I can't believe this is happening (my mom)...

bayougir1 · New User Joined: 19 Jul 2008 Posts: 5

Hi I am new here. This is happening so fast and I am having a hard time dealing with it. I am not sure if we are making the right decisions.

My mom first got "sick" in February. Her doctor told her she had asthma.

Then the aches and pains begain about the same time and were arthritis, sciatica, or a pinched nerve.

The confusion started in May and that was early dementia / alzheimer's.

Not quite two weeks ago, we found out how very, very wrong it all was. A bone scan showed numerous hot spots in 3-4 places. Metastatic bone cancer.

Then her doctor tracked down a CT scan she had a month earlier (long story), and there is a growth on her lung. She has since had a bronchioscope done, and the doctor told us right away that it did not look good. He said the from experience, it too was metastatic. We have NOT gotten the official biopsy report in. I have called and called and they keep telling me it is not back yet, even though it has been a week since the procedure.

A CT scan was scheduled for her body to find out where it originated from and if any other areas were affected, but the machine was broken and they didn't do it. My parents' have not been able to reschedule it.

In the last 2 months, my mom declined rapidly. My mom can barely walk now. She can take about 2 - 3 steps. She is in a wheelchair or in bed mostly. She can not do anything alone and needs 24 hour care. She has become partially bladder/bowel incontent. The confusion is about the same or a little worse. She has "seen" people who weren't there. She forgets she has no clothes on or half undressed with out realizing it. Her behavior is very different, which makes me suspect brain mets as well. She barely eats and vomits often. She has lost 20 lbs and is very weak and unsteady. We predict with in a month she will be bed bound. She is wasting away physically and mentally.

We had asked for home health at the appointment when we learned it was cancer. My dad is all alone with her, and he is not well either. Home health came and said they can not help much. The home health nurse recommended Hospice. My mom's doctor went along with it, so now my mom is receiving hospice care.

We don't have her biopsy results. We don't know if she has cancer anywhere else or where it originated. All we know for sure, is the bone mets are pretty severe. Some family members are appauled that we called for hospice instead of giving radiation/chemo a try first. I find myself defending it and getting angry since they do not know the whole story. My mom is not able to make decisions for herself, so my dad and I are making them.

In my heart, I don't see the reason to make my mom sicker with treatment that will most likely not work. She is so frail that I am not sure she would survive it. Obviously the cancer has made her very very sick, so I would think it is too advanced for treatment. But then sometimes, I think this all happened SO fast. Two months ago she was out and about, able, driving, and almost normal. What if there was a chance to make her better, even a little better?? But with having hospice now, we'd have to drop out to even attempt to find out anything else.

I am just so confused and wonder if we are doing the right thing.

Oh and my mom is 74 years old yesterday. I am so sad to think it most likely will be her last birthday.

brainman

Hi bayougir1. I am so sorry about your mother's advanced bone cancer and deteriorating condition. There are several types of cancers that affect a person's bones but only a few primary bone cancers. What specific cancer cell type does she have? Her treatment options and prognosis greatly depends on that information.

You and your parents are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

bayougir1 · New User Joined: 19 Jul 2008 Posts: 5

Hello Jim, thank you for the reply.

We don't know. All they have told us is that it is metastatic - both the bone cancer and the lung cancer. I do know the bone cancer is wide spread in mutiple places all over her skeleton. A few spots are really bad and causing her severe pain. We aren't sure where the cancer spread from either. I have called and called to get the lung biopsy results so we'd have something official to go on, but they keep telling me they do not have it yet and it has been well over a week.

karolynca · Experienced user Joined: 13 May 2008 Posts: 51

I am sorry you are facing this, my dad is currently slipping away from Cancer too and I have never seen such an aggressive and destructive disease, but many have beaten cancer...my recommendation is to live one day at a time...

Many cyber hugs
_________________
Dad ~ Passed away from Multiorgan failure due to secondary liver cancer on July 2008

http://cancerforums.net/viewtopic.php?p=34365

brainman

I suspected that it was metastatic lung cancer. They will treat it as they treat the primary. Since her lungs have tumor, my hunch is the lungs are the primary site. Again, the treatment and prognosis will greatly depend on the exact cell type. The other option is that it might be skin cancer that has metastasized to both the lungs and bones.

