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Topic: wound care for MBC

Forum: Caring for Someone with Stage 4 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: Sep 9, 2020 09:51PM - edited 22 hours ago by Poppy99

Poppy99 wrote:

My relative I've been taking care of has open wounds on her chest and breasts (I didn't see them directly but her tank tops are getting wet from oozing from the nipples) She has lymphedema that turns the skin really tough - beyond leathery but almost like burnt skin that contracts and get really tight - and her entire chest is discolored and very hard.

Her MO told her to check with a wound care center.

Shouldn't HE be the responsible doctor to advise her on the open lesions and the skin?

She says she feels like she's suffocating with the skin getting tighter and tighter, pressing against her trachea, and the same skin changes are now going up on her neck. She panics whenever she has a visual image of her entire neck becoming hardened like her chest and suffocating to death.

Any advice you can share on how to help her?

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Sep 9, 2020 10:27PM moth wrote:

Wound care is a specialized field, separate from other specialties. Registered nurses can get post grad certified in wound care. I think getting a wound care center/wound care nurses involved is probably the best plan.
Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Sep 10, 2020 02:55PM MinusTwo wrote:

I agree. It was a wound care center who accurately diagnosed my lymphadema in the first place. Sounds like exactly what's needed.

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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Sep 11, 2020 04:16AM flashlight wrote:

Hi Poppy99, It sounds like her doctor has ruled out cellulitis and is worried about skin ulceration. Your SIL must be in stage 3 lymphedema and it is important she goes to the wound care center for treatment. They can treat these ulcers and help prevent fungal and staph infections. The larger the ulcers become the more difficult it is to treat and infection can spread throughout the body.

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 Surgery Lumpectomy: Left
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Sep 11, 2020 07:49AM Poppy99 wrote:

So they'll know what to do with wounds caused by MBC? I always thought they cared for burns and Diabetes...I am afraid that these wounds are cancer cells and wondered if they can even do anything about them. I'll check again. Thx!

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Sep 11, 2020 07:50AM Poppy99 wrote:

She has multiple issues going on her chest and Lymphedema is one of them. But I'm not sure if the wounds and lesions are from cancer itself or after effects of lymphedema. I'll check with wound care. Thx!

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Sep 11, 2020 08:01AM - edited 22 hours ago by Poppy99

The part I don't get is that she asked a few times about her wounds and only the last time when I urged her to ask gain, the nurse recommended going to the wound care center. She was discharged from the hospital 3 weeks ago (she went to the ER because she couldn't breathe and she was diagnosed with MBC) and he never addressed her wounds. The only thing he said was, that it'll take time for the drugs will work. I didn't pursue it further since she seems to trust the doctor implicitly. So I didn't bother again. But when she started complaining about the skin and the wound the day before she went to get bloodwork this week, I urged her to ask about it again.

I just feel like she's not getting the necessary attention she needs. He's a general hematology specialist and not a women's health or breast oncologist. And I don't know if the doctor is just going with what he can work with since she's inoperable, (she's refusing chemo and radiation so she's just on Letrozole and Ibrance) because she's going to die anyway?!?

So frustrating to watch her suffer but there's nothing I can do for her. Sorry for the long reply.

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Sep 11, 2020 08:17AM moth wrote:

Wound care nurses do deal with fungating tumors.

Your sil might still be able to have these surgically treated. Has she consulted a surgeon or is she refusing that as well? Wouldn't prolong life but would likely improve quality and comfort of life.

Fungating tumors require frequent dressing changes, wound debridement and packing It can be painful & it's time consuming.
Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Sep 11, 2020 08:17AM flashlight wrote:

I am sorry Poppy99 I read your post wrong. She is so lucky to have you as an advocate. You are saying she has MBC and did not seek treatment to have the breast cancer removed or is unable to at this time? Has she been seen by an oncologist breast surgeon? That might be the place to get a second opinion so that she would know what her options are, if you can get her to agree. Has her doctor suggested hospice?

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 Surgery Lumpectomy: Left
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Sep 11, 2020 09:07AM - edited 22 hours ago by Poppy99

This doctor is the only doctor she saw (at the hospital when she was admitted 3 weeks ago) and chose to go to him. I asked her if she wants second opinion but she thinks protocols are the same no matter where she goes. So when he said, the cancer is too widespread (has gone to chest walls, lymph nodes and lung) to operate, she thinks there's nothing anyone else can do. She's refusing chemo or radiation so she was happy that this doctor recommended these two drugs. I think she has a false sense of hope that these will work. But she's suffering with symptoms in the process. I feel like the drugs are not working as fast as her cancer cells to reduce the damage that's already done. We're seeing a lymphedema specialist today and I just set up a wound care appointment next week.

