Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Thread for Stage IV Oligometastatic Folks

Options
1356

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited June 2020
    Options

    sofabass,

    Again, I am sorry if you thought I was somehow admonishing you. You are new to learning about breast cancer and how to navigate this forum. All of us were at one time, whether patient, family, or friend. Most find a hand that points them in the right direction or helps them understand the breast cancer community to be helpful. Again, mea culpa. This thread will become inactive if no further posts are made.

    ETA: I just realized that this is not your thread and now apologize to the OP as well

  • dancingdiva
    dancingdiva Member Posts: 317
    edited October 2021
    Options

    hi, not sure if i;m oligo. i had recurrence in skin and lymph nodes 5 yrs ago. did radiation and seemed to get rid of it all. new hilar nodes are now lighting up bigtime. I spoke to a rad onc and he doesn't' know if i can get any more rads since i've already had it twice in the same area. i'm very bummed! i wanted to get rads to eradicate the cancer again. now i feel like it will just spread. i'm on ibrance and letrozole and i think my onc will change my meds. I'm scared to be off Ibrance because I feel like it's what has been saving me for these past few years. its like what another poster has written, i feel like they are not treating me with curative intent. Even if he can giveme more rads, he wants to save it for later. i don't want to save it for later, i want to be cured now!! it's very frustrating!

    DD

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    so glad I found this thread. I started with stage 4 diagnosis just recently in September 2021. I'm 3mos into treatment. I am triple negative with single Mets to sternum. My oncologist hasn't mentioned oligometastatic to me, and our focus and goal now is to just control this thing and try try keep it from spreading. I have so much anxiety and fear worrying about my upcoming PET/CT scan in just a couple weeks. Treatment seems to be going well so far and my SE have been more manageable than I had anticipated. I am on carbo, gemcitabine and Keytruda. I can feel my lump has shrank, which is such a great feeling. I am hoping these drugs continue to work. Has anyone had success on these drugs? I'd love to hear. I've learned to try to live in the moment and joy of the good days I have. When I first started I thought I'd never feel normal again, and I'd live in fear the rest of my life. But as chemo started and I got in a routine, learned my SE schedule it's been a lot better than I anticipated. I thank God for modern medicine and the blessing of having more options for TNBC now and the fact that stage 4 is not the death sentence many perceive it to be. Glad I found this thread. Reading your stories has given me so much hope and strength.

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Welcome Ccherndon. Sorry you find yourself with us stage 4 folks but there is a wealth of support and information on this website. I was diagnosed originally Stage 2B in 2010 and had a recurrence in September 2019 where it came back in one or two lymph nodes that spread it to my collarbone. I have been NEAD (No Evidence of Active Disease) since July 2020. Yes, there is hope as drugs keep giving better survival times. I am ER/PR + and Her2 Neu so I am on different drugs than you are on. I am on Ibrance, Faslodex, XGEVA. My radiation treatment to my collarbone was different than what the radiation oncologist said she would have given to a "normal" stage 4 patient because she believed that I could be an oligmetastatic. Did you have any radiation?

  • illimae
    illimae Member Posts: 5,624
    edited December 2021
    Options

    I don’t know how I’ve missed this post before but I’m here. Stage IV de novo and oligo since 2016. Initially, I had a single bone met, then a few tiny brain mets discovered a year later. Minimal brain mets pop up and get treated, bone met radiated and healed as part of an oligo trial and no cancer in new areas so far.

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    @cowgal it's so nice to hear your story and see that you are still thriving through your diagnosis, years later. I just started my journey and so far have only been on chemo for 3mos. My first scan isn't until next week. If all goes well, we will continue on the same drugs I'm on for another 3mos and do another scan to check progress. My onc doesn't believe I have plateaued yet on this drug so wants to keep going and get max benefits out of it before we move on to other options down the line. I do believe I will be getting radiation as a part of my treatment plan but not sure when. We will see how my cancer continues to respond to chemo and go from there. I am so excited to hear of so many success stories with stage IV here. It gives me so much hope.


    I am praying all shows well with my upcoming PET/CT scan, and no further spread. Good thing is I feel great, no pain or signs of any new alarming symptoms so hopefully that's a good sign. I can feel my massive tumor shrinking which makes me look forward to chemo days because I can feel the progress. Hoping the lymph nodes and sternum are responding just as well.

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    When is your next scan(s)?

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    @cowgal as I mentioned, my first scan is at the end of this month. Scheduled for next Monday. Hopefully all goes well.

