How much time left?

My mom has fought bc since 1993. She had lumpectomy first time. Then in 96 she had masectomy on right breast where they found 1st lump because it had returned, both were ductal carcinoma. Then in 05 she found lump in left breast and had lumpectomy. That one was lobular carcinoma. In 06 she had found another lump on left breast and she had masectomy of left breast. Thru all of that she refused chemo. She did have radiation in 93 and in 05. In Feb of 2010 she had a cough and it just never went away and then she had some problems with eating certain foods...she said that they kind of got stuck in her throat. Then she said she couldnt catch her breath somedays. Finally in may after me and my husband demanded she go to DR. She went. The diagnosis was metastic breast cancer. She is Stage 4. She has 3 spots on bone. (hip, 2 ribs) Mediastinal tumor which was pushing on esophagus. And node by collarbone. She is refusing chemo once again. She had radiation on hip and mediastinal and is taking zometa. Which now brings me up to date. Her cough is getting worse and she keeps saying its a cold. She is coughing up "gunk" that is what she tells me. She wont let me and my husband go to Appts and she just tells us what "she" wants us to know. My question is what are we up against, and how long do we have with mom? I have been searching all over for info but really cant find anything like hers. I know each cancer is different for each person but anything would be help for me to understand. Thank you for taking time to read this. Take care everyone. Thank You.
Sincerely
Nikki

[nikkib1970]

Sorry for the double post. Was told by my aunt that mom had told her there was tumors in hiliar region and questionable spot on liver. Other than that mom looks good and seems fine....other than that cough.
I apologize for the double post. Again take care. May God Bless each and every one of you.
Nikki

[bluebutterfly2222]

Hi Nikki,

It must be terribly sad and frustrating to have to watch what your mom is going through, without being 'let in."  It is her right to keep her medical information private, of course, but it certainly makes it more difficult for family members and other loved ones who would like to support and help her, as well as to try to prepare themselves for what is to come.

Unfortunately, as you have found in your research, there is no way to predict what will happen.  Although with Stage IV the goal becomes controlling the disease (while  keeping the pt. as comfortable as possible and maintaining as much quality of life as possible), many, esp. those with only bone mets, have lived for years.

However, it sounds as though your mom may  have organ mets as well as bone mets, and since she  has refused chemo, the outlook is probably not  very optimistic and her time probably not very long. (But many doctors won't discuss possible survival time, even in cases like hers, because they have been surprised so many times...)

At this point, about all you can do is help her in any way she will let you, and try to make whatever time you have together as enjoyable as possible.

Best wishes...

[Cheerpul]

I read your post and my heart goes out to you.  I cannot answer the question of how much time.  My Mother is like yours and it is so frustrating not knowing the full truth.  It is also hard for a person like me (who likes to know and understand everything possible) to handle not knowing if what I am being told is so or if there is much more.  They think that they are protecting us.  

She may gradually allow more information, but the main thing, is to do things together that you can to enjoy each day.  When she feels up to it, go places, take a car ride, remember family stories, share easy-to-swallow foods (Would she like chocolate mousse?) and spend quality time together.  Help her with the things that she will let you do, with shopping, house cleaning, polishing shoes, doing laundry and the like. Take her some music or a good book or magazine to enjoy .  I am thinking of you.

[katarina777]

Since your mother has never had chemo, she may respond especially well.

Chemo is not nearly as horrible as it used to be; there are exceptions, of course.

I have had many chemos, and still do, also being stage 4. I was progressing rapidly towards the grave when my cancer spread to  brain and liver. They then started me on a new chemo, and this past year I have felt better than I did before I ever got breast cancer. It was so amazing and I had hardly any side effects, at least none to speak off.

This of course will end sometimes, but she really should not assume the worst. I never threw up once in three years. What's the worst that could happen, you should ask her. Also, what she is most afraid of?

I can only imagine how awful this is for you and I wonder if she is aware of this at all?
She can do it, chemo, especially if most of us would do it again if we had the choice.

All the best, KATRIN

[sanibelblueyezz]

Nikki, I am a 57 yr. old mom with stage IV breast cancer.  It is very hard to share with my kids what is going on.  When I told my son some of it he asked "are you going to die?"  My answer "we're all going to die" and as crazy as he is I could lose him before he loses me.  Your mom sounds like she's given you pretty much what she knows.  My husband goes with me to every appt. and there are times I'd like to go by myself.  It has nothing to do with letting him in just it's easier and more comfortable on my own; but I don't want to hurt his feelings by telling him not to come.
I have not had to be on chemo yet but somewhere down the road they may request it and I don't know if I'll do it.  If it ruins my quality of life it's not worth it if they cannot guarantee a cure.  
I do not know how long I have and your mom probably doesn't know either.  Love her, be there for her, show her your love, help her is all I can tell you.
God bless you all.

[katarina777]

You have had no treatment at all?

I would think if your oncologist thought you would benefit from treatment, he/she would have suggested this immediately after you were diagnosed?

I am just very curious about what you, and/or your doctor, mean? I mean, there is not stage 5 to wait for?

KATRIN

[nikkib1970]

I just wanted to "Thank You" all from my heart for responding. I am a wreck with all this with my mom. And to have all your womanly wisdom to help me cope helps me so much!  
To Bluebutterfly: Oh is it ever fustrating...Yes, like you said it is mom's right to keep her medical info private and I respect that but that is the hardest part for me to handle. Because all my husband and I want to do is support her and help her and make her life more comfortable and enjoy what we have with her to the fullest. And me being who I am I want to prepare for whats to come and not freak out when it does. Thank you so much Bluebutterfly for your response....I don't feel so alone. I will keep in touch and keep you in my prayers!
To Cheerpul: You and I are alot alike on how we deal with things. Yes, I like to know and understand everything possible when I face trials and hardships. Like you said parents like ours think they are protecting us....How unfortunate that they think that way...because if mom would just open up to me I would go to the ends of the earth to help or comfort her anyway I could. Thank you dear lady for all those ideas to do with mom...I took note and am gunna start doing them. I will keep in touch and keep you in  my prayers!
Katarin: No, mom has never had chemo since her battle with breast cancer began. In 2005 her 31 yr old niece was diagnosed with rectal cancer and she had 3 kids. That girl did everything possible to stay alive for her babies. Mom saw her try everything out there imaginable to keep her alive and all she saw was how sick her niece was with the chemo and from that moment on she adamently refuses chemo. The family, doctors, and everyone in the medical field has explained how chemo has changed and how different her cancer is from rectal. She just has got it in her head and no ones gunna change it. I am gunna print out what you wrote with how you have handled chemo  and any others that I see on her....cuz she has never seen anyone but her niece do chemo. And I am gunna ask her the questions you asked. I appreciate you sharing a part of your journey and I will keep in touch and keep you in my prayers!
You are all amazing ladies! Thank you so much for replying and giving me suggestions and words of wisdom!
Sincerely and all my love,
Nikki

[bluebutterfly2222]

Nikki,

It was sweet of you to take the time to respond to us in such a detailed and personal way, even though you are busy coping with such a stressful situation!

We are here if you need us again in the future, and meanwhile you and your mom will be in our thoughts and prayers.

Warm regards,
bluebutterfly