Oligometastatic Prognosis
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Hi Jan Robbins,
It has been awhile since I have been on. I had been in contact with MD Anderson back in June at the time I still was with Sloan. I had read a lot about dr Strom he was one of the first articles I read and he gave me hope!!! I finally left Sloan the doctor tat Sloan was treating me palliative and very nasty. Every time I brought up anything he gave me a hard time. I Found doc from co worker immediately he stated that he believes that I am oligometastis I have two lesions and responding tto Femara and Ibrance the Breast tumor is extremely small now and the two lesions also have shrunk in size. New doc states he is going to treat me as if he can cure me! I have had srbt to one lesion awaiting srbt on the second lesion at present, then a masectomy. Please keep me informed on how you are doing. I hope all goes great for you. What is UAMS? Will MD Anderson work with your MO? I thought that you had to turn all your care over to them? I will keep you in my prayers that you met the criteria and do great?
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I'm definitely not oligometastic, but I saw this trial on my hospital's trial list and thought it might be interesting to some of you who would be classified as oligometastic:
https://clinicaltrials.gov/ct2/show/NCT02364557
Sounds like the results will be really helpful for knowing how to treat limited bone mets!
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Ann Silberman*, of But Doctor, I Hate Pink, posted this article. Although it deals with visceral oligometastasis, it also contains a section on removal of the primary tumor, something not always thought necessary with de novo stage IV dx. I was very happy to see the increased recognition of oligomets as a sub-type of MBC, because there are still some who believe no such thing exists.
*Ann, though no longer active on BCO, is coolbreeze, the op of this thread
http://www.medscape.com/viewarticle/862419
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Thanks, Caryn! (BTW,
on your new avatar!)The article above can also be found by googling the article number or the title:
Metastectomies: Local Approaches to Breast Cancer Metastases
Oops, sorry for the bold print.
I'm also very glad they now are aiming to get some oligomets patients to complete remission through local control.
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Hi, was wondering if anyone on this thread may be able to help me understand why two different MOs have different opinions on whether I have Ogliomets. Original cancer was found in February 2011. It was stage 2. Interesting I had a very small amount of pleural effusion then but they stated it was from pneumonia I had two months earlier. I had surgery, chemo and radiation. They did go back to check effusion and it was gone. In September 2015 was diagnosed with Mets due to one lymph node ( hilar node) in lung that was found positive for BC cells. I also had a small amount of effusion. Lymph node back to normal and effusion gone after 6 months of letrazole and Ibrance. One MO states he would say I have Ogliomets and other MO states no she would not say that as the cancer was in my lymph node in my lung. I am confused about this as whenever you have Mets it moves through the lymph system or blood. Does anyone who understands Ogliomets more than I do, have any feedback that could help me make sense of this? Thank you!
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I started with one bone lesion and told I could be considered ogliomets. However, the doctor told me that a very low percentage of people considered ogliomets (which he defined as one lesion-regardless of location), remain ogliometastatic. He gave me the choice of going through extremely harsh chemo that could do damage for a less than 5% chance of being cured, or proceed as if I had stage iv and treat with the idea of prolonging my life and quality of life. I think the definition of ogliomets is less important and what is more important is that you understand the treatment options and suggestions regardless. I chose to go for prolonging my quality of life. I'm 5 years past stage iv diagnosis and doing well. I've had 2 progressions but switching meds has brought me back to stable each time.
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Thank you for your response Karymic However, I am more interested for prognosis reasons. I would not trade or change my treatment as it is working very well, but my understanding is that oligiomets may have a better prognosis for long term survival.
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The general definition of oligomets is no more than 3-5 lesions to the same organ or bones. There remains one problem, as there are doctors who don't recognize that oligomets are a sub-group of mets. They believe mets are mets, period. Although there have been some studies on oligomets that indicate longer survival for those with limited mets, I would not call these studies prognostic. They are retrospective only. I hope that studies continue in this area, particularly seeking to find out why some with limited mets never progress or have long progression free periods. .
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There is a lot of disagreement. I believe exbrnxgrl and I both were diagnosed with one bone met. Hers was femur (if I remember correctly) and mine was L2 vertabrae. I don't think exbrnxgrl has progressed at all (help me if I'm wrong???) and I have had 2 progressions. So prognosis is a really tricky thing. There are so many variables. I keep telling my oncologist that it would really help if she could give me a ball park date of death, as I am a planner, but she just won't do it!!! ;-)
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Kay,
Your memory is great and you are correct about my path, so far. Prognosis is darned near impossible, as far as I can tell and the fact that there is a disagreement about whether or not oligomets are a different state than mets in general, means that we are not any closer to saying if limited makes clearly make a difference. As for me, I'd like to believe that it does and that's why I've done so well, but who knows?
