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Thread for Stage IV Oligometastatic Folks

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  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited July 2019
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    Olma that’s great! My MO told me no surgery is necessary and would not even discuss it with me so I’m seeing a surgeon soon for an opinion on removing the main tumor. My grade 3 tumor has grownso fast every time a treatment quit working that I really just wanted it out whether it helped or not but now I’m hoping it will be a benefit. I’m ER+ but maybe? Is your MO breast cancer only? So great she stays on top of new things - mine doesn’t seem to and I’m on the hunt for a breast cancer only oncologist if I can find one close enough.

  • olma61
    olma61 Member Posts: 1,025
    edited July 2019
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    Yes, she is breast cancer only and keeps up on all the research, clinical trials, goes to the San Antonio Breast Cancer conference, etc. She was not on board with talking about surgery when I began treatment either, then finally after I pestered her a few times, she said “We can talk about that later on!”

    But, I guess the recent research and the good response I have had to treatment changed her mind.

    I really wanted that lump out in the beginning too, but with treatment it withered away and is not detectable on PET/CT. BUT PET does not pick up very small cancers...so there could still be tiny lesions that are active. If anything is there, I want it gone!

  • olma61
    olma61 Member Posts: 1,025
    edited July 2019
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    and wandering, I think seeing the surgeon on your own is a good idea. I would have done that eventually, also, had she kept the same no-surgery mindset. I hope you can also find an oncologist that is a better fit and that youget a complete treatment plan that works for you.

  • JCSLibrarian
    JCSLibrarian Member Posts: 548
    edited July 2019
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    Hello! I consider myself oligometastatic even though my MO slightly disagrees. I showed him several professional articles speaking to how state IV metastatic breast cancer could be treated with curative intent. He has agreed to a lumpectomy and SBRT to the lung tumor. Both tumors are almost nonexistent on any scan, but I want to make sure they are dead and gone. Unfortunately, I will have to go back on chemo, but my goal is to be NED and stay there as long as possible. Hopefully the MO will learn from this and make changes to his approach to treating MBC.

  • kelq
    kelq Member Posts: 56
    edited July 2019
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    Thanks to so many of you for sharing on my thread. I was thinking that I should update you on my progress so far! As stated above, the doctors at a big cancer center I was a good candidate for surgery and radiation. At the same time, I am almost in remission as Ibrance is working very well for me. My primary tumor is pressing on my chest wall, so my surgery would have to be a full mastectomy with lymph node removal. They recommended no reconstruction due to having to be off meds (ibrance) for extended period of time and they said high likelyhood of lymphedema in the future. Also, I could never stop taking meds. They also couldn't really tell me if I would live a longer life (and if so would it be a year or a decade?). I was overwhelmed with the info so I am taking some time to think about it. In the end I'm not sure that its all worth while but I am learning about everything so I can make an educated decision.

    Kelly

  • heidihill
    heidihill Member Posts: 1,856
    edited July 2019
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    Kelly, if it's any consolation I also had a full mastectomy, axillary node dissection and no reconstruction. Even without reconstruction there was still a high risk of lymphedema. I have managed to not get full-blown swelling but also learned to manage smaill swelling with massage. I also did prophylactic lymph drainage (out of pocket) as well as hired a personal trainer to help me strength train progressively which really helps to move lymph around. 11 years later I am still doing strength training as well as massaging my chest and arm regularly. I would say it's all been worthwhile.

  • kelq
    kelq Member Posts: 56
    edited July 2019
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    Heidihill, thanks for sharing your success story! It's definitely food for thought on my end. I'm glad to hear you are doing so well 11 years later. Keep up the good work!!

  • kitkit
    kitkit Member Posts: 29
    edited July 2019
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    Hello KalQ

    I am in a similar situation but i am curious. When you say your tumor is pressing against your chest wall, does that mean it is a solid tumor as opposed to lymph glands? I have swollen lymph glands in chest, but it's not pressing on anything. What did they say that the mastectomy would accomplish? Is that how they reach the chest tumor? Best of luck on your decision. It's tough. I am waiting for scan results right now after being on Ibrance/letrozole with few side effects for four cycles. It's hard to think about going forward with surgery, rads etc if things are now working.

    kitkit

  • kelq
    kelq Member Posts: 56
    edited July 2019
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    Hi Kitkat, my original tumor is way in the back of my breast near the chest wall. That is why it wasn't found earlier on (obviously not the part of your breast that can be seen in a mammogram). I did have lymph nodes in my chest as well, but they cleared up after a few cycles on ibrance. The surgeon said that the surgery could be a lumpectomy for someone else, but due to the location of mine it would have to be a full mastectomy. My next scan is in August, maybe that will help me make some decisions. Thanks for sharing!

