Oligometastatic Prognosis
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Ann - It would drive me crazy to have scans and have them not really know if it's something or not. If it comes to October and they still don't know, are they going to wait another few months? Or do a biopsy? I'm glad you get a chemo break, you need it, and not working (I know you hate that you are not working) may help you recover faster.
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Hi cool,
That is interesting that your ablated area shows higher uptake, as mine is the completely the opposite.
I have had 3 pet/ct scans since the Rfa, and the ablated area has a lower suv than the surrounding tissue. The Ir described it as a "dead spot" that each scan shows to be getting smaller as it heals.
Hopefully your scans in Oct will bring you more certainty.
Laurir0 -
Terry, CoolBreeze had a resection last winter. I think her surgery went well but she got C-Diff and it really messed her up for a while. I am sure she would talk with you.
Before I had a chance to get a resection we found out the chemo had completely zapped the huge tumor-tennis ball sized. Unfortunately it showed up again in my July scan. I had been clean in the liver since last Aug but now have a fairly sizeable growth again which is why I just started the Perjeta.
If I had a chance to be cancer free I would go for it.
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Ann..Thank you so much for all of the info..hopefully next scan will prove NED!!
lilylady..Thank you and I have PM'd her and discussed it with her..I am planning on having the surgery if scans comes back okay when I finish rads..Right now every new pain has me thinking its spreading before I get the chance to have it done as I am triple neg and not on any meds or chemo right now..Is Perjeta a pill? Praying we were all cancer free!!
Terry
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Greetings all, Always so good to hear that hoping for a long life has some support in the medical community!!!
I spent quite a bit of time six years ago when I was first diagnosed looking at the data on oligometastatic disease - what was available at that time anyway. I fit all the criteria except I was diagnosed (with 5 liver mets) from the get go. I had a strong response to original chemo but still lined up a surgeon willing to consider RFA after I made my case for olig status. There was one tiny met left at the end of chemo. However that disappeared shortly after I started Femara.
My chemo oncologist was and continues to be skeptical about the diagnosis of olig - in his eyes so little is known about all types of women who live a long time with metastatic disease and its unclear to him that the women reported in the studies might have had enduring remissions without the surgery part. The patient pool on the surgery side of these studies is highly selective - you have to be presenting with the most positive profile of all to even be considered (indolent disease, very low tumor burden, excellent overall health, treatment niave) and so the patient numbers overall are very small - nowhere close to what might be considered necessary in a chemotherapy trial. So the researchers have a very hard time being sure that these women were not actually being excellent responders to other aspects of their treatment. All the women were Stg 4 first line chemo, hormonal or even in some cases herceptin. Some women were stage 4 from the get-go so they had never had any form of treatment previously.
So in my case this is how it played out. I was NED for 5.5 years after TAC & Femara (Er+Pr+Her-), CA 15-3 at 0 for all of NED - went up to 10 at progression (<30 is considered within normal range). Progression was very aggressive - 8cm of liver tumor between 6 month scans...but interesting as it was a single met. Its not in the same lobe even as the original mets were. When reviewed at 3 months tiny indolent bone mets in the spine also identified although these could not be seen until they flared (healing response to chemo).
Current markers - ER and Pr still positive but dropping in degree of positivity and Her increasing but not yet in + range. Strong response to chemo again (60% reduction at 3 months) but l'm guessing I'll have less of a great response to hormonals this time around.
Would I do a resection now - no, I don't think my cancer is a fit. Its too aggressive and its changing into something different which likely means my responses to treatment will decrease over time and more cancer cells will be able to hide out. So even if I end up meeting the criteria again I think I'd be chasing a moving target. I might do RFA if I had a 6 months or so of otherwise stable disease. I guess I'd think about it the same way I'd think about a mastectomy after a stg 4 diagnosis. The research is unclear so you have to go with good advice and your gut.
We so badly need better studies and more attention paid to the details of whats going on with extended NED responses. I think there's more hope for more women buried in that data, I think its bigger than the olig story - but finding the balance between caution and hope is hard without more research guidance.
Sophie
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Sophie-what a great post. Realistic yet positive at the same time. I had high hopes last summer but my days of being considered oligo have passed me by. I fit all the criteria last summer but the surgeons wouldn;t consider it then because my tumors were so small-and the tiny remaining liver tumor was attached to the hepatic artery.
Now the latest descriotion of my lung tumors is "it looks like someon sprinkled rock salt over your lungs"-that was an ER doctor last weekend.
