My heart is breaking for my mom

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SmileyCat
SmileyCat Member Posts: 2
edited July 2015 in HER2+ (Positive) Breast Cancer

Not sure where to start but every day has been very hard for me since my mom was diagnosed of breast cancer 3 weeks ago.

I am Chinese, but I work and live in the US. My mom is still in China and she just had right mastectomy 2 weeks ago. Her mon is 58, IDC 2.2cm, 9/22 node positive, vascular involvement, ER+(<10%), PR-, and HER2 +++. All doctors (in China, looks like we don't have specialized oncologists, surgeons etc. in most hospitals, we just called them doctors), including the doctors we get second opinions from all said "it is looking very bad, recurrence rates will be very very high for her case (70% plus)…..." Every time when a piece of new lab results comes in, such as Her2+, node positive, vascular involvement… no matter how I have prepared for it, it hit me, and it hit me hard. My poor dad is not handling very well, and he doesn't want my mom to suffer. I told myself to be strong for them, but I am also devastated and have hard time sleeping, eating, and concentrating at work and life at the moment.

The other day my dad told me my mom said "if it is really bad and not worth treating, let's not do it so at least we can save money…" (btw, 90% of chemo, radiation, and ALL Herceptin won't be covered by insurance, which means all treatment will cost A LOT OF money, 8-10 times average annual household income in China). My heart was breaking for my mom, and I cried my eyes out.

We convinced her to stay on treatment eventually. We will fight it no matter how much it is going to take, financially or logistically. We are pulling all resources we can, I will get second opinions from oncologist here (I am in Boston area), I will try to get mom in the states once I can apply green card for her hopefully next year. We just need to go through this dark dark period. However, let me be honest, I am so SCARED and WORRIED. I am worried my mom won't get the quality treatment over there, I am sick and afraid of all the "not promising" and "it is looking very bad" tones from doctors over and over again. I am worried about my dad as he is also not in good health and he has to deal with a lot emotionally. I am doing tons of research myself, but I am scared to death to see and analyze all the statistics.

I need some hope.

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited March 2015

    I know exactly how you feel. The initial shock of a diagnoses is torture. All of the questions, The "what ifs" , the fear, the uncertainty ...it is a traumatic experience for everyone involved. I'm so sorry that you and your family are going through this, I wouldn't wish it on anyone. However, what I can tell you is that there is always hope. As your mom continues to meet with doctors, her treatment plan will unfold. She most likely will need chemotherapy along with Herceptin and Perjeta ( these are both targeted meds for HER2 cancer) and radiation. Please know that there is treatment for your mom, her case is NOT hopeless. I'm glad you found this site, I think it's one of the best for offering the most up to date information. That being said, try to limit your internet searches on your moms cancer . Unfortunately most of the data in inaccurate, based on old stats, not updated etc. I'm so sorry that you and your mom are not together. It is frustrating to know that your mom has so many limitations with her insurance. The best thing you can do is get a second opinion, solidify your moms treatment plan and keep her informed. The more she knows will only empower her and your dad. Your mom can get through this, many women on these boards have and are doing well. Sending you prayers....

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  • SmileyCat
    SmileyCat Member Posts: 2
    edited March 2015

    Thank you Girlstrong! I am feeling a little better overall, and I need to be strong for my parents.

    Perjeta is not available in China so it is not an option. My mom is going to start chemo very soon, but her transaminase is higher than what chemo treatment allows. I am worried about that and we will see what can bring it down.

    My mom's chemo plan is AC*4, and TH*4 - I wondered would TCH be better, as the sooner my mom can use Herceptin, the better? - is it true? especially for Stage III patients?


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  • wbird
    wbird Member Posts: 7
    edited April 2015

    SmileyCat, gosh my heart goes out to you. Would love to hear how things are going for your Mom.

    My mom is also overseas right now (lack on medical insurance stateside) and just got diagnosed with ER+ PR+ HER2+ breast cancer. Her masectomy was earlier this week. We're trying to figure out if we can get her Herceptin state side without having to go through all the DX again here. Dad's health is just so-so, and I don't think he can handle her being overseas for a year.

    I don't think this applies to my mom, since she's ER+ & PR+. However, if you can get yours stateside, I found that this might be of help to you:

    http://www.genentech-access.com/herceptin/patients...

    Best of luck!

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  • Moraz58
    Moraz58 Member Posts: 1
    edited April 2015

    Hi SmileyCat, I'm new to this all also. My mom was just diagnosed on 03/30/2015 and I've gone through similar emotions like yours. Since that day I've been by her side trying to help anyway possible. I've noticed that just by me supporting her and helping keep her going she's getting a stronger mind set going into this. I think you being strong for your parents is the best thing you can do. It's so hard to not want to break down but I keep telling myself the second I do that she will do that. My mom is stage I/ HER2+ just had a lumpectomy but the margins weren't clear so in the next 8 hrs we need to decide if she wants to try lumpectomy again or go for mastectomy. I just keep supporting her in every decision she wants to make just like you're doing. That is horrible the cost in China but keep encouraging her to keep going. Let her know that she is not worth giving up on. One thing I've told my mom is this is our breast cancer, you're not in this alone I need you to fight for us and she smiled and said you're right. I'm here to chat if you ever need someone to chat with. I feel better even writing this I haven't been able to talk with someone going through similar situation who knows how I'm feeling. =)

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  • HelloDearMom
    HelloDearMom Member Posts: 1
    edited July 2015

    Hi Dear SimileyCat,

    I registered an account after seeing your post. I can't agree more on your feelings because I am encountering the same.

    My mom was diagnosed with Stage IIA, Grade 3 breast cancer with ER-/PR-/HER2+.

    I have struggled a lot if I shall send my mom back home (Shenzhen, China) but I since I am here in Canada so I decided to let her stay with me. I don't have PR status yet, so I have to be financially prepared for an enormous amount of expenses. Although I always believe in myself a big women, I can't help crying a lot when I am alone - usually late in the night or during my lunch break. Anyway, I met some nice people here, they are trying the best to help. My surgeon is an excellent human being and her secretary was also extremely helpful. My boss is always providing extra accommodation for my mom's special condition. All these lovely people are my biggest supports whenever I am in need.

    Right now I am giving the best attempt to look for a second opinion. Potentially a third opinion. I want to transfer my mom from Trillium Hospital Mississauga to other bigger hospitals in Toronto. It is okay in the beginning when no one is willing to hear from you. It is hard to have a say in a foreign country. (We had really unpleasant experience seeing our first medical oncologist, he was sloppy in delivering his treatment plan. He treated my mom like shit. He asked us to think of the money, wtf that is none of this business. We went home with three broken hearts. So far his nurse hasn't replied to all my messages.) My mom she need to go through chemotherapy now, so it is a painstaking process. If anyone has any experience in this, please don't hesitate to contact me. Thanks a million.

    I think something I learn: the squeaky wheel always gets oiled first. You have to be strong in order to support your family members. You have to be protective for your family through all the available solutions. Talk, communicate, consult different people. And hopefully the god won't shut all your doors.

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