my mom's diagnosis

gladiola

Hi, I am new to this site.  My mother was diagnosed about 6 weeks ago.  Her cancer is ER+/PR- HER2 positive.  She is 63 and post-menopausal.  Her cancer has spread to her liver and her bones so I assume that is Stage IV.  She was started on Femara, Herceptin and Zometa - initially supposed to be every 3 weeks, but she had a reaction at the first infusion so they are giving her just one drug at a time.  She got Herceptin again last week and will get Zometa at her next visit in 2 weeks.

I had a few questions:  Is this standard therapy for post-menopausal women?  Why are they not considering chemotherapy?  I worry that they are taking this approach because they think her prognosis is not good.

There are a lot of details that we have not asked the oncologist because I don't think my mom and dad want to know.  They seem to trust the doctor and don't ask any questions.  What I have written is pretty much all we know.  Should we (her children) be asking or should we just let things be?  Do we have a right to know if she doesn't want to know?

We are overwhelmed and confused.

kathy322

Hi, I am new to this too.  My niece was diagnosed recently and it is consuming my life.  I am so sorry about your mom.  I actually know nurses that tell me that you can't be too involved when it comes to your parents' health.  Ask questions.  Ask questions.  Ask questions.  Someone, besides your dad, should be with your mother during every visit.  Things can be forgotten or confused.  This can't be easy for them, so if possible, I would be with her at the doctor's office.  I'm sorry that I don't have any answers for how they are approaching this.  I just believe that doctors deal with this every day of their lives and forget that we are so confused and filled with so many unanswered questions.  They are going to be responsible for our loved ones and to us that's scary.  We have to trust a stranger with saving their lives.

I pray that everything works out for your mother.

Kathy 

gladiola

Hi Kathy,

I am very sorry about your niece.  I hope things go well for her.  Thanks for your advice.  We have been at every visit but have not been asking too many questions for fear of upsetting my parents.  Maybe it is time we started asking.

Thanks again.  I wish your niece all the best with her treatments.  Take care, Pam

wishiwere

Pam?  Coming from another side of it, I think it really depends on 1) how much your parents want to know and 2) how much they want YOU children to know.

How old are you parents.  IF they want you to take over, or take even an active roll in this journey, you really need to clarify with them, what they want from you.  In this I mean, do they WANT you to research it, or to ask questions of the doctors?  Or do they want you to have a 'supporting' role.  By that I mean, perhaps they want your support and as such want you to be at the appts, but no ask questions they don't want answers to.

My husband is not medically inclined and his first questions to the doc were what is the chance this is cancer?  Just after we finished the biopsy.  He said, what you do mean? and ending up telling dh it was 50-50% it was cancer.  The first thing I told both my husband and the docs is I didn't want statistics.  I was going to fight it and didnt need to hear at that time what the chances were I'd be dead in 5 years, you know?  So, there are things, perhaps your mother doesn't want to hear and as such, it shouldn't be asked. 

Then again.  If they are older and have the attitude that the doctors and health professionals are God's personal gift to us, then maybe it's good you can ask questions they might not otherwise ask.  Again, my hubby is the type that takes all docs orders and follows them. No questions asked.  There is a happy medium.

I don't know about mets treatments, but is your mother going to a Breast Cancer clinic, or a general surgeon and hospital/clinic?  If at all possible, she should be going to a Breast cancer clinic where they are up on all treatments, and not just those tried and true of the past 20 years.  Things are changing with treatments sometimes weekly. 

Sit down with you parents and have a frank discussion about what their wishes are, then follow those.  Good Luck and prayers to you all.

gladiola

hi wishiwere,

Thanks so much for your input.  My mom is 63, my dad is 70.  I do get the feeling that my parents feel as if doctors and their decisions are not to be questioned.  I know, though, that they do have many questions that they don't ask.  Often, one of us (my siblings or I) will ask a question and find out later that it was something that my mom had been stressing over but didn't have the nerve to ask.  Like you, statistics are something none of us want to talk about.

My mom is being treated at a Cancer Center at a University Hospital.  In general, we have heard good things about the hospital. 

My mom has been feeling very good lately - her bone pain is almost gone and her appetite is back.  I was feeling good until I found out that my friend's sister (who is being treated at the same facility and also has breast cancer that spread to her liver and bone) is being bombarded with chemo and is terribly sick from it.  She is not post-menoapausal like my mom and she is HER2.  I guess I was trying to understand if these differences explained why the 2 treatment plans are so different.

Did you ever go for a second opinion?  Is that something that is we should have done?

I wish you all the best too. 

MLMM

Gladiola--

My heart goes out to you. I know that feeling of being overwhelmed so well and not knowing what to do. I am new to this list as well. 

I am in much the same boat as you. My mom is 63, my dad is 68, and my mom has mets to the bone and liver. She was diagnosed in April and things looked very bad, but she has made improvements. She is triple negative, so she can only take chemo. 

I agree with the others--it just depends on what your parents want and how much information you want. That can be a hard thing to figure out. I would really encourage you to spend some time in deep thought about this. I have a journal I keep. It has been my life saver many times as I struggle with navigating the role between daughter and caretaker and translator of medical information. 

