Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

De Novo Stage IV

1…3334363839…93

Comments

  • kbl
    kbl Member Posts: 3,011

    Dofhl, regarding Ibrance, I was on it a little over two years and had some symptoms like it wasn't working any longer, with gastric wall thickening on imaging and back to the symptoms of not being able to eat. I told my doc it was time to switch. I'm now on Xeloda and think I made the right decision. I'm now able to eat again and have gained some weight back.

    Yes, you're correct, my brother had a single mastectomy and had IDC, whereas, I have ILC. He just had a checkup and is doing well. He was Stage IIIB. I also lost a brother to renal cell carcinoma in January of 2021. He had about three months from diagnosis to death. So sad.

    I was genetically tested, as well as my other brother with breast cancer. We both came back with no link. My daughter decided to get tested anyway. I thought she wouldn't have anything. Well, she came back with a CHEK2 mutation, which my husband must have since it's not me. To say I was shocked was an understatement. I agree if you have children, you may want to have genetic testing so that they know whether they should get tested. I did not even think of my husband's side of the family, even though my husband's mom died of lung cancer and hadn't smoked. She was Polish, which can carry CHEK2. She was never tested.

    Hugs to you, and the Zoom meeting is every Monday

  • olma61
    olma61 Member Posts: 1,026

    Another study finds an advantage for deNovoHER2+ women with MBC who are given surgery and radiation


    posted originally by Lumpie in the Breaking Research News thread


    • The authors of this retrospective study evaluated the role of local therapy in addition to systemic chemotherapy plus dual anti-HER2 agents in selected HER2-positive de novo metastatic breast cancer. There was a superior 3-year overall survival for patients who received both surgery and radiation compared with those who received surgery alone, radiation alone, or no local therapy.
    • Further prospective studies are warranted to confirm the findings for select patients with HER2-positive de novo metastatic breast cancer.

    Breast Cancer Res Treat 2021 Nov 17;[EPub Ahead of Print], L Rosier, Y Wang, JH Lee, K Daily
    https://www.practiceupdate.com/c/127229/67/13/?els...
    {Free access to full article.}


    https://www.practiceupdate.com/c/127229/67/13/?elsca1=emc_enews_weekinreview&elsca2=email&elsca3=practiceupdate_metastaticbreastcancer&elsca4=metastaticbreastcancer&elsca5=newsletter&rid=Mjg1NTQ4Mzc1MDQ3S0&lid=20849614

  • kris_2000
    kris_2000 Member Posts: 93

    Hi everyone,

    I'm a newbie and just want to introduce myself.

    I was officially diagnosed on 4/30/21 (also my son's birthday) with de novo MBC with mets to the liver and bones. I still remember the feeling the day I was told. It hit me as I was walking out of the doctors office and my legs went out from under me.

    Before I was diagnosed I had a lump and made a doctors appointment but didn't feel it was urgent since I and my mom have both had a history of benign cysts and never a family history of BC. Before my appointment I started having abdominal pain in mid-March. As I went from US to CT to liver biopsy for 6 weeks it seemed to quickly get worse. Notes at first mentioned a few liver lesions and gradually increased to "innumerable" lesions by the time I got the official diagnosis.

    Chemo was effective fortunately and I've been able to take a break from that piece since October but every minor headache or pain makes me worry.

    I have definitely felt alone in this. Lots of people have known others with cancer and assume they are all the same. I frequently heard well-intended comments like "Stay positive. You can beat this." I am thankful I found this community and more specifically others dealing with de novo MBC.

  • Kikomoon
    Kikomoon Member Posts: 358

    hi Kris - nice to meet you. I too felt alone until I started participating on these boards.I hear you, every headache or slight discomfort anywhere makes me worry. Trying to just let it go and do all the things I can right now that bring me joy.

  • kbl
    kbl Member Posts: 3,011

    Hi, Kris. I’m so sorry you have to be here, but I’m glad this forum is here to help. It’s awful to get the diagnosis, but to get it on your son’s birthday sucks so bad. Please keep us posted when you have scans. If you’re not a member of Mel’s living room, it’s also a great place to chat. Hugs.

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    There are several Kris's lately, x3?. lol. Welcome kris 2000. A lot of positive news for HER2+. As you can see, we have several HER2+ de novo cases. Thanks for stopping by and keep us updated for we are an exclusive group.

  • kbl
    kbl Member Posts: 3,011

    I know. That’s weird. I never knew anyone when I was little who spelled their name like me. I always have to spell it for people, that’s Kris with a K. Lol. Annoying

  • Tiffany214
    Tiffany214 Member Posts: 6

    I was diagnosed Stage IV De Novo 7/21. I went to the ER because I was having terrible pain in my leg for a few weeks. I figured it was from work, being a mom, maybe i pulled a muscle, etc. One day it was so bad I could hardly stand up, so my husband took me to the ER. They do didn’t think it was anything too serious, until my husband told me to mention the lump in my breast. From that second on, everything changed. I was rushed to imaging and diagnosed with cancer that had already spread to my spine, hip, femur, pelvis. I sat there in shock. I don’t get sick, never catch a cold, and here I am, 34 years old being told I have breast cancer spread throughout my body. I know most of you are wondering why I ignored the lump in my breast. I didn’t, I went to my GYN and told him I felt a little something on my right breast. He felt around for it and couldn’t find anything. He told me not to worry, it was most likely a swollen gland, I’m young, no worries. Well, I took his word for it and didn’t think too much about it after that.

