Fill Out Your Profile to share more about you. Learn more...

Thread for Stage IV Oligometastatic Folks

Options
124

Comments

  • ap3
    ap3 Member Posts: 20
    edited January 2022
    Options

    So pleased for you Ccherndon!

    My wife's latest PET/CT show NEAD and the bone healing! They're going to take away the Taxol, and just keep the Carbo, put move to once every 3 weeks, rather than weekly.

    May I ask what type of BC you have?

  • Ccherndon
    Ccherndon Member Posts: 11
    edited January 2022
    Options

    @AP3 that is wonderful news! I am so happy to hear that for your wife. I have invasive ductal carcinoma, with Mets to my sternum. I am on carboplatin, Gemcitabine, and keytruda. I'm also triple negative, with no genetic mutations. I was diagnosed as stage 4 from the beginning. My left breast tumor was 14cm, several lymph nodes involved on my left side as well.

  • bong
    bong Member Posts: 40
    edited February 2022
    Options

    hi Kelly - I’m currently in the same scenario as yours. I was diagnosed and my metastatic disease consists of lymph nodes -axillary, supraclavicular, and 1cervical (extending into my neck - that's the one that made me stage 4). I had double dense ACT chemo and the tumor has shrunk significantly in the breast. I’m also in line for surgery and was wondering whether you had your surgery in 2019. Thanks.

  • dancingdiva
    dancingdiva Member Posts: 317
    edited April 2022
    Options

    hi, I only have mediastinAl lymph nodes lighting up. But now I’m getting pleural effusion. Anybody get this?

  • edge_of_no_return
    edge_of_no_return Member Posts: 42
    edited May 2022
    Options

    hello oligometastatic peoples - is there anyone in this group that has bone mets and is treating with targeted radiation only and no systemic drugs at all?

  • cowgal
    cowgal Member Posts: 625
    edited May 2022
    Options

    I was told that there is no way to say for sure if we are truly oligmetastic just that if we meet the definition that we might be. My radiation oncologist believed me to be an oligmetastic and went after my tumor very aggressively as she thought it was the one chance to possibly keep my cancer from returning. That being said my MO told me that he thought I could be an oligo but that I still needed to be on standard treatment for someone with bone met because if it turned out that I was not an oligo than my cancer could come back and spread. I am on XGEVA, Ibrance and Faslodex.

    Here is an interesting article about oligmetastic breast cancer: https://apm.amegroups.com/article/view/51420/html

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
    edited May 2022
    Options

    edge of no return,

    I had a single bone met that was treated with rads and has been metabolically inactive since then. However, I simply couldn’t deal with the risks of no systemic tx and have been on AI’s for over a decade.

  • edge_of_no_return
    edge_of_no_return Member Posts: 42
    edited May 2022
    Options

    exbrnxgrl - thank you for your input. i appreciate it. i assume most people have much more to lose (children, family) than i do and i totally understand and respect that. i'll keep searching for someone who has/is treating bone mets with rads only & no meds, which really does sound like a long shot.

  • edge_of_no_return
    edge_of_no_return Member Posts: 42
    edited May 2022
    Options

    also - thank you cowgal for the link - i'm reading the article now. thank you!!!

  • silas102
    silas102 Member Posts: 7
    edited August 2022
    Options

    Hello all, This is about my wife Anca:

    Diagnosis in February: Oligometastatic breast cancer ER/PR+, HER2-, multiple tumors in left breast (two of them larger than 4cm), 4 sub-centimetrical lesions in different bones.
    Had 1 round of ACT chemotherapy(5months), PET scan shows significantly reduced breast tumors, but one bone tumor growth. They are the same bone tumors, no new sites are affected.

    She is getting treatment at Northwestern Hospital Chicago.
    We are concerned that because of that 1 bone tumor that grew less than 1 cm, they will not do surgery.
    Any thoughts? Thanks!!!

  • sondraf
    sondraf Member Posts: 1,604
    edited August 2022
    Options

    Welcome silas.

    If by surgery you mean primary removal, the one bone met could be radiated, I imagine before surgery, although I have no idea how that impacts when the surgery happens.

  • illimae
    illimae Member Posts: 5,608
    edited August 2022
    Options

    Silas, many doctors don’t recommend surgery at all but if it’s an option, I wouldn’t think they’d need to get all tumors under control first, especially if your wife would have to be off treatment for the surgery itself. Have the doctors talked about the plan yet?

  • silas102
    silas102 Member Posts: 7
    edited August 2022
    Options

    We'll be talking to the doctors next week. For now, we just know that our surgeon isnt in favor of surgery, but the oncologist hasnt reviewed the PET scan yet. What you're saying makes sense, starting another treatment would only mean we need to interrupt it at some point to have surgery. This is a good point and we'll express it to our oncologist.
    Thanks for your input!

