Oligometastatic Prognosis
Comments
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Thanks for posting this article. This SSRT is something of a tantalising dream for me at the moment. I have one chest met but am doubtful that I will be a candidate because of its proximity to great vessels. However as I begin THP I remain hopeful. You never know
Liz
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Liz - ask someone really good at SBRT about it. Find a SPECIALIST. The thing I like about SBRT is the immune response that followed. Put a friend of mine in remission, or so I believe. Wish I had a tumor to zap. Even one and you may get an awesome immune response.
>Z<
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Hi again
My onco will be referring me once THP is done. This mass is currently 3.5 cm and is getting its first taste of chemo in 4 days time.
It just needs to shrink enough to move away from a vein it is compressing. If it goes altogether, do I then qualify for follow up SSRT? Or if it's still there will a radiologist dare attempt it? Interestingly I 'only' had 15 rads which seems to be standard here in UK but it's over my heart of course.
This mass is the one area of concern. I cling to hope that it gives me a good chance. I know of another UK lady who did have SSRt to internal mammary LN but its experimental and docs not keen. Perhaps there isn't the urgency to be aggressive once we get that stage 4 label. I am going to get the ball rolling on this even now and will speak to my onco about it at pre tx assessment on Wed. My BC nurse keeps stressing this is a systemic disease that can only be controlled.
If anyone is reading this its a bit off topic but I'd welcome your thoughts on fasting pre chemo. Cheesyfrog sent me a previous thread but would welcome any more input.
L x
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L - There is a raging debate between people who believe oligometastatic disease can be cured with aggressive local treatment and those who believe that once cancer has metastasized, the horse is out of the barn and the only cure is systemic. The oligometastatic folks have increasing amounts of data on their side. I would push for oligometastatic diagnosis and treatment, but recognize there are two sides to this debate.
>Z<
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Just wanting to chime in. I was originally considered ogliometastatic. In October 2013, they found one small met on my ileum. I did have SBRT. We totally wiped out my one met, I stayed NED for 3 1/2 years. Then it came back. Now I have multiple mets, even mets to the liver. Now I would have considered myself a good candidate to go for the cure. The SBRT weakened the ileum so much I eventually spontaneously fractured my ileum. The question is, if I had not had SBRTwould things have progressed the same or maybe sooner. I guess everyone has to form their own opinion, I used to believe there is a difference if you are ogliometastatic, but I don't believe in it anymore. I believe more in rather your cancer reacts to treatment. Some does, others don't. Either way good luck ladies. I wish you the best. Enjoy the moment
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Hi
I think this is a highly contentious issue and so far the oncologists I have seen have used the term oligometastatic but the tx protocol remains systemic and they haven't made much of this as a good thing, apart from the report by the London prof who termed this a " loco- regional" recurrent BC. I think they are happy that there is just one area of interest because they can focus on how the chemo responds to it.
Of course I hope that it can be effective and that no other areas spring up but I'm also realistic too. Kandy- thank you for your input here and I was sorry to hear about your progression after such a long period of NED. This disease is so unpredictable and cruel. Personally I have learnt to take it a step at a time, pursue all options and brack to the word hope.. Hope it works. Lots of ladies battling a disease that appears to initially give hope, only to cruelly take it away. I have been wondering how long I might have disease free progression on THP and then I said to myself STOP girl... You are over thinking this. However it is hard not to when I'm told that this first line of tx gives me my best shot!!!
Zavoraka- the evidence base is the crucial thing here. Most oncology treatment is based upon trial results eg Cleopatra becoming the international gold standard. At this point I have read, with hopeful interest some of the reports/ studies but cannot comment confidently on oligomet research.
Would be happy to read further though if pointed in the right direction. My present doc has promised to put me in front of the right people for rads. It is not his specialism but is not ruling it out.
Liz
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Liz, THP is a great systemic treatment, oligo or not. I did TAC almost 10 years ago for de novo metastatic disease to the spine. It is not used much these days, I think because of cardiotoxicity. Plus I had 28 intensity-modulated zaps on the left side. They used a gaited breathing aid to protect the heart as much as possible. So far I have had no heart issues, but this could still appear at some point. I exercise daily with this in mind. Lifting weights probably also helped me increase bone mass despite endocrine therapy.
