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De Novo Oligometastic- What treatments have you chosen?

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ncyogi
ncyogi Member Posts: 45

Hi all! I hope there is not already a forum for this. If there is, I couldn't find it!

I am newly diagnosed (June 2021) and oligometastic- 1 met on my L4. I also have 3 positive nodes. I am currently on Faslodex and Kisqali. ER+/PR+ HER-. I had my ovaries removed a month ago.

I am trying to research the choices of staying on hormone therapies indefinitely or going aggressive with chemo/surgery/rads and then going back on the hormone/targeted therapy. Without debating the term "curative intent" (I've read many opinions on how that applies, or doesn't, for MBC), I'm obviously hoping for NEAD and trying to figure out what others have done.

My MO is supportive of going aggressive and I have been to MD Anderson for a 2nd opinion where they also aligned, if that's what I choose. MDA is a research based hospital and they just don't have the data yet to be able to confidently recommend one way or the other (since drugs like Ibrance and Kisqali are still relatively "new").

I'm 51 with 2 kids (18 & 20) and I'm in great health if you don't count this shitty disease. ;-) I want to go for curative intent/ NEAD and would love to know what others have done who are in my similar situation. What do you think gives us the best chance for long term survival? I really appreciate your stories, experiences, advice and expertise. BCO has been a life saver so far! Thank you for sharing.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
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    Hi,

    I have a single met to my upper femur that was dx'ed ten years ago. Drugs like Ibrance and Verzenio had yet to be approved. Both my primary mo and my second opinion mo agreed that I could go with either chemo or AI's. I chose AI's as well as rads x15 to the met itself. I have remained NEAD since. TBH, there is no really good explanation as to why I've done so well. Although I'd like to give all credit to my tx plan, there's no way to really know that. I imagine that if I were dx'ed today, I'd be offered Ibrance or Verzenio as well. Take care.

    PS: Have you seen this thread? It hasn’t been active but might be of interest

    https://community.breastcancer.org/forum/8/topics/786652?post_id=5509335


  • moth
    moth Member Posts: 3,293
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    There are ongoing Phase 3 trials running regarding SBRT for oligometastatic disease. Results from Phase 2 are very promising - see COMET-SABR trial.

    https://ascopubs.org/doi/10.1200/JCO.20.00818

    If it were me, I would be adamant about getting SBRT for all those mets & then sorting out the systemic treatment. Bone esp seems to respond well.

  • olma61
    olma61 Member Posts: 1,024
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    I was not oligo but I would have chosen aggressive treatment up front had it been available to me

    And knowing what I know now, I say the same.

    An initial course of chemo was standard of care for me anyway, and was just not that bad for me in terms of side effects. I had Taxol and I lasted the max time that MO wanted for me which was six months.

    I had the opportunity to have rads to the spine after I became NED and then was“oligo progressive" with only one met active. I agree with moth on making at least rads a definite “yes".


    Become familiar with the risk and possible side effects of whatever else the aggressive treatment plan will entail.and decide accordingly.


  • ncyogi
    ncyogi Member Posts: 45
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    You guys are the best. Even though I don’t post often, I read most of what you post & consider you part of my onc team! Thank you. And keep the tips coming!

    ExBronx- I went back & read that forum you sent. Also very helpful! Thanks

  • illimae
    illimae Member Posts: 5,607
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    NCyogi, I was diagnosed de novo with oligo MBC in November 2016 at 41 and go to MDA. I was treated with “curative intent”, which was chemo, surgery (lumpectomy) and radiation followed by tamoxifen for ER+ and continuing on Herceptin and Perjeta for HER2+. After the initial treatment, I remained stable (not NED because the bone met was there but sleeping). After about 3.5 years, the bone met woke up and at that point, I joined a trial to see if radiation to oligo mets is more beneficial than systemic alone. In December, with the bone met beautifully healed, I was given NEAD status in the body (thank you radiation!). I did change treatment to add meds that work in the brain (the is stable too) and am doing well. Given the option, I tend to choose hitting problems hard from the get go. Good luck.

  • Goodie16
    Goodie16 Member Posts: 297
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    Initial diagnosis was stage 1 in April 2014, but my onc suspects I am de novo oligometastic, after a seizure led to the discovery of a solitary brain met in February 2015. I have had a mastectomy and went on tamoxifin until the craniotomy surgery. After the brain met was discovered in 2015, it was removed via craniotomy and the surgical bed was treated with gammaknife radiation a month later. Back on tamox around June 2015. In July 2016, I had a complete hysterectomy after Lupron failed to drop my estrogen levels enough to switch to an AI. I've been on Arimidex since August 2016. My last full body scan in April 2021 was NED. My last brain scan in August 2021 was also NED. My onc and I will be discussing how much longer we will be continuing AI treatment at my next appointment in November, as I'm starting to really struggle with some of the SE, namely bone loss and terrible joint pain in my major joints.

