Lossing Hope, Help

I don't have the energy to write the whole history down right now but I am so frustrated with my mother's oncologist I just want to scream and cry.

she has stage 4 stomach cancer. diagnosed the first wk in november. she cannot finish a third round of chemo. she has started and stopped this round three times due to infections that put her in the hospital. the first was with pneumonia, this last time with a blood infection. she decided to remove her port and take a break. she's tired of the hospital.

I have been asking the doctor at every appointment if we could try something else. if he would refer her out and stop what he is doing since it doesn't work. she hasn't even had a pet scan since december.

after asking where is the cancer and hearing "it has spread outside the stomach" in January and saying "where???" we heard in the lymph nodes.  My brother called in february and somehow the doctor was now telling him it has spread to her bowels and pancreas. WHAT?? how are we getting that info now?

we met with the doctor the following week and tried to get him to tell her what he told us and we are all playing chicken. we are terrified it will have her lose all hope if she hears that it has spread.. but then we feel that she cannot get proper treatment or make the best decisions since she doesn't know.

she doesn't want to know but she doesn't want to give up, I know she doesn't.
she's alone and we are all far away from her.

I'm really upset and stressed and the waiting to have 3 minutes with her oncologist every three weeks is time that is wasting but then maybe there is really nothing to do.

I just want this to be different. I can't stop wanting to do something and I'm helpless.

she's got a cough now. I'm worried that it has spread to her lungs.

by the time we get the pet scan will it be to late?

Tough story.  My initial thoughts are SOMEONE needs to get on that oncologist.  they need to ask the extent of the spread and definately get some alternate treatment options.  From the sounds of it, it may very well be widespread but you will not know without good diagnostic testing.  How does the oncologist know that it has spread, what is she basing it on???  Three weeks is too long to wait with this disease.  Put the push on them.  My wife has been under treatment for Stage IV for a year and is in remission.  We have pushed the entire time for the attention she deserved and have received it. 

 

What a horrible experience for you and your family to have to go through.  Perhaps you'd be best suited by finding a new oncologist if possible.  Good, open and honest communication is so critical.  Informed choices need to be made and how can you acheive that if you don't have the facts?  I could never tolerate feeling like my oncologist was holding out on me.

Best of luck to you and your family.  It is your right to know every last detail about your Mom's health.  Demand it!

Stacey

 

On 3/8/2008 fontaine wrote:

I don't have the energy to write the whole history down right now but I am so frustrated with my mother's oncologist I just want to scream and cry.

she has stage 4 stomach cancer. diagnosed the first wk in november. she cannot finish a third round of chemo. she has started and stopped this round three times due to infections that put her in the hospital. the first was with pneumonia, this last time with a blood infection. she decided to remove her port and take a break. she's tired of the hospital.

I have been asking the doctor at every appointment if we could try something else. if he would refer her out and stop what he is doing since it doesn't work. she hasn't even had a pet scan since december.

after asking where is the cancer and hearing "it has spread outside the stomach" in January and saying "where???" we heard in the lymph nodes.  My brother called in february and somehow the doctor was now telling him it has spread to her bowels and pancreas. WHAT?? how are we getting that info now?

we met with the doctor the following week and tried to get him to tell her what he told us and we are all playing chicken. we are terrified it will have her lose all hope if she hears that it has spread.. but then we feel that she cannot get proper treatment or make the best decisions since she doesn't know.

she doesn't want to know but she doesn't want to give up, I know she doesn't.
she's alone and we are all far away from her.

I'm really upset and stressed and the waiting to have 3 minutes with her oncologist every three weeks is time that is wasting but then maybe there is really nothing to do.

I just want this to be different. I can't stop wanting to do something and I'm helpless.

she's got a cough now. I'm worried that it has spread to her lungs.

by the time we get the pet scan will it be to late?

 

I am very sorry to hear about your predicament. I would ask about all other possible treaments....if you don't ask, sometimes you're not offered alternatives. What about radiation? Does she want to take a break from chemo completely? Is she sure she want's to remove her port or has it been a source of problems? She could still get chemo even if she did remove the port. I think doctors think in terms of the cancer being contained vs. not contained....and so maybe that's why you weren't told about specific areas. I would also get a second opinion. I wish the best for you, your mother and your family.