My thoughts on oligo is that it is neither here nor there. (Please ignore my keyboard which keeps making capitals.) Both systemic and local Treatment will kill active cells in varying degrees depending on our individual cancer and immune system. Whatever we do to weaken the former and strengthen the latter has got to help. Of course "whatever" has risks, so again it is a personalized equation.
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Hi Heidihill
Yes I agree that THP is a good regime and that hopefully I will respond well. I am so pleased to see that you are 10 years on from this diagnosis and doing well. I think the rads issue with me is because the mass is in the middle of my chest, so it isn't just a heart issue but I remain hopeful that it could be done.
Thank you for posting. To hear positive stories as I embark on this chemo is uplifting. My onco said the median survival from the a Cleopatra trial is 6 years. I must add that I didn't ask for this information and that I am not a statistic. Others have done much better- it's so individual!
Again I thank you dearly for posting.
L
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Browsing through this thread I didn't see this study posted and thought some of you might be interested, but I apologize if this is a repeat. If you're interested in the Rochester, NY SBRT breast cancer study (published 2009) that is referenced in the article Zarovka recently shared, the info is below. It's obviously a little dated and a small population, but hopefully we'll see more research on this in the near future!
Breast Cancer Research and Treatment
June 2009, Volume 115, Issue 3, pp 601–608
Oligometastatic breast cancer treated with curative-intent stereotactic body radiation therapy
- Michael T. Milano
- Hong Zhang
- Su K. Metcalfe
- Ann G. Muhs
- Paul Okunieff
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I was also considered oligo. I had one bone met to the acetabulum (hip) which disappeared after chemo and radiation. Like Kandy, lasted 3.5 years, which is pretty worthwhile, until two more popped up in bone. Zapped one, because of its size and dangerous location. The other stayed small and quiet so we left it alone. Two year later it's in my my liver. So, the oligo thing didn't hold for me either. That said, I feel If i were still oligo, I would be holding on to whatever might keep me that way. No reason you won't be the lucky o
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Hi Erin
I couldn't open that link but should be able to look it up. I'm happy to keep looking into this. Have you formed any particular opinion yet?
Hi Stefajoy, it seems there are many ladies who start off oligometastatic and progress and I think progression is always a likely possibility. My team have used the term oligometastatic merely as a way of saying its in one place. They have never said it has given me a better prognosis so my hope is for successful response to tx and after that we will see. I like to think of myself as realistic and optimistic.
L
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Liz, sorry! I have to log in through my university to access journals so the links tend not to work. But with the title, journal, and author info you should be able to find it! Let me know if you don't though
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https://www.moffitt.org/media/4879/21.pdf
Another article on SBRT for oligo, including BC oligo.
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Thank you for your Nature paper post
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This is an interesting case study of A Woman With Primary Breast Cancer and a Solitary Sternal Metastasis. They present her case and then multiple doctors comment with facts and figures regarding oligometastatic disease and aggressive treatment.
>Z<
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Thanks Z, very interesting read and nearly identical case and treatment plan as my own.
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Thanks, Z. My doctors probably had read this article when I was diagnosed in 2007 (a year after publication). Lol. I was not advised to go for the stem cell rescue by my US second opinion doctor. Thank goodness as that had a very steep price. But my radiation after systemic therapy and mastectomy was "curative" at 50 gy over 5-6 weeks. I was also advised not to have implants beforehand.
This woman went through a sternal resection. The 2010 article has more recent case studies on bone mets but no footnotes.
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Thanks Heidi. Contemplating what to do about my solitary sternal met. Doesn't hurt but I am tired of seeing it light up on scans.
>Z<
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Thanks for the great article, Z. I found it interesting how the suggested treatments did not match between the doctors. Makes me want to get a second opinion about getting a second opinion.
