New here - mom just diagnosed...

TJMagoo

Hello everyone...I just found this site and hope I can stay here for a while and pick all of your brains with questions.

My mom is 55 years old and has just been diagnosed with liver and colon cancer. I feel she is getting bounced back and forth between doctors with nothing being done. First they talked about starting chemo, but wanted to wait on her colonoscopy resutls. Well those came back that she has a tumor in her colon and they want to now operate to remove the tumor or tumors. Then my mom would have to wait 4 weeks to heal and then she would start chemo. She met with the surgeon at the local hospital today and he thinks there is more going on in there than he wants to tackle, so he is sending her back to the University of Cleveland hospital next week.

I just want someone to do something. Start chemo or do surgery. I feel we are wasting time. My mom is down in her spirits and has lost a lot of weight (about 30 pounds in a short amount of time).

How do you guys cope...you and your family? I am having such a rough time with it. I feel like I want to talk to my mom about it but I start to cry and can't get anything out. This is all so new to my family, none of us know what is to be expected or what we should be doing to help out. We're all praying as much as we can and my mom keeps saying, it's in God's hands now and I truely believe it is.

Thank you for listening and any tips and advice would be greatly appreciated. Thanks in advance!

-Kelly

hopefulone

Hi Kelly and welcome, although I'm sorry you are here under such circumstances.

Since your mom has colon cancer, I suggest you post under the colorectal cancer category. You will find much support there and many stage IV survivors. My husband also had colon resection in January for colon cancer and surgery 3 weeks ago to remove the liver mets(liver resection). I just want you to know that many people have gone through a similar experience , us included, and there is always hope. You are right, God is in the driver's seat, but you and your mom can also be your own advocates. Be sure to be persistant in getting answers and if you aren't comfortable with the answers your getting, seek other opinions. My husband was told inoperable for 8 mos for the liver mets. We did not give up. He had 9 chemo treatments after colon resection and finally had the liver surgery done . Attitude and positive thinking can go a long way in making this a smoother journey for your mom. Stay away from statistics. They are based on old regimens. There have been many advances made in chemo drugs in recent years. My husband was on a oral pill for 14 days and went for iv infusions once every 3 weeks . Feel free to email me if I can give you any info. Keeping your mom, your family and you in my prayers. God Bless

Diane

maggyrose

I was given the same run around by my family Dr. Your mom needs to see an Oncologist right away and get surgery put in place. I had part of my bowels removed, followed by chemo. The chemo shrunk the liver tumor so much they couldn't find it on the scan. Within a year, it showed up and I had a liver re-section done. Don't give up hope, there is an answer to all this. Best to you and your Mom.

mingle219

Dear Kelly, wow I feel like you were telling our story. Mom was recently diagnosed 2 weeks ago with melanoma to the liver. She had a Choroidal melanoma 5 years ago and had to have her eye removed along with the melanoma. For 5 years she has went faithfully to her oncologist getting excellent reports back each and every time. 3 weeks ago she started feeling ill and had some swelling under her rib cage on the right side. She went to her family doctor and he took and xray of her abdomen and said that her liver was enlarged but they would call it stomach flu for now and take some blood tests. I went with her to get the results 3 days later and her liver enzymes were elevated. We were referred to a gastroenterologist who did a basic physical exam and he said that her liver was twice its normal size. She was already turning yellow. She was admitted that evening to the hospital because I called her oncologist, we sat in the ER for 6 hours before we got a room. She is now vomitting and in real bad pain. Her oncologist wasnt on call so we had to be seen by her associate whom we had never met. On the 4th day after them drawing almost more blood than she had the gastro doc did a liver biopsy. We were sent home the next day with all kinds of meds to keep her from being nauseated and keep her bowels moving, we were told to see her oncologist in 3 days, but that they didnt think it was cancer. We arrived at the oncologist office at a 415 appointment, she now is weak ,literally glowing from jaundice and fighting back the pain and nausea and we got in to see the doc 2 and half hours later. I also notice that now her feet and ankles are swollen! The doc comes in tells me and my stepdad to sit down and she tells us that mom has stage 4 melanoma to the liver. She wants a mri of the brain and a petscan to see if its went anywhere else and then she will have her insurance person get on the phone with moms insurance person to see what treatment will be covered,and to setup the 2 tests, BUT, its Thursday and that person wont be in until Monday! I cant believe my ears, Im still choking down the news of the cancer. As I type this tonight, we are just now being able to have the MRI/Brain tomorrow, the petscan 3 days later and we cant get in to see the oncologist until the 31st! Im so angry and lost and my mom still wants to keep going to her oncologist because she has been seeing her for 5 years and she doesnt blame anyone for whats happened. I just want someone to do something and stop dragging their feet. Cancer doesnt stop for weekends or appointments!

dtominna

mingle219 said:

Dear Kelly, wow I feel like you were telling our story. Mom was recently diagnosed 2 weeks ago with melanoma to the liver. She had a Choroidal melanoma 5 years ago and had to have her eye removed along with the melanoma. For 5 years she has went faithfully to her oncologist getting excellent reports back each and every time. 3 weeks ago she started feeling ill and had some swelling under her rib cage on the right side. She went to her family doctor and he took and xray of her abdomen and said that her liver was enlarged but they would call it stomach flu for now and take some blood tests. I went with her to get the results 3 days later and her liver enzymes were elevated. We were referred to a gastroenterologist who did a basic physical exam and he said that her liver was twice its normal size. She was already turning yellow. She was admitted that evening to the hospital because I called her oncologist, we sat in the ER for 6 hours before we got a room. She is now vomitting and in real bad pain. Her oncologist wasnt on call so we had to be seen by her associate whom we had never met. On the 4th day after them drawing almost more blood than she had the gastro doc did a liver biopsy. We were sent home the next day with all kinds of meds to keep her from being nauseated and keep her bowels moving, we were told to see her oncologist in 3 days, but that they didnt think it was cancer. We arrived at the oncologist office at a 415 appointment, she now is weak ,literally glowing from jaundice and fighting back the pain and nausea and we got in to see the doc 2 and half hours later. I also notice that now her feet and ankles are swollen! The doc comes in tells me and my stepdad to sit down and she tells us that mom has stage 4 melanoma to the liver. She wants a mri of the brain and a petscan to see if its went anywhere else and then she will have her insurance person get on the phone with moms insurance person to see what treatment will be covered,and to setup the 2 tests, BUT, its Thursday and that person wont be in until Monday! I cant believe my ears, Im still choking down the news of the cancer. As I type this tonight, we are just now being able to have the MRI/Brain tomorrow, the petscan 3 days later and we cant get in to see the oncologist until the 31st! Im so angry and lost and my mom still wants to keep going to her oncologist because she has been seeing her for 5 years and she doesnt blame anyone for whats happened. I just want someone to do something and stop dragging their feet. Cancer doesnt stop for weekends or appointments!

Dear Mingle, Oh my goodness my heart goes out to you and your family. To everyone, please stay diligent. Our family is so plagued with Cancer , from what I have learned we have to diagnose sometimes for our selves??

pkl54

your mom
How hard to wait!!! We are too, but nothing like you and your mom. I can relate though, as the waiting is so hard. My husband was told 6/10 he had a spot on his lung, then squomous cell carcenoma, now a spot on his liver. MRI on Fri and oncologist on 7/6. He is in pain because he needs to have a hip replacement but since this showed up in his pre-testing we are on hold for that. We both know this all is not a surprise to God but it is still hard. I hate not being able to do anything but talk to Drs. and feed him and take over some of his stuff for him around the house! God is still good and we know his holy spirit is here with us, but... Keep trusting and working to get the ball rolling for your mom. Praying for you!!

Sundanceh

Hi, Kelly
Welcome to the board! I post mostly to the Colorectal board, but check in on Liver from time to time to see if I can help over here...usually for colon cancer that has metastasized to the liver.

I know it's scary right now, so the first thing is to take a deep breath. I'll try to provide you some information that will be able to help you begin on this journey.

I myself am just starting my 6th year battle with Cancer, got diagnosed at just 42, so believe me, I understand all to well what you are facing. You can click on my name SUNDANCEH and read my history - it is similar to your Mom's so you can get good info there and some inspiration on what I've been through and lived through to talk with you today. This can be done.

Here is what I can tell you. First, definitely get to a facility that specializes in Cancer. You need to work with an oncologist, a doctor who specializes in Cancer...this is not the time for a general doctor or an internist, you need a professional.

It's possible and highly probably that they will want to do Chemo and Radiation to help shrink the tumors before they do an operation. This could be about a 6-week course and then a 4-5 weeks to heal up some and then surgery might could be done. Post chemotherapy will almost certainly follow.

Colon surgery will be a resection, where they cut out the cancerous part and leave a healthy margin, might be done, or if the damage is very extensive, it could be a temporary or a permanent colostomy, which is removal of the rectum itself.

For the Liver, again it may be a resection if she is a candidate. Or she might eligibile for an RFA procedure, which is radio frequency ablation - how that works is a multi-prong device is inserted into the tumor and heated to extreme temperatures and the tumor burned out killing it and surround tissues to ensure a margin.

If RFA could get the tumor, good. If it can only get so much of it, then she might be a candidate for another device called CyberKnife. This is a laser precison device that delivers radiation in a radio surgery format that would "cut out" the remnants of the tumor that was left. I had both of these done with good success.

Chemotherapy would follow post-op here as well. You will hear names like Oxaliplatin / Avastin / Xeloda - these are all chemotherapy drugs both IV and oral that many Stage IV patients like myself have taken successfully to battle the Cancer. But the side effects can be harsh and hard on the body, so it is not an EZ road, but necessary for survival.

To keep her weight up, get some ENSURE, which is a supplement drink available in vanillar, chocolate, and strawberry - it will help with nutrition when she does not or cannot eat well.

WEBMD.com is a good website to look at to get an overview of the disease and get a basic understanding of what the road will be. It can be long, as I said I'm in year 6. I started out with Colorectal cancer, which spread to the Liver, which now may have spread to the Lungs, I'm looking into that.

Colon type of cancers go from Colon-Liver-Lung-Brain, and sometimes the Bone.

Right now is the fear of the unknow for you - I hope I have been able to provide some insight and you can read my story. In the Expressions tab, I posted 2 stories that I wrote about my Cancer experience - Personal Reflections and The Promise, on what my fears were and what I was feeling and what I tried to do with a 2nd chance of Life at that time.

Your Mom is still very young, so she has age working in her favor. See what the Univ of Cleveland comes back with - and I would encourage you to seek a 2nd opinion at another facility from there just to see if they are talking the same language - that will help your peace of mind.

Stay positive and go ahead and talk to your Mom - cry with her if that's what you feel - but definitely talk to her and get that out in the open - Cancer is a war and everyone on the team needs to be involved and not afraid to talk about the Cancer.

And when you can live some normal times, do that. Watch a comedy movie or a comedy show, sit out on the porch, and talk about other things too besides the Cancer. Try to live as close to normal as you can, this will help.

I hope I have not overwhelmed you, I have spent my 5+ year battle mostly alone, and wish I had someone to give me a heads up when I started - God has directed me to you this morning to provide you this information to help you, your Mom, and your Family. This is one of the reasons I'm still here and am glad to be able to try and provide a direction for you today.

I'm praying for you for strength and hope all goes well.

All my best to you and Mom and the rest of your family
-Craig

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