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

Thread for Stage IV Oligometastatic Folks

Options
kelq
kelq Member Posts: 56

Hi,

Wanted to start a separate thread for stage 4 oligometastatic folks. I was diagnosed in January and my metastatic disease consists of lymph nodes -axillary, mammary, supraclavicular, and cervical (extending into my neck - that's the one that made me stage 4). After 3 months on Ibrance/Letrozole, many of the lymph nodes have shrunk up and my original tumor (near the sternum, back by the chest wall) has shrunk in half. My doctor says I am oligometastic and might be a good candidate for surgery. Due to location of tumor, we are talking full mastectomy. My doctor suggested if I choose reconstruction, I would have to be off meds for an extended period of time. If the meds are shrinking up my tumor, do I need surgery? Seems like a huge procedure that may or may not offer extended life. Has anyone ever heard of or had cyroablation? Any thoughts, advice, other treatments. If you are in the same boat, lets chat about it!

Kelly

Tagged:
«13456

Comments

  • B-A-P
    B-A-P Member Posts: 409
    edited May 2019
    Options

    I had my mastectomy after reaching ned after first line of treatment and I’m glad I did. Some studies show a benefit and some will say there isn’t. In my case , my oncologist believes I made the right choice by doing it. And I’m glad I did as well because after seeing the path results , I had dcis, lcis, and a whole slew of things that chemo doesn’t take care of. It takes that burden off me.

    I think at this stage it’s very individual and a conversation to have with your dr.

    It was mentioned to me that I could have an ablation but after my mri came back, the Met was in an inaccessible spot. Thankfully chemo took care of it.

  • olma61
    olma61 Member Posts: 1,026
    edited May 2019
    Options

    After my initial mammo, ultrasound and biopsy I was diagnosed Stage 2. The plan was neo-adjuvant chemo, lumpectomy and maybe radiation. An MRI revealed a suspicious looking spot on my lung so I had a PET-CTscan. Lung spot turned out to be nothing, but I was diagnosed with bone mets and Stage IV.

    So I started chemo as Stage IV and my MO told me "no surgery". I was insisting I wanted this lump out of me and could not understand why cutting it out would not be helpful, but she was completely against any surgery at that point.

    Fast forward, chemo & targeted therapy have made my breast lump & one lymph node lesion completely undetectable. Doctor doesn't use the term "oligometastasis" with me but I guess I am, with bone only mets and currently only one active spot on the bone, that will be radiated.

    I have not brought up surgery again and really, I am not sure I would even want a mastectomy because I might be creating more problems for myself...but I am not sure.

    I do see that in some recent studies, women who've had surgery seem to have a slight edge in overall survival. Although older studies claimed no benefit...

    If I could have say, an excisional biopsy, where they could really tell my breast was cancer free...I would like that, but who knows if any doctor would even do that. Can't call it a lumpectomy, there is no more lump! And I don't know, but I suspect, the only surgery that WOULD be considered for Stage IV is mastectomy.

    This is a great question, KelQ. Would love to see more replies.

  • Goodie16
    Goodie16 Member Posts: 297
    edited May 2019
    Options

    I'm oligo with a single brain met!

    I was diagnosed Stage 1A and had a masectomy because location of lump ruled out a lumpectomy. No radiation. Low oncotype score, ruled out chemo. Started on tamoxifen. Fast forward 6 months to the day of my masectomy and I had a seizure. Brain MRIs revealed a single met in the brain and my neuro onc performed a craniotomy. I had gammaknife radiation to the tumor bed 6 weeks later.
    I struggled on tamoxifen, so we started Lupron injections so I could switch to an AI. Eventually was scheduled for ovary removal that morphed into a complete hyster due to endometriosis. After that I switched to Arimidex and have been NEAD in the brain and body since February 2015.