Interesting how your status is changing. Have they determined this by new biopsies? Us Her2 people have some real promising drugs available now. I just started on Perjeta which was approved in June and we have the TDM-1 maybe in 2014.
Thanks again for great post and best of luck to you.
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I think my point was missed, probably because I didn't express it very well. I think that local treatments should be used as often as possible especially to visceral tumors, as these threaten life. But if these are only offered to patients who fit the quite narrow criteria of oligiometastatic, then others will potentially lose out on gaining months and years. I think all women with the disease should be offered aggressive treatment. It may be "pie in the sky" but this is what I think. I am not against discussing the treatment of limited metastases, but I think more of us should be pushing for the treatments.
I have not been online for a couple of days as I had a short hospital stay for the work-up as it was called for theraspheres treatment. It went okay, and the beads go in in two weeks time. I had to push like crazy for this treatment, and there is no way that I would fit the criteria for being oligiometastatic.
I hope I have not offended anyone with this or my earlier post. Sometimes it's hard to figure things out!
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I guess we probably did misunderstand you. I see what you are saying now. I see so many examples of people going without tx on here that would probably benefit them because either their doc isn't aggressive or they aren't pushy enough themselves. You shouldn't have to be comsidered "curable" to get tx that might prolong your life or make your life better
You have to be your own advocate and I truly feel if you educate yourself as much as you can your doc stays more on his toes. I always give my guy homework-I don't think any oncologist could keep up with everything going on in all the different cancers. I get more out of my visits because he doesn;t have to explain every little thing.
I was just reading up on the theraspheres. How many mets are they going to treat and how big are they? Did they respond to the chemo at all? was this a choice between that or RA?
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Hi Lilylady. Thank goodness people are still speaking to me! To answer your question, I have "multiple" liver mets on all quadrants, so no chance of resection. I had taxotere until November 2011, and they did not reduce, but became stable. A new one showed up last April, but was eliminated with RFA. They got 2 others as well, but still plenty left. I continue on Herceptin and Aromasin, but my argument in pushing for the Theraspheres treatment was - the next move these tumors are going to make is Progression since all the treatment hasn't reduced them. I also said, let me have the treatment while I'm healthy. It will be harder if I'm having chemo or if my liver is already causing me problems. The docs accepted my point of view, and I'm getting the treatment. No guarantee of success, of course, but that's the same with any of our treatments. Worth a try, 'though!
My point with the oligio debate was, the label could be a disadvantage as well as an advantage. If you can benefit from a treatment you should get it, no matter how many mets you have got. Anne
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My liver met was @9cm when found back in November 2011, so I guess I don't meet the definition of ogliometastatic. Soon after the met was found, a T-DM1 (Th3resa) trial had just opened up at UPenn and they had me all lined up to join, but then I asked about being BRCA2. It just struck me odd how herceptin had "sort of" failed me - the cancer progressed into my skin while I was on it, and then again into my liver. Coincindentally, another trial had also just opened up for BRCA1/2 breast cancer patients (veliparib), so we decided to do that one first. This way, if/when I fail on the veliparib trial, I'm still eligible for the T-DM1 trial. If I had go on the T-DM1 trial and failed, I would not have been able to try the veliparib one, due to the exclusion criteria.
It feels so strange to not be on any HER2 targeted therapy, but it may be that the BRCA2 is the driving factor behind my cancer - I guess time will tell.
Off topic, slightly - The Th3resa trial is supposedly adding an ammendment to allow those who fail on physician's choice to cross over to the T-DM1. Also, I read on the her2support website that a few patients have been told by their oncologists that T-DM1 will be approved by 9/15/12, but I have yet to find proof of that via any online articles.
I am so grateful to Coolbreeze Ann for her research and findings!
Prayers and blessings,
Penny 0 -
Newer research on categories of breast cancer based on genomic studies probably does not support the idea of oligometastatic disease being a type of cancer, more that it was found early and therefore is more treatable, whatever genomic type it is. Just a thought.
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I just read an article that said they will apply for TDM-1 in Jan 2014. I will try and find it again. If it is like the Perjeta approval though it probably won't help those of us who need it most. On our Perjeta thread (Perjeta was approved June 6) I think only 1 person has insurance approval. FDA approved it for Stage IV first line chemo only. Well that would have worked for me 19 months ago but I am on my fourth chemo now so they are denying it. Genetech said they will not be helping in the fight to get insurance to pay because they are not willing to risk their approval status by fighting for off-label usage. Hopefully the TDM-1 will be more open ended as to who qualifies to get it.
