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In search of support after my mom's recent MBC diagnosis.

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Hello everyone,

Part of this is going to be me venting but also I have some questions if anyone is able to answer them. My mom was diagnosed with breast cancer for a 3rd time at the end of May, this time triple negative metastatic at the age of 57. She experienced a large pleural effusion in one of her lungs and the fluid that was extracted tested positive for breast cancer cells. A few weeks later she had 3900 mL of fluid (ascites) extracted from her abdomen in which that fluid also tested positive for breast cancer cells. Most recently she was in the hospital for 4 days after her right and left lungs started to fill up again with fluid. The hospital was able to drain the right lung but not the left as there was a possibility it could be perforated in the process. She is beginning her oral chemo (Xeloda) regimen today and was told it should dry out and prevent the fluid from accumulating again.

When she met with her new oncologist in June, she told my mom she had "a few years" to live without my mom even asking for a prognosis. When she told me this I became irate. Why would she say such a thing unprompted? My mom did not ask for a prognosis. Aren't doctors supposed to be positive and encouraging for their patients? I understand being realistic and not wanting to give false hope but at the same time, patients that have an overall positive outlook on their condition often live longer from what I understand (as I read in "Radical Remission" by Dr. Kelly A. Turner).

Honestly, I believe she needs a second or third opinion with something as life threatening as metastatic breast cancer. She adored her previous oncologist but can no longer see him because his office no longer accepts patients without insurance. She had an appointment with an insurance broker this week but missed it due to being in the hospital. Once she is feeling better she will reschedule and I pray she is able to afford some quality health insurance so she can get the care she deserves.

We live on separate sides of the country but she thankfully has a great support system of friends. In the times I can't be there with her I am doing my best to research any complementary treatments that could help her alongside the conventional treatments. I want to do everything I can to help throw everything possible at this so she can continue to live a relatively normal life; I understand there is no current "cure" for MBC but I have read of many women living 10+ years after their diagnosis. "Radical Remission" has given me some hope after I consulted Dr. Google and read devastating statistics for people who have malignant ascites & malignant pleural effusions. I just haven't seen a lot of people share their own experience with either of those things and am hoping someone reading this is able to share their experience.

Edit: I forgot to add…her PET scan and brain MRI did not show any tumors! Her oncologist even mentioned being bummed there weren't any tumors to test…(again, horrible bed side manner!)

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
    edited July 5
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    cityofangels16,

    I am so sorry your mother and your family are going through this difficult time.
    I am a big proponent of second opinions as they are very helpful in easing one’s mind when you feel doubts, or at least concerns, about a diagnosis and proposed treatment.
    Yes, doctors should be encouraging but realistic. Doctors are people too and have different personalities and approaches when dealing with patients, especially something as serious as mbc. That being said, no one knows how long we have and it bothers me too when doctors declare an expiration. No one has a crystal ball!
    I read Radical Remission long ago. I understand that attitude may help with longer survival, and it certainly makes day to day life easier, but overall, stage IV bc is life limiting for most of us. Don’t get me wrong, a positive outlook makes life easier but it’s not dependable as a strategy to stave off progression.
    I say this as someone who has had 13 progression free years since my initial tx for mbc. I will also say that I am an outlier/exceptional responder and very far from typical. Why this is is unknown but I have never attributed my longevity to a positive attitude as I have known many more positive than I am who gained no life extending benefit. Again, it makes life easier so it’s worth cultivating. I want you to have some optimism about your mom’s situation but understand what the reality is for most of us with mbc. I really think a second opinion would help your mom understand her situation and ease your minds. Take care

    -Sorry that I have no suggestions on the insurance issue.

  • seeq
    seeq Member Posts: 1,132
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    @cityofangels16 - when I was first diagnosed 4 years ago, my doctor told me to think in terms of years, not months...which I took as a really good thing because everything I read on Google said I'd be dead within a year. Fortunately, "Dr Google" doesn't keep up with the results of changing treatments too well and was way off. Really, my point is that so many new treatments have come out in the last 7-8 years and more on the way that there's really no way to know which ones will work or for how long.

    I strongly recommend a second opinion - whether it's due diligence or for peace of mind. Is your mom distressed by her doctors bedside manner? If so, she might want to think about changing. If she likes the direct approach, this one might be the right one for her.

    You didn't say what type of triple negative breast cancer she has (IDC, ILC, or something else). There are several people here with ILC that traditional scans doesn't detect, but there's a newer option (FES PET) that works for them.

