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Topic: Mom Newly Diagnosed, Help Translating?

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: Dec 27, 2019 09:56PM

Care4MoIVCancer wrote:

Hi all, my mother was dx this week with IV cancer. It is in her spine, liver and lungs. She previously had treatment for breast cancer in 2014 and they are currently under the assumption until biopsies are done that it is the breast cancer that spread. Can someone please help explain “how bad” the following CT report results are? I mean, I know it is bad, but I am trying to understand how bad... since so far with the holidays we aren’t getting appointments for another 1.5 weeks.
my brothers aren’t getting the severity of this. I can’t figure out if we should hope for months, years or something else?

In her liver there are innumerable modes/masses ranging from 3.6 - .3 cm. In her lungs she has 20 and the largest is 3.7 with about 5 others they noted measurements on. They only noted the occurrence in the spine and what vertebrae, but no further details.

This is so confusing because other than what she thought was just a cough and low appetite, she didn’t think anything was wrong. Please can someone help? Even if it is really bad news, I want to know so I can help her. I will keep pushing to move up the appointments as well.


thanks in advance, Caring for Mom in D

Caregiver to Mom Stage IV
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Dec 28, 2019 01:48AM xxyzed wrote:

It isn’t really a “how bad” thing. How bad it is depends entirely on how your mum responds to treatment. If it doesn’t respond and continues to spread it is really bad. If treatment is effective and controls or reduces the tumours then it is not really bad. You won’t know until treatment commences and it has had time to be effective.
Dx 5/17/2016, DCIS/IDC, Left, 1cm, Grade 3, HER2+ (IHC) Surgery 5/31/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Dx 6/9/2016, DCIS/IDC, Left, 4cm, Stage IIIC, Grade 2, 20/20 nodes, ER-/PR-, HER2+ (DUAL) Chemotherapy 7/7/2016 AC + T (Taxol) Radiation Therapy 11/20/2016 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 9/26/2017 Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Nerlynx
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Dec 28, 2019 07:53PM Care4MoIVCancer wrote:

That is really helpful to know. I completely appreciate that everyone and their journey is unique. Not a comparison, but in struggling with infertility there was “no typical” and no one solution for everyone. Was just hoping someone could tell me more about her results. It gives me hope that regardless it may be that she could have a cancer more responsive to treatment.

Thanks for any other thoughts from the community!

Caregiver to Mom Stage IV
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Dec 29, 2019 06:10AM likestobike wrote:

Care4Mo-

I'm so sorry to hear about your mom. My mom was diagnosed w/ stage IV breast cancer 4 years ago. In the beginning it's so overwhelming with emotion and information overload.

I would try and get the biopsy scheduled ASAP as well as a liquid biopsy with results being sent to Foundation One or Guardiant 360. The liquid biopsy can be performed as part of a blood test and you dont' have to wait for them to schedule the actual tumor biopsy procedure. My mom had a liver biopsy performed when her cancer spread to her liver and the wait was hard - waiting to schedule the procedure and then waiting for the results to come back.

Once the results come back, then you'll know more about what type of cancer your mom has, usually 1 of 3 types: HR+, HER2+, or triple negative.

I would recommend Frankly Speaking about Cancer, Metastatic Breast Cancer booklets https://orders.cancersupportcommunity.org/?_ga=2.190013931.1145271115.1577627672-425062318.1577627672 They do a good job explaining various treatment options, and questions to ask the doctor. Check out all their pdfs related to Metastatic Breast Cancer.

Also, I have found the Living Beyond Breast Cancer site helpful. They have a Metasstic Breast Conference every year in April, along with other webinars you can watch. https://www.lbbc.org/

I hope this is helpul. I wish someone would have explained more of this to me in the beginning when my mom was diagnosed.