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I am looking into perjeta and am wondering other than the cost implications can the drug be accessed for non first line defence?
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Bump
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Thanks for the bump, Boo123, as I had missed this post and it's of great interest to me. I have only 2 liver mets, each originally under 3cm. After 8 mos chemo with taxol+avastin they are both below 1cm. The interventional radiologists say I'm not a candidate because the mets are too small. We thought I had progression but it was just an error. Now I'm trying A/A because it's indicated by genetic profile since I have PIK3CA mutation.
Knowledge is power! I will push hard for ablation or spheres if there is growth.
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Good luck with your advocacy JimmieBell. This issue is key to me too - having through a scan recently just found one liver met 2.5cm and two freckles close by too small to measure, all in the same eight of the liver. Started on Taxotere x 6 rounds three weeks apart. Then, depending on the outcome from the chemo, there is talk of either liver surgery to remove that area or a microwave procedure and then Tamoxifen as Aromasin did not work for me. I am hoping to get to NED but who knows. My one says that within the serious context of the mets agenda, being Oligiometastatic is a good position to be in.
Anyone else in this position?
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I know this is an older thread, but I wanted to chime in here....I was diagnosed (incidentally) with two liver mets back in April...the largest being 2 cm and the other about 1.5, on separate lobes of the liver. The 1.5 cm lesion was too close to the stomach so I had that resected a few weeks ago.....it was a laparoscopic wedge resection. I recovered very quickly from that procedure....thank God! In two weeks, I will be having SBRT to the lesion that is 2 cm. I had a PET/CT and a bone scan and there is nothing else showing up in my body (at least at this point). I am currently on Lupron and Arimidex. If my PET/CT in three months remains negative, I will have an oophorectomy. I am having genomic testing and estrogen sensitivity done on the liver tumors also. I too wonder if I am truly oligometastatic, or were these lesions found so darn early (they were found on a CT scan incidentally while being worked-up for kidney stones). Obviously, I am hoping I stay oligometastatic for many years to come. In addition, I am grateful that my oncologist, liver surgeons and rad oncs at my hospital are willing to take this aggressive approach with me, as I know this is not standard of care! I am 45-years-old with three school-aged kids.....16, 13 and 11. They NEED their mama at least for several more years!!
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wildrumara,
Oligomets are very interesting, because not all oncologists even believe that there is such a thing. I think there is no way to know if someone is truly oligometastatic, since it's unclear if this even exists. Some oncologists believe that once you have mets, you have mets, period. The research is still limited. I, for one, hope they do exist, since I have a single bone met (rendered necrotic by rads) and am going on 3 years NED. I've never even had chemo. Take good care of yourself.
Caryn
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This topic interests me, as I was sort of like that classic story of a healthy person who goes in for a little problem and comes out dx'd with cancer all thru their body. I was functioning well, active, working full time, age 63, when a visual disturbance sent me to the eye doc 4/4/14. I was SHOCKED when he said it could be bc mets to the eye. Two more eye appt's later, and sure enough, I had mets. A work up for other sites and a possible tumor of origin happened, and I had scattered mets to left lung, parts of C spine, T spine and pelvis, Lymph nodes in chest, and some nodes in the left breast. I had had successful standard tx of two separate bc's in 2003 and 2012. A biopsy this April of a chest node suggested the mets were from the last episode. I am in the middle of a 12 week taxol chemo, which is making me feel pretty yucky much of the time. Its hard not to dive into a disaster mode, with the stage IV gloom and doom predictions. Reading this material about careful discrimination and tailoring tx to the situation is really helpful to me. I hope more people will contribute resources that look at stage IV as a variable group with lots of potential for positive responses to tx. We need that!!
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mame me,
Sorry that you've had to join us. The whole idea/possibility of oligometastases is fascinating. The general definition has been no more than 3-5 mets to a single site. Since doctors disagree as to whether or not such a state exists, ideas on tx also vary. I don't know if treatments are tailored or just educated guess work. Still, I hope oligomets do exist, not just for my sake but for others with very limited mets. Now, if we could only figures out why this happens. Take care.