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Good luck with your scan next Monday! I will be there for you with what we call "pocket duty" meaning that you are not alone...you have my support that all goes well kind of like I am in your pocket while you go through the scans. I want to caution you that you may or may not get the results you want. My PET scan after going through 12 weeks of Taxol plus XGEVA shots only showed the slightest of decreases in the tumor. Luckily, cancer was no where else but even partway through my radiation, my radiation oncologist did a scan in her office to see how the cancer was responding and it still had not changed much. I started Ibrance and Faslodex while I was taking radiation. My point is that some of these drugs do take time to work and also some of them like radiation and probably chemo kill the cells when they try to divide so if the cancer cells are slower to divide, it may take longer and chemo and radiation do stay in your body working quite a while after you have finished them. None the less, 9 months after my start of chemo, I have been in remission. I hope you are able to get here too!

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    thank you so much @cowgal. It helps to know I am not alone. Getting more and more anxious about the scan. Of this entire process, this is what I dread and hate the most. Thanks for the heads up too. My oncologist basically explained the same to me that this can be a slow process and only time will tell for sure. I'm mainly worried and concerned of spreading further. If that happens I guess I'll just have to deal with it and take it one step at a time. Trying to focus on the now and be present in the moment is all I can do. Focusing on what ifs and the unknown can be so daunting and consuming for me. Just trying to take things one step at a time and whatever tomorrow holds we'll cross that bridge when it comes.


    That is so amazing to hear you have been in remission. That gives me hope. Where were your Mets?

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Scans are scary. In the stage 4 forum most of us call it scanxiety. I just had my last scans the week of Thanksgiving and I still get scanxiety every time. I may be in remission but know that it can change at any time. My cancer came back on the side I had a mastectomy on in one or two lymph nodes (I can't remember) and in my collarbone. The tumor on my collarbone was quite large at over 7 cm.

    Our cancer spreading is always a concern for us stage 4 folks. I am thankful to be in remission for as long as I can and I know that should my first line of defense treatments fail, there are other lines of defense to try after this one and there are hopefully some drugs still in the pipeline that aren't available yet that could be when my lines of defense don't work anymore. Our diagnosis is pretty overwhelming.

    You can ask your medical oncologist if they think you might be oligmetastic. I asked mine if he was familiar with the term. He said he was. When I asked if he thought I could be one, he kind of skirted around the question. There is no way to tell if someone is oligmetastic but I guess there are certain characteristics that make it a possible scenario. When my radiation oncologist was talking to my medical oncologist on her cellphone, she was telling him that she thought I was an oligmetastic and I could hear him tell her that he thought I was too. I think he was trying not to get my hopes up. The oligmetastic term has only been accepted by the American Cancer Society since I think the summer of 2019 and first even mentioned in the mid 90s.

    I will be praying for good results for you with your scan next Monday.

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    Thanks @cowgal. Yes I use that term quite often. It's so true, I think you never really get over the scanxiety anytime no matter what stage because of the what ifs and unknowns.


    My breast tumor was massive at 14cm and has shrank quite a bit from what we can feel. My onc explained that the PET scan will help visualize what parts are still active, what is scar tissue, etc from the mass that is still there. I did have several lymph nodes involved in my armpit and of course the spot on my sternum so we will see how those things have responded. It's like I'm eager to know how things are responded but terrified to find if things have spread farther. Such a catch 22 but all a part of the process, I suppose. Taking it a day at a time. Thanks for sharing with me. It does make me feel so much better hearing other's stories.

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Ccherndon - I’m in your pocket for scans today. Hoping and praying that when you get the results, you get good news

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    @cowgal thanks so much. Getting more anxious but honestly just telling myself it us what it is. I am trying to focus on how I feel right now and not let the anticipation of what is to come, derail that for me. We've got a few fun things planned later today so I have something to look forward to.

    I had an idea to try my lidocaine cream on my hand for the IV. I figure if it works for my chemo port access, it will work for this too (hopefully). Needles still freak me out pretty bad, when I am anticipating pain. So hoping the cream helps. Thanks for being there for me today.

  • Ccherndon
    Ccherndon Member Posts: 11
    edited December 2021
    Options

    scan all done now so happy that's over. The lidocaine cream didn't work as expected but the anxiety meds did, and I am grateful for that. Now we wait to discuss results with my onc next week during my scheduled visit. In the meantime, going to focus on finishing the rest of this year strong and in good spirits.

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Glad you have that behind you. I know it is hard not to think about it while you wait for results. I am a realist so I try to think that if anything is going on that the scan will help them to identify it and we can respond to it. If things are going the right direction then awesome! Enjoy your rest of 2021.

