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Topic: Helping Mom

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: Jan 15, 2021 11:00AM

MommyBird29 wrote:

My mom was diagnosed with Metastatic Breast cancer 7 years ago. She had a PET scan done around the time she was diagnosed and they said as far as they could see that it hadnt spread. But the two tumors in her breast would evenuatually come through the skin. She refused to have a mastectomy, Chemo, and Radiation. At that time I understood why she refused treatment. We watch my dad battle Non-Hodgkin's Lymphoma for 7 years. He suffered the whole time with chemo, radiation, and bone marrow transplant. Unfortunately he did not win the battle. In the last year or so my moms tumor has come through the skin. It has now grown the size of a grapefruit. She was diagnosed with fungating breast cancer. It has ate away at her whole breast and the result is a gapping hole that requires cleaning. I do my best with wound care on her everyday. It is getting difficult because you don't know when its going to start massively bleeding. Plus it is also very time consuming. Not that I am complaining because I cant imagine how she must feel. But going back and forth can be draining because being a mom of 2 kids and wife is a job in its self. My heart breaks for her because I wish there was something more I could do. If there is anyone that is experiencing anything like this and can give advise on what more I can do that would be great. Bras are very difficult find for the reason that they do not go high enough under her arm pit to cover up the whole wound. We have tried multiple different wound creams to help with the itching, oozing, and odor. So far the Curad Vaseline strip that have a medication in them help with the odor. She wears two bras, two ABD pads, and sometimes puts a wash cloth over that to help with the fluid. She is embarrassed to go out anywhere and doesn't want to get out of the house. Which right now is reasonable due to the Covid. In the last month she has been experiencing wheezing and labored breathing. The doctor told her that she has asthma but I don't think that it is that. I think it could possible be the tumor invading her chest wall and possibly spread to her lungs. She has been to multiple breast surgeons and they refer her to an oncologist. From there the oncologist tells her that she needs to take a hormone blocker to help decrease the size of the tumor and could possibly help with the bleeding. She completely refuses to take the hormone blocker. If anyone has experienced anything like this I would like to know what else there is to do. 

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Jan 15, 2021 11:44AM MelissaDallas wrote:

Since your mom refuses treatment, the only help I can think of for you is a referral to a wound care specialist and hospice. You are in a very difficult situation and I am sorry.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Jan 15, 2021 06:34PM MinusTwo wrote:

Melissa's advice is very good. I'm not a doctor, but I doubt that hormone treatment would help something this far advanced. The wound care specialists are very good at teaching new ideas for care of this wound. Also HOSPICE would definitely give you some respite. It would be appropriate since she was diagnosed with mets 7 years ago. Do get in touch with them.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 15, 2021 06:44PM exbrnxgrl wrote:

I agree with melissa and minus two. Anti-hormonals would most likely have little effect on your mom’s condition. Wound care specialists and hospice care will help make your mom as comfortable as possible. This is a tough time for your mom and family but hospice services can help ease things for all of you. Take good care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jan 15, 2021 07:13PM - edited Jan 15, 2021 07:30PM by moth

I don't understand the first part where you say she had been diagnosed with metastatic breast cancer but that the scans said it hadn't spread...metastatic by definition means it has spread . Was it perhaps invasive at that time? Because invasive is not the same as metastatic

But back to today...there was a while ago someone else looking after someone "refusing care" and my advice to them was same as what I will say - stop what you're doing. Reality is they're not refusing care, they're letting you provide care. You need wound care doctors and physicians to take over.

Btw, It's possible this may still be operable.

It's possible that systemic treatments would give her good quality of life.

A fungating tumor is the opposite of good quality of life. It's also not a good death. If she's refusing treatment thinking this will somehow be better, she's sadly mistaken.

She may not be willing to change her mind but you can. Step back. See a counsellor. Protect yourself and your children. This shouldn't be taking over your life like this.

Almost all people on this board have gone through or are going through chemo, surgery, radiation. It isn't all suffering. Cancer treatments change and improve pretty much constantly. I hope you can convince her to try to treat the cancer.

But if not, i really believe she needs to know this will continue to worsen, & a wound care team needs to be involved. Wound care teams would provide best treatment.

You're a good loving daughter but sometimes that means saying no.

Best wishes

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jan 15, 2021 07:48PM flashlight wrote:

Hi MommyBird29, You are a very kind and caring daughter. I know you are doing your best. The odor is coming from necrotic tissue and unless it is removed the wound won't improve and it sounds like it is too late. Wound care or hormone blocker can help your Mom now. Hospice is truly wonderful and they can give your Mom the end of life care she needs. Is she on Medicare? That will help with the cost. Do you know of Hospice near you? Call and get the information. Thinking of you and your Mom.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left

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