-Andrea

daughter to a wonderful mom living w/ MBC. Feb 2019: Foundation One Liquid Biopsy results: ESR1, PIK3CA mutations. Dx 10/15/2015, Left, Stage IV, metastasized to bone, ER+/PR+, HER2- (FISH) Hormonal Therapy 12/1/2015 Arimidex (anastrozole) Dx 6/1/2018, Stage IV, metastasized to liver/lungs Targeted Therapy 6/14/2018 Ibrance (palbociclib) Hormonal Therapy 6/15/2018 Faslodex (fulvestrant) Targeted Therapy 4/1/2019 Piqray (alpelisib) Chemotherapy 6/1/2019 Xeloda (capecitabine) Chemotherapy 6/1/2020 Taxol (paclitaxel) Chemotherapy 7/1/2021 Halaven (eribulin) Dx 7/28/2021, Stage IV, metastasized to brain Radiation Therapy 8/1/2021 External: Brain
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Dec 30, 2019 06:13PM Care4MoIVCancer wrote:

Thanks, I ordered the booklets! I think this will help my brothers in particular. All the best for you and your mom, likestobike.

Mom’s biopsy is 1/7 and meeting with the medical oncologist is 1/9. Don’t know if I will go insane from the waiting between now and then.

For some reason I am expecting the worst. I don’t know why, I just feel like they are going to put things in terms of months vs years. Why am I thinking this? I am usually the positive one. All my brothers seem to think that this will be simple and like last time, she’ll get through it without too much impact on them again.

Sorry, just venting now.

Caregiver to Mom Stage IV
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Dec 30, 2019 07:41PM - edited Dec 31, 2019 03:32PM by thisiknow

Care4... you are an angel. Your brothers are believing what they want to believe, protecting themselves for a time. From your description things do look serious. Who really knows. But chin up anyway... you'll find all the support and comfort you need right here. There is also a Radiologist here that helps folks interpret their reports if you need him. Just keep us posted. And ((hugs)).

Age 72 @dx - Oncotype 4 & 15 Dx 7/14/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/9/2019 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 10/27/2019 Whole-breast: Breast Hormonal Therapy 12/17/2019 Arimidex (anastrozole)
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Dec 30, 2019 10:45PM Scott1975 wrote:

Care4mo..... I completely understand what you are going through. It was the same for me when my wife found her lump. The time from when she found it up until she got scans was so chaotic. Then, when results showed cancer, crap my heart hit the floor and my mind went right to panic mode. I watched way to much TV and jumped to so many unrealistic conclusions only to find out her cancer dx. means we have a huge adjustment to make. I wanted the no nonsense, give it to me straight answers! The only answer I got was “ your wife has cancer and therapy starts soon.” When I found out there are no straight answers, only speculative, general, maybe, maybe not ranges, I felt scared.

We came to realize the Shelley and I have to show up to appointments, discuss her treatment, get a plan together, then just wait, I got frustrated. But this is more waiting than anything.
It didn’t occur to me that my wife getting diagnosed with stage iv breast cancer was going to flip our lives upside down, and I was only making a chaotic situation worse. When I slowed down and heard what my wife was telling me”it is going to be ok. We will focus on what we know! Got it!” I relaxed

This is in no way going to be easy for your mom, and all of you. You can make it easier by acting instead of reacting. This journey can and will be crazy. It turns on a dime and jerks all of us around.

The best thing that I learned about Shelley’s diagnosis and this road we found ourselves, was how to listen to her and hear what she needs. After all the dust cleared and we got through the chaos, we grew stronger, closer, and deeper.

You can get through this. It takes heart, and you showed you already have that. You have a start here. There are so many miraculous people on this site that have the experience to share with us how they do it. We learn from others how to get where they are.

My wife and I will pray for your mom, you and your family.

God’s got this!

Dx 3/24/2018, IDC, Right, 6cm+, Stage IIB, Grade 2, 11/20 nodes, ER+/PR+, HER2- (IHC) Surgery 4/5/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right Dx 5/20/2018, IDC, 1cm, Stage IV, metastasized to bone/liver, Grade 2, ER+/PR+, HER2- (IHC) Targeted Therapy 6/1/2018 Ibrance (palbociclib) Surgery 6/16/2018 Reconstruction (left); Reconstruction (right) Chemotherapy 9/30/2018 Abraxane (albumin-bound or nab-paclitaxel) Surgery 3/28/2019 Prophylactic ovary removal Targeted Therapy 6/15/2019 Afinitor (everolimus) Targeted Therapy 10/20/2019 Dx 12/22/2019, Stage IV, metastasized to brain Radiation Therapy 12/27/2019 External: Brain Dx 1/21/2020, IDC, Right, Stage IV, metastasized to brain/bone/liver, Grade 3, ER-/PR-, HER2-

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