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Update on my mom

Edina77
Posts: 13
Joined: Oct 2004

I have not had access to the internet past few weeks , and i just wanted to give you an update on my mom. We saw the oncologist and she (the doctor) was very negative. She walked in and told my mom " We are not going to cure you, you are going to die of colon cancer "
I was so shocked. I tried teling her of many strories i read here, and she just cut me off and said " Not in your moms c ase, she can never be cured" ... When i asked how many tumors are in the liver, she said " I am not sure"

I cannot believe it. My mom is so ready to fight and she is doing ok. SHe cooks, hangs out and does not sleep as much anymore. She even told me that since few days ago, she feels so much better, she has no pain and she is eating good.

For those of you who don't know - she has stage 4 colon cancer with mets to the liver. So,m on the 5th of November we have a ct scan scheduled and then she starts chemo. Shei s goign have it once a week for two weeks with a week break. I dont know if this is enough to beat this beast or just to keep my mom alive. I don't know anything anymore.... I fight hard to stay positive , and then the doc walks in and wipes all those hopes away.... I really don't know what to think anymore.

Thanks for listening.

I wish you all well...
Edina

deneenb
Posts: 130
Joined: Jun 2004

Edina,

Please do not give up hope. Read my post from earlier today about my Dad's great results. When he came out of surgery the Dr. basically told us the same thing and he made it sound like the end would be very soon. This week the Oncologist smiled for the 1st time since we met him when he said my father was in remission. The prognosis for stage IV cancer with mets is not considered good. Dr's deal with statistics and that is just what they will give you. But as any other member on this board will tell you, we are not numbers we are individuals and every individual is different, responds to treatment differently, handles illness differently, etc.

The Doctor does not have a direct line to God and he is the only one who decides when someone's time has come. When I was deep in despair I was told to get a Dr. who is going to "treat it to beat it" even if he thinks the odds are against it. It does not sound like that is your Dr's attitude. Please get a 2nd and possibly 3rd opinion, preferably at a major cancer center. I don't know where you live but there are cancer centers in many different states.

There are so many different treatment options available today - Do not give up hope. Get your Mom as nutritionally sound as you can, lift up her spirits and tell her to stop in and view some of the posts herself. There are many stage IV survivors here.

Best Wishes,
Deneen

neon356
Posts: 137
Joined: Mar 2004

Edina,
I completely agree with Deneen. If I were you I'd look for another Dr., one wihout such a fatalistic attitude. When we're fighting for our lives we don't need someone to tell us to give up. Granted, your mom seems really sick but no one should be telling her that there's no hope. Tell your mom to keep up the fight! Regards,
Carl

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

With doctors like that, it is no wonder that some people give up! It is shocking to hear how hopeless some doctors can make it sound. I do agree that they have to be clear about expectations and not make promises that they cannot keep but there are much more discreet ways of saying it. Maybe, they could say as they do in my husband's case when the doctor said that these are the statistics but everyone is an individual case.

Your mum's attitude will help so much in her treatment and her survival. None of us knows how long we have and it is therefore important that we live each day to the fullest and not worry too much about all the possibilities in the future.

steved
Posts: 836
Joined: Apr 2004

I would agree with what is written above and teh need to get a second opinion. Your oncologist appears to have trouble communicating but it may be still that they are a good doctor clinically- in choosing your team you need to weigh up what is impportant to you- someone who can communicate and make you feel positive or some one with the technical knowledge but few interpersonal skills. With luck you find someone with both.

Do take what they say within the context of the situation though. Your mother has a serious illness that in many cases is the final cause of death to that person. however what they can't predict always is when that will occur, your quality of life in teh meantime and the fact that there are some who do appear to achieve remission even from seemingly hopeless situations. Even if the illness is the thing that finally carries your mother off it is still important for her to live her life in teh meantime and enjoy doing so- focus on quality. We all never know whenn we will go and the benefit of having cancer is that it makes you begin to appreciate your life more and do all you can to enjoy it.
Sorry rambling a bit but I think I got message across. Let us know how things go and never lose hope,
Steve.

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi Edina, My name is Judy. I know you probably don't know what to think about your mom's situation righ now. All I can tell you is, Don't give up ever. I had surgery last July for early stage rectal cancer and was told that by taking chemo it would only increase my chances of not having a recurrence by 5%, so I didn't have it. I had a recurrence in January and went through chemo and radiation and had surgery on May 20th. I was in intensive care for 9 days and in the hospital for 56 days. I wasn't expected to live, but here I am, supposedly cancer free. Not cured for 5 years, but no evidence of disease right now. So don't ever give up. I know it is as hard or harder on the caregivers as it is on the patient. I know my family had it rough for a while. If you need to talk, my email is grandma047@aol.com. I will be praying for you and your mom. My mom had breast cancer 9 years ago and she is going strong today. She is the strongest person I know.
Love and prayers, Judy(grandma047)

carmen07
Posts: 120
Joined: Apr 2004

Edina
My husband had colon surgery last Oct 2003 that spread to his liver. He had liver surgery in 2004 for two lesions on his liver. One was very deep. His doctors never gave him a death sentence, and have even used the word cure. After you find out how many tumors are on the liver find out if they can be surgically removed or RFA. Go to a surgical oncologist or liver surgeon.
I would seek a second opinion, and go to a large cancer center. Don't know where you live, but we live in the east coast. If you need help or have any questions, please feel free to write. Tell your mom not to give up!

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Boy, Edina, others have said it "Get thee to another doctor"; one who has some interpersonal skills no matter what her medical knowledge. A local oncologist here in Boston has written a great book called "The anatomy of hope", based on case stories from his work. He feels that an oncologist's first job is convey that the doctor and the patient are on this journey together, and together can manged whatever lies ahead. Maybe you mom's onc should read the book while you get a second opinion?
I switched to a different onc in my group early in the practice. I'm a nurse, and the first one kept repeating "Oh, don't worry about the details, you'll do fine" when I was asking more technical questions. I wanted information, not a pep talk, but managed to get both from my next doc.
Good luck to your both; keep us posted. Judy

Edina77
Posts: 13
Joined: Oct 2004

first let me say thank you all for your kind words.
Second - i want to take her to another doctor so bad but we can't do that- at least not yet.
She is getting treatment at a local county hospital because she does not have insurance and because she is not eligible for medicare.
So, other then having thousands and thousands of cash ready upfront and for each visit at a major cancer center - we have to stay where we are.
SO thats the story. I am still looking around for some organizations to see if she could get in to a cancer center and get a second opinion.... Guys, let me tell you: she is doing better every day. At least for now she is. It's like, now she gets up and wants to clean, cook etc. Of course i dont let her get too tired, but i let her do small things which makes her feel good. the other night she made dinner and kept singing " Yeah, i am making dinner, i can't believe it!!!" She feels like her old self again. But then- there is that doctor and when i think of her my head spins so fast i think i am going to loose it!!! Who is SHE to tell my mom how long she has to live and how she is going to die??!! I believe in God. I believe he is on my moms side now and as long as he is with us, we can beat anything.
My victory is when i read one of your survival stories. I may print them out and leave them all for my moms oncologist to read and learn something new.

Keep fighting and thank you all for everything !!

Edina

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