  • summerspring
    summerspring Member Posts: 14
    edited May 2019
    Options

    kelq- we have very similar diagnoses. I’ve had 4 treatments. After two the neck/superclavicular disappeared and others shrunk. My original spot that brought me in is also near the chest wall but they told me they wouldn’t operate because once it’s out...

    Where are you treated? I want to find another opinion. What did your dr say about oligometastic

  • BellaTassie15
    BellaTassie15 Member Posts: 77
    edited May 2019
    Options

    I was diagnosed with inflammatory breast cancer in 2015 and refused mastectomy and radiotherapy after chemo as I was stage 4 by then. The RO told me the breast lesion would recur without these because IBC affects the skin and has very high recurrence rates. In 2017 I had local recurrence and my (4th) MO recommended mastectomy and radiotherapy as she said I was oligometastatic and had been NEAD in the rest of the body due to Herceptin and Perjeta. After trying Tamoxifen for several months with only partial response I finally agreed when the new RO said he would treat me for cure. It’s just over 12 months now and I’m glad I had it. Best wishes.

  • kelq
    kelq Member Posts: 56
    edited May 2019
    Options

    Thanks for all of your replies! I have no idea what decision I am going to make, but I will at least see the surgeon and educate myself before making a decision.

    Summerspring - I am seeing an oncologist in suburban Chicago, but went for a second opinion at Northwestern (downtown Chicago). Not sure where you are, but seems like they had more cutting edge stuff to discuss when we went to a University medical center/big cancer care center.

    Best wishes to you ladies as well!

    Kelly


  • Sparkles2_2
    Sparkles2_2 Member Posts: 8
    edited May 2019
    Options

    WOW there is a whole thread for us Oligo's WHOOHOO... My story, Diagnosed originally as a stage III until a bone scan showed 1 single Met to T5 which changed me to a Denovo stage IV back in late 2017. I had Chemo- than a lumpectomy and a pile of radiation. My single Met to T5 was zapped via Cyber knife last fall and I have been NED ever since. Im on preventative treatments now to keep it at bay. But i am feeling good!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,066
    edited June 2019
    Options

    Wonderful! I am approaching almost 8 years with a single bone met that has been necrotic since I had rads years ago. I have been on AI’s only all this time, but keep switching due se’s. I recently started exemestane (Aromasin). I give it a couple of years before I give it up. Maybe there’ll be something better by then 😕 .

  • kelq
    kelq Member Posts: 56
    edited June 2019
    Options

    Thanks for sharing and for great replies ladies!

    Sparkles - we definitely deserve our own thread! I think there are some unique concerns for oligo women and a lot of emerging research/data to support an enhanced treatment plan for us. I was surprised how little info I found on BCO about it.

    exbrnxgrl - 8 years, amazing! I'm only 6mos into this, but it's people like you who motivate and inspire me! Seems like our treatments buy us time until the next newer and better treatment comes out. By the time you need to switch again, hopefully there will be something better. No ibrance for you?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,066
    edited June 2019
    Options

    KelQ,

    Ibrance had not been given approval when I was dx'ed, though it was being trialed. Since I'd had no progression on an AI alone, my mo and I decided not to change it up when there didn't seem to be a reason to. I have been on all the AI's and switched between them not because of progression, but because of side effects. Take care

  • mshar
    mshar Member Posts: 19
    edited June 2019
    Options

    Thanks for starting this, KelQ. I'm not sure whether I'm oligometastatic because my oncologist doesn't really use the term. I was diagnosed de novo in September 2018, with a few scattered bone mets. The doctors still wanted to do aggressive treatment so I did Taxol and AC right away, and I finished those at the end of January. Since then, I've just been doing letrozole. The plan was for me to start ibrance as well but we've been waiting for some unrelated infections to clear up before adding it. In the meantime, I had scans in February (after chemo) and May (3 months of letrozole) and both show no signs of the main tumor and no more bone mets (just healing where they used to be). A breast biopsy in March still showed a few scattered cancer cells but nothing like before.

