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Topic: Struggling to understand my mom's situation

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jul 13, 2019 05:23PM

Dishsoap wrote:

Hello there,

My mom was diagnosed with breast cancer (mets to liver) several years ago. Then it was a cycle of get sick -> chemo -> get better -> wait -> repeat. She responded very well to chemo so this was just the usual cycle for years.

Now the situation is that she has a spot in her liver (2" or something) and bone mets which are causing her a lot of pain (which seems pretty well controlled with opioids). She is going downhill though, and I am struggling to understand this. Her situation hasn't gotten worse according to the crazy amount of scans she receives, and she is soon starting another treatment at a hospital a few hours away. Yet, she sleeps all day, has no appetite, and recently has been talking like she will refuse further treatments after this one, and that she wants to "go home" (heaven) according to my dad. My mom is very much not a drama queen and was once very active, so to say this is alarming is quite the understatement.

I'm at a total loss on what to do. I do feel as though much of it is psychological, as her mom just passed away a few months ago and my sister and I (and her only grandchild) moved across the country (me three years ago, my sis/nephew 6 months ago), which she was incredibly supportive of. I of course offered to drop everything and stay with her, but my dad says there is not much for me to do and that my mom doesn't want us seeing her like this.

I apologize for the rambling, perhaps I can ask a few questions here that are not appropriate for me to ask my parents:

  1. In my mind, I had always pictured "dying from breast cancer" as mets to the brain, lungs, or a huge met to the liver - something that causes a vital organ to fail. Yet, her liver is functioning OK it seems. What is the usual mechanism by which people usually die from this disease?
  2. If she refuses treatment... what then? How long?
  3. I know you don't know this.... but it's the question I really want to ask... is it the beginning of the end?
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Jul 13, 2019 05:32PM santabarbarian wrote:

Very hard to predict. A friend of mine died at home unexpectedly while being treated at stage four. Nobody expected it. She did not think she was anywhere near dying. Nobody did. It is probably wise to consider it the beginning of the end -- since it is seeming the end of her wanting to do every offered treatment. I am sorry your Mom is in this situation!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jul 13, 2019 05:37PM BevJen wrote:

I would offer another perspective -- perhaps she is very, very depressed. This isn't an easy illness to live with, and it's discouraging to be in pain and/or to go through treatment after treatment. But part of surviving is mental. Perhaps if your mom is at a large center, you could see if there is a psychiatrist available to evaluate her. If she is not, perhaps you could call her oncologist and let him/her know what's going on -- that might be helpful to her.

Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy Immunotherapy
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Jul 13, 2019 06:47PM Moderators wrote:

Hi Dishsoap, and welcome to,

We're so very sorry to hear about your mom's diagnosis, and for what all of you are going through. This terrible disease takes a toll on everyone involved and it is truly very hard to deal with for all.

You've received some good advice already, and we're sure you'll receive more to come, but we wanted to extend a warm welcome to you and let you know that we're all here for you and your mom as you manage her diagnosis and path.

Sending hugs,

--The Mods

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Jul 13, 2019 07:41PM wrenn wrote:

After many years of cycling through many treatments and their side effects choosing quality of life over suffering more side effects to extend life a bit longer can be a rational choice and not one that requires psychiatric intervention.

Although it is hard for loved ones to let go or be comfortable with this decision it is important to allow the sufferer to make her own choices and to be there as a warm supportive presence to make her time, even if it might be a bit shorter, more peaceful.

It could be that your mother is struggling with grief or depression but I wouldn't assume that there is something wrong with her for making the choices she does. Having an honest talk with her might be good for both of you. I wouldn't quiz her but ask how she is feeling about everything.

It might be a good idea to find a counsellor or good ear to help you with this. It is a hard time for you and any support would be good. Sorry you are going through this.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jul 13, 2019 08:06PM Dishsoap wrote:

Thank you all for the advice. Of course I support her in whatever she chooses to do. The recommendation to seek a psychiatrist was a good one, I'll bring it up with my dad

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Jul 13, 2019 08:12PM - edited Jul 13, 2019 08:18PM by viewfinder

Dishsoap, My heart is broken for your mom, your family and you. Perhaps, as BevJen wrote, you can take her to a psychiatrist to evaluate her for depression. I've had friends and family members who were depressed and it's amazing how medicine can help lift that awful cloud. Remember, your mom said that she wants to refuse treatments "after this one." So she's not giving up yet and with the proper help and treatment, her this situation could turn around for the better.

Saying that, in these forums I learned about Voluntarily Stopping Eating and Drinking (VSED). It's a very difficult subject to discuss.

That's what I will do if I ever get to that point, cancer or otherwise. I pray my family respect my wishes. I'm 75 and have already have discussed this with my daughter and sister (small family). We all want our loved ones to stay "forever" but that's just not how it happens in life.

If she does refuse further treatment, I don't think anyone can say with certainty how long she will live. Hospice care can provide comfort and relief for months. My husband and mother were in Hospice before they died and they received wonderful and loving care.

I pray God give your family peace!

"You would not have called to me unless I had been calling to you,” said the Lion. – C. S. Lewis Dx 4/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+, HER2+ Surgery 6/11/2018 Lumpectomy: Left Radiation Therapy 9/13/2018 Hormonal Therapy 10/13/2018 Arimidex (anastrozole)

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