My Mother has Stage4 BC and has not been treated yet

Tamtam001

Hello, I am new to this site and this is my first post.  I am hoping some of you can help me make sense of what is happening.  My mother was diagnosed on May 19th with Stage 4 Breast Cancer. 

She also has another medical condition called IPF.  She has had that for about 4 years now and at the time she found that out the doctor told her most live up to 5 years.  She has managed that disease very well and is not on oxygen as of yet. 

She found a very small lump in her breast in April and had went to the doctor.  He figured since it was so small, they caught it early.  She had the biopsy which came back as cancer.  She was set up to meet with the Surgeon mid-May.  When she was there to meet and schedule a surgery, she showed him a lump she had noticed in the previous couple of weeks that had appeared on her neck. 

Since that appeared, he sent her back for another biopsy which showed to be cancer too.  She then had a bone scan (?) which showed a spot on her rib.  It has gone through the circulatory system so I guess it is everywhere?  She has another appointment for a Brain Scan.

She met with the Cancer doctor who told her that chemo was not an option for her (maybe due to lungs from IPF?) and he was going to send her to a Radiologist to see about hormone treatment and radiation on the neck as she has severe headaches to relieve the pressure/swelling.

She had that appointment this week and now they say she cannot do the hormone treatment as her estrogen level isn't high enough and they aren't radiating the neck either.  They are sending her back to the first doctor and said she will be getting chemo now.  She now doesn't have an appointment with him until early July. 

She feels dejected and I can't blame her.  Why has it taken so long to determine what they will do for her?  It sounds to me like they really can't do anything!  I forgot to mention, that my mom is only 61.  Also, to make matters worse, my dad was diagnosed with prostate cancer the same week my mom received her breast cancer diagnosis.  What a mess....

I don't know what kind of cancer it is, other than Stage 4 breast cancer.  I don't think my mom knows either.  I don't know what to do or say to her.  I live 5 hours away and can't be there to help as much as I want to.  My children (13 & 10) are the loves of her life and she has asked me not to tell them.  She doesn't want to scare them as they have already seen cancer take one of my best friends 2 years ago at the age of 45.

I don't know what to do.  She doesn't seem to want anyone's help and certainly doesn't want pity.  I am so scared and wish I could do something and offer encouragement.  It is hard to tell someone to stay positive when they are trying to and can't even start treatment.  Perhaps it is better she doesn't have treatment.  Some say that it doesn't prolong life.... I don't know even know what the prognosis is.  Will she be here in 5 years, 2 years, a month?  It doesn't look good from my perspective.

T.

dlb823

Tamtam, I'm so sorry about your Mother, and I have two suggestions.  First, you need to repost your question in the Stage IV Forum (click on Forum Index above and scroll down until you see it), where it should get a lot of attention very quickly.  And, no, the fact that your Mother has two areas of concern, a lymph node and possibly a rib, absolutely does not mean it's all over her, and those two areas should be very treatable by the right medical team, which is the other thing I want to mention.

It does sound like her workup is stalling out a bit.  Has she been to an NCI-designated comprehensive cancer center?  Those are the tops places in the US for treatment, and I would highly recommend that she gets a second opinion at whichever one is most convenient to where she lives.  Here's a map of them: 

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html 

(Sorry, I can't seem to do a clickable link with my new computer, so you'll have to cut and paste it.)  These institutions see the most bc, so will have the most experience with a pre-existing condition like your Mother's.  And since she's already been diagnosed, they should be able to get her in very quickly for a second opinion, and get her on a treatment plan. 

Hope this helps.  Good luck to your both, and please keep us posted.  I'm glad you've found BCO!    Deanna 

steelrose

Tamtam...

Oh, this is a lot for you to handle! But there is hope, so please have faith! The first thing to determine is exactly what type of cancer it is... ER-, ER+, HER-, etc. This determines the treatment plan. From what you've said regarding the mets, chemo sounds right. It's discouraging that she can't start sooner though... but maybe her cancer is not that aggressive? I'm not sure of your Mom's particulars, but I will tell you that I was diagnosed at Stage IV with mets to spine, sternum, and liver and I am now in remission. My situation was pretty serious, so don't give up! I know how scary this is...please hang in there... you will receive wonderful support here!

All the best,

Rose. 

Tamtam001

Rose and Deanna,

Thanks so much for taking the time to reply.  I guess I should have included some more info.  We are in Canada and the Hospital is supposedly very good.  Also, her cancer is very aggressive.  I will repost in the other forum as you suggested.

Thanks Ladies.

MyMomsAdvocate

After reading this post I began to cry.  My mother was diagnosed with stage 4, triple negative breast cancer yesterday.  She has mets on her rib, sternum, and spine.  She has shown no signs of anything before we found out, and it was because she was wrestling around with her husband and he accidentally elbowed her (they're silly like that).  The doctors assumed it was an infected bruise, but much to my dismay it wasn't that easy.  We start chemo next week. I know that triple negative is a whole different beast in itself but I pray and pray and pray that she can be one of the few cases that sees remission.  Thank you for giving me hope and letting me know that I am no alone.

LuvRVing

TamTam - so sorry about your mother's diagnosis.  I, too, am 61, a mom and grandmom, and I have triple negative breast cancer.  Even with Stage IV, there are lots of treatment options and it's highly likely your mom can look forward to being here with you for many years.  No one knows whether anyone's cancer will respond to treatment, so the usual thing is to treat the cancer as aggressively as possible and keep track of the progress.  Forget that some people say it doesn't prolong life.  No one can possibly predict how an individual person will respond.  Don't let anyone put an "expiration date" on your mom!  Some women live more than 20 years with Stage IV breast cancer!

And it may take a few weeks for the oncologists to sort out what is the best approach for your mom, especially considering her other issues.  My cancer (a recurrence) was diagnosed in March and I just started chemo on June 15th, after having a double mastectomy in April.

Something for you and your mom to think about - we have told my grandchildren (8, 5 1/2, and 4) so that they will not be surprised when my hair goes away next week.  They know I am taking medicine that might make me feel bad at times, but that I will be OK in the end.  Your children are old enough to understand what's going on, but I can see waiting until you know more before telling them. 

This is a really difficult time for you and your family. Don't let the naysayers get to you!   And encourage your mom to come to this site for information and support.  The Stage IV forum is full of support, hope, love and valuable information from some remarkable women.

Hugs to you and your family,

Michelle

desdemona222b

I am so sorry to hear about your mom.  All you can do is your best during this confusing time.  Will keep you and your mother in my thoughts and prayers.