    Our original plan in September was to do the I/L combo for 3-6 months before doing surgery and radiation. Now I'm wondering whether that decision still makes sense given the situation. I'm not sure what there is to remove at this point but surgery seems more "aggressive" and I'm more comfortable with aggressive steps.

    I'd definitely be curious to hear what you learn and what you decide to do! Wishing you best results either way.

  • time-for-a-cure
    time-for-a-cure Member Posts: 67
    edited June 2019
    Options

    Hello Everyone - my story is similar to others on this site. I was first dx in Dec 2012 and had surgery in early 2013. The surgeon had difficulty getting margins, so after two attempts, I started chemo, then had a third and definitive surgery after chemo. I was node negative, no others sign of disease. I then had radiation and started arimidex. After 15 months on arimidex, i had a huge Supraclavicualr node (on the opposite side) that bx positive for breast ca. After a couple rounds of abraxane, I went on femara and ibrance. I had a very positive response, with the node quickly shrinking. I then had the node removed and radiation to the site. There was no evidence of active cancer in the node when it was removed.In summary Iwas treated quite aggressively. I have been on Ibrance for over 4 years. The questions are 1) do i still need the Ibrance? 2) should i go Down to just hormanals? 3) is there a time of being NED, after which you don’t t need treatment.

    Any one else in a similar situations? Any other thoughts?

    Thanks. Kitt

  • heidihill
    heidihill Member Posts: 1,856
    edited June 2019
    Options

    I was oligometastatic as well and treated with everything possible at the time (chemo, surgery, radiation). No Ibrance then yet although onc did mention it when it was in the pipeline as something very promising. I have been on antihormonals for all the 11+ years I've been NED. I also switched between them due to side effects.

  • Faith123
    Faith123 Member Posts: 26
    edited June 2019
    Options

    Hi guys,

    My story:

    I found a breast lump while I was 3 months pregnant in 2016 at the age of 28, kept telling my Gynae about the lump and she didn't really take me seriously considering my age(I know :-() after giving birth In August 2016 the my nipple started oozing aBrownish discharge and that's when I panicked,Drs started panicking for real when there was basically blood coming out of my nipple;had a biopsy done and it turned out to To be DCIS,My surgeon was happy about the margins and two lymph nodes which also came back clear,my surgeon at the time advised I get a mastectomy because of how large the lump was and my oncologist suggested hormonal therapy aswell (Tamoxifen) which I ended up not even taking and a few months after that in 2018 I fell pregnant again and gave birth in November.

    Fast forward to last month I went for a scan because I have been having some backache and that's when they found a lesion on my spine T11/12.

    I was sooo devastated,I feel like so many things went very wrong in the beginning and that's why I'm here.

    So now I'm currently doing radiation and afterwards will have chemo done, and I was just hoping for aggressive treatment to I can get rid of this thing.

    My kids are so young 2 and 6 months and I'm running a Construction company which requires so much from me,there's just a lot that I still want to achieve.

    I just wanted to find out in the case of bone Mets because the cancer eats away at the bone,how do Drs know treatment is working?

    Anyone else with a story similar to mine?

    God Bless xx

    ER/PR ++ Her2 +

  • heidihill
    heidihill Member Posts: 1,856
    edited June 2019
    Options

    I'm sorry you find yourself here, Faith. There is a bone mets thread with lots of helpful folks. As a bone metser with also just one lesion in my spine, I can say you will be scanned at intervals to see if treatment is working. In my case after 5 rounds of chemo my scans were clear, meaning that the treatment worked! I should add that there are studies showing chemo works better if you start bisphosphonates or xgeva, another bone strengthener, asap.  I don't see a drawback combining it with radiation as I also had bisphosphonates with radiation (after chemo) but best to ask your doctors. You will get to see the kiddos grow up!