  • star2017
    star2017 Member Posts: 370
    edited December 2021
    Options

    Hi all,

    I think I'd be considered oligo, tho maybe not anymore. I had clean scans for 3 years before I started experiencing leg pain. It took another 8 months to finally get the stage 4 diagnosis -- mets on my hip (and maybe a small thing that lit up on the sacrum). I had radiation and started fulvestrant and verzenio. The original met and sacrum seem quiet, but last week we discovered I've got a new small spot just discovered on the top of my femur. I'm supposed to switch to Lynparza, but it looks like I may do radiation first.

    I hope you all are doing well. My ortho oncologist said he hoped for a happy 2022, and I wish the same for all of you!

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    Hi Star. I am not sure if you would be considered still possibly oligo or not as I see different people saying different things on what is or isn't. I want to say that I think you might still be. Regardless, it sounds like you have one small spot that you are getting ready to eradicate with radiation. Are they going to do SBRT radiation on it?

    Thank you Star for the well wishes for 2022 and I hope that you and all of us stage 4ers have a happy 2022!

  • ap3
    ap3 Member Posts: 20
    edited December 2021
    Options

    Hi, would mets in 4 different vertebrae in the spine be considered oligomets?

    My wife's MO says no, but I'm not sure she's right. She did flip from HR+ to TNBC so I don't know if that changes things?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited December 2021
    Options

    AP3,

    The definition of oligometastases is a bit fuzzy. Additionally, though there is more acceptance of these limited mets these days, it was only a few years ago that many medical professionals argued that there was no such thing. They argued that once your horse was out of the barn it didn’t matter whether there were two horses that escaped or two hundred. I feel fairly certain that there are still mo’s that hold that view.

    Regardless of how you label it, it is still mbc. Many mo’s choose to treat limited mets very aggressively in hopes of keeping those mets limited. When I was dx’ed the term oligometastases was rarely used. My tx was not particularly aggressive, rads to the bone met and then AI’s. I have never had chemo and drugs like Ibrance and Verzenio had yet to be approved. Ten years down the road and still no progression despite lack of aggressive tx. Go figure!

    TBH, I’m not sure that it’s terribly important to label oligometastases as opposed to more extensive mets as long as the treatment fits a patient’s needs. Take care.

  • kelq
    kelq Member Posts: 56
    edited December 2021
    Options

    Good morning and happy holidays to all! Seems like the criteria for being oligometastatic varies and is somewhat subjective. My MO would only recommend standard treatment, but I sought a second opinion at an NCI academic center as I'm lucky to live near a big city and they offered so many different perspectives and treatment options. Unfortunately, I was diagnosed with lymphoma in addition to MBC and my treatment took a different course, but seek multiple opinions if you feel like there is more out there for you!! In the end there are no guarantees, but major cancer centers have so many cutting edge treatments available and the physicians at these hospitals are truly the pioneers in their field!

  • cowgal
    cowgal Member Posts: 625
    edited December 2021
    Options

    I agree that the definition of oligometastic is fuzzy and I think the American Cancer Society only recognized it in July 2019. I do know that my RO changed her standard stage 4 plan when she saw my information and believed me to be an oligo and treated my tumor very aggressively as she thought it might be the last chance to keep it from going somewhere else in my body. I guess to put it in exbrnxgrl terms, she believed that their was only one horse and it was out of the barn but still in the corrals in front of the barn. Both exbrnxgrl and I are NEAD and one of us had aggressive treatment and the other didn't. Would I be NEAD still if I had the palliative radiation treatment? I don't think anyone knows but I was glad to treat aggressively.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited December 2021
    Options

    cowgal,

    Good points! It’s pretty trippy when you look at both of our situations because there was no way to predict what might “work”. I never even heard the word oligometastases until a few years after my dx and there was no mention of it by my mo at the time. So my tx decisions were not based on the fact that I had only one met. I was given the choice of rads to the met and AIs or chemo and they were presented to me as equivalent options (second opinion mo agreed). I thought I would try rads+AI first and then go to chemo if I had any progression. Ten years down the road and still no progression. Talk about crapshoots! It does make me crazy when I think that no one knows why I have done well with minimal tx and some do well with aggressive tx but there’s no way to know in advance where one will fall. Hence my quibble with “curative intent” for an incurable disease. We throw stuff at it and if we’re lucky it sticks but no one really knows why.

  • alicia_en_madrid
    alicia_en_madrid Member Posts: 15
    edited January 2022
    Options

    Hello,

    I just wanted to share my mother's new diagnosis and gather some information.