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I am new to this, diagnosed at stage 4 de novo just a few months ago with a single bone lesion and am categorized as oligometastic but whether I stay that way or not, who knows. My MO did mention current discussions in the medical field about redefining the stages. I consider myself stage 4 lite, lol.
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Both MOs "believe" in oligomets.. My question is why one of them states I dont have ogliomets based on the fact that the one area we know of is in a Lymph node in my lung. I am trying to understand why having it in a lymph node vs a straight up mass is making the difference on determining whether she thinks it is oligiomets. Does anyone have any idea?
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Illimae, I like that term Stage IV Lite.
Singlemom, the definition keeps changing but, I agree, it doesn't make sense that having it in a lymph node is a critical factor.
From the 2016 ESMO guidelines - https://academic.oup.com/annonc/article-lookup/doi/10.1093/annonc/mdw544:
The definition of oligometastatic disease has been enlarged to encompass low volume metastatic disease, i.e. limited number and size of metastatic lesions (up to five and not necessarily in the same organ) and potentially amenable for local treatment which is aimed at achieving a complete remission. The development of minimally invasive surgical techniques and highly conformal ablative radiotherapy allow for safe and effective ablation of metastatic lesions in most locations. Although some retrospective studies have suggested that achieving a sustained complete remission seems to be associated with a longer survival [22], the true impact of these local-regional therapies on long-term outcome remains unknown, and prospective and if possible randomized trials are needed.
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singlemom, it's just a guess but maybe the issue is not the node itself but its location in the lung. Perhaps local treatment of that location is more complicated than nodes and masses in other areas, which is giving one of your MO's pause. Like I said, just a guess, otherwise I'm stumped, sorry
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My working definition of oligometastatic disease is metastatic cancer that should be treated with local or aggressive systemic treatment to get to NED. With oligometastatic disease, aggressive treatment may prolong survival so it is worth the collateral damage. The reason why we try to identify this group is to determine treatment strategy, not prognosis. Is it worth getting rid of the mets? Yes or No? With stage IV generally we do not do local treatment of mets because the cancer cells are everywhere. However, if there is a chance that the cancer is really localized in one organ in a few resectable locations, then it may be worth it.
I had five small mets in my liver up diagnosis and possible met to my sternum. I am free of metastatic disease in CT scans, but the PET scans do show mild hypermetabolic activity in my sternum and the radiologists claims to see some spots in my liver that are so small as to be immeasurable. The sternum hasn't changed in a year despite a strong response everywhere else, and the sternum is an area where you do get false positives on a PET scan. So I've decided it isn't cancer.
This leaves me possibly oligometastatic, but without any mets to treat. I still have cancer in my breast and my armpit. Not sure whether to take them out or not because surgery and lymphodemia are stressful and therefore promote cancer. I am looking at hyperthermia treatment of the primary met later this year if I have another good scan.
>Z<
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My second oncologist referred to oligometastatic when I was diagnosed. I had a solitary liver met that was 2.5 cm. We did the most aggressive systemic therapy and I did a lumpectomy, breast radiation, and liver ablation. I am currently on herceptin and perjeta and am in a vaccine trial and its been 2 years and I am currently NED. My first onc never recognized oligo mets and gave me 14 months to live and told me local therapy would do nothing for me. I quickly got a second opinion and found a new onc who could think out of the box.
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I'm a bit of an odd case, as my only met was to my brain. It was removed via craniotomy and I had gammaknife radiation to the tumor bed. My scans have shown NED since then, 2 years ago this past February.
My onc has me classified as oligometastatic, but said he has never treated anyone with oligo brain mets. He referred me to a larger, urban cancer center and they agreed with his treatment plan. Aside from my mastectomy, craniotomy, and gammaknife radiation my only treatment has been hormonals. I did have a complete hyster to be able to switch from tamoxifen to the AIs, but that's all for my treatment at this time. My onc believes in keeping "tools in the toolbox" until we need them.
As I passed the 2 year mark, I've stopped feeling like the other shoe may drop at any moment. I'm planning a little more long term and allowing myself to dream of the future again. With each passing day, my anxiety decreases a little.
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I have had this conversation with my oncologist 4yrs ago. My mets were ogliometastatic with 0 tumor and just a pleural effusion. This really helped me hold onto hope that my first line of treatment - femara, would work for years or decades.