  • screech
    screech Member Posts: 63
    edited June 2019
    Options

    Faith - I had just one met like Heidi. I was also bi-lateral-both ER+ both HER- but only one PR+. They threw everything at me like Heidi-chemo, then surgery, then radiation. The met was gone by the time I finished chemo, then the double mx and radiation cleaned everything else up. I was scanned every six months for about 3 years, then one nine months after that. Now they say they will just scan me if my markers go up or we have a concern due to pain or whatever. I still go quarterly for a zometa infusion and I have taken aromasin (exemastane) since Sept. 2014-I guess that's about 4.5 years now.................and at this moment in time I'm having a pretty good day! I wish you the best of everything.

  • AllyBee
    AllyBee Member Posts: 99
    edited June 2019
    Options

    Thank you for starting this thread Kelly. I'm a bit hesitant to say I belong here and my oncologist has never used this term, but I thought i'd introduce myself anyway. I was diagnosed in late 2016 with TNBC, also after my doctor dismissed my concerns as I'm too young, no family history etc. I had two positive lymph nodes after lumpectomy and axillary node clearance. I had an enlarged lymph node in June 2018 which started a series of scans where they found a single brain met. I had a crainiotomy and have been on chemo ever since. I've been NED since my first follow up scan after the crainiotomy and had another clean brain MRI this week. Deep down I know brian mets have a poor prognosis and it's only been a year, but I've already outlived some of the stats I read when I first found out. Last year I was scared I wouldn't see my son start school and he's now been in school almost 6 months. :)

  • olma61
    olma61 Member Posts: 1,026
    edited June 2019
    Options

    I appreciate hearing everyone's stories and your treatment plans. I think I am going to make an appt with my surgeon after my rads are done and I get couple of other issues out of the way. I haven't been back to see her since she referred me to the cancer center I am being treated at now. I want to weigh the options and make the best decision I can while it is still pretty early in the game.


  • Faith123
    Faith123 Member Posts: 26
    edited June 2019
    Options

    Thank you for your responses.

    I really hope everything works out for everyone.

    I was hoping for surgery to get rid of the lesion but my Drs are not too keen and besides it’s in such a bad area (spine).

    Hope everyone is having a super day!

    Nerdy

  • kelq
    kelq Member Posts: 56
    edited June 2019
    Options

    Thanks so much for sharing your stories and situations! I have only been in this boat for 6 mos, but I learn so much from all of you!

    Kitt - my doctor said no matter what I decided to do surgically, I would remain on I/L. That being said opinions differ, so definitely ask about that one. Seems like the letrozole is the one that gives me the most trouble - I wish I could get rid of that one! One can dream, right?!?

    Heidihill - 11 years?? Way to go! Wishing you continued health and NED!!

    Faith - take some deep breaths and take it one day at a time! Bone mets have a better prognosis than solid organ mets and you are young. Younger people seem to have better stats and more surgical options. You'll be around to see your children through their milestones! As the years go by, newer and better treatmets will step in and keep you going. Look at Heidihill with 11 years under her belt (and thats without ibrance!)

    AllyBee - seems like the stats are really outdated (and you are proof of that!). If your brain mets resurface, would proton beam radiation be an option for you? We have a proton center here in Chicagoland and I know people are opting for that over traditional treatments.




  • olma61
    olma61 Member Posts: 1,026
    edited June 2019
    Options

    Faith, if you are getting radiation to the spine met, that's pretty close to "surgery"! It's local therapy to remove the cancer. I do not think surgery is done routinely for spine mets, it is done for compression and I think for large tumors that are causing pain. If you were told you don't need it, that's a good thing.