    I can't offer any thoughts on the insurance issue. I wonder if clinical trials are an option.

    Best of luck to you and your mom.

  • moderators
    moderators Posts: 8,287
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    Hi @cityofangels16, and welcome to Breastcancer.org.

    We're so very sorry to hear of your mom's diagnosis, and for all you're both going through right now, but we're so happy you've found us. As you can already see, our community is made up of some wonderful members always willing to offer information, advice, encouragement and support — we're all here for you and your mom!

    Great advice above about getting a second opinion. You can read more about that process here: https://www.breastcancer.org/treatment/second-opinion

    Also, you may find some helpful information about how to pay for care, including on how to manage without health insurance, here:

    https://www.breastcancer.org/managing-life/covering-cost-of-care

    Also, we wanted to offer to your mom to join, if she is interested, our weekly MBC Zoom meetups, where others with metastatic disease share about themselves, their treatments, struggles, and support one another. You can see all the days and times and register here:

    https://www.breastcancer.org/community/virtual-meetups#section-do-you-have-metastatic-breast-cancer-mbc-also-called-stage-iv

    We hope this helps and that you and your mom get the support you need. Please let us know how else we can help!

    —The Mods

  • jwayne
    jwayne Member Posts: 1
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    I would recommend your mother apply for Social Security Disability immediately. She will be eligible (in fact be required) to get Medicare in 24 months, and get SS payments now. If she has worked the required amount, she should be automatically qualified due to the Stage 4 cancer diagnosis, and quite quickly as well. Once she gets ready to enroll in Medicare, I highly suggest she does Not get an Advantage plan if she can in any way afford a Supplement (G) as that will give her the best coverage. The insurance brokers in my experience were Not knowledgeable about this, and if you don't get one at the time you first get Medicare your options are limited later. That's a whole other discussion for later. (However, depending on her current employment status, current benefits such as LTD and retirement, etc. that may not be her best or only option, but I'm assuming she has no benefits currently since you mentioned she's looking for medical insurance.) I'm sorry you both are dealing with this

  • cityofangels16
    cityofangels16 Member Posts: 6
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    @exbrnxgrl Thank you for your message. I didn't mean to say a positive attitude can stave off progression but meant as you said a positive outlook makes like easier. My mom is naturally an optimistic person but I can tell in her voice and her body language that she is terrified which then makes me terrified. I don't want her to know that I feel that way though. I want to be as much of a ray of sunshine for her as I possibly can. She started Xeloda today and I know she has been nervous about starting it because of side effects but I am just glad she is starting treatment. I want to bring up getting a second opinion with her but she just got home from the hospital yesterday so I don't think now is the right time. I don't want to overwhelm her but also feel the sooner the better on all of this.

  • cityofangels16
    cityofangels16 Member Posts: 6
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    @seeq Thank you for your comment. That is something I learned recently, do not rely on Google results for statistics as they are not current with the new treatment options that continue to come out. The fact that there continue to be new and more better working treatments gives me hope for my mom and all of the women out there with MBC.

    I think a second opinion is very needed for both due diligence and peace of mind. My mom is absolutely distressed by her oncologist's bedside manner. Her previous oncologist was realistic but he was also very positive and encouraging. Her new oncologist not so much which is why I believe we need to find her a new one or get her appropriate coverage so she can see her previous one.

    She has ILC. This is her current diagnosis:

    • 5/2024 Metastatic breast cancer to right pleura (HCC),
    • Cytology from large right pleural effusion on 5/2024 consistent with lobular breast cancer, hormone triple negative (ER 3%, PR 4%, HER 1+ negative), HER2 Overexpression Analysis (IHC): 0,  HER2 Amplification Analysis (FISH): 0.95, AFP tumor marker: 3.3
    • 6/2024 Malignant ascites, 3900 mL removed,  (ER+, PR+, HER-2 Negative), Her2 Overexpression Analysis (IHC): 1+, HER2 Amplification Analysis (FISH): 1.09, no other areas of involvement per PET scan and MRI

    I have not heard of the FES PET but will definitely mention it to her for her next oncologist appointment as well as any clinical trials she may be able to take part in.

    Thank you for your help <3

  • cityofangels16
    cityofangels16 Member Posts: 6
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    @moderators Thank you for sharing all of those resources. I am so grateful this community exists and for all of its resources. <3

  • cityofangels16
    cityofangels16 Member Posts: 6
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    @jwayne As of right now my mom wants to continue to work as much as she can; she loves her job and her employer is very understanding and is willing to work with her. Regardless, I don't believe she has worked the required amount to qualify for full disability. What she would be eligible for is not enough for her to live on. Thank you for sharing that information though, I will definitely save that information.

