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Oligometastatic Prognosis

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  • heidihill
    heidihill Member Posts: 1,856
    edited July 2015
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    Good luck on your treatment, HLB! Oligoprogression sounds good in the scheme of progression things.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995374/

    Newer article on oligometastasis above which provides more info on what this is all about as well as treatment options.

    The oligometastatic (OM) state implies that a few metastases (usually ≤ 5) exist before tumor cells acquire widespread metastatic potential []. Some tumor cell characteristics (altered cell adhesion, intravasation, and bloodstream survival) seem to favor the metastatic spread [], while others such as tumor dormancy could result in limited dissemination []. OM phenotypes have also been recently identified from various tumor types and metastatic sites, showing different genetic signatures between patients with few or many metastases []. A current refinement is the concept of oligorecurrence, i.e. patients with a limited number of metastases and controlled primary tumors []. Clinically, OM BC is characterized by solitary/few detectable lesions, usually limited to single organs, in which local therapy with curative intent could impact survival. This population of 'potentially curable' stage IV disease is estimated to be 1–10% of newly diagnosed patients with metastatic BC (MBC) []. A multimodal approach is endorsed for these selected patients [, ].

    Edited link to go to top of article as opposed to a footnote.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,778
    edited July 2015
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    Heidihill,

    Thanks for posting this link. It is one of the best and most readable articles I've seen on oligomets, as well as being fairly recent. Although the studies cited are small and retrospective a few things stuck out for me;

    - Possible under staging at initial dx. If there are no symptoms, or other reasons to suspect mets, they may not be found. This really hit me, because my met was discovered during an unrelated PET. Had it not been for that "accident", I would have remained at IIB until ???

    - Surgery of primary tumor may have a positive impact for those with oligometastasis. Many women who are dx'ed stage IV from the outset do not have mastectomies. The study shows that it, mx, may be beneficial to those with oligometastasis. Additionally, it points out that due to improvements in surgical techniques and anesthesia, some of the risks associated with surgery (as an argument against mx) are no longer valid.

    -Targeted use of local therapy for curative, rather than palliative intent. We often hear that rads are used for pain relief of bone mets. However, rads for rendering the bone met(s) inactive seems beneficial. My RO was aiming for that, since I had no pain, and thus far it has been effective. Interestingly, it states that roughly 25% of women with bone mets have no symptoms (at least early on).

    There is much more of interest in this article that deals, specifically, with limited mets to the visceral organs in addition to bone mets. It raises many,many questions but lends legitimacy to oligometastasis as a sub-group of MBC, which some had previously questioned. Also, it is really only 22 pages, not 36 since the last 14 pages are the footnotes and citations. Definitely worth the read.

    Caryn

    PS: I only commented on bone mets because that is what I am familiar with. I realize that oligometastasis can occur to organs as well, but my knowledge is very limited in those areas and I didn't want to misspeak. My apologies

  • Goodie16
    Goodie16 Member Posts: 297
    edited July 2015
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    That was a very interesting article. My onc recently used the OM term with me. I was originally dx'd as stage 1A and had a mx with clear margins. Low onctoype score and no chemo was recommended. My brain met was discovered during my initial scan work-up after my diagnosis, but 2 oncologists and 2 neurosurgeons thought it was a cavernoma, not a brain met. Surgery to remove it confirmed it was a brain met. I've since had GammaKnife to the tumor bed and my last scans in June were NED.

  • HLB
    HLB Member Posts: 740
    edited July 2015
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    Thank you Heidi! And thanks for the interesting article. I think I'm starting to believe that anyone with a certain # of mets (I dot know what that # should be) should be treated locally if they want. Until they can say with reasonable certainty who will not benefit, why not. Yes, there's always the expense but compared to the price of systemic drugs its not that much. This Dr I am seeing asked me to sign a form allowing them to call me and keep track of how I am doing for their own "study" on how this treatment helps or doesn't help people. He also wants frequent scans so that anything that pops up can be treated quickly the same way.
    I hope this becomes a standard way to treat people because not everyone can travel for treatment.
  • heidihill
    heidihill Member Posts: 1,856
    edited July 2015
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    Wow, Goodie! Speaking of understaging, you got it in spades. Lucky they found the brain lesion and were aggressive. So happy for you on NED!!!