  • TLeeA
    TLeeA Member Posts: 5
    edited August 2019
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    I was oligometastatic with the met strangely only in a contralateral lymph node. No sign of cancer in the right breast just the left one. My tumor was large and there were three left axillary lymph nodes involved. After initially deciding to just do hormonal therapy for palliative purposes after learning I was Stage IV, a Doctor friend did a bunch of research to talk me out of it saying that oligo truly was different and I had an excellent chance of a potential cure but in any event a significantly longer meaningful life. I listened.

    I started with ACT chemo. After it was done, my cancer was out of my lymph nodes but my primary tumor was still large. Because I had Skin involvement, they weren’t sure they could close me up. I was thin so there wasn’t a lot of skin to work with. They put me on letrozole in hopes of shrinking the tumor further so they could operate. My only surgical option was a full modified radical mastectomy. If I wanted to shoot for a cure, I also needed an axillary node dissection. They were willing to consider doing just a sentinel node, but said it was risky and may take me out of cure potential. I already hadn’t some mild lymphedema, and I hadn’t even had surgery yet! I learned of a new treatment called lymphatic bypass that was supposed to help. I switched facilities to access it because it needed to be done at the same time as the mastectomy.

    The letrozole worked. The surgery was done. My residual tumor burden (something that helps determine prognosis but I can’t seem to find anything about it on the boards) after was 2.4.

    I had full chest and lymph node radiation and radiation to right side lymph nodes. I continued on letrozole, blood counts reacted poorly to ibrance so stopped after three months.

    Six months later had PET scan and am NED. Have had three clean PETs since. My lympedema is waaaay better and I wouldn’t know I had it if I didn’t know. It acts up in hot weather but remains mild. I take only letrozole and Modafinil for fatigue

    I say if the doctor says curative intent is possible, go for it. I miss my breast, and I miss my flirty necklines. But life is so much better and I am fine with a prosthesis.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited August 2019
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    TLeeA,

    Wonderful! Each and every story like this gives us all hope.

    One tiny quibble... I have never done chemo, just hormonals. My mo never considered it palliative, nor do the many other mo’s who consider it a reasonable tx option. Both my mo and second opinion mo agreed that I could either go with hormonals or do chemo and have equally acceptable outcomes. Since I’m a less is more kind of person, I chose hormonals. That was 8 years ago! Wishing you the best

  • TLeeA
    TLeeA Member Posts: 5
    edited August 2019
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    interesting and not tiny. I respect and appreciate your perspective. If I had understood that fully, with hindsight, I may have just done hormonal treatment. I was about as lucky as a person could get with the chemo side effects, and it was absolute hell. No hair, no eyelashes, nail issues, gum soreness, fogginess, foot issues, and while my doctors claim this is not a side effect, I blew out both my shoulders doing light weightlifting that had never been an issue before. I don’t think I got bang for my buck. That said, without hindsight, I would probably do it again. I did get some treatment effect and I wouldalways wonder if it came back whether the chemo would have made a difference. It was a long road. 2.5 years post diagnosis, I finally feel close to who I used to be. Without chemo, more of the 2.5 years would have been high quality.

  • GlobalGal
    GlobalGal Member Posts: 29
    edited August 2019
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    No one has used the term oligometastatic with me, so I am unsure if I belong here or not.

    My breast cancer surgeon diagnosed me as having “History of Breast Cancer" after a complete thyroidectomy by my ENT surgeon found breast cancer in my neck's 3 cervical lymph nodes following a complete thyroidectomy for papillary thyroid cancer. Despite exhaustive testing, no primary breast cancer tumors or other mets have been found (so far).

    On the other hand, the medical oncologist describes me as “de novo Stage 4". My treatment plan consists of Anastrozole only. The doctors say there is nothing to remove with surgery or treat with chemo or radiation.

    In other words, they are not “going for the cure", which could be because of my age (66).