But shouldn't the doctor have already referred out for these two therapies when she was discharged 3 weeks ago or at least right after? They're experts so they should know what need to be done. It feels like we have to ask repeatedly for them to say, "Oh yea. You need to do this, and that."

Maybe I'm asking too much. I never had to go through this (THANK GOD) so I don't know what the right protocol is but she thinks there is nothing they can do. Either she's given up or maybe they already told her and she doesn't want to bother them again?

Either way, this is not how "I" would have managed this MBC.

Sorry, I'm just so frustrated.

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Sep 11, 2020 11:33AM flashlight wrote:

Poppy99, Sounds like they did the biopsies and MRI while she was admitted? Treatment can change with your doctor. I can understand your frustration. Hopefully there will be someone at the wound care appointment who might encourage her to get a second opinion. If not she should consider hospice. My daughter's mother in law is on hospice for ovarian cancer. It is wonderful.


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 Surgery Lumpectomy: Left
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Sep 11, 2020 12:28PM - edited Sep 11, 2020 12:29PM by bengallover77

Has she had any radiation? My mom has a large fungating ulcerative mass on her chest and breast and they are giving her pallative radiation for pain relief and to shrink up the mass. She has had 13 treatments so far and it is shrinking and bleeding alot less. I hope she can find some relief.

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Sep 11, 2020 12:43PM moth wrote:

there's a difference between curative and palliative surgery. Depending on the depth and location of the tumors, sometimes ones close to the skin can be excised - if there's enough healthy tissue around them to sew together. Again it wouldn't cure her - there is no cure for stage 4, it's just about buying time, controlling pain, promoting quality of life.

I'm glad she's seeing someone at wound care - they'll be able to assess and suggest what's possible.

It's too bad she won't consider chemo. It sounds to me too advanced for hormonal therapy to knock it down and, as I said above, buy time. It sounds like she's not buying very much time.... so yeah, I'd suggest she need a referral to a palliative team as well :(

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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Sep 23, 2020 08:13PM JavaJana wrote:

Poppy99, how is your SIL doing? I hope she is getting some relief

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/18/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Hormonal Therapy 8/12/2020 Femara (letrozole)
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Sep 24, 2020 06:48PM MinusTwo wrote:

Yes - I'd like to know too. Did she go to the Wound Care Doc? Were they at least able to help with cleaning & bandaging &/or whatever?

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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23 hours ago - edited 22 hours ago by Poppy99

Thanks everyone.

I had to call 911, ironically, on 9/11 because she was so breathless, she was panting. She was in agony and I called her MO's office and they told me to call 911. I usually drain her lungs on Fridays but she sounded like something else was going on so instead of doing my usual drain that day, her MO's nurse thought she needed a thorough work up at the ER. It turned out to be just fluid build up and nothing else showed up on CT scan so they discharged her. But the actual problem was the tough fibrotic tissues getting harder and infiltrating the area near the trachea that she didn't find any comfortable position for her to breathe. So she was panicking and hyperventilating so often throughout the morning. That problem is still ongoing and getting worse.

But as far as her wound care is concerned, when I took her to the center, they told her they couldn't really do anything other than put a vaseline dressing over the oozing nipple area with gauze since the pus is from cancer cells. And she can put vaseline in other dry areas. But that's basically it. I felt so devastated for her because she was looking for relief but once again, the solution wasn't available since the cause is cancer.

Lymphatic therapy was similar. Her Lymphedema is so extensive that the therapist said that she can do all the massages in the world but there's no system for the drainage to drain to since they are all cancerous. It was a devastating blow since she was so looking forward to having the drainage done to alleviate the edema.

I'm wondering how she is still functioning with all these symptoms....and disappointments. :(

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20 hours ago AliceBastable wrote:

I'm so sorry she is going through this, and all of her caregivers, too. Gentle hugs to all.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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9 hours ago JavaJana wrote:

I'm so sorry to hear they couldn't offer more for your SIL. Prayers for you both Medicating

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/18/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Hormonal Therapy 8/12/2020 Femara (letrozole)

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