    Caryn, I have no medical degree either and probably misspeak a lot. But hey, doctors get things wrong all the time as well.Loopy

    HLB, I agree that OM treatment should be more standardized. For me, at least, the insurance company has recouped quite a bit of their investment with the premiums I continue to pay after 8 years.

  • rena_helene
    rena_helene Member Posts: 6
    edited July 2015
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    I haven't visited this forum in quite awhile, but I'm glad I did today! My history sounds like a lot of you gals who believe in OM, even if all the oncs don't necessarily. I was diagnosed two years ago today (happy anniversary to me) with Stage II, had a bliateral mastectomy w/axillary dissection in Aug 2013, then had appointments set up to start chemo, but my breast surgeon recommended the CT scan/bone scan in September first. Results were that I had a bone met in posterior rib. Chemo was off. I had 23 RTs, targeted on the met, in February 2014, and I now get scans every 6 months. I am also taking Tamoxifen and Lupron. Rib lesion has gotten more sclerotic with every scan and no other lesions have appeared, so I have been NED for about 18 months now. Do I fit the profile for OMBC? Sounds like...

    I don't know what this means for me since so far, I have only been able to "live" for 6 months at a time...that fun time between scans. I was talking with my husband yesterday about retirement, and how it sucks so much that I probably won't make it (I'm 46 y/o). I considered stopping contributing to my 401k, because, really, why bother? If I can use the extra $$ now and go more places and do more things, shouldn't I? It is so confusing, especially now that I *may* be in a category where I have the chance to live an almost normal life. I'm someone who needs a plan to move forward, and I have NONE at this point given the current atmosphere of waiting for the other shoe to drop. Sometimes I almost want that shoe to drop so that I can actually make a plan. I know, I know, that's a horrible thing to think.... dark thoughts, sometimes...especially around scan time.

    Anyway, I'll tune back into this topic more often now since it seems I have some ladies with something in common with me. Peace out (as my 11-year old daughter likes to say)... :-)

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,778
    edited July 2015
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    I met with my mo last Friday (did not post, because I got caught up in the skin cancer scare, which thankfully, turned out to be an angry pre-cancerous lesion). I raised my concern over the fact that I sometimes felt like we weren't doing "enough" to keep my bone met in check and that others, on bco, seemed to be going much more aggressive. I mentioned how quite a few women were happy that their mo's were throwing everything but the kitchen sink at them. She smiled and said she would do that too, if she felt my situation merited it. She pointed out that my bone met was dead and that I'd had no progression since dx (2011). She feels I clearly fall into the OM camp and that the rads to the bone met did constitute aggressive local tx. I guess I needed to take a step back and realize that she was tailoring my tx to me and my situation, using the knowledge and information that is currently available. So, although tx for OM could do with a bit more standardization, and doctors need to agree that OM even exists, it is nice to know that mo's can also tailor txto meet an individual particular case.

  • HLB
    HLB Member Posts: 740
    edited July 2015
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    Tomorrow will be my last of 5 treatments of SBRT to the 3 active lesions on my spine. Just want you all to know that if you have a limited number of lesions this is an option being offered at UF Shands Gainesville by Dr Okunieff, my hero. Its also offered at their facility in Jacksonville. Everyone who works here is so nice and caring and positive! I was able to stay at the Hope Lodge for free during treatments. My treatment takes about one hour each day. It was not quite as easy as I thought but still pretty easy. A few hours after the first treatment I vomited pretty bad, with retching after nothing was left. Then when that was finally over I had another milder episode about a half hour later. It kind of brought the reality back to my mind that it is a pretty intense treatment. And I got homesick and wanted my parents because I'm a bit of a baby like that. But I got zofran and had no problems at all since then. Time will tell if this treatment was worth doing but I really did not see any downside to doing it. There's a less than 1 percent chance of paralysis which I am willing to take the chance to see if I can kill these 3 mets and maybe, just maybe go a long time before any more show up, while of course staying on systemic treatment. Just wanted to let you all know how it went, and if you are "oligo" you might want to check it out! I have a total of 7 mets so I don't really think of that as oligo but he was willing to treat me anyway, calling it oligoprogression. I am very grateful for this opportunity.
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,778
    edited July 2015
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    HLB
    Thanks for letting us know about SBRT. I do like the idea of using rads with the intention of killing off the little buggers. I wonder why many mo's say that rads should only be used on bone mets for pain relief? Anyway, congrats on almost being done 👍.

