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Colon Cancer... Now spots on the Liver!! ---Results!!---

dsmegnky
Posts: 33
Joined: Apr 2007

My whole family went to the Dr. office today hoping for good results, but we were let down real quick. The 3 spots on my dad's liver have gotten bigger. My dad was so shocked, he said "I thought I had this thing beat for sure". It is so hard to see him this way. The spots were 3mm last time (2 months ago) and we asked how big are they now and the Dr. said that really isn't important and would not say. We said didn't they measure them and he said NO and we said that we find that hard to believe since they measured the other ones and they were only 3mm in size. We all thought that they must have gotten a lot bigger than he expected and didn't want to tell us to disappoint us. Has anyone ever have this happen to them? Now, my Dad has to go and get a biopsy done to see if it is cancer or not. His CEA was 5 in March and now it is 8, can anyone tell me what a high number means? How high does this number usually go? I know that it does indicate cancer, as it has been going up. I am so not ready for any of this and neither is he. He is so sad inside and I can see it and it is killing me. I don't know what to say or do!! I have two children ages 4 and 6 and they just adore him and talk about him all the time. If this is cancer as we think it is, how fast does it grow? Is it slow growing? Will he still have a long time left with us? Sorry for all the questions, I am just to sad inside. My stomach is so upset, I had such a hard time even eating tonight and then after words, I thought I was going to throw up. I can't even imagine what he is feeling right now.
Please help us!!!!!
Thanks,
Dana

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Ahoy, Dana -

So sorry to hear about your dad's new diagnosis. Let me start by saying that his attitude is CRUCIAL. He has to go after this with everything he has. Next, let me say that if your dad isn't happy with the way his oncologist is managing his care, he should consider a second opinion and be open to changing doctors. Remember this: His oncologist WORKS FOR HIM. He may be the doctor, but he's really a (well paid) advisor. If he isn't coming up with the answers you want or isn't providing the care you expect, LOOK ELSEWHERE! I am somewhat surprised that he didn't have an answer for you about the change in tumor size.

One quick question, you characterized your dad's liver mets as being "on" his liver (as opposed to saying they are "in" his liver) - is a liver resection not possible for some reason? If your current onc has told you it isn't, have you sought a second opinion?

I am somewhat surprised that they haven't done a PET scan to see if the spots on your dad's liver are cancer or not. There are lots of treatment options available - never give up hope. Most of all, totally ditch the idea of "How long does he have left" - that's your worst enemy right now. Focus on (1) finding a good doctor and (2) determining what the best treatment options are and (3) helping your dad fight this thing as hard and as long as he has to to kick it's butt.

Keeping you and your family in my prayers.

- SpongeBob

dsmegnky
Posts: 33
Joined: Apr 2007

Hi,
Yes, I agree! He has always had a positive attitude about this entire process. My dad's doctor is getting ready to move out of state on the 18th of May, so I think it is good so that another Dr. will be looking at it too. But, the Dr. wants to have all of the tests done and treatment pretty much set up before he leaves.

I am not sure if they are on the liver or in the liver, to tell you the truth I didn't even know there was a difference. Sorry about that!! The Dr. did say that the spots were not close together so a surgeon would have to make that decision when the time came. But, he was hesitant when he said that.

They have never mentioned a PET scan, I don't even know what that is. They are going to put a needle in his side to take a biopsy sometime this week.

I am sorry if it came out wrong when I asked "Will he still have a long time with us?" I am just so scared and I don't want him to leave this world yet. I have read so many things on the internet from a few weeks to months. I so didn't mean it that way at all!! I want to make all of our time together special and happy.