  • cyathea
    cyathea Member Posts: 330
    edited August 2022
    Options

    silas102, my surgeon was hesitant about doing my BMX as well. I think her reasoning was that the cancer had already spread to both breasts, lymph nodes and my spine and thus the cancer was now systemic. A BMX is major surgery and there can be complications like I had, so I think the surgeon wanted to spare me of that. My oncologist felt differently. He wanted to treat me like a Stage 3/oligometastatic patient. I had also read a medical study that indicated slightly better survival and time to progression for oligometastatic patients who had surgery, so I talked to the surgeon and she agreed to do what my MO recommended.

    My tumors were different from Anca’s, so maybe her MO and surgeon will recommend a different strategy.

    It’s been a little over three years since I was diagnosed and it has certainly been a rough road, but I think I’m starting to become accustomed to the bumps. Some people think that everything goes back to normal after treatment ends, but life will never be the same again. I think accepting that fact is helpful. I’ll be thinking of you and Anca. I hope that you and she can talk through the pros and cons of surgery and that you can have peace with whatever decision is made

  • sondraf
    sondraf Member Posts: 1,604
    edited August 2022
    Options

    I also had surgery, when my first line of pills started to fail,my breast tumor and axillary started to grow. I had wanted that thing out from the start, but was not offered systemic chemo, just Ibrance/letrozole which didn't really work on my primary. I paused the drugs for the surgery, about a month, and they lowered the risk factor by only doing a single mastectomy, not reducing my other side, and put on the best team who could get in and out with the least amount of surgical time.

    The other thing to consider with surgery is the need for radiotherapy after as that will cause treatment to be paused. I had 5 sessions of breast rads (the new standard here in the UK) and 5 sessions to a vertebrae. That would have kept me off Ibrance a little longer if I had still been on it, but I was between drugs at that point so it worked out.

    Also, starting with that chemo regimen and a few mets spots, was the oncologist looking to treat with curative intent similar to a stage III? Because part of that would include surgery and radiation.

    You may want to ask oncologist:

    - Why they are recommending surgery, which type (mastectomy or lumpectomy), expected recovery time, node removal, etc

    - If post surgical rads would be required - how much, can they radiate the vertebrae at the same time, etc

    - Next line of treatment - would she need to delay starting and how long, what is the risk for that, given she just had a strong IV chemo regimen, etc.

  • ddil
    ddil Member Posts: 92
    edited August 2022
    Options

    HI,

    I saw this article published December 2021 about Ogliometastic and how they are categorizing it. Interesting is also if you have responded to treatment and have limited mets as a result it is considered medically induced.


    5. Surgical intervention of oligometastatic breast cancer

    Several trials have reported on the surgical approach to eradicate discrete metastasis with resistant subclones. These trials have yielded varied results but have shown enough promise to warrant further consideration of a more integrated approach to treatment of oligometastatic disease.


    https://www.sciencedirect.com/science/article/pii/...


  • elderberry
    elderberry Member Posts: 1,064
    edited August 2022
    Options

    ddil: Thank you for that link. I did not have surgery. The primary tumour literally vanished and cannot be seen on any PET scans I have had since there. The horse is out of the barn and I would just as soon not go through the misery of surgery if it doesn't give me a huge survival advantage.

  • ddil
    ddil Member Posts: 92
    edited August 2022
    Options

    I completely understand that.

  • dancemom
    dancemom Member Posts: 404
    edited August 2022
    Options

    Silas. It sounds like she is at a big center. I am grateful I am too. Many many interdisciplinary conferences have been about my treatment plan. We are so "in between". As I'm de novo oligometastatic, the team finally decided to treat it ALL. As if its stage 2or 3 AND metastatic. I had a mastectomy, 7 weeks of radiation (primary and my sternal mets).I have been on and off Ibrance throughout (off during treatment and recovery) and letrozole continually except the few days around surgery.

    So many factors the doctors consider. As I now understand, no 2 cases are alike at all! My surgeon was also hesitant. I asked my MO why. She said surgeon was concerned that I'd be upset if I lost my breast and then the spread still continued. I said I knew that is a risk, but I went with the MO's feeling of trying to get the primary out to maybe prevent more spread. Then MO wanted less general Radiation as my tumor was in the inner lower quadrant, (another anomaly) so the more common lymphnodes are not involved. RO just couldn't not give me a full course of the usual. Plus then the extra for internal mammary and sternum. I did NOT have those biopsies, only scanned, because everyone agreed thoracic surgery is going too far.