    Word nerd that I am, I had to find out what oligo meant. It is from the Greek, oligos, meaning few or scattered.
  • HLB
    HLB Member Posts: 740
    edited July 2015
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    Thanks Caryn, I think they should do it a lot more than they do. The only reason they don't that I can think of is that they believe it won't help anyway. I find that hard to believe but even if it doesn't impact OS I would think it does impact PFS and QOL.
  • divinemrsm
    divinemrsm Member Posts: 6,018
    edited July 2015
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    Not sure what SBRT is.

  • HLB
    HLB Member Posts: 740
    edited July 2015
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    I just noticed in the original article posted by Coolbreeze about waiting for symptoms to test for mets. Mine were found by the tm going up and I have never had any synptoms. So far I've had 3 years of pretty much nrmal life. Who knows how things would be if I had waited for pain. I would have probably needed vertebroplasty because these mets have never caused pain for me. I definitely think that at least the blood test should continue to be done after initial treatmwnt of lower stage cancer.
  • HLB
    HLB Member Posts: 740
    edited July 2015
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    Divine, Stereotactic Body Radiotherapy. Its more precise and intense and therefore less treatments than standard rads. Meant to kill the tumor completely with less damage to surrounding tissue. They went at it from 8 different angles with a machine that goes around in a circle. They make a mold of your body that you lay in, and do a ct each time and line that up with the first ct that they did at set up so that you are in the exact same position. I was counting the beeps yesterday. At each position they did 9-11 beeps. I think it almost like drawing a line around the tumor so they get every spot.
  • divinemrsm
    divinemrsm Member Posts: 6,018
    edited July 2015
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    Wow, it sounds both intense and precise. Is this for the original tumor found in the breast? Or for sites where it has traveled in the body? The treatment I was given was chemo, a lumpectomy, then 33 rounds of rads to the original tumor site, so I have an idea of how grueling rads can be, but felt it was very much worth it

  • HLB
    HLB Member Posts: 740
    edited July 2015
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    This was for the mets on my spine that were still showing activity. T6 T12 L2.
  • teacher911
    teacher911 Member Posts: 152
    edited August 2015
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    HLB, I had SRBT in April of 2013 and have been NED ever since. The doctors were trying to decide between surgery to remove the rib or radiation and we chose the radiation. I am so happy to have gone that course. I wish you well and hope you have great results.

  • HLB
    HLB Member Posts: 740
    edited August 2015
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    Thanks Teacher! Did you just have one met? I'm so glad you are still NED. I think this treatment has made me constipated and if I was not taking zofran I think I would still be vomiting. I'm not noticing anything else. Curious to see what my tm will be as it was on the rise for almost a year before this.
  • teacher911
    teacher911 Member Posts: 152
    edited August 2015
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    We are all so different in our responses to treatment. I had several mets in one area, higher up in the rib cage. I was fortunate not to have any nausea, or constipation. I have heard that many suffer from that. I hope you will be able to get off the zofran soon and not feel like vomitting. Also, my tumor markers went down but my liver enzymes went way up. No one was able to tell me why and eventually they did come back down.


  • HLB
    HLB Member Posts: 740
    edited August 2015
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    Thanks for the response. Interesting about the liver. If that happens I will know why. They seemed perplexed about the vomiting and said its usually only seen in men and sometimes younger women. I was expecting diarhhea but go figure, that is the opposite too. Take care
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,778
    edited August 2015
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    HLB,

    Zofran is known to cause constipation, leaving you with an unpleasant choice. Vomiting or constipation? Hopefully, you can get off the zofran soon. Until then, prunes and prune juice might be your friends 😉.

    Cary

  • josalive
    josalive Member Posts: 53
    edited August 2015
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    Hi everyone -

    I thought I'd just check in and let you all know that I just got finished with my laparoscopic RFA procedure to my single liver met and will have my lumpectomy next week. While the surgeon was in there they did an ultrasound of my liver to confirm that only the single met was there. They didn't find anything else (they check in case there are smaller mets that wouldn't show up on a scan). The original met was 2.5 cm and after the chemo he believes it was 'dead' but took a biopsy and did the RFA just to be sure. The doctors are treating me as oligomaetastatic and think that killing the single metastatic tumor and getting rid of everything in the breast along with chemo will give me the best outcome. The RFA procedure wasn't too tough (one night in the hospital and some pain that is manageable with Percocet). I hope these aggressive treatments end up helping me in the long run because they're certainly no walk in the park. But it gives me some comfort to know we are doing everything we can. I will continue on Herceptin and Perjeta every three weeks and after the lumpectomy and radiation we will cross our fingers and enter into the 'hold your breath and scan every three months' phase.

