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Topic: Just need to talk to people that have been there.

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: May 14, 2021 06:48AM

Daughterlost wrote:

I am the caregiver to my mom who has MBC with bone, brain and possibly liver Mets. I don’t have much information because she is an ostrich when it comes to information about her disease. Unfortunately with COVID I have not been able to attend medical appointments for the last years or so. I get that her method of coping is avoidance, and I respect that. Mine is knowing all possible information and processing that. Unfortunately there is only so much I can gather when she doesn’t ask questions.

Here is a bit of background. She was diagnosed in 2017 and had a a part of her breast and some nodes removed. By 2018 it was Metastatic and had shown up on her spine. The drs we’re watching some dark spots in her liver but I don’t know if anything ever really came if it. Since then she has had radiation in her breast, targeted radiation on her spine and chemo. They seemed to be stable. In July of last year I lost my dad to pulmonary fibrosis and 2 weeks later, she was told by the drs that she had 12-18 months. (They have been divorced for 35 years, and my mom is single) We moved her in with us in November because she is on disability, suffers from SAD, and couldn’t afford to be on her own. When we moved her in it was more to help her financially than take care of her. By January she seemed kind of off. I thought it was the depression but by mid February she was having what we thought were vision migraines. From twice a week to every day. She went to the eye dr, then an ophthalmologist who ordered an MRI. That was on the 1st of April. The next evening (Good Friday) around 8pm her Family dr called her to tell her she has more than 10 tumours in her brain. She has had 5 treatments of WBRT and aside from some hair loss she seems to be experiencing no major side effects. Her dr has referred her to a palliative care team. Her personality has altered a bit and seems to be depressed, understandably, but can’t do anything that brought her joy before because her vision has become so bad.

She is not saying much, again I respect that. We have come to an agreement that she will tell me important information when she is told and then aside from symptoms she can hide her head. I guess the point of this is to tell our story and hear about others who have experienced similar things.

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May 14, 2021 08:13AM - edited May 14, 2021 08:13AM by Moderators

Hi Daughter, and welcome to Breastcancer.org.

We're so sorry to hear of your mom's diagnosis and recent troubles and we feel for all the both of you are going through. However, we're glad you've found our Community and decided to reach out. There are many members here who are always willing to offer some advice, information, encouragement, and support -- we're all here for you both!

You're sure to get some helpful responses here soon, but we just wanted to say hi, you're welcome here, and you're not alone.

Big hugs to you!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 14, 2021 08:37AM - edited May 14, 2021 08:37AM by KBL

Daughterlost, I'm so sorry your mom is going through this, and you sound like a wonderful daughter who cares very much. I wanted to say that I have a health portal with my oncologist, and I'm able to invite whoever I want to be able to see it. Does your mom have that ability? All of my health records are there. Maybe that would be a way for you to stay informed without asking your mom what's going on; that is,if she's okay with you seeing.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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May 17, 2021 04:05AM Daughterlost wrote:

Thank you very much. I didn’t expect such a sense of relief when I got a response.I hold a lot in, and while I have people to talk to, it’s different.

KBL- Thank you for your kind words. I’s possible that the Cancer Centre has something like it, but trying to find out if she’s set up or having to set her up would frustrate her. There will be a nursing team coming in, in the next little bit so I’m hoping to get some info from them.


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May 17, 2021 04:32AM KBL wrote:

I’m wishing the best for you.

De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/24/2019 Femara (letrozole) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 9/19/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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May 24, 2021 07:51AM edwards750 wrote:

OMG I’m so sorry. My sister had Stage IV BC but she lived in another state from me so I wasn’t her caregiver - her husband was. She did come to my city to get a second opinion and was here 2 weeks before she died. My BIL was as you would expect emotional, exhausted and afraid. It was a horrific time for our family. My sister was close to the vest too until her BC came back.

All you can do is be there for her. BC is such a cruel and insidious disease.

Take care.

Diane

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May 24, 2021 08:55AM Jetcat wrote:

Hi Daughterlost- I cared for my mother when she was diagnosed with stage IV ovarian cancer. I’m not sure how it works in Canada but in US you can be assigned as healthcare proxy so you can speak with her doctors directly. My mom didn’t withhold info and she remained in good spirits through her illness but I would suggest looking into other caregiver support early so the total burden doesn’t fall to you. The 4 years I had with my mother before she passed away are very special to me and I’m thankful that I was able to be with her— we laughed a lot! At the same time, caring for a loved one is extremely stressful —lots of highs and lows! Be sure that you continue to care for yourself and get all the help you can early on.

Take care.

Hopeful Dx 2017, DCIS, Left, Stage 0, Grade 3, ER+/PR+ Dx 2019, DCIS, Left, Stage 0, Grade 3, ER-/PR-, HER2- Surgery Mastectomy Radiation Therapy Surgery Lumpectomy
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May 24, 2021 09:13AM Trishyla wrote:

My sister and I were the caretakers for our bedridden mother for a little over a year before she died of stage four lung cancer. We were fortunate to both live close enough to do one week staying with Mom, then one week back at home. We also had the most incredible hospice team helping us out, as well as an amazing night aide.

Taking care of our Mom, who had raised us as a single parent, was the hardest thing my sister and I had ever done. But it was also the most satisfying, loving time for the three of us. I would do it again in a heartbeat.

It is a lot for one person to try to handle alone, especially if at some point she does become incapacitated. Would she be open to bringing in hospice? They are a great resource.

Good luck to you and your Mom. Come back here anytime you need to vent. We'll be here for you.

Trish

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/4/2017 Xeloda (capecitabine)

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