    Can't have scans for a while because of this tissue expander. Scheduled for diep exchange in fall, but need another mammo/us on the other side first. I'm nervous cuz now that one is "dense". My missing one was dense and I was called back for more imaging for years before suddenly , BAM you got cancer AND its in your sternum too, yay. Feeling a little vain worrying about boob size. I am worried about this huge surgery. But I have so many allergies, and my weight fluctuates, and I hope to outlive an implant...Elderberry, while I didn't hesitate to "cut out the cancer" I am often questioning my choice to do reconstruction. I dont know if there is a right answer.

    I'm kind of tired of cancer.

  • silas102
    silas102 Member Posts: 7
    edited August 2022
    Options

    Hi all, thanks for your answers. After 5 months of ACT chemo, the breast and ganglions tumors reduced greatly. However the bone ones about same size, 2 small increase. Next treatment: hormonal (letrazole, ribociclib, zoladex), no surgery until the bone tumors are in control. No radiation unless there is pain.
    We are getting a second opinion today from University of Chicago hospital, they have a program for Stage 4 breast cancer.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
    edited August 2022
    Options

    silas,

    I am not a doctor and hate giving anything that could be interpreted as medical advice but I do have one observation. You mentioned no rads to your bone mets unless you are in pain. This was a common approach at one point but increasingly doctors are radiating bone mets to render them necrotic (no longer metabolically active, dead). I had rads to a bone met on my femur 11 years ago and it has been necrotic ever since. I was not in pain but my mo and ro felt that “killing” the met was the best approach. I have had no progression in those 11 years.

    Again, I have no medical expertise and each of our situations is unique but this may be something to ask about especially if you are getting a second opinion. Take care

  • cyathea
    cyathea Member Posts: 330
    edited August 2022
    Options

    silas102, I’m happy to hear there was a reduction after the ACT. I would also echo exbrnxgrl that you should ask whether rads would be helpful in extending the time to progression.

    My T11 lesion was zapped twice and it has been stable with no signs of progression for three years. My MO thinks there is a good chance that I will be like exbrnxgrl and get at least a decade without progression. Every case is different, of course, but I’m very encouraged by the anecdotes of longer survival for oligometastatic people

  • silas102
    silas102 Member Posts: 7
    edited August 2022
    Options

    exbrnxgrl, could you tell me your doctors? Maybe i can get a second opinion from them. The staff at NW and the second opinions from Rush and Univ of Chicago, mention of radiation only if there is pain, not sure that would be same radiation like in a curative attempt. Thanks a lot!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,854
    edited August 2022
    Options

    silas102,

    I live in the Santa Clara Valley, aka Silicon Valley. My medical arrangements, though very common in CA, are a bit different than most. I belong to a completely self contained HMO, Kaiser Permanente. This means that everyone and everything is a Kaiser employee or service. Yup, everything from pharmacies to labs to scans are part of Kaiser and the patients are considered members. That being said, I do not know if they do second opinions for non-members. If this is the case you might want to consider a major teaching facility or NCI facility for a second opinion. While not all areas can be radiated, I continue to be surprised when an mo says they only use rads for pain relief. While this was common in the past, it is becoming more common and I believe (no concrete proof) that having rads to my bone met significantly contributed to my longevity. We are all a bit different so I don't know if there are other circumstances that would contradict rads for you however it may be worth pursuing.

    BTW, as a Kaiser member I can only use Kaiser doctors and facilities but I did self pay for a second opinion at Stanford and they agreed with my MO's treatment plan including rads. Take care and feel free to keep in contact.

    PS: Curative attempt is a bit odd to me as there is no cure for bc and was never mentioned by my docs, particularly not 11 years ago. I certainly do not consider myself cured. I am just very lucky.

  • kelq
    kelq Member Posts: 56
    edited August 2022
    Options

    Silas102, I'm currently in radiation - not for bone mets and not for curative intent, but to stave off progression as long as possible given all the new drugs coming down the pipeline. I also see an MD at NW in Chicago. Maybe it's not for you if there are meds available that will put your bone mets in remission?

  • eleanora
    eleanora Member Posts: 299
    edited October 2022
    Options

    Have read and re-read this thread many times since I was DXd in early may as Stage IV with 2 bone mets - right pelvis and clivus, both of which received SBRT at the end of June. At that time my MO strongly objected to radiation for those 2 sites and I had to pressure her to present it to the tumor board. She only relented when every radiologist on the board was adamant that radiation was the best choice. I am also on Kisqali and Fulvestrant since 8/1. I see my RO in 2 days to discuss the status of those 2 sites as shown on the scans performed last week, but have already had a very unsettling appointment with my MO. The most recent CT scan showed three small (think mm, not cm) sclerotic lesions, one on the sternum, one on one rib and one on L5. The bone scan showed no increased tracer uptake at these sites. During the video appointment with the MO, she stated that she would not recommend radiation to any of the three new sites, even if they "became active". In the notes that she posted for this appointment on mychart, she stated "No future radiation for mets, as patient is no longer oligometastatic". I messaged her, noting the NCI definition of oligo as "1-5 mets" and she acknowledged that, but said it is really a clinical determination and this was her diagnosis. I am more upset and anxious about this than I was about my initial Stage IV dx. I realize that the term is a label subjectively applied, but I also believe that it represents a certain perspective and influences the treatment recommendations made for an individual patient.