Caryn
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An update from me…scan after four rounds of taxotere has shown the two freckles to be too small to measure and the large tumour reduced to 16mm with a necrotic centre all the way through - my onc says this is good, and he is pleased. Will have two more rounds of taxotere then surgery to remove whatever is left. Patholgy will then show if the cells are all smoked or if there are any left still alive. Then more chemo of a different sort as an insurance policy. He is planning to put me into remission and give me the strongest chance of staying there through this extra, different chemo, xeloda, after surgery. He says this is to double check and mop up any cell that may be resistant to the taxotere. He is treating me with curative intent, I've seen that written on my paperwork which I really liked. He definitely believes in the oligometastatic position and is determined to put me into remission. Although he won't make me any long term promises, the hope is that he is sorting me out for good and all. I'll get tamoxifen after all chemo and surgery to that is another string to my bow. Hope it all works!
Boo
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Thanks for the great responses ladies. I find it so interesting. That is awesome Boo!!! Question for you Boo........were you diagnosed Stage IV from the get-go? I too am being treated for curative intent....thus, the liver wedge resection and the SBRT. No chemo for me though, because I had it the first time around back in 2011. When they did my ilver resection back on May 2nd, they ran an ultrasound probe directly over my liver and there were no other lumps, bumps, or freckles....there was nothing....so that was really good news, as I think they were expecting to find some of those. Im sure they will do the same for you......they say that is the BEST way to see what else might be going on as PET/CT doesn't pick up everthing. Anyway, I will run with this oligometastatic diagnosis for as long as I can!!! I bounced back incredibly well after my laparoscopic wedge resection....hope you do too!
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Hi Wildrumara, well done on being NED, and for sharing your experience, and thanks for your kind words of support. The answer is no, I was first diagnosed ILC Stage 3C back in April 2011. Apart from ILC in both breasts (leading to Double MX) I had an all body CT scan in June 2011 that showed the rest of my body to be disease free. Did all the treatments. Surgery, chemo, Radiotherapy, AI. Come this march I told my onc how exhausted I felt and wondered if it was a side effect of Aromasin. He suggested another full body CT scan just to rule out anything, but instead there it was, lurking in my liver. So had grown somehow despite chemo and Aromasin, since the all clear scan in June 11. I am lucky that my onc decided to be thorough and scan me before switching my AI, as I was showing no other symptom than fatigue and he said that at 2.4cm the tumour was not really big enough to be causing fatigue. He was not expecting to find anything on the scan and was as surprised as I was. (Mild understatement ). So here I am. Ogliometastiatic and grateful to my diligent onc for picking it up so early and giving me such robust treatment.
I have not heard of that ultrasound probe check during surgery, and I will be sure to ask about it when I get the appointment to meet the surgeon. Thanks very much for telling me about that. I too am determined to run with the ogliometastatic position for as long as possible!
Boo
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Very happy with your results, too, boo and wildrumara!
Since this thread was started there is more recent literature on the subject. Here's one for cancer in general, not just breast:
http://jco.ascopubs.org/content/31/11/1384.short?rss=1
The review focuses on extracranial metastasis although intracranial metastasis can also have an oligometastatic phenotype. It says they are beginning to understand the biological mechanisms. It looks like microRNA 200c expression differentiates oligometastasis from widespread disease (polymetastasis). In BC this gene seems to suppress migration and invasion of bc cells according to Dr Google.
I hope the newer findings lead to an antimetastasis drug.
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Wow Boo! See, I had this conversation with two oncologists and neither want to do chemo on me now! I think we are already "thinking outside the box" with the entire resection and SBRT.....as not too many women are good candidates for this aggressive approach, and not too many MOs recommend it, even for oligometastatic disease.....because there isn't much data out there to support it for breast cancer. There is a lot of data with colo-rectal mets on liver resection though, as you probably alreay know. Anyway, they are of the mindset that we shut down the ovaries....on Lupron now but I will have them removed if my next scan shows me NED.......I've already made the switch over to Arimidex and then we will see what happens.....start with the AIs and only move onto chemotherapy when needed. As my MO said, you will need chemotherapy at some point, although she did say if I REALLY wanted chemo, she would give it to me. The other MO, who is very young and very "cutting edge" didn't even recommend chemotherapy for me. She did send my liver tumors for a genomic study and some kind of anti-estrogen genomic testing....(can't remember). I guess they will check the tumors to see what anti-estrogens will work best on me?? So, in essence, depending on what these genomic tests show, chemotherapy might be in my not so distant future, if they find that I am resistant to AIs.......Boo - do you think because you have ILC, which can be sneakier, your MO offered you chemotherapy? Just curious, are you being treated at a major academic center? You've piqued my interest on this whole chemotherapy thing again! May have to send the young MO an email....haha!