I am not the case for everyone, but I am now on my 6th line of treatment four years later. Oglios tend to grow slow when they spread and the tumors, but thats not the case with everyone. 1 or 10 tumors, each body responds to care different and I wish that wasnt the case and we were all NED.
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Thanks Heidihill and Illinae for trying to answer my specific question as why being in the lymph node was causing MO to say it was not ogliomets!
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So far, so good for me. I believe that I have oligometastatic disease. In 2013 a small tumor was found in my bottom right lung lobe. I had it removed. Other than when I had my original 2011 diagnosis(surgery, chemo and radiation then), I have had no further treatment. Every 6 months I have a ct scan. Three and a half years ned to last scan in dec. 2016. I have been told this is unusual when I have Triple Negative Breast Cancer.
hugs Rose
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Rose - I am so glad to hear you things are going well for you. Thank you for your post.
>Z<
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Zarovka - You mentioned "the sternum is an area where you do get false positives on a PET scan" --- is this when it's not highly metabolic?
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Opinions please... I was diagnosed de novo in March 2015 (ER/PR+, HER2-, mets in my T3, tumors in breast). No surgery (except oopherectomy- I'm sure I spelled that wrong), no chemo (besides letrozole and Ibrance),no radiation... today at my oncologist appointment, he said that since I have oligometastatic disease (just in one very faint spot in my spine), I could have the option of having a lumpectomy (if they can even find the 3 tumors - thank you letrozole/Ibrance for shrinking) or double mastectomy plus radiation or gamma knife to my spine. I had found one research paper on this and had given it to him a year ago. He obviously never forgot it. He always said "but that was only one study". Now he's saying that maybe I was ahead of the curve and that is how treatment might go for those ogliometastatic disease. I wanted to get rid of the "mother ship" from the beginning and now he's saying it's a possibility. I DON'T KNOW WHAT TO DO! So much going through my head... what do you all think?!?
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I would talk to a surgical oncologist about the pros/cons. Mine discussed the benefits of surgery but stated that since radiation was to follow, there was no reason to chose mastectomy over lumpectomy in my case. I am responding well to chemo and can no longer feel the breast lump, if my post chemo scans are good, I'll have a lumpectomy in early June.
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This oligometastatic space is ambiguous ... no clearly right or wrong decisions. There is a possibility you will put yourself into remission with aggressive local treatment of your tumors, and a possibility you will weaken your health with radiation and surgery. Do what makes you feel comfortable, it's probably the right path for you.
I've got a couple more mets than you and have opted against surgery, for the moment. I would be looking at it more seriously in your shoes.
>Z<
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1derland, you may find this related thread of interest to you:
Topic: Removal of Primary Tumor Improves Survival for Stage IV MBC
https://community.breastcancer.org/forum/8/topics/...
You will find many different posts on that thread from which you may glean some useful information.
This is my post from the thread.
I had the breast tumor removed after being diagnosed from the start with stage iv bc.
My story: I found a lump which, after ilc malignancy was determined, a scan measured it to be 6.9 x 4.3 x 1.8 cm. (I recently got out my ruler and measured what this was in inches and thought, that was one big sucker). The onc and breast surgeon discussed neoadjuvant chemo with me to see if the tumor could be shrunk so I could have a lumpectomy rather than mastectomy. I really did not want to lose my breast(s) unless necessary. In the midst of these appointments, I had the pet scan that determined bone mets. I was still given the option of neoadjuvant chemo, so I had six rounds of taxotere and cytoxan and there was a noticeable, although not complete, reduction in the tumor. So I had a lumpectomy followed by 33 rounds of radiation. After that, I began arimidex in November 2011, and am currently still taking it. My scans over this time have read as either stable, regression or even ned and I reached the five year mark at the end of last year/beginning of this year.
Perhaps the only thing that surprises me in the study is that it had not been conducted sooner; apparently it started in 2007 begun by an oncologist inPittsburgh, Pa.
I would also like to add that I didn't have a sentinel node biopsy with the lumpectomy. My nodes were not shown to be swollen or enlarged on the MRI and I felt better not invading them.
Best wishes to you as you seek answers and makes descisions.
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I was diagnosed Stage IV de novo, too. My story is similar to Divine's, but I ended up having a mastectomy after the neoadjuvant chemo shrank the primary tumor, but not as much as the BS had hoped. In any event, it always made sense to me to surgically rid my body of the primary problem one way or another. Best of luck on your decision.
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