    I started taking the Depro shot for birth control, and within the first few months, my breast lump was growing. This was during Covid and everything was shut down. I had no insurance at the time and I just ignored it. It grew considerably within the 10 months from my doctors visit and my trip to the ER. I wonder if my GYN would’ve taken it seriously and sent me for a mammogram, if I would be in a better situation than I am now. How did he tell me not to worry? How did he not send me for testing just to be on the safe side? My paternal grandmother had breast cancer and my maternal grandmother had uterine cancer. I’m still angry about that, and most of all myself for ignoring my breast lump. I will never forgive myself for doing this to my children and my husband, and my Mother. Her face shows her heartbreak no matter how happy and positive she pretends to be.


  • chicagoan
    chicagoan Member Posts: 1,084

    Tiffany,

    Please don't blame yourself. You did mention it to your GYN and he blew it off. Have you ever contacted him now to tell him he was wrong? I'm sorry for all that you are going through. It must be a horrible shock.

    Please try and forgive yourself. You did the best you could under the circumstances-given the horrible medical advice from your GYN, Covid and lack of insurance. Focus now on loving yourself and your family. I hope that your treatments will be very effective for you and give you many, many more years with your loved ones.

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Tiffany: I'm so sorry to find you here. I can feel your anger and pain, which is justified. SO often WE are dismissed by medical providers. Then we internalize and somehow blame ourselves, the should of/could of surface. First off You are not to blame. Yes, this situation truly sucks. I don't know the specifics of your cancer (ER/PR/HER) status. I hope you have a solid treatment plan, and once you find your "path", this overwhelming feeling may become more manageable.

    When I was first diagnosed it was difficult managing my own feelings then trying to shield loved ones. What everyone was really feeling was "fear". Each family situation is different but talking about it helped our family unit tremendously. Sounds like you are very loved, and it must be heartbreaking, for your mother to see you in this situation. Plus, the feelings you have for your children and spouse. Not easy. The old saying "feel what you got to feel" and then have a plan. We are here to support you as best as we can.

  • kris_2000
    kris_2000 Member Posts: 93

    Tiffany,

    My heart breaks for you. I'm so sorry you're here. I can feel your sadness and anger too and you have every right to feel that way. As far as guilt, I felt that way myself. It's so easy and natural to go down that path of 'if only I had done this or that' even though it doesn't help us. It's not your fault.

    I'm no expert on how to navigate any of this as I've only known my diagnosis a few more months than you but I hope you have lots of support around you and hope we can offer support and comfort to you here too.

    Are you ER, PR, or HER2 positive?

  • kbl
    kbl Member Posts: 3,011

    Tiffany, I’m so glad you’ve come here where you are safe to express how angry you are. You have every right to be angry. I am much older than you but was also blown off for many years, long enough for it to spread to my stomach. I was and still get angry about it. I can’t imagine how difficult it is for you at a young age. I hope you’ve started treatment and have a plan. That sometimes helps with some of the anger.

    If it has not spread to an organ and treatment can slow it down, you can survive this for many years. It’s the mental toll it can take as well, so do not be afraid to talk to someone about how you’re feeling.

    My daughter is 32, and I pray every day she doesn’t ever have to deal with this. I know your mom is probably wishing it was her and not you who is.

    I have no words than can make you feel different, but please know I am thinking of you and am so sorry for what you’re going through.

  • kbl
    kbl Member Posts: 3,011

    Tiffany, I’m so sorry for what you’re going through at such a young age. I can totally understand your anger. Hugs

  • Rosie24
    Rosie24 Member Posts: 1,026

    Tiffany, I’m so sorry for all you’ve been going through too. What a shock you’ve had. We’ve all had some form of that shock too and really do know how you feel, but each of us are walking our paths in our own ways. The threads in this site are a great support. Sometimes I don’t want to bring my husband and others into my “cancer life” and feel I can learn and be supported here and not have cancer be in our conversations all the time. Please post here as much as you like, and search out other topics such as the thread on bone mets for more info.

  • BarbTheBCBarbie
    BarbTheBCBarbie Member Posts: 29

    Tiffany. I understand your pain. I don’t share my story too often because I’m ashamed and angry with myself. We will get thru this. The ladies here are great. Feel free to lean on them, they truly don’t mind. This board has been a major source of help. Hugs.

  • illimae
    illimae Member Posts: 5,743

    Tiffany, please don’t beat yourself up about the lump. I found a lump that was big but I swear it wasn’t there the week before, I saw my doc, had a mammo, ultrasound and biopsy within a week 1/2, all the while thinking and hoping it was hormonal, common In premenopausal women. Scans the following week revealed a bone met, so stage IV diagnosis in less than two weeks. I reacted to the lump quickly and it still didn’t save me from MBC. We’re being diagnosed at younger ages but it seems many doctors haven’t quite caught up with the trend yet, to be fair, they have good reasons to think we’re too young but I do think diagnostic mammograms should be easily available, regardless of age.