  • ncyogi
    ncyogi Member Posts: 45
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    Bumping! ;)

  • screech
    screech Member Posts: 62
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    Hi NC Yogi - I had one unconfirmed met to the sacrum area. I was also bi-lateral - a different cancer on each side. I went for curative intent which included chemo, double mx (with reconstruction), and radiation. I did five years of ovarian suppression along with Zometa. I have now completed (and am still taking) seven years of exemestane (generic aromasin). I remain (knocking wood furiously) NED. I lead a fairly busy life - I work full time, I run, I hike, bike, etc.....at 50 when I was diagnosed I would have never believed that seven years later at 57 all is great! Best wishes for you!

  • ncyogi
    ncyogi Member Posts: 45
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    Thank you Screech! I’m definitely planning on chemo/surgery & stories like yours give me hope & validation. I hope to join you in NED Land soon!

  • screech
    screech Member Posts: 62
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    You will get there - it just takes a LOT of appointments-LOL. Also, FYI-I worked full time the entire time and worked my side job bartending. No one would have known anything was up with me except for once in my life my hair wasn't a haystack thanks to the awesome wig I was rocking. As for the surgery-I'm pretty athletic and I bounced back quickly,. I had my surgery on a Friday-I took the following week off, then went back on that Monday-but I didn't lift anything heavier than my purse for a long while.

  • mozuke1
    mozuke1 Member Posts: 39
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    Hi! I am in a similar situation, 49 diagnosed this month de novo oligometastatic. I have been offered an aggressive course of treatment by onehospital system (palliative by another) and have decided to go aggressive. Having not exactly second thoughts, but just questions. Have you made a decision about going for more aggressive treatment? I’m due to start chemo next week.

  • mozuke1
    mozuke1 Member Posts: 39
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    Thanks for posting your story. This has been such an overwhelming process. It’s helpful to hear from people who’ve been through all these things they are suggesting for me and are thriving at the other end. Seven years sounds great, but I want so many more!! Cancer suck

  • ncyogi
    ncyogi Member Posts: 45
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    Hi Mozuke! I am going aggressive also & will start chemo sometime after Thanksgiving. I have been on targeted therapy since July. How are you doing so far? Good luck with chemo- we will do this together

  • dancemom
    dancemom Member Posts: 404
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    • Hi. Hadnt heard the term oligometastic before. My Mets is to sternum, but can't biospy. Going aggressive as per team recommendation. Dr keeps saying the words "curative intent" which confuses me. Been on letrozole/ibrance/xgeva since April. Plan now is for masectomy "very soon" and PMRT.

    I'm terrified. Thank you for your positive stories!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
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    Dancemom,

    Even after 10 years, the term “curative intent" confuses me too! There is no cure for bc and intent? Well, I'm all for good intentions but since there is no cure, I'm simply left scratching my head.

    Many have said what it means is aggressive tx. That may be the approach, but it still doesn't equal cure.My own medical team gave me a choice between AI's (pre-Ibrance, Verzenio, Kisqali) or chemo and a second opinion concurred. I went with an AI so I chose the less aggressive route. That was 10 years ago and I've had no progression. Am I cured? Nope, just lucky.

    We had a thread on curative intent that might interest you. Take care

    https://community.breastcancer.org/forum/8/topics/880360?page=3#post_5684495


  • dancemom
    dancemom Member Posts: 404
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    thanks again exbrnxgrl!!!

  • ncyogi
    ncyogi Member Posts: 45
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    Hello all, Long time no see. I started this thread and then disappeared- sorry about that. I think I overdosed on BC research and needed to step back.

    Quick Update:

    I was on hormone therapies and responded very well after 3months. All mets (spine and nodes) no longer showed up on a PET, except for the original breast tumor and it had shrunk over 50%.

    Because I responded so well, it was time to "go aggressive". On Dec 6 I started chemo, ACT. 8 infusions total. I had my 7th today and will finish up on March 21. AC kicked my butt, Taxol has been much more manageable.

    I'll have a lumpectomy on April 25 and then 6 weeks of radiation starting in June. Somewhere in there I will have more scans and hoping for the best!!

    That's it for now! I hope you all are doing well. Take care!! NC Yogi


  • dancemom
    dancemom Member Posts: 404
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    Hi ladies

    Looked at the notes on MyChart by my RO from yesterday's first Rads treatment (of 34) First time I have seen the words De Novo Oligometastic in my diagnosis.

    Good news on response ncyogi. I am also happy to see people I recognize, take care.

    Going aggressive, but I'm getting tired of this new part time job! It's been a year now. I know you all get it. Current obsession I've locked onto recently is that I can't have an MRI until after exchange surgery. Planning diep. I want to do it late May or June so I can just take the summer off from teaching. Waiting 6 months after rads means summer 2023! So much for dealing with my knee injury🙄.

    2nd zaps in a few minutes.