    Two Big Unknowns: 1. I do not know what kind of breast cancer I have as there was not enough cervical lymph node tissue. The pathologist said “possibly lobular". 2. I don't know my exact HER status (not enough tissue to run FISH).

    Does this sound like oligo—or not really? I don’t know where I fit.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited August 2019
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    GlobalGal,

    I have only been on hormonals for my 8 years of having mbc and have never had progression. I was 55 at dx, so we must throw out this outdated notion that treating with hormonals is somehow less than chemo and is only for palliative care. My earlier post states that two oncologists felt that either chemo or hormonals would be appropriate tx.

    Oligometastasis, is a bit controversial. Some doctors believe no such condition exists. They believe that once bc has moved to a distant location, the horse is out of the barn, period. Others define oligomets as no more than 3-5 lesions to a distant organ. For instance, a single bone mets, two spots on the liver etc. Hope this helps

  • GlobalGal
    GlobalGal Member Posts: 29
    edited August 2019
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    Thank you for your helpful and thoughtful response, exbrnxgrl.

    It is so encouraging and positive to hear that you've been on hormonals for eight years of MBC with no progression.

    I am navigating MBC by myself at the moment (spouse is posted overseas for 2 years), so this community is invaluable for me.

    With great appreciation,

    GlobalGal

  • TLeeA
    TLeeA Member Posts: 5
    edited August 2019
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    I found this group on this site that may help you. It sounds like what you are describing. Best wishes to you - I wonder if the primary disappeared because your immune system took care of it?

    Occult Primary with Lymph Node Metastases (in forum Less Common Types of Breast Cancer)

  • GlobalGal
    GlobalGal Member Posts: 29
    edited August 2019
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    Thanks so much, TLeeA, for posting this link.

    I think I have finally found my tiny tribe.

    Global Gal

  • Jbh_9904
    Jbh_9904 Member Posts: 1
    edited September 2019
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    TleeA I also had a single contralateral lymph node met and had bil axillary node dissection. Can i ask, what type of BC ER/PR/HER2+? What treatments did you have?

  • TLeeA
    TLeeA Member Posts: 5
    edited September 2019
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    sorry for the delayed response - I got signed out so didn’t receive notice of your reply. I had ER+|PR+|HER2-. I was de novo Stage 4 with the oligomet. When I was diagnosed, I was inoperable because the tumor was large and I am a small/ thin person so they didn’t think they could close me up and also were concerned about margins. So I did ACT dose dense with only a partial response. Still inoperable. So I took letrozole which worked miracles (though left me fatigued, achy and old feeling). I took the letrozole fro my June to January and had a left side mastectomy/AND and a lymphatic bypass bc I had mild lymphadema. Then I waited 6 weeks did a cycle of radiation and have been Ned ever since. I am due for my6 month PET in October and am petrified. It will be 3 years from diagnosis in January, but my treatments took a year and a half.

    What did you do? Does anyone else have trouble typing in this program from their iPhone? I have an unnatural delay in when things appear on the screen and weird capitalizations etc.

  • TLeeA
    TLeeA Member Posts: 5
    edited September 2019
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    I should add that I also had dermal invasion but it was not inflammatory breast cancer.

  • purplespirit
    purplespirit Member Posts: 4
    edited October 2019
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    Hi OligoMets Group - Does anyone know or have reduced dosage or stopped treatment if they were clear in scans? I’m mostly asking for CDK inhibitor with AIs like Ibrance, did any MO suggest it’s worth keeping Ibrance back in the toolbox for later?

    Sorry if this sounds really silly but just checking in...

    I hope everyone is doing well and wish you good health

  • DorothyFromKansas
    DorothyFromKansas Member Posts: 29
    edited November 2019
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    Purple, there are no silly questions. I had been on Arimidex and then a full dosage of Kisqali was added for about 8 months, IIRC. After an almost deadly shaph infection, my MO discontinued the CDK inhibitor. When I asked why, he responded that he didn't think I needed it.

  • purplespirit
    purplespirit Member Posts: 4
    edited November 2019
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    Thanks Dorothy and hope you are keeping well.