  • moderators
    moderators Posts: 8,740

    Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC

    To register, go HERE.

    After registering, you will receive a confirmation email containing information about joining the meeting.

    Hope to see you there. Medicating

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Hope to see folks today at 4pm. With my work schedule this works out for me. Can’t wait to see everyone.

    Thanks Mods for opening up a new time slot.

  • kris_2000
    kris_2000 Member Posts: 93

    I won't be there today (infusion day) but hope to meet more of you next week.

  • moderators
    moderators Posts: 8,740

    You're welcome, Tinkerbell. Good luck today kris_2000!

    Here is the link to register, again: https://breastcancer-org.zoom.us/meeting/register/...


  • kbl
    kbl Member Posts: 3,011

    I didn’t register this time, but I’m going to just in case I can’t make Monday. Maybe I’ll pop in on a Wednesday sometime to meet some that can’t make it to Monday. I hope you had a great group

  • tinkerbell107
    tinkerbell107 Member Posts: 293

    KBL: Really enjoyed seeing you last time. With the holidays it’s hard to predict my Wednesday schedule with work. It was a nice group for we had 9 participants which made it manageable.

  • kbl
    kbl Member Posts: 3,011

    That's awesome. Yes, it was so nice to see you and people I talk with regularly. :)

  • sondraf
    sondraf Member Posts: 1,701

    Not sure where to put this, but wanted some thoughts from the de novo crowd who've had surgery. I got a sneak preview of preliminary pathology report at oncologist today, and I had 7 of 12 nodes positive for cancer and one was extracapsular, Everything is still very hormone positive, and the final breast tumor was 3cm with some high grade dcis mixed in with thr messy idc.

    MO mentioned we could mop up with radiation but it would be about 3 weeks, id have to be off ibrance another month or so and it would greatly increase my risk of lymohadema. I thought about it and agreed that I wanted to get back on treatment ASAP as we can always zap nodes as they come up, like what Saulius and Sandra are doing.

    Is there anything perhaps I should have considered otherwise? I feel comfortable in decision considering risks but I don't have much knowledge of radiotherapy to the breast.


  • tinkerbell107
    tinkerbell107 Member Posts: 293

    Sondra: I'm glad to hear you had the surgery. I know this is something you had been pushing for quite some time. As you are aware the radiation will clean up the micro metastasis.. My situation is a little bit different for I had the surgery when first dx. RO & MO, both agreed that I should wait 6 months. Basically, they wanted me to see how I respond to treatment. When the time came for radiation, I reached NEAD. However, the thinking at that time was due to the aggressiveness of the CA and extranodal extension, I agreed to 19 sessions of radiation despite being NEAD. Theory was to circle back to the primary area for scans will not pick up the micro metastasis. I was not of the opinion to watch and wait, so went the aggressive route. Not sure if this answered your question...

  • kbl
    kbl Member Posts: 3,011

    SondraF, I’m sorry I can’t help with an answer, as they’ve never found the cancer in my breast, so I’ve never had any surgery there, but like Tinkerbell, I hope some others can chime in.

  • sondraf
    sondraf Member Posts: 1,701

    Tinkerbell - that is actually quite helpful. The MO did say that not doing it right now did not mean it was completely off the table, so I suspect if I wanted to go for it in 6 months as a mop up she would be amenable to that too. Part of doing the surgery now was to remove that primary and the nodes which were starting to wake up a bit more, so I do worry of potentially "half-assing" this - why not go whole hog? The nodes have never really been super responsive to the current treatment the way the primary and bones have been, so perhaps it would be best to give them a zap.

    Maybe it would be a good idea to speak with an RO to get their input as well. And to see the full pathology report on Thursday.

    I was not feeling great yesterday and the thought of being off Ibrance longer and having to go into the hospital every day for three more weeks was just NOT something worth contemplating just then :)

  • kbl
    kbl Member Posts: 3,011

    Cross-posting.

    I know a lot don't count on tumor markers, but they've been a huge indicator for me. My CA27-29 started out at diagnosis at 490. With two years on Ibrance and Letrozole, they barely came down 100 points. Got my latest results after two months on Xeloda and Fulvestrant. They are now 176.5. I'm so happy. But that's not all. My CA15-3 started at 220. Again, barely came down on Ibrance. Xeloda for two months. It's down to 81.8. My CEA was the highest it's been two months ago at 8.5. Not super high but the highest and was creeping up every month. Last month it was 3.2 and this month 4.1, still normal. I think Xeloda and Fulvestrant are working finally. I feel better and can eat again and gained back four pounds in a month. It's going to be a good Christmas. Woot!

  • kris_2000
    kris_2000 Member Posts: 93

    KBL, that is great news! I'm so happy for you.

  • candy-678
    candy-678 Member Posts: 4,176

    KBL- Happy to read your post !!! Merry Christmas.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.