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De Novo Metastatic

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Lost47
Lost47 Member Posts: 20

Hello, I’m new to blogging and to breast cancer. I’m overwhelmed by the speed of my diagnosis, even my doctors are shocked. November of last year I learned from biopsy and mammogram that I had Stage 1 A breast cancer. The tumor in the left breast was < 2 cm invasive ductal carcinoma grade 2. I was scheduled for bilateral mastectomy and expanders to begin reconstruction. My surgeon said she always does a sentinel biopsy even though nothing was noted by physical exam or mammogram/ ultrasound in lymph nodes.
My surgery was supposed to be December 28 but it was postponed due to one of the surgeons having Covid. I had the surgery January 12 of this year. Surgery went well. My biopsy results showed actually 2 tumors in the left breast and both lymph nodes that were removed had breast cancer expanding outside the nodes. The oncology breast surgeon was shocked and had ordered a Bone scan and CT of Abd/chest pelvis. The abdominal CT showed 2 lesions and was recommended for MRI. The bone scan had lit up over left forearm, X-ray completed due to recommendation of bone scan. X-ray recommended MRI of left forearm. I had to have expanders removed February 10 to have the MRI. The MRI of abdomen stated multiple metastatic lesions to liver. The forearm was benign. I had a liver biopsy last week Wednesday, which confirmed the MRI. Went from Stage 1 to Stage 4 in 3 months. Sorry, for the long story. I’m just lost.

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  • moth
    moth Member Posts: 3,293
    edited February 2021
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    Hi, welcome & sorry you find yourself here.

    I never really know whether de novo is worse or thinking you're done with early stage & sent on your way only to be slapped down again.. they both really suck.

    Anywyay, glad you're here. We have tons of info and support. You might want to check out the de novo thread https://community.breastcancer.org/forum/8/topics/...

    as well as the liver mets thread https://community.breastcancer.org/forum/8/topics/...

    Your hormone markers will drive a lot of your treatment options now. What type of breast cancer do you have?


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,066
    edited February 2021
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    Hi Lost47,

    I am so sorry that you find yourself here. This is probably the most difficult time. My story is slightly different but I was thought to be stage IIB after surgery but within 6 weeks my bone met was found on an unrelated PET scan. The reality is that I was never IIB as the met had been there all along and I never missed a mammogram either. It is indeed shocking but it does happen.

    Check out our liver mets threads and our de novo threads. It may not feel like it now, but you will wrap your head around it with time. Take care

    https://community.breastcancer.org/forum/8/topics/809420?page=528#idx_15811

    https://community.breastcancer.org/forum/8/topics/876918?page=20#idx_587



  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello Moth,

    Thank you for the threads. I have Invasive ductal carcinoma ER/PR +, HER2 - Stage 4 Mets to liver. From your breast history it sounds like you have been through a lot. I’m trying to determine what I should/need to do about working. I’m supposed to start Ibrance and hormone therapy. My oncologist is concerned about infections due to the neutropenia from the Ibrance. Did you continue to work

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello exbrnxgrl,

    Thank you for posting your story. I appreciate all the links to threads. I’m trying to soak up all the information I can. My poor mom was concerned about my mortality. My whole family treats me like I have months to live. Im learning and educating them in the process.

  • moth
    moth Member Posts: 3,293
    edited February 2021
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    Lost, I was in full time school when diagnosed with Stage 4, and had to quit the program. I was quite ill at the beginning - needing albumin transfusions and blood transfusions and just overall very unstable. I'm better now but I'm glad to not be working & I don't think I'll return to school - though I'm technically still on sick leave - as I probably would never be able to work in my career and I don't know if I want to use up my last months/years in school, kwim?

    The mortality thing is weird - I know some people worry that I'm dying imminently and others think I'm not dying fast enough and others think that this can be beat. It's tedious explaining to them again and again that it can't be beat. It's terminal. How much time we get really varies so much from person to person. It can be so very unpredictable for each individual.

    If you're in the US, think one concern about work is health insurance. Many things to consider. Maybe don't rush into a decision? Some people get quite stable and are able to continue working. You can always quit later, kwim? Or go on temporary leave and make a permanent decision later?

    cancer + covid + some systemic treatments is not a good combo so that's an additional issue if you're not fully vaccinated yet

  • sondraf
    sondraf Member Posts: 1,631
    edited February 2021
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    Hi there Lost - sorry that you have had to join us but this is certainly the right place to be!

    The first couple of months getting your head around the situation is really intense and difficult, but it will get better, you will start treatment and get the hang of this. Ibrance/letrozole is a very easy combo for the majority of women - I've been on it a little over a year now and after a dosage adjustment at the start its been a pretty easy ride, its held my bone mets stable, and its shrunk my primary tumor almost 2cm at this point. I have no hair loss and walking down the street you would never ever know I had cancer.

    I've worked throughout including through diagnosis, sacral rads, a short hospital stay, and the start of treatment, and I don't really worry about neutropenia too much as my numbers don't really dip that low. That being said, I work a desk job and don't have to go into the office and still won't too much once the Covid restrictions are lifted. If you work a job where you are more exposed, that may be a different situation to consider. And if you do struggle with neutropenia, there are other CDK 4/6 class drugs where that is less of a problem (Verzenio).

    Are you post-menopausal? If not, usually the other half of the treatment plan includes zoladex to stop estrogen production, and then some sort of bone support like Xgeva.

