New to BC.org & introduction

hotcoffeenow

Hello everyone. I've been reading some of the various discussion boards and learning as much as I can. This board looks like the most appropriate place for me to post, as my mom has recently been dx with BC.

Mom was dx in October 2011, had a lumpectomy in early February 2012.  Lymph nodes were positive, she had a scan about 10 days ago that showed a spot on her liver and possibly some suspicious spots on her ribs. The liver biopsy was positive. As far as I know nothing has really been verbalized about the possible mets on the ribs.

On the day that she got the news about the positive biopsy, she fell and broke her hip.  She has just moved to a regular hospital room but is facing a long uphill battle with recovery from the hip fracture. 

The truly sad thing is that for the last 10 years she has had horrible health issues; heart attack, horrible abdominal pain, bone pain, osteoporosis, arthritis, followed by a pulmonary embolism that she barely survived.  She had 5 or 6 wonderful months where she was finally getting mobile again, and felt well enough to stand and go in for her mammogram, and BAM! I wonder how long the cancer has been there and how long the liver mets have been there as she was having unexplained bowel issues. A few years ago her liver enzymes were abnormal. Her doctor says this is a slow growing type of cancer, and the lump removed was quite large - how could her PCP miss it? I have some anger over many of the symptoms and pain she's been having for years, some of which I think now might have been this cancer. Her PCP is truly awful, but that's another post.

I live 2000 miles away, my dad also has cancer, and is primary caregiver to her and a much younger brother who is disabled and living at home.  I guess what I'm looking for here is a place to support and be supported.  Dad is somewhat in denial and felt for a few days they "didn't need to know" too much regarding expectations, but now he knows, and I think what the oncologist says is probably a little sunnier than the truth, in light of her other serious health issues.  My mother is awfully tough, though.  As for now he hasn't told my mother about the seriousness of the prognosis, because he is worried she will just give up.  I told him there's no right/wrong as to how to handle it.  He certainly will have the discussion sooner rather than later if she asks.

I'm hoping to help hook my dad up with support and services that they both will need going forward.  Right now the talk is 6 weeks of rehabilitation in a skilled nursing care facility, if we can get her out of the hospital  That is the major hurdle. As the doctor says, she needs to get up, and until then she is at a very elevated risk of another embolism, pneumonia, or other infection.

Her treatments will be somewhat limited re: the cancer because of her health conditions, so there aren't a ton of options in the arsenal, so to speak.

Anyway, that's my mother's story. 

Moderators

hotcoffeenow, we're sorry you and your family are going through so much! Will your parents' doctors or hospital social workers or community care coordinators be able to help organize ongoing care? If you can say approximately where your family is located, members may be able to recommend resources close to them.

Judith and the Mods

chrissyb

Hi hotcoffeenow and welcome to BCO.  It might be to your advantage to post this in the stage IV forum as I'm sure you would get a whole lot more responses from the ladies there.

I'm really sorry that your mom's health has been so bad and now she has broken her hip just to complicate things.  Has your mom's cancer been typed?  It will be much easier for us to give advice if we know this as well as what area you/she lives in so others can chime in to offer information re help from organisations for both your parents.

Sometimes growths are missed by the doc's but your anger is understandable.

Love n hugs.  Chrissy

kingjr66

my heartfelt prayers to you and your mom and dad.  Being so far away must be awful for you since you sound like the kind of daughter I am to my mom.  I too live away from my mom and worry constantly about her.  She is still very active for 81 but she has health issues.  The posts above are very good advice so that others near to her can offer suggestions on care and help. 

hotcoffeenow

Thank you for the very kind responses.  I believe my mom's cancer has probably been staged and typed - however, this is not information my dad has written down, and I don't yet have a release to talk to her doctors.  I am going out in less than 2 weeks and hope to secure permission then.  I assume stage IV because of the distant metastases.  My dad told me that the doctor indicated her cancer will likely "respond well to hormonal treatment" and "is slow growing".  So based on the sketchy information I have so far, and the prognosis the last doctor gave, I am kind of making some semi-educated guesses about what is going on.

Their talk with the medical oncologist was delayed once she broke her hip.  She was able to start her medication regimen in the hospital - I have no idea what she is taking first, but I will know a lot more once I'm out there.

My dad had (unfortunately) been misinformed while she was still in ICU; a palliative oncologist told him that "people could live 8-10 years".  I know anything is possible, of course, and we will hope for the absolute best, but the other folks in ICU got wind of this and spoke with him, and said "average" with her particular cancer would be 1-2 years. In addition to this, she has many health conditions which will complicate things, and which will eliminate some of the medications she can take.    Originally she was supposed to get radiation after the lumpectomy but that is either out or on hold now. Perhaps as a palliative treatment, I don't know.  Horrible for my dad, but I think being able to plan care for her while still hoping for the best is important.

I just want to support my parents in any way possible.  If she ends up being able to come home, then I hope to take some time of work and stay for an extended period if they want me...

My dad has talked with both social services and a palliative care team.  Hopefully they will start getting him hooked up with the right resources.  It isn't as seamless as health care in my area, for sure.  They are in the Salem, Oregon area.

chrissyb

Hotcoffeenow the information on your mom's cancer sounds like ER/PR+ not sure on Her2, stage IV because of the liver mets and slow growing could be either grade 1 or 2.......more than likely stage 2.......either way the doc is right about responding well to hormonal treatment which is just a little pill and possible another drug called Zometa for her bone health.  This is pure speculation but seems to be the standard of care and she could indeed begin trestment in the hospital. 

The first doc was correct, she could live eight to ten years even with the liver mets as there are many women here that have very similar diagnosis and treatments and are surving very well. The 1 - 2 years is the statistical average and I was told the same thing and that was three years ago, I'm still doing very well.  None of us are statistics and all are individuals so please take heart your mom could still be around for a long time yet.

The hormals are far less debilitaing and much gentler on the system so your mom should be able to tolerate them well without them causing too many problems with her other ailments.  I'm glad that your dad has spoken to palliative care as they will give him loads of good information not just for the cancer but for the broken hip as well.  I think you will find that they (the medicos) are far more concerned about that at the moment rather than the BC as it could indeed cause a whole lot of problems.

There is a saying, hope for the best but prepare for the worst and live each day as if it were your last that way the bad news is easier to handle.

Love n hugs.  Chrissy