Fontaine,

My heart is breaking for you and your mother, but it is time to get moving. The time to find a new doctor is NOW. Ask around for referrals to a different oncologist. It seems everyone today knows someone with cancer and it should not be too tough to get a good recommendation to a doctor with compassion and talent. If you were here in Denver I know exactly where I would send you. Please do this now as there is not a lot of time to dick around with Doctors that aren't helping. You are the customer, you have to get what you are paying for. Push through the shock and anger, you can do it. Your mom can too. NEW DOCTOR PRONTO !!!

We are all here if you need support, use it. Good Luck

Peace and Love to you and your Mom,

Scott

Scott I have read about you and your partner and your postings and responses for others and thank you for the kick in the ass. i don't want her to die. I just feel like I have to butt out to some degree, you know what I mean? Like doctors and other family are all trying to tell me to let her go and me going nuts on the doctor in her community-the hospital and oncology center are approximately a mile from her house isnt going to help. Do I drag her to New York, to Boston, to Texas and have new doctors look at her and say "sorry" or go ahead and treat her where she ends up alone for days in a hospital or hotel only to die anyway when she could be near her closests friends, in the home she built, with her things. I just am ripped in half on this and we have zero time. I'm not giving up but I am sure that she has. I feel like I failed her already. bless you-I am not using that lightly at all. you are helping so many people. thank god someone is beating the hell out of this cancer! best to you and yours, f

Dearest Fontaine,

Yes I do understand the "butt out thing", I just didn't realize you were there yet. In my experience, you have to be the best advocate you can for "your" patient. If your patient has already made up his/her mind about how much of this b-s they want to live with, then you have to respect that too. As hard as that is to watch. I am so lucky that Rick has not crossed that threshold yet. While we do have plans for home hospice care when that day comes, I haven't had to face that yet. If your Mom had not already made up her mind about her "Quality of Life" issues, then getting a new doctor should be at the top of the list. She has made that decision, so, Honey let yourself off the hook. Please just respect her decision and hope and pray when your time comes, someone will respect your decisions as well. We all know you love your Mother and that rings through loud and clear. Spend as much quality time loving each other as you can. God will take care of the rest. You have NOT failed her, you have helped her through a life-changing moment in her life, just as she helped YOU through a life-giving moment. Be Thankful for the time you have had with your Mom. I lost mine when I was 19 yrs old (she was 38). That was a heartbreaker too, but I lived through it and you will too! (although it was very tough for a while).  Wish you were here for a big bear hug. Hang in there kiddo, this too shall pass.

Many prayers and good wishes to you and your family,

Scott

Ditto what Scott said.  He is a wise man.  I lost my father to stomach cancer (also diagnosed at stage iv) at the end of Oct.  He lived five months and put up quite a fight, but truth be told, he had quality of life for about two weeks of the entire time.  He was asking for chemo up until 10 days before he died, even though it wasn't working. 

Please know that neither you nor your mother are 'giving up hope' by not pursuing treatment.  You are simply hoping for different things now:  sunrises, laughs, hugs, stories, etc.  These are the things that will make her last days memorable and meaningful.

 Best to you and yours-

 

Michele

Hey girl!

Just read about your mom.

Chosing the right treatment is a very personal and difficult thing. If I were you, and I have been remember, I would seek another opinion. Your oncologist seems to be a jackass. (pardon me) And you deserve more than what you are getting. I would request my records, films, reports and an itemized billing statement and take my mom elsewhere.

There are not a lot of options when it comes to the treatment of aggressive cancer. You are pretty well limited to chemo/radiation, radical surgery, or alternative medicines. I, personally, have seen good results with chemo/radiation and surgery. But you know how my story ends.

Quality of life is a big concern. You will have to talk to someone who will give you straight answers about the treatments. And that's why you might consider a new doctor.

You're in my prayers.