    I think I am realistic. I don't expect "cure" but want very much to extend time to progression for as long as possible. I am on my second line of endocrine therapy (bone biopsy showed same hormone receptors as original tumor) and there is only one more endocrine line available before chemo, which I am pretty certain I will not be able to tolerate. I feel as those she is pushing me faster down that slippery slope that none of us want to travel.

    Sorry for the long post. Not sure what I am asking all of you except perhaps your opinions as to whether I am overreacting. I have not slept more than a few hours a night since my MO appointment.

    Thanks for listening.

    Eleanora

  • illimae
    illimae Member Posts: 5,608
    edited October 2022
    Options

    eleanora, while not all MO’s are really on board with oligo’s as a subset of patients to be treated more aggressively, your MO’s reluctance is concerning to me.

    As for the 3 newly identified lesions though, I doubt my team would recommend radiation either for a couple reasons, one being that they are not proven to be cancer by biopsies and two, they are not confirmed by the bone scan, which I understand is better for identifying true bone mets. I had a single bone met at diagnosis, confirmed by biopsy. Two others were mentioned over the years but were never as clear on scans or biopsied. Years later while receiving radiation to my known bone met as part of a oligo trial, a review of all scans since diagnosis was done and that team was confident that the 2 other spots were not cancer but were degenerative changes or previous injuries and we did not radiate those in the trial. They may be mentioned on future scan reports but I think nothing of them. Of course this is just my situation but if you consider a different oncologist, maybe they could take a second look at those newer spots too.

  • cookie54
    cookie54 Member Posts: 701
    edited October 2022
    Options

    eleanora I too am considered oglio at this point was diagnosed Stage IV 6/22 with a 3 lung mets. I think it is a good idea to seek another opinion, it can't hurt. You are and have to advocate for what you feel is best for you! It's about us not about the pride of your MO, At least you will know you you did everything you could to advocate care for yourself with no regrets in the end. I did get a second opinion with my new diagnosis and I am glad I did. Now I have a second MO in my back pocket for if and when I have progression to collaborate my plan. Like you I am a realist and we are all trying to stretch our OS as long as possible. Wishing you the best, keep us posted.

  • eleanora
    eleanora Member Posts: 299
    edited October 2022
    Options

    illimae:

    Thank you for your calm and cool analysis of the situation. It is exactly what I needed. I was not expecting the "new" lesions to be radiated, as they are not active, but was very concerned by the MO's statement that she wouldn't prescribe radiation even if they became active. I did mention to the MO that the rib lesion is in exactly the spot where the EMG needles were inserted as part of diagnosing the long thoracic nerve injury I sustained during the core needle biopsy in 2019. That area has been painful since 2019 and is why I take gabapentin. I also told her that I had a hard fall in July, landing on the lumbar area of my spine and was in pain for several days. She dismissed both comments, stating that it was her opinion these are both bone mets which have been successfully treated by Kisqali and Fulvestrant. I have requested copies of the scans, as well as the ones done in April of this year and will now have to figure out where to go for a second reading of them. I have significant arthritis as well as osteopenia and am hoping that at least one or two of these are simply degenerative.

    When I was initially diagnosed with the met to the clivus - not biopsied because of location, but confirmed by bone scan - I read your many helpful posts about your radiation for brain mets and that was a large factor in my having the courage to pressure the MO about SBRT, so I owe you thanks for that as well.

    I meet with the RO on Thursday to discuss the status of the mets that were radiated. Hoping to hear good news.

  • eleanora
    eleanora Member Posts: 299
    edited October 2022
    Options

    Cookie 54:

    Thank you for the support and encouragement. Of course a Jersey Girl would tell me to stick up for myself!Winking

    You mentioned that you got a second MO opinion. Did you stay within the same hospital or go elsewhere? I would want to be sure that the second opinion was free of any influence by my current MO. Were you able to mail in the scans and other info and do a video visit, or did you go in person? It sounds as though you were pleased with the result and that's encouraging. Does your MO know that you sought a second opinion and if so, how did he/she react?