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited November 2019
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    I have been on Ibrance/Letrozole for almost five years. My initial recurrence was in a supraclavicular lymph node on the opposite side. My tumor markers increased dramatically. Once on Ibrance, my tumor markers returned to normal and when they took out the lymph node the cancer cells were gone. I then also had radiation. I have been NED ever since. My onc is comfortable with my stopping the Ibrance, but I am getting a second opinion on December 2nd just to be cautious. Over the five years I did go down from 125mg to 75 mg with no problems. No one knows how long we need to be on Ibrance once we are NED. It would be great if they could do a clinical trial to see. Wishing everyone continued health. Kitt

  • kelq
    kelq Member Posts: 56
    edited May 2020
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    Hi Kitt, was just revisiting this post and wondered how you are doing? Did you stop your ibrance? Hope you are doing well and enjoying life as a NED! KelQ

  • sofabass
    sofabass Member Posts: 4
    edited June 2020
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    This is my first time posting. I joined for my best friend who is having a similar situation. She is 38, has two kids (much older though) and after finding a lump, her OB/GYN told her she was too young and told her she didn't need a mammo. Argghh., if only. January she strained her back and then one day she felt a snap. For months they were treating her with pain killers, assuming it was the strain. She finally got an MRI and saw a several masses on her spine. She was told they might be bone spurs and her insurance didn't want to pay for a CT Scan, I advised her to go to MD Anderson emergency room. She did and they found it had metastasized to 8 places(bone only thankfully). She had to have emergency surgery bc one vertabrae had been crushed and her T10 and T3 had large lesions. She is still recovering from surgery (pins and rods) but is now on Lupron injections and recently Taxmoxifen. She will have an oopherectomy on Monday. She is also doing radiation on the bone. Yesterday was a bad day for her. She is on Gabapentin for pain but is experiencing nausea and having a hard time. She is unsure what it is, the radiation, the tamo, withdrawls from gaba...) I had advised her to get on a forum but she is in such bad condition now she doesn't have the energy. I feel better telling someone and hoping I can help her. I've been trying to guide her through this.

    So back to you. I would advise that you get full CT Scans, a brain MRI, and a PET Scan so they don't miss anything! Its so frustrating to know that if her doc had said, sure, go get a mammogram for that lump, she'd be ambulatory now. I am praying her back heals. Once her ovaries are removed, they will put her on Letrozole. MD Anderson is having great success with the treatment they are giving her, so ask your doctor. Since you managed to have 2 kids, WOW, what a blessing by the way, ask about removing your ovaries and see what your doc says about following that treatment. Best wishes to you. Sounds like you at least caught it before it mined deep into your spine. I'm so sorry they weren't keeping an eye on that.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited June 2020
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    Hello sofabass,

    The moderators, with member support, have asked that the stage IV forum be restricted to members who have been diagnosed with stage IV bc. This is noted at the top of every thread on the stage IV and they advise friends and family to use the appropriate forum which I will link.

    https://community.breastcancer.org/forum/16

    You comment “bone only thankfully" is a bit insensitive, though I am certain you didn't intend for it to be that way. We have oligometastatic members with mets to organs who continue to do well, so bone mets, while considered a bit more favorable, are just as metastatic as any other mets. Lastly, may I ask about your qualifications with respect to the medical recommendations you are making? I don't mean to be rude, but please respect then parameters set up by the moderators which in turn respects our stage IVmembers.*

    * Not all stage IV members agree with this policy, but until the mods change it, I hope we can all abide by it.

  • sofabass
    sofabass Member Posts: 4
    edited June 2020
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    I so sorry. Thank you!!! For sending me to a place I can get help for her even though I don't think I'm going to find the answers there. I had a look. I mentioned thankfully only because she had spots on her liver and lungs and just had a brain scan and they just came back negative. She is dealing with so much right now and I came out of nowhere. I am not qualified to be a doctor but want to help her mentally with this. I have been doing all the research. She doesn't want to get on a computer. Her husband sends me all of her reports and I've been staying up all night researching everything for the past 2 weeks. I was helping her thru her surgery during Covid when she was all alone and recovery in there for 5 days. She has rods and pins and non-ambulatory. She is too sick to get on the forum. Thank you!!! Best wishes. Keep fighting everyone. I'm sorry if I seemed insensitive. It's was just one thing not to worry about. She's in a very bad place physically and mentally. I will leave this forum. I had asked the mods but it bounced back. So apologies

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited June 2020
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    I am sorry that your friend is in such a bad place, but I thank you for your understanding.


  • sofabass
    sofabass Member Posts: 4
    edited June 2020
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    Great please delete my thread. I don't want to offend anyone!