    BC history (I am sorry I don't know the chemo names):

    • February 2006, IDC (right), 8mm, ER+/PR+, HER2- // lumperoctomy, chemo + Femara. She was 49.
    • October 2008, ILC (right),, multifocal ER+/PR-, HER2- // mastectomy, chemo +Arimisen
    • December 2010, ovarian metastasis (lobular), Stage IV. Oopereoctomy, no chemo this time + Aromasin
    • July 2019, loco regional recurrence (right),, It was ductal this time: surgery to remove to tumor + chemo + radiation+ tamoxifen
    • November 2021: contralateral axillary nodes (left arm). Ductal


    In November they found BC in contralateral axillary nodes (left arm). She was indeed going to have a prophylactic mastectomy on her left breast when the positive nodes were found.

    Thankfully no other distant mets have been seen in this round of tests and after MIR, breast ultrasound, mammo and body PET/CT there was nothing showing in her breast, just the lymph nodes.

    She had surgery two weeks ago to remove both her left breast and left axillary nodes. We are still waiting for the pathological report, but biopsy showed still ER+, Her- and ductal carcinoma.She just had an appointment with her oncologist and he "offered" to options either a "harder" chemo or and "easy" one. She told me on the phone and did not know the names, sorru. Her oncologist is going to discussed further with his team and will be seeing my mother in a few days, because he also wants to know my mom's opinion.

    I am not sure is they are treating my mother with a curative intent, but it does not seem likely after some many recurrences, included ovarian mets. She has recovered quite well from this last surgery, but she is now 65 and although she does not have any other health issues, I am concerned that undergoing chemo for the fourth time in 16 years (the second time in 2+ years) might damage her heart. Is it common to be offered between two chemos regimes?

    I hope this helps someone now or in the future, even though I know there are many factors that make every patient unique.

    Alicia

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,968
    edited January 2022
    Options

    alicia,

    I only have a few minutes but I wanted to address curative intent. Since there is no cure for breast cancer, curative intent is not very meaningful. Some interpret it to mean aggressive treatment but it’s really just a shot in the dark. Sometimes it buys us more time but in reality, no one is cured. I have had less aggressive treatment than many yet I have lived for 19 years without progression but I would never say I’m cured. My point is please don’t focus on whether she’s being treated with curative intent. In reality it’s not very meaningful. Take care.

  • cowgal
    cowgal Member Posts: 625
    edited January 2022
    Options

    Alicia - I think it is fair to ask her oncologist about your concerns about so much chemo and what risks she is looking at. As far as IV chemo, I have only been on Taxol and that was for 12 weeks and I don't think it is considered rough chemo but I do have long term side effects from it. You might have more input if you start a new thread or find a thread that addresses your chemo concerns. There may be people who are or have been in a similar situation as your mom. I am on oral chemo right now (Ibrance) that is 3 weeks on and 1 week off. I think some of the other drugs I am on can technically be considered "chemo" as well. It would be helpful to know what chemos she has already tried and what treatment and medicine/therapy they are proposing to her.

  • Ccherndon
    Ccherndon Member Posts: 11
    edited January 2022
    Options

    Had my follow up visit with the oncologist to review my PET/CT scans an results are amazing. I hadn't expected anywhere close to this. The only active cancer currently left is a small lymph node in my armpit. The mass that is left in my breast shows necrosis and the Mets to my sternum is now scar tissue no active disease there either. So, my oncologist wants to remain on my current treatment for the next 3-6 months and as long as my response holds, as he suspects it will, we will consider doing surgery and then radiation. He doesn't believe I have plateaued on the Gemzar, carboplatin, and keytruda so we will continue these since I've responded well and the side effects have been manageable for me. I am excited, nervous, and just overwhelmed with joy to have this kind of response just 3 mos in. Praying things continue to remain under control. He did warn me that chances are there are still microscopic cancer cells there, that are too small to see on PET scan and that is why we want to continue on chemo for several more months while my body is still receptive to it. The lymph node that is still active shows little uptake so he is very optimistic that 3-6 months I will be NEAD. Thanks for the encouragement ladies. I'd love to hear about any of you who have had surgery at stage 4. This is all new to me and initially we though surgery wouldn't be an option, but now with the results and response I've had we feel it best to capitalize on that if we can.

  • star2017
    star2017 Member Posts: 370
    edited January 2022
    Options

    Great news, ccherndon!

  • sondraf
    sondraf Member Posts: 1,617
    edited January 2022
    Options

    You may want to start considering if you want reconstruction and what kind - I had a DIEP flap recon recently and couldn't be happier with it, but its also winter, covid-times and Ive been stuck home anyway so sitting out this longer recovery time isn't that big a hardship for the result. Feel free to PM if you would like some further thoughts on this.

  • cowgal
    cowgal Member Posts: 625
    edited January 2022
    Options
    Great news Ccherndon!