    And I will add - after just chemo with herceptin and perjeta, my bone mets were healing with no metabolic activity on a PET/CT scan. Yes, they can heal, even the lytic lesions that eat away the bone. (Also on Xgeva since day one)

  • AllyBee
    AllyBee Member Posts: 99
    edited June 2019
    Options

    Kel, I do hope to be that rare case that the stats don't apply to at all, we probably all do. Yes I most likely will do focused radiation if something else pops up. I'm sure it will be caught early with the number of scans I do. I was all set to have GammaKnife for my brain met but the GammaKnife team didn't think it was the best choice, partly because of the depth, partly to check the tumors pathology and partly given it was the only site they thought surgery would give the best survival for someone my age. Funny I don't miss that little piece of brain at all, it's reassuring to know it's all removed in one go. SillyHeart

  • B-A-P
    B-A-P Member Posts: 409
    edited June 2019
    Options

    hi Faith !

    Our stories are very similar. I was 30 at diagnosis but went through two years of back and forth with my drs and specialists begging them to help me. I had pain in the inner and underside of breast, right where the cancer was and then as time went on , I had oil coloured discharge . They said “oh that’s normal!! You’re too young for cancer “

    Three months later it started to bleed and even then the surgeon was like “well your nipple will be deformed and you won’t be able to breastfeed if we take the duct out “

    I told her I wanted the biopsy.

    Dx with DCIS after surgery. Two months later I had an MRI and they told me my whole breast lit up including lymph nodes , so more biopsies and mammos. Node biopsy positive , Mammo says dcis. So petct scan. dr says “your scan was great !” But then tells me “a tiny spot on your Liver lit up but we don’t know what it is yet. It’s too small”

    I was devastated! I had begged for help and it got to stage four , so I know how hard that is . And I had a three year old at the time. I cried for days and weeks thinking I wasn’t going to be there for him.

    As time has gone on, I have become more confident that I’ll see those milestones we crave , but there are times the fear creeps in. I am currently NED and only on anti Hormonals. Will be having an oopherectomy next month and put on an AI. I’m nervous but I will take the SEs as they come (if they do)

    Anyway, i totally understand all your feelings. Hopefully you’ll hop o the Ned train and enjoy all those moments you want with your kiddos. It’s possible !!

  • AllyBee
    AllyBee Member Posts: 99
    edited June 2019
    Options

    B-A-P, that makes me so mad, i'm glad you're doing so well though :) I think they need to reeducate doctors that breast cancer occurs in young people and people without family history as well. The first Dr I saw about the pain in my breast said it was nothing to worry about, i'm too young and that it was probably just hormonal changes. I was 33 when first diagnosed. It was only about 3 months before I saw a second Dr who also thought it was nothing but referred me for some scans. I try not to dwell on it but It's hard not to wonder if things would be different if that first Dr took me seriously.

  • B-A-P
    B-A-P Member Posts: 409
    edited June 2019
    Options

    Allybee,

    I totally agree. Doubt my family dr will brush anyone young off again. Though I gotta say he was great. Where I live his hands are tied with certain testing like MRIs. He got me an ultrasound but the radiologist was very quick and didn’t take a big look because she said I was too young.

    He sent me to a specialist who told me my coffee drinking was the cause of my very specific, one sided pain *insert eye roll *, breasts just hurt , no scans needed because I was too young. That was in 2017. I too, wonder if we had caught it then, if I’d be in a different spot. 2018 winter , was sent to the other breast specialist in my area because my dr really wanted the mri done . And my post above describes how she handled it. *eye roll *



    Totallyhard not to dwell on it but I try to remember that we are where we are and no amount of dwelling on it changes anything. Still sucks !

  • olma61
    olma61 Member Posts: 1,026
    edited June 2019
    Options

    I am so sorry to hear about the misdiagnosis and not being taken seriously for all you younger ladies. There definitely does need to be some re-education for these doctors. My heart goes out to you all. <3<3<3

    About AI's I am on Arimidex (anastrozole) and the crampiness and aching and fatigue was pretty bad in the first few months, and in December I was tempted to ask about switching to something else. I really felt worse on the Arimidex than I did on Taxol (I joke that maybe the pre-chemo steroids had me high) But - I seem to have adjusted to Arimidex now and I am not experiencing much except still loving to sleep too much (which maybe is not due to the AI at all).

