam

AnneCan
Posts: 3692
Joined: Oct 2009

To find scouty, just go to the top right hand corner of the page, where it says "Search CSN members", type in "scouty" + you should see her page. Good luck!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Here is a link to Scouty's page
http://csn.cancer.org/user/37425

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