I really appreciate all of your advice and help.
I will keep you updated!
Thanks so much,
Dana

hopefulone
Posts: 1048
Joined: Jan 2007

Hi Dana, I'm sorry the news wasn't better at the oncologist, but do not give up hope. See ahamilton's post! My husband also has liver mets, He is completing his 3rd chemo treatment and after 2 treatments, the mets showed signs of shrinkage. He will be having another scan in a few weeks . We hope to pursue other options . There have been advances in this area in recent years and there are more options available now then there were before. I don't understand why they could not give you the size of the mets though. Your dad should be able to obtain that report from the radiology dept . They are his records and he can obtain them. Did he have a PET scan or CT? There are many long term stage IV survivors here. Check out personal webpages and previous posts.Some have chosen conventional medical treatment and some alternative treatment and some a combination of both. Stay away from reading statistics , they are outdated and each individual is different. Come here often for support. We'll keep your dad in our prayers. God Bless and keep us posted.

dsmegnky
Posts: 33
Joined: Apr 2007

HI,
I know I wish the news was better too!! We will never give up, we will fight this thing together for as long as we have too!!

I wish you good luck with your husbands scan!

I know the Dr. knew the size of them, I just don't think he wanted to tell us. We asked him several times, but still said " Well, What would it matter. Lets find out if it is really cancer first and we will go from there". I think they had gotten a lot bigger than he had expected and just didn't want to alarm us, but it is our right to know!!!!

The only scans he has had are a Cat scan (is that the same as a CT scan?) and a MRI and that is it.

I know that I should not read the statistics, but when I go and read up on information about the different treatments it is in there and I read it and then it just gets me down.

Everyone on here has been so nice and very helpful. We really appreciate all you support and prayers.
I will keep you updated.
Thanks so much,
Dana

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Dana,

I agree with SpongeBob - a second opinion is in order!! There are many procedures now for liver mets. I suggest a good cancer center where you can see a specialist in colon cancer.

As for CEA, some people go way up into the 1000's and others range from 0 - 10. CEA count is not always a good measurement for cancer, too many other things affect the count.

Best of luck to you.

Kerry

dsmegnky
Posts: 33
Joined: Apr 2007

Hi,
I think I will talk to my dad more about this and see what he has to say about this. He does really like this Dr. and I did too until this last visit. It seemed like he was keeping something from us and I don't like that at all. I sure hope we did not waste to much time with this Dr. that it can be fixed, when we switch Dr.s'

Thanks so much,
Dana

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Dana,

Second opinion time. I switched oncs and it made ALL the difference!!!! And ask about the PET scan...found my subsequent breast cancer when they were looking for mets on my rectal cancer..

CEA...mine was .7 (that's not a dust speck...it's a decimal point) before treatment started on my stage III rectal cancer...

I was given 6 months to live...2 YEARS and 6 months ago...

"Statistics are for betting horses, and expiration dates are for milk products", to quote someone here...Dad's attitude needs to be 100% that he WILL beat this...well, with the occasional pity party (I have the party supplies, let me know where to send them..lol).

I said this to someone that had a mom in hospice...I was speaking with a minister once about cancer. "You all have it so good", he said. "WHAT???" "You all get a severe warning that life does not last forever, and that you need to live each day happy, mend fences, finish projects".
"Why do some people live and some people pass?", I asked. "Well", he said, "The ones who pass have finished all the tasks they need to do, the ones still here are not finished yet".

Love him. Encourage him. Have his grandchildren spend some precious time with him.

But, remember, IT'S NOT OVER TILL IT'S OVER...we have so many miracles here...NED (No Evidence of Disease) is a great friend of many who had some very dark hours...

Hugs, Kathi

dsmegnky
Posts: 33
Joined: Apr 2007

Hi,
Thanks so much! You made so much since and put a lot of things into perspective for me.

I do love him, I do encourage him and his family is his number 1 fans. He gets to see his 2 grandchildren at least a couple times a week.

We will fight this with all we have!!!

Thanks again!!
Dana

ahamilton2
Posts: 32
Joined: Dec 2006

Dear Dana:
So sorry to hear the bad news. Sounds like it's second, or third, opinion time. Your oncologist isn't giving you critical info. And his attitude doesn't sound helpful - to say the least.