    I will keep you all posted on how the next few months go. I hope everyone is doing well

  • Boo123
    Boo123 Member Posts: 119
    edited August 2015
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    Hi Josalive, god to hear that the laparoscopy showed no further little visitors, and the the RFA got the unwanted ones. I am so pleased for you! Best wishes for a speedy recovery after the lumpectomy. The treatment will all have been worth it to get you to NED, and I hope that that is how things then stay for you. Best wishes, Boo.

  • HLB
    HLB Member Posts: 740
    edited August 2015
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    Josalive, best wishes to you!!
    Caryn, I did not know that. No wonder I'm having trouble. Even laxatives did not seem to help as much as usual. Yes, unpleasant either way but I think the vomiting is worse. I feel more nauseaus now than during the treatment. Hopefully it will subside soon. Must have damaged my system.
  • jhammel
    jhammel Member Posts: 4
    edited August 2015
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    I haven't posted here in a long time, but a couple times in the past I shared my wife's diagnosis and treatment of two small metastatic tumors - one in her lung and one on the spine - over 8 years after initial stage 1 diagnosis and breast surgery. Both metastatic rumors were removed surgically, and she has been NED ever since for over 5 years now. She did a few months of post-op chemo and still does hormonal therapy and Herceptin, so it's impossible to know if surgery alone or those treatments as well are responsible for the long term success. We know she islucky with how things have gone so far.

  • HLB
    HLB Member Posts: 740
    edited August 2015
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    Jhammel, that is great! And proof that sometimes it is certainly worthwile to treat mets locally. Best wishes to you and your wife for many many years of continued success!
  • Ieva
    Ieva Member Posts: 20
    edited August 2015
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    HLB,

    can I ask, please, what were the Gy doses for Your 5x SBRT ?

  • HLB
    HLB Member Posts: 740
    edited August 2015
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    Leva, sorry, I have no idea. I did request my records be sent to where I am treated locally, so I will look it up when I go back to work next week.
  • JanRobbins
    JanRobbins Member Posts: 1
    edited September 2015
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    Dear Bobcat86 and other ladies who have been recently been diagnosed oligometastatic,

    I hope that my post might be of help to you while seeking treatment. I just returned from a very positive visit to MD Anderson where I was seen as a candidate for Dr. Strom's currently open clinical study. This study offers IMRT and/or surgery after a person has undergone one of the following: chemotherapy, hormonal therapy, or targeted therapy for 3-9 months. Dr. Strom shared stories of ladies who are now 13 and 16 years post treatment!

    Even though I have had 3 months of Tamoxifen and Denosumab for 2 months with very slight regression to my lesions, I was offered AC-T before the IMRT. My MO at UAMS is requesting clarification regarding whether I have to have the AC-T because she feels I should hold back on this aggressive strike given my recent and limited regression. Waiting to hear what they decide and will post again when I know for sure.

    Meanwhile, I wanted to share that Dr. Strom was so positive and awesome about explaining the treatment! He discussed distinct patterns of metastases in different Breast Cancer subtypes which was new information to me. He also said that he could offer aggressive radiation (slightly lower dose than the trial), if my MD Anderson scans showed more than 3 lesions. This type of treatment isn't available to me at UAMS.

    Good luck to everyone and I look forward to learning what other ladies are doing at this stage! I learn so much from reading everybody's comments

  • lbocken
    lbocken Member Posts: 2
    edited September 2015
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    HI,


    i am new to this group. I was diagnosed Stage IV at initial diagnosis and told I was ogliometastastic. After chemo, liver ablation, and mastectomy, i am now NED. I started on letrozole a few weeks ago. I am considering use of pacolicib/Ibrance to prevent recurrence. I am wondering if there are other OM folks that are currently in remission that have chosen to take this drug.


    Thanks,


    Lisa

  • moderators
    moderators Posts: 7,966
    edited September 2015
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    Dear lbocken, Welcome to our community. We are sorry that your breast cancer brought you here but we are glad that you reached out. This is a warm, caring and well informed community of others with similar stories. We hope that you will connect with those who can be helpful to you and vice versa. Here is a link to information on our site about Ibrance. We look forward to seeing you here on the boards. The Mods