  • seeq
    seeq Member Posts: 1,132
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    @cityofangels16 I'm tagging @kbl because she's more knowledgeable about FES PET (and everything ILC) than I am. I'm sure she'll comment when she can.

  • cityofangels16
    cityofangels16 Member Posts: 6
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    @seeq Thank you so much ♥️

  • kbl
    kbl Member Posts: 2,796
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    Thank you @seeq.

    Hi, @cityofangels16 I’m so sorry your mom and also you are going through this. As far as the FES PET, the problem I see is that your mom is triple negative. I’m not sure anything would be picked up by the FES PET, as it shows when you are estrogen positive. It uses an estrogen tracer. There are no scans that work for me, except the MRI of the spine. All of the other scans, CT, FDG PET, and bone scan see none of my cancer, and I’m loaded. I also have it in my stomach, and an endoscopy is the only thing that found it.

    It’s pretty rare to be triple negative with lobular, so it may be beyond my knowledge, but you may want to go to the Lobular Breast Cancer Alliance website. They have a lot of great information. Dr Mouhabbi at MD Anderson is a lobular specialist in Texas.

    One other thing. For my cancer, tumor markers work for me. I get the CA15-3, CA27-29, CA125, because it’s in my stomach, and you may also ask for the CEA. I would request a baseline of these markers. They don’t work for everyone, so if your mom is in the normal range, that would mean they most likely will not work for her. I count on them heavily for progression since the scans don’t work.

    Please feel free to message me anytime. I’ve had lobular to all bone and bone marrow since 2013 with spread to my stomach in 2018. I was on Xeloda for a little while. Please ask your mom to watch folic acid intake. It can cause worsening hand and foot syndrome. Also, I was a blubbering crying mess for the first few months for no reason. Udderly smooth with 20% urea is good for some moisture on hands and feet as well.

    One other thing. I was diagnosed de novo with a missed diagnosis for six years with no treatment. They’ve also never found the cancer in my breasts.

    I am hoping the Xeloda kicks ass for your mom. Please keep me posted.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
    edited July 5
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    cityofangels (Are you in LA?),

    I’m so glad my comment wasn’t confusing. As you can see, second opinions are something many of us value. In my own case, I loved my mo and had complete faith in her proposed tx plan, but I just felt more comfortable having someone else confirm what my mo was recommending. As I mentioned, doctors come with a wide assortment of personalities with respect to how they deal with patients. Sounds as if she might need a different mo whose personal style meshes better with her.

    On the topic of work. Though I was stage IV de novo, I never considered going on disability because I felt fully capable of doing my job, which I loved*. I worked until I was 65, ten years after my dx, and retired as planned. I was a teacher and still sub for my former district about 2-3 days a week. If your mom likes her job and is capable of doing it, working has many benefits. Not just financially, but in terms of maintaining some semblance of normalcy . However, we all differ in how we view this.
    You know your mom. While I understand your wanting to be a ray of sunshine in her life (I can tell you already are!) , I hope your optimism is still grounded in reality, even when speaking to her. My own daughters have been wonderful but they never tried to soft soap my situation and I very much appreciated that. I am an adult and I am ok with truths, even if they’re unpleasant but… that is me. You know her best and I’m sure your approach will reflect that. Take care

    *I know some say that stage IV is automatically approved for SS disability but I never looked into it. I guess it seems possible but I, for instance, am in no way disabled despite mbc and can’t imagine any doctor stating I was. I could be totally wrong about all of this so a call to SS should yield the correct answer.

  • kbl
    kbl Member Posts: 2,796
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    The SSDI for Stage IV is called compassionate allowance. I’m so glad you could continue to work, @exbrnxgrl. I made it a year after diagnosis, and because of Covid, my work became overwhelming. I was a closed captioner for the hearing impaired, and the workload was more than I could handle. The fatigue from the drugs and the pain from the cancer was too much. I also have it in my stomach, which caused all sorts of issues. I give great credit to those who continue to work, but I’m also grateful SSDI is there for those who need it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    The work issue is interesting as stage IV covers a wide swath of health possibilities. For those who can return to work, it can be a step toward “normalcy “ (whatever that means 🤷🏻‍♀️). It’s wonderful to have options as ones health allows.