    So - give it a few months before you think about switching. It took about 6 - 7 months for me to adjust. Exercise can help with the aches and cramping, too. It is good to save the switching for later, just in case.

  • kitkit
    kitkit Member Posts: 29
    edited June 2019
    Options

    Hello everyone,

    I'm kitkit, and I am keeping my fingers crossed that I can cross into the oligo category. My info:

    2010 - LCIS - lumpectomy and exemestane for 7 years

    2019 - Stage 4 Invasive Lobular in following areas: axillary nodes, hilar chest, and T6 met. I had gamma knife to T6 and hope it's gone. The lymph nodes are left. I am on cycle three of I/L and due for scans in late July. My doctor says that if the lymph nodes are shrunk he recommends axillary node dissection followed by radiation. Then I "could" be oligo.

    He also mentioned doing chemo (not full bore) between the axillary dissection and the radiation but I have some question that perhaps some of you can answer. My reading is that chemo is not effective for lobular cancer. Why would I go through the chemo side effects and perhaps permanent damage if it won't work on lobular cancer. Has anyone had it?

    Best to all,

    kitkit

  • mshar
    mshar Member Posts: 19
    edited June 2019
    Options

    Hi kitkit,

    I'm keeping my fingers crossed for you as well! I was diagnosed with de novo metastatic ILC in September 2018 with bone mets and positive lymph nodes. I started chemo pretty much right away and did 12 weeks taxol, followed by 4 weeks of AC with scans in between. After taxol, the scans showed no more activity in the bones or lymph nodes and the main tumor had shrunk by half. After AC, there was no evidence on MRI or PET CT of the main tumor either, although the biopsy did show some scattered cells remaining in the main tumor area. I'm ER+ so I'm now on ibrance and letrozole, and hoping things stay that way.

    The side effects really do hit everyone differently. Taxol wasn't too terrible for me - I kept working and my only noticeable symptom was some hair loss towards the end (despite using a cold cap). AC was really tough - I had lots of nausea and the chemo really messed up my digestive system, so I had to stop taking the constipating anti-nausea meds. I did lose all of my hair. One of my toenails stopped growing, got infected, and I had to have it removed (sorry for the graphic details).

    The road out of that was tough but 5 months later my hair is about 3 inches long, my toenail has grown back, and my digestion issues have all resolved. It's not an experience I would wish on anyone but it was manageable and (personally) very worth it when I found out the scans showed no evidence of any tumors. I found the AC threads on this site extremely helpful for setting my expectations and making me feel prepared to face it. Everyone's experience is different, and I'm lucky that chemo didn't leave me with permanent side effects (as far as I know), but the chemo definitely has been effective against my ILC.

  • divinemrsm
    divinemrsm Member Posts: 6,209
    edited June 2019
    Options

    There is so much misinformation out there. I haven't ever read chemo doesn't work on lobular carcinoma. I was diagnosed with stage iv lobular carcinoma with mets to the bones. I had chemotherapy right away, which was cytoxan and taxotere, followed by lumpectomy then radiation. Then I began taking Arimidex.

    From the time I started chemo, I did not have any progression of the disease for 8 years!

    And let me tell you, one doctor I saw for disability claimed I couldn't live this long with mbc and so I must really only have arthritis. What a quack.

    So I dispute any reports tha chemo doesn't work on lobular carcinoma.


  • olma61
    olma61 Member Posts: 1,026
    edited July 2019
    Options

    I want to update and share what my MO said at my appointment today. This is the first time I’ve seen her since my rads last month. She brought up the recent studies about improved Stage IV survival with surgery and said if my next scan is clear we can consider surgery - “lumpectomy” excisional biopsy and then radiation to the breast.

    I’m impressed and happy that she brought it up without me asking about it. Next scan is October...I feel fine and hopefully, will be fine and we can go from there.