CEA can be a good indicator for some, like me, but a poor indicator for others. My doc's tell me that the scans mean more than CEA. But perhaps that's only for my case.

Can't your get your Dad to consult with a good surgeon to get a liver resection? That's what I would push for!!!

Actually, that's what I did push for. Not to repeat myself, but check out my posting on 4/30. I had 18 tumors (colorectal, liver & lungs). Now I have no evidence of disease.

If there's anyway I can help, please let me know. I can send you the personal email & weblink to my own FANTASTIC liver surgeon.

God Bless you & don't be afraid to advocate for your Dad!

dsmegnky
Posts: 33
Joined: Apr 2007

HI,
Yes, I would like to get some more opinions, but how do you go about doing this? Just incase we don't like to other Dr. we will be getting?

We will find out more about the liver resection after he has a biopsy later this week. I will let you know.

Where are you from? We live in Colorado.

Thanks so much and I am so happy for you. I hope we will be as blessed as you.

Dana

ahamilton2
Posts: 32
Joined: Dec 2006

Dear Dana: To get a second opinion, you need to do some research. Find a reputable insitution that has a great reputation for treating cancer. One that makes cancer a priority - not just a few oncology offices in some building/basement.

According to reports I've read the top three cancer centers are: MD Anderson (Houston), Sloan Kettering (NY) and Johns Hopkins (Baltimore). (I chose Johns Hopkins for chemo and MD Anderson for surgery.) But I'm sure there are many other top-notch centers out there!!! There are lots of choices.

You just need to get to a major institution that focuses on cancer. How about Denver? Is there a large hospital in Denver that has a building or wing devoted to caring for cancer patients? You could start searching on the internet. I don't know anything about hospitals in Colorado, but I googled it and came up with a few cancer centers in the Denver area.

Then you have to choose an oncologist at that hospital or cancer center. Get one that specializes in colorectal cancer! Call the hospital and arrange for an appt. with that oncologist. The new oncologist might ask your Dad to get a PET scan. Get your Dad's records together beforehand, as a new doctor will want to see films, reports, etc. Your Dad is entitled to get copies of ALL reports, lab work, notes, films, etc!

I just remembered a website that I used when I was first diagnosed: www.blochcancer.org !!! Check it out. They're all about advocating for yourself or loved ones and their FREE book helped me develop my battle plan! Their website and book were an education for me!!

Don't lose hope. There are new, cutting-edge treatments out there. You just need to get to an oncologist at a major center who's familiar with ALL the options.

I live in Lancaster County, PA. Yes, the Amish country. But I made the many sacrifices to go to Baltimore & Houston to get second and third opinions. They saved my life.

I'm not a medical person so I hesitate to comment, but I have to wonder why the doc's want to biopsy your Dad's liver when a PET scan would tell you immediately? To me, and again, I'm not a medical person, the PET scan would be greatly preferred. Taking a biopsy of the liver is extremely tricky and none of my doc's or surgeons will do it. The PET scan lets you know if there's cancer. Just a suggestion. You might want to re-consider the biopsy until you get a second opinion or PET Scan.

Whew! Sorry to go on so long. As I said, I don't have many medical answers, but I've been in your shoes. Get a second, third or fourth opinion from a major medical center.

You can email me anytime! And I'm certainly rooting for you & your Dad!!!
Aileen

dsmegnky
Posts: 33
Joined: Apr 2007

Hi Aileen,
I have to tell you that I am so thankful that you have given me so much information, along with everyone else on this chat has been so helpful. I am so excited and I will tell you why, I talked to my dad tonight about the idea of switching Dr.s and getting a second opinion and not only was he open to the idea I think he was also excited about it. If it wasn't for all the help from everyone on here and what you guys have been through I would have never knew about most of this. This is the first time I have ever had to deal with cancer up close, so I have so much to learn. Thanks you so much!!!!

