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Topic: Start treatment ASAP or get 2nd opinion for my mom?

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Jan 22, 2020 11:38PM

pugzilla101 wrote:

My mother was just diagnosed (21 Jan 2020) with Stage IV Metastatic Breast Cancer. She is 57 years old. The cancer is in her right breast and spread to her right lung and lymph nodes in her chest. The breast cancer is triple negative and this is her second diagnosis of breast cancer. Her first diagnosis in February 2017 was Stage 2B Triple Negative Breast Cancer also in her right breast. She went through chemo, a mastectomy, radiation, and was cancer free for two years.

I am utterly devastated to hear the news and the doctor estimates she has 5 months left. The doctor is running an additional test for the cancer, that if it comes back positive, can provide a better outlook on chemo options. If it comes back negative, then things don't look as good. I apologize if I don't have all the details yet to make the diagnosis more precise, I'm sure I'll learn more over the coming days. I'm in the Air Force and stationed in Texas while my mother lives in Missouri. I'm making arrangements to see her ASAP and ask a bunch of questions with her doctor.

I'm struggling to cope with the news as my mind races from the shocking poor prognosis and how this all happened so quickly. She had a mammogram back in July 2019 and they found nothing. It blows my mind how it went from nothing to Stage IV mets in 6 months. My mother is being cared for by my step-dad who is doing his best to make my mother as comfortable as possible.

My main question comes in my search for hope and options to get more time with my mom. Is it more important to start chemo treatment ASAP or should we get a second opinion in the hopes of access to more chemo/clinical trials? I read posts about people with stage IV mets having a poor prognosis but getting great responses to chemo and living years longer than expected. My mom should begin chemo treatment next week at the University of Kansas Cancer Center.

I live in San Antonio, Texas and wonder if MD Anderson in Houston (or San Antonio) would be a better option for her. Would it be worth the time to get her seen at MD Anderson? I have no idea how long it would take for them to diagnose her, let alone if they have access to better options for her. I fear that taking the time to get another opinion would allow her cancer to get worse as opposed to getting her treatment right away near home.

I want to explore any options to get more time with my mom and improve her chances to survive. So I'm reaching out to the community to learn from other people's experiences. I would regret leaving any stone unturned as I struggle with this news.

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Jan 23, 2020 01:33AM SondraF wrote:

I'll let the ladies who have had prior breast cancer, triple negative, longer time at IV, and/or are treated at MD Anderson to provide the substantial advice, but since I am in a different time zone and awake I wanted to reassure you - I was diagnosed as stage IV about four months ago and probably had mets for some months prior to that. I am here, I go to work, go out with friends and around town, and other than some bone issues (that are being resolved), more or less look and feel fine. My doctors have never given me a 'how long' timeline either because there are so many factors that go into longevity while living with this crap disease.

When first diagnosed I too thought that was it, this was like pancreatic cancer and I had less than a year or something. Its not at all. Now, your mom may have other health issues going on, but assuming its all breast cancer then the MO declaration seems a bit much.

Im still totally a newbie at all this - there are ladies on here with years under their belt that will be able to give all sorts of great advice and the information you are looking for. Guessing they should all be around in about 8-12 hours :) But I remember how it feels to want answers or hope and to toss up a post into the void hoping for both. Members here helped me, so I hope in a way this message can help tide you over for a few hours (and maybe get some sleep!).

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole) Surgery Prophylactic ovary removal
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Jan 23, 2020 03:02AM - edited Jan 23, 2020 03:03AM by ShetlandPony

Pugzilla, long-time BCO members generally say that posting the same question on two different threads can make it more difficult for members to respond to you, follow you, and converse with you. I see you are already getting responses on your other thread. You might want to choose just one. But I get the desperation and panic that prompts multiple postings! Please take care of yourself. And take to heart the comfort Sondra has sent to you.

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
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Jan 23, 2020 09:53AM pugzilla101 wrote:

Thank you for the kind responses. Admittedly I am doing all I can in panic of getting her the best possible care. Made some oopsies with the duplicate post so please refer to that one for the latest discussion.

The information on the timeline and her specific diagnosis details are what she's telling me. I have a ton of questions for the Doctor and I'm sure there are things getting lost in translation as my mom hears all this news. The encouragement on my posts has been incredible and eye open in the opening hours, and I have a whole new grasp of hope on what her options are!


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Jan 24, 2020 02:37PM Husband11 wrote:

I would think that starting chemo while looking for suitable clinical trials would be what I would do. It sounds like its a fast growing cancer, and starting treatment sooner rather than later makes sense to me. Fast growing cancers are typically more responsive to conventional (anti-mitotic) chemo. Forget about statistics for life span, as every individual is unique. I would also consider looking into the COC protocol, which is administered by oncologists and can be used along side conventional treatment, and has very few side effects. Google COC protocol and they have a web site with details on what its all about (re-purposed, low risk, prescription drugs) and how to get into it. It has some prospect of improving the results you get with a conventional treatment.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Jan 25, 2020 05:51PM pugzilla101 wrote:

Husband11,

Her cancer is triple negative which I understand is the most aggressive and resistant subtype of breast cancer. Her previous diagnosis in 2017 with Stage IIb was also triple negative.

The COC protocol has peaked my interest and I'm actually looking into it as she learns about her chemo options (which she has yet to start). Are you following the COC protocol? What are the challenges to getting started? What are the costs?

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Jan 27, 2020 12:35PM Husband11 wrote:

My wife is doing the COC protocol. It costs around $800 for the initial consultation with their Doctor and then they give you a three month prescription for the drugs. The drugs are fairly cheap, but I think the method of provision of the drugs is evolving. Here in Canada, we got a prescription only. So my wife submitted the prescription and got the drugs paid for by insurance. In the US, they may be delivering the actual drugs instead of a prescription, but you would have to look into it. They are all oral pills and cause next to no side effects for most patients.

Concerned husband Dx 2008, Left, Stage IIIB, Grade 3, 7/14 nodes, ER+/PR+, HER2- Dx 5/2016, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy Xeloda (capecitabine) Targeted Therapy Ibrance (palbociclib) Chemotherapy Hormonal Therapy Femara (letrozole)
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Jan 27, 2020 10:51PM illimae wrote:

Why any doctor would still give an estimate of time is beyond me. There are way too many variables. I go to MDA in Houston, she could have a diagnosis and treatment plan in a day or too. I’d go for a second opinion anywhere, if the current MO seems to dismiss things like, hope, trials, tumor burden, etc. Good luck :)

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)

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