You and your mother continue in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

simplyklb

Hi,
I am sorry to hear about your mom's condition. Sad

Lots of good thoughts and prayers for you and your family.

I am not a medical professional. However, I have two parents who have lung cancer. I have learned a lot about lung cancer since my parents were diagnosed in May. Lung cancer can spread to the bones, brain, and organs. My dad has small cell lung cancer (a very aggressive form of lung cancer). By the time he was diagnosed, my Dad's cancer had spread to bones and liver. My dad has shown great response to the chemo. But we know his cancer will come back. My dad is receiving palliative care due to his pain issues from the bone mets. His cancer and subsequent radiation and chemo have left him in a weakened condition.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

simplyklb

Hi Jim,
I agree with you even tho I am not a medical professional. I would be anxious to see what the results of the biopsy are.

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

hopeful · Regular Joined: 27 May 2008 Posts: 30

Hi

I'm so sorry to hear about your mom. I'll be praying for you and your family. My father recently passed away from lung cancer which spread to his bones and brain. Hospice was a godsend for my family. I would still insist on seeing the results and getting all the answers you are entitled to, but hospice is very caring, dignified and will give you the emotional and physical support that you need right now. I think that you are intuitively making the best decisions for your family.

I'll keep you in my thougths and prayers.

bayougir1 · New User Joined: 19 Jul 2008 Posts: 5

Thanks for the replies.

Yes, they told us the bone cancer was metastatic and the lung cancer appeard to be metastatic as well. My mom went for a CT scan of her body to find out where it originated, but the machine was broken and my dad didn't reschedule it.

I guess what confuses me most is that there has been NO mention of treatment. We requested home health, but home health visited her and said they couldn't do much, and referred us to hospice. My dad is 75 and taking care of my mom all alone. They wanted a little help since my mom has been feeling really bad.

It's going on 2 weeks and they are still telling us the lung biopsy results aren't in yet. My mom hasn't even seen or talked to an oncologist. Basically, based on her bone scan, her regular doctor sent us straight to hospice care as if there is no hope. (??)

Under hospice care, my mom can have NO chemo, radiation, no tests, no CT scans, nothing. From what I understand, we'd have to drop hospice to even seek out information on if she CAN be treated. And right now hospice is the ONLY help they have, and my mom is getting worse by the day.

Perhaps it is too advanced for treatment, but no one has come out and said that or given a prognosis.

pl101 · Regular Joined: 16 Jul 2008 Posts: 10

Hi bayougirl
It is all very overwhelming and so shocking. My mom was doing very well and in the last 2 weeks things have changed for her dramatically. I am so sad also. Like another person said, many cyber hugs to you.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1262

Hi Bayougirl,

I'm sorry about all of this cancer mess for your Mom. It's inexcusable that the biopsy results are not in yet. We had the biopsy results from my husband with additional staining tests within 2-3 days after his wedge section biopsy. The oncologist came and talked with us the next night after his surgery. None of what you are saying makes a lick of sense to me -- call the doctor and demand (in a nice way) that you get some answers.

Your mother's cancer is obviously late stage wherever the primary site is. Depending on what the primary is though she could be treatable. At the very least she can have radiation to help with pain for some of the bone mets.

There are palliative teams available that will give home help while she has some treatment. I didn't know about those and thought hospice was the only game in town. Call your hospital and ask about a palliative care team if the doctors can get their act together and determine if there is some treatment that can help your mom.

This is when a family member can be a strong advocate for a loved one. Start making some noise and get answers.

Keep us posted and good luck.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

idobelieveinfairies

I agree with the above comment. I would start demanding answers. I have learn after battling cancer myself that sometimes you have to break in the front of the line for the things you need. And hospice does not limit your mother from treatment or test. You really need to argue with that. Maybe that was another conversation but hopefully they will read this also. Sometimes believe it or not chemo and radiation is pain control. Your mother should not be suffering like this. Demand more pain meds, test and answers.

simplyklb

My dad receives palliative care. He has pain issues due his bone mets. I do not know what we would do without palliative care! Our team is wonderful!

Kristi
_________________
Dad - Andy, 70, diagnosed with SCLC in May 2008
2/20/38 - 10/15/08 Fly high, Dad!
Mom - Jackie, 67, diagnosed with NSCLC in May 2008

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