At first he thought he would have to do all the tests over again, but I told him that all he would have to do was have the other Dr. send them to his New Dr. So he was very glad about that. Tests are never any fun either!

We live in Colorado Springs and I looked up a Cancer center here that looked to be pretty impressive. Would you take a look and see what you think? The web site is coloradocancercenters.com it is called Rocky Mountain Cancer Centers. I have even looked at the Dr.s and John M Burke MD seems to be very knowledgeable. His work and research experience includes a fellowship in medical oncology/hematology at Memorial Sloan-Kettering Cancer Center in New York City. He has been with Rocky Mountain CC since July 2003.

I am now very very excited and ready to get started with a new Dr. and get a second opinion and see how things go. We were debating whether to wait until after the biopsy, but after reading your e-mail we are NOT going to get the biopsy we are going to get the second opinion first and then we can go from there.

Plus, the cancer center even takes his insurance, so that was great. We are going to start getting thing set up tomorrow and I will keep you posted. Thank you so much for writing and giving me all of this information, it sure helps so much. I do a lot of research on the computer, but a lot of the information is either confusing, outdated or so hard to understand. I am glad I have someone to write back and forth to so I can ask questions and everything. I am starting to feel better than last night, that is for sure.

Thanks to everyone for sharing your stories to help someone else, that is so wonderful.

I can't thank you enough!

Dana

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi -

You might also look into the University of Colorado Cancer Center which is a National Cancer Institute designated "comprehensive cancer center".

Here's a URL -

http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_112106/page8

Take care,
Betsy

ahamilton2
Posts: 32
Joined: Dec 2006

Dear Dana: WOW! You've accomplished so much! I'm so happy for you and your Dad!

I checked out Dr. Burke and he seems HIGHLY qualified! Very impressive credentials. Good for you!! The center/facilites look good to me. Ultimately, it's a good facility/doctor ONLY if you & your Dad feel comfortable and totally informed. You have many choices.

I was very thrilled to see that the Denver cancer center has a PET machine and a PET/CT machine! Awesome! Great technology. Check it out on their website.

Hint: when you book the appt. with Dr. Burke, you might not want to use the words "second opinion". In my own small experiences, some doc's are too busy to book "second opinions" quickly. I would always say that I want to "see the doctor in order to seek treatment at your hospital". Worked for me, but you'll have to see for yourself. Don't be afraid to push to a quick appt. or ask to be put on a "cancellation list" in case someone else cancels soon.

Can't tell you how relieved I am to hear that you'll wait on the biopsy, at least until you get a second opinion. I'm not medically trained, but it sounds like the smart move to me! I can't help but think a PET Scan will be most helpful, but you'll have to hear your doc's advice.

Hint: I've found that it's better to go to your Dad's old doctor's office and pick up copies of films and records yourself. Just give them some advance notice. Otherwise, they may just tell you that they'll "get around" to forwarding the info. to your new doc. And trust me, it either won't happen speedily, or not happen at all. I've been there! I always called the old office, then showed up, to pick up ALL records and films. Then I hand-delivered them to the next doctor.

Don't forget to check out: www.blochcancer.org. The website & free book helped me so very much.

In the future, you can just email me, here on this website, instead of adding to the discussion thread. Just an idea. Either way, I'm here for you, just like all the other incredible survivors on this site.

Aileen

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi Dana -

Aileen is right about picking up records yourself. You get them much faster.

For example, you could go the GI doc (assuming his diagnosis was during a colonoscopy) and pick up those records. The surgeon will certainly give you copies of his records / op report. And you can go to the radiology facility which did the scans and get reports as well as images burned on a CD. A lot of running around, but you get them much quicker and all of these docs readily pass out records and are not the least bit offended. That only leaves the oncologist and those records may actually be of less significance than the other ones I mentioned.

Good luck.

Betsy

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