Topic: Frustrated- need advice

I am new to this site and think it is wonderful! - BTW.
My mothr-n-law was just disgnosed w/ stage 4, inoperable CC last week (multiple tumors in the liver). She is on a fentanyl patch and taking percocet because the pain is so bad in her abd. She has not been able to tolerate solid food for a couple of weeks now. Liver enzymes still normal;no jaundice.
I am frustrated because the oncologist we went to for her diagnosis informed the family- " Don't worry, I am not about to drop the ball, tell you to go on that last family trip, etc. We are going to FIX this." Seriously??? He acted like she had a broken arm! Have any of you experienced a doctor like this?
I am a registered nurse and from my own reserach and speaking with more than a handful of physicians including Anesthesiologists, pathologists, and general practitioners, I know that this cancer at this stage is incurable.
She begins IV chemotherapy tomorrow (5-FU and oxyplatin? ) Oh and BTW- the doctor made Chemotherapy sound like a walk in the park too- " only 5 % hairloss, maybe a little nausea- which we can give you medication for, and in general patients do very well with it ".  The patients and family friends I know who have undergone chemo say it SUCKS!
How much longer will her life expectancy be doing chemo? How will the quality of her life be? Is it worth it?  My biggest concern for her is upholding her quality of life.
I would  so appreciate any comments, personal experiences, information and advice. So sorry for the rambling, but venting to all of you made me feel better smile

Thank you ,
Concerned daughter-n-law

Re: Frustrated- need advice

Dear Daughterinlaw, welcome to our extraordinarty family. First thing I would say to you is get another opinion. We highly believe in that even if our ONC seems to be taking our monster CC lightly! As for to chemo or not to chemo it is always one of the biggest questions. How old is your MIL and is she is good physical condition otherwise? When it came for the decision for my husband he asked our ONC, "IF I take chemo how much more time will it buy me?". WHen the ONC said a month or so, Teddy opted for quality. He was 73 when DX and 78 when he said no. Teddy as on a long acting Morphine every 12 hours with a breakthrough quick dose every hour if needed. Worked fine for him.  Fentanyl did not work for him. I would ask the ONC point blank what the chemo will or won't do for her. Please, don't apologize for venting, that is why we are here. Guess we are the original ventologists?? Wishing you the best and please do keep us updated on your MIL, you have come to the best place to be. BTW, what a wonderful Daughter-in-law you are!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Frustrated- need advice

Daughterinlaw-Welcome and sorry you had to find us. Lainy was right you sound like an amazing DIL and you need another opinion. I am a CC survivor 3 years and 4 months cnacer free. You can read my story at www.catherinedunnagan.com under the telegraph section. Your onc is very interesting, may be a little to casual. Oncologist was right about chemo treatments our chemo side effects are not as severe (hate to say mild) as some chemo. I expected the "Life time movie" expierence, but it involved no hair loss, nasuea, all managed with 3 different anti-nasuea meds and tiredness all managed with extra rest. Everybody is diiferent so it could be harder on some. My chemo drugs were  gemcidabeane, 5FU and XELODA, I also did radiation.I also was Stage IV and inoperable, but my HOPE was a transplant.
Lots of prayers and HOPE -Cathy

Re: Frustrated- need advice

Thank you, thank you, thank you for your post! My MIL is 66 years old and I would not consider her a "healthy" person. She is not an active lady, has beginnings of emphysema from smoking, and now weakend from pain and not eating for sometime. The onc told her 4-6 months if she did nothing.
I got in touch with the outpatient palliative care team at my hospital and they said that they could work on her pain management, even if she decides to go through with the chemo. I think the palliative care team would be a great benefit to increase the quality of her life.  Support not only for her, but for the entire family. I passed the info on to her- hopefully she will utilize them . I keep telling my husband's family that they must not be complacent during this time, but rather extremely pro-active and assertive about her care.  I did tell my MIL to ask ther onc tomorrow.
We will see!

Daughter-n-law

Re: Frustrated- need advice

Hi Daughternlaw,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mother in law. But glad that you joined us here as you have come to the best place for support and help out there, and I know that you will get a load of each from everyone here.

First off, let me just say that I so agree with what Lainy says about seeking another opinion from a different ONC. Maybe not just another opinion but a few opinions if that is what your MIL wants here. Secondly and from what you have said to us, I think that the attitude of this ONC is terrible. I wouldn't be keen on having him treat me either. Have you asked him how many patients he has seen and treated for CC?

My dad was diagnosed with inoperable CC and he was give the choice of chemo or PDT. He took the PDT over the chemo as he wanted a decent quality of life for the time that he had left. As such, I can't give any personal experiences of what chemo is like, but I do know that so many memebers or their loved ones have gone or are going through chemo and I know that they will be along soon to share their experinces of chemo with you. Also, we do have a great chemo board here on the site that has tons of posts and thread regarding chemo and I am sure that that will be of great help to you as well.

As to your question regarding life expectancy and chemo, we can't answer that for you with any certainty and also, I can't offer any thoughts on quality of life either with chemo but I am sure that others will be able to chime in with their experiences here. From what I understand about chemo, people react and tolerate it differently from others and some types or  combo's of chemo's affect people in different ways as well.

No apologies are ever needed for venting or rambling at all! So please, keep coming back here and venting and rambling some more! And let us know how everything goes for your MIL. We are all here for you, we know what you are going through and we care.

My best wishes to you and your mother in law,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Frustrated- need advice

Thanks guys! I have told them to get a second opinion sooner than later. I have called everyone I know and received a number credible references for them to see,  but as they say...you can lead a horse to water, but you can't make it drink.
Just frustrating for me.  I am a fixer...a mover and shaker and in this situation my hands are somewhat tied. I love her like my own mother, but when it comes down to it...she is not. I don't want to over step my boundaries. I have already been labeled "the negative one", when really I just want want to be realistic and have the correct information so we can have the best possiblt outcome.
Thanks again everyone,

oh and...my name is Lindsy smile

Re: Frustrated- need advice

Good job Lindsy. One can only advise  then hope that the rest will be realistically optimistic. I am like you and yes, it would drive me crazy. You might want to tell them about this Board and some of the things we have said. Not sure it will help or not. Be strong and keep us updated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Frustrated- need advice

My mom is 72 and received chemo and radiation treatments and I must say, it kicked her butt. It was not easy, but she pulled through it.  I too was very concerned about quality of life. Toward the end of the chemo treatments and numerous hospitalizations due to other complications from the cancer, my mom told me that she was tired and after the scans were done, if the treatments did not work, she did not want to continue with chemo treatments anymore. But, I must say that we are so very grateful that she completed her treatments because her scans from yesterday showed that the liver was clear, no tumor. It's a rollar coaster ride definitely, but we are so glad that she got on the seat and took a chance at the treatments recommended because if she chose not to, I wouldn't know what would have resulted. The decision will be up to her.

Anna