Thanks Heidihill for the link!
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Hi Wildrumar, well I was wondering why you were not offered chemo …my onc was of the option that as this was a met from my lobular BC, and in the liver, it means that one or more cells had moved from the original BC and thus others could be at large in the blood stream somewhere. So the chemo is to address anything that might have floated elsewhere. The liver met we see as toast - because chemo is taking it down and then it is going to be removed surgically anyway. Pathology will be anxiously awaited to see if a complete response is shown, or if any live cells left in amongst the necrotic tissue that is now sloshing around like a liquid inside the tumour area. My onc says the structure of the whole thing is now more like a cyst than a solid tumour. However the chemo is definitely seen as part of the whole throw everything at this aggressive systemic whole body treatment plan to get me to NED and hopefully keep me there by eliminating anything that might be anywhere else. I would not be comfortable just relying on a hormonal treatment only as Aromasin failed me even though I am 100% Estrogen positive. But Progesterone negative. Don't know how significant that is. I know the AIs are really powerful things, but unluckily for me they did not work. But that does not mean the same for you. I hope that you get much success on the AIs. When this first kicked off my onc did say that another AI or tamoxifen was one option, but that it would only last for so long and that eventually the tumour would start to grow again and that I would need chemo eventually When I asked what his best route would be for me, he said chemo without blinking. So I'm taking his advice as i trust him totally. I'm really happy with my aggressive treatment plan and hope that it works. And I hope that you are content with your treatment plan and that it works for you too!
Best, Boo
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Thanks for sharing your story Boo! I think your treatment plan does make sense and I am going to mention this again to both oncologists. I'm thinking the anti-estrogen genomic tests on the tumors are going to tell us a lot about my particular tumors and what they are most sensitive to, and like I said, may shed some light? Scary stuff for sure though.....all the best to you and please keep us/me updated on how things are going for you!
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Hi Wildrumara, thanks for your support. I forgot to say that just as a double check, my onc has taken my case to the hospital's weekly multi disciplinary team meeting a few times for consultation. This team includes other oncologists, and he says that my treatment plan has evolved with input from the entire team - so further reassurance for me that I am being given the most robust treatment possible. I have my next chemo this coming Thursday, and will have another in three weeks and during this time expect a date will be arranged for surgery some time in late July.
It will be interesting to see what your once says when you discuss this issue with them. Everyone's treatment is tailored to our individual cancer types etc. so they may well have their reasons. Also you hopefully will get a good response from an ANI, which is systemic and will treat the whole body. Personally I am happy to go the chemo - surgery route. Especially as when I am done with all of this I will be put on Tamoxifen. I am post-menapausal though, and it sounds as if you are not. That may make a difference?
Please do keep in touch and update on your test results and following discussions. And good luck with the SBRT, I know nothing about that so will be interested to hear about it. You are right, this is very interesting. I hope that maybe a few other folk reading this thread my realise they may have oligometastatic status and take this thinking to their medical team for discussion too. In case the tests come back and the outcome is that you do need chemo, my onc said there was a piece on the uk Medical Oncology journal only recently confirming that Taxotere every three weeks is the gold standard chemo for first appearance of liver mets. So push for that! It kind of sucks your soul out for a week after treatment in terms of intense fatigue, but otherwise is quite doable. Emend and steroids manage it so I have had no nausea. But man, after four rounds. I am so very very tired!
Boo
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Thank you again Boo! I will definitely keep you posted and please do the same! Funny you mention the tumor board.....the rad onc I met the other day (for the first time) regarding SBRT said that he felt like he already knew me because I have been the discussion of the tumor board meetings the last several weeks....(LOL). I had taxotere and cytoxan the first go-round......I tolerated it pretty well! Enjoy the rest of your weekend!
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Hi Wildrumara, I wonder why SBRT has not even been mentioned in my treatment options? My onc is talking to the liver surgeons and the choice is surgery to remove all affected area, or microwave ablation. My onc and I both want surgery so that we can get pathology done on what is left to check for hopefully complete response. Also I just want the whole thing out for my own peace of mind! Apparently the surgeon will have the final say on treatment option but I am getting the impression form the onc that surgery is the way they will go. Unless of course what is called SBRT in USA is called Microwave Ablation here in the UK? WHo knows. I'm just glad to have treatment options.
Taxotere is tough going. Today I taped in bed till 11.00, then got up, ate a bit and now I am exhausted already. Hey ho.
Will definitely post news as it occurs, and look forward to your updates too!
Boo
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