For me and our family situation, it is right to know a great deal about her diagnosis. I wanted to make sure she got the best care possible, and she was too overwhelmed to ask questions. So was my dad. And I am an only child and neither my mother or father have living siblings. When she was first diagnosed I was living in another state (I live near her now), and i called her doctor so I could fully understand her diagnosis.He was nice enough to call back and answer any questions I had. SInce that first conversation I have to continually ask questions and ask for more information. It has been my experience that if you want information you have to be fairly specific when you ask questions. 

For me, I need to know as much as possible. This is what my mom wanted as well. But I agree, you have to do what is right for your family. If you do decide to go the route of asking lots of questions, be prepared to be persistent as it can sometimes be hard to get the oncologist to spend as much time with you as you need. But be persistent. It is their job to provide your mother with quality care and answer your questions. 

I am so glad your mom is feeling better! That is wonderful.   

Jazwog

My advice is to go with her and your dad and write down what he says.  When my mom was diagnosed that her cancer had returned she went "LALALALLAALALALAL" I don't want to hear this!  I took my chair and scooted across the room while my sister and mom cried.  I listened and he told me it was in her bones her liver her cranial her lungs and all my mom heard was Cancer!  When I told her what he said she didn't beleive me and I had to call him back the next day with 3 way calling so she could hear it over again without the shock of it all.  Buy her a calendar book that she can write notes down and put dates in so she can keep track of it all.  Tell your mom your going to help her through this, it effects you too and you want to know as much as you can but try not to be pushy, ask her mom what kind of questions do you want to ask the dr today before you ever go to the appointment and then your prepared even your own questions.  You and your mom will be happier to know you have gotten everything out of your visit with him.  Hope this helps it did me!

outdoorzen

I am also new to this list, and website. I wholeheartedly agree with everyone. My mom was also just diagnosed three weeks ago. Since then she has had has her mastectomy and will start her chemo this Friday. Everything can be so very overwhelming. She is a very young 73, and a retired RN, but it is still the emotional impact of everything being thrown at her. The first thing I did was to go out and buy several file folders of different colors, a notebook to tuck into a bag and a calendar that also has note space. We went through this eight years ago when my father was diagnosed with met lung cancer. It will make you crazy if you do not keep a short log of everything. It is very helpful for office visits, hospital stays etc. Since I am also the caregiver here, I keep a small calendar and notebook so that I can make sense of it all.

We learned with my dad to always have someone else at the dr, and that has followed with Mom. Someone else needs to hear that info too.  Like Jazwog says, it is way too tempting to stick your head in the sand and wish it all away. I would hope that your parents would be happy to have someone else help share the burden. Mom and I laugh about our homework the night before a visit. We sit and write our questions down, it helps us focus in the same direction. 

Remember, all of those drs and nurses work for your family now. My dad's oncologist made sure that we understood that first thing.  I think that little insight has helped me more in all my dealing with the medical profession.  Thank goodness my mom's dr feels the same way. If you need to be pushy, don't hesitate! Your mom's health and everyone's sanity depends on the right information.

Best of luck to all!

NCdaughter

Dear Gladiola,

 I am so sorry you and your family are going through this.  My mom was originally diagnosed four years ago and just recently found out that she has a bone met.  All of the ideas people have suggested for staying organized are excellent and I highly recommend that someone take notes at the doctor's visits.  I have also found it extremely helpful to write down my own questions and my mom's questions as we think of them and then refer to our list at the visit.  You should talk to your mom about the role you want to play in her medical care and the role she wants you to play.  If it is ok with her, go ahead with questions during the visits.  If she would prefer you not do this, or if you are not able to go with her to the visits, she can put you on a list of people who are able to get information about her medical records and speak with her doctors.  This has been extremely helpful to me since I live 4 hours away from my mom and cannot always go to every visit.  I have called to ask questions before about her lab results.  I have also called to ask questions on her behalf, when she has been too anxious to pick up the phone herself.  Finally, it is never too late to get a second opinion.  There are many options for treatment out there and some doctors have different views on treatment for metastatic BC.  I would encourage you to do this, it is something we are doing right now ourselves.

 Your mom is a lucky woman to have you as a daughter! 

NCdaughter

Gladiola,

There is one other thing I wanted to emphasize.  Take good care of yourself and seek out individual or group therapy if you need it.  This is something I wish I had done even sooner.  It has made me a better caregiver and friend to my mom during the past four years.

 NCdaughter

justamber

Hi. My mom was diagnosed with IBC in Feb 08 and she wasn't asking any questions either. It's like she doesn't want to know. I kept asking her questions and she always said "I don't know, they arn't saying"

I eventually asked the doctor when I went to an appointment with her. I stepped out in the hall to "use the bathroom" and told the nurse I wanted to ask the dr. some questions privatly. She found the dr. for me and we talked. My mom had no idea. I didn't tell her because I didn't want her to worry about me.

I needed to know for me. I needed answers. If there are things you want to know, ask. You are going through this too, not just your parents. Good luck and GOD BLESS!

gladiola

Thanks everyone for your kind words and advice.  You are all caring, wonderful people. 

My siblings and I plan to continue going with my parents to all the Oncologist visits, and your suggestions for writing notes and keeping organized are great.

I wish everyone lots of luck.