    Unfortunately I think there is a lot of widespread confusion about cancer in general - lots of people know of lung or pancreatic or brain where its a diagnosis and then you are dead in six months or whatever. Or conversely they see a bunch of women running marathons while wearing pink socks every October and figure breast cancer is completely curable - they beat it so of course you will beat MBC! That or the alternative is too depressing to think about and lets face it, who keeps a store of comments handy for that situation?

    On the plus side, you had your primary and some troublesome nodes removed, and your bones aren't impacted and hadn't fractured or caused a lot of pain beforehand. How large is the lesion in your liver? Hormone therapy could clean that up real quick and you could be stable for quite some time with no evidence of active disease. We have had more than a few de novo ladies on these boards go 3+ years on Ibrance, one who is at 5 I think? and there are ladies from the original Ibrance trials still on the drug and that was 6 or 7 years ago. Youve got a moderate grade and your initial primary was small so you are sitting in about as good a spot as possible for MBC. Trust me, in a few months when all you have to do is pop two pills once a day and you are going about your life as normal you'll marvel at the wonders of science!

    Do come join us de novo ladies on the Stage IV de novo thread where we have all introduced ourselves or shared our stories and backgrounds. I do wonder if you wouldnt be considered oligometastatic as you only have liver involvement - are you at an NCI cancer center (if in the US)?

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello Moth,

    Thank you for responding to me again. Im an RN on a telemetry unit in the States. I work mainly with cardiac patients, but since Covid we have overflow patients either rule outs or positive. I work nights 36 hours a week. For me that’s 3- 12 hour shifts. I love my work as far as patient care but hospital bureaucracy makes me nuts. I know I’m just a number to them and can easily be replaced. I’m on leave, I start my medications this coming Tuesday. I won’t need to return back to work until April. My oncologist said that should give me enough time to have a rough idea on how I’ll feel. She just cautions me due to my profession, disease comes with the territory, even on a telemetry floor. My insurance keeps me within the network I work in. I could tell by my oncologist’s tone that she was hoping maybe I had my husband’s also and had some other options. People assume because I work in healthcare that my insurance should be great. My doctor’s have already had to do 3 peer to peer reviews to fight for testing. The insurance was denying need for it.
    I’m sorry you had to give up school. One day your working on your dreams and the next your working to figure out how you’ll navigate this disease.


  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello SandraF,

    Thank you so much for your post it gives me hope. That’s one thing this dreaded disease can’t take from us. It seems from your list I will be doing the same treatment as you. I’m premenopausal I’ll be starting this coming Tuesday with the injection to throw me into menopause, followed by the oral medication, and then Ibrance to top it off.I’m not sure if you saw my post to Moth but I’m an RN on a telemetry floor in the US. I work 3- 12 hour shifts. Even though it’s a cardiac unit we can end up with Covid patients. I’ve had the first dose of the Moderna Covid vaccine and if I’m still okay to receive the second I will get that the beginning of March. I’m on leave until April, my oncologist said by then I should have some idea of how the medications will affect me. She just cautions me due to my profession being filled with infectious disease and my immune system being compromised.

    I have 2 separate masses in my liver 1 is 1.5 x 1.5 cm the other is 1.2 x 1.2 cm and several small lesions measuring mm throughout.

    I’m a little technologically challenged and I’m having some trouble navigating the site. How do I get to the De Novo thread? It helps so much to speak with others going through similar circumstances. Those of you that have been living with this disease for awhile have loads of experience and information.

  • candy-678
    candy-678 Member Posts: 4,145
    edited February 2021
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    Lost- I PM'd you.

  • candy-678
    candy-678 Member Posts: 4,145
    edited February 2021
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  • sondraf
    sondraf Member Posts: 1,631
    edited February 2021
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    I hope emac sees this next time she is around - I believe she has a fairly physical job similar to an RN (I feel like she works in a health care setting too for some reason, but I may be completely wrong!) and is also on this same regimen.

    Your MOs plan is solid and you've got a few months to get situated, understand your side effects and how to manage them, and see what that may mean for work. You have recent surgeries so there will be some fatigue from those, and Ibrance can cause fatigue (same with the menopause). Water is your friend! If you aren't in the habit now of getting a lot of water in your day, you may want to start building that habit before Ibrance. My fatigue days in the month are inevitably a day or two after I've noticed I was busy with work and didnt drink my water.

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello Candy-678,

    Looks like I’ll be on the exact same treatment as you. I won’t start it until this upcoming week. I’m beginning to think a lot more people are de novo and because of statistics/insurance companies and guidelines that are set for the norm. I know my doctor had to do many peer to peer reviews with my insurance due to denial of need for treatment. The insurance company stating the tests were unnecessary due to initial staging. I’m so grateful my doctor’s have had my back. Thank you for your post.🙏❤️

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello Candy-678,

    Looks like I'll be on the exact same treatment as you. I won't start it until this upcoming week. I'm beginning to think a lot more people are de novo and because of statistics/insurance companies and guidelines that are set for the norm many people are being overlooked. I know my doctor had to do many peer to peer reviews with my insurance due to denial of need for treatment. The insurance company stating the tests were unnecessary due to initial staging. I'm so grateful my doctor's have had my back. Thank you for your post.🙏❤️

  • Lost47
    Lost47 Member Posts: 20
    edited February 2021
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    Hello JavaJana,

    Thank you for your post. My daughter’s professor also told her thatshe had a friend that had to go on SSI Disability and there are many organizations and grants to help with cancer care needs. I am considering it. Since my diagnosis my days have become more precious to me. I’m just trying to weigh how I want to use my time. It’s amazing to me how much I took for granted. I’m grateful you all have been so kind. ❤️🙏