This underscores the fact that, without a crystal ball, even the doctors are just making educated guesses when guiding our treatment. I trust my MO because he is always clear on the *why* of his suggestions and his opinions match my research. I have resisted the urge to get a second opinion because I am worried that it will add confusion rather than confidence. I'm not sure if that's the right choice, but I'm sticking with it for now.0 -
I'm oliog tnbc brain only solitary brain tumor. Very rare. Been NED since radiation over a year ago. No systemic treatment unless something pops up. Like to believe it's my original chemo and healthy lifestyle that has gotten me this far. Or maybe cancer just wanted to go to brain first and never got the chance to go anywhere else? But in either case- I'm still here thriving so I'll take it
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Thanks for stopping in Pagej. I suspect you are truely oligometastatic and the radiation took care of everything.
>Z<
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thanks for the kind and full of hope words Z. You're inspirational with your active lifestyle
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I'm like Pagej, solitary brain met and NED everywhere else. My brain met was treated with craniotomy and gammaknife radiation. My brain scans are also NED and have been for the past 2 years. I continue to take anti-hormonals as my first line treatment. I'm hopeful more studies will be done on oglio disease and lead to better treatment options.
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Wow. That article is kind of old now but it's the most encouraging thing I have read in weeks! Thanks for sharing it. I see all the grim prognoses regarding survival but try to remind myself that - especially the retrospective studies - may be looking at older, sicker populations and may not have had access to the drugs (especially targeted therapies) we have now.
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Hi all. It looks like this thread has been quiet for quite a while. I love that it exists and that people are beginning to think about oligometastic disease differently. I'm curious if anyone is still active on this thread if you have any thoughts for me
In January of this year I was diagnosed with 2 TNBC liver mets. I started GemCarbo in February and my April and July PET/CTs show NED. I am trying to figure out what to do now. Seems like the doctors want me to stay on GemCarbo for a while longer. But I am wondering if I should do a local liver treatment - SBRT, resection of the scar tissue, etc. Does anyone have any experience with local treatments after becoming NED from systemic treatment?
Any other thoughts on treatment plan going forward? Curious to learn from all of you. Thanks in advance!
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I've been away from BCO for quite awhile so not in the loop regarding others here, and I don't have oligometastatic condition. I just wanted to suggest that you consider getting a second opinion with a top-notch BC, preferably TNBC, specialist. Maybe you've already done this. IMO it's very helpful to get other perspectives. Not all oncodocs look at things the same way. How are you doing with your chemo tx? And---congrats on reaching NED, that's so exciting!!
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I had SBRT to my three liver lesions there was no enhancement after chemo but they could still see the three 3mm spots so they were targeted last April with 5 fractions of radiation. Since then my CT scans have been “no evidence of metastatic disease” anywhere. I had breast surgery now. Doing well. I was oligometastatic de novo to my liver only July 2015
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Hi all
Great to hear positive stories. I was dx with one met to mediastinum in March 2017. One year later and I showed NEAD and my vascular picture appeared like a patient without cancer. The compromised internal jugular vein is working again, despite me being told that it probably wouldn’t return.
I hope there is something in being oligometastic and that I can ntinue NEAD. I am currently on HP and just waiting to see if my onco will want to scan again soon.
Wishing everyone the very best on this thread and hope newbies will chime in and others will update.
Liz
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Hi everyone
I had my original diagnosis in 2011 stage 3a, TNBC with a 3.5 cent. tumour in my left breast, almost under my arm pit. I had three lymph nodes test positive out of 15 removed. I had chemo, double mast. and radiation. In 2013 a 1.5 cent. tumour showed up in my lower right lung lobe. The lung lobe was surgically removed. I have showed as ned for the last five years. My oncologist and I have decided that it is appropriate for me to have a ct scan once a year instead of every 6 months. I am at the point that the radiation could cause problems in the future, sometime that I relish worrying about! I have spoken to others that have showed as ned for quite a number of years. Like myself, they aren't on the boards that often, as they are out living their lives. It is possible, and there is hope.
hugs Rose
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RosePenny thank you so much for logging in and sharing. My scan has been moved to every six months now, so I just missed the usual 3 month one and will be scanned in October. I wonder if it was too soon. I too was oligometastatic but to my liver and there has been no evidence of metastatic disease on 4 scans now. Go live your life and not worry about Cancer until your next scan.
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