Oligometastatic

lilylady

My onc has now told me I am oligometastatic-potentially curable. Not much on the site about this. They told me less than 3% Stage IV get there, just wondering if anyone else has been told this.

Thanks to a fantastic response to neo-chemo I now have only a single tumour in each my breast, lung and liver. I already have appts with 3 surgeons next week to get things started. First surgery will be mx July 29-three weeks after last chemo

Heidihill

I was never told this by my treatment team. But another doctor I consulted after my treatment regarding next steps told me the protocol they followed had a curative intent. Later I came upon articles discussing oligometastasis and the 3% number. The bad part is that one may have to wait at least 10 years (until technology advances, my estimate) to say with any degree of confidence that one is actually cured.

Hope chemo obliterates all your tumors!

katie31

.

steelrose

Hi lilylady...

I love, love, LOVE the thought of this! I've never heard the term before... I'm currently NED and praying... I wish you the very best of luck with your upcoming surgeries and treatments. 3% can happen... maybe better odds than Vegas!

xoxo

Rose.

lorieg

I was originally diagnosed with oligomets....just one cross axillary lymph node met, otherwise clear.  My understanding of the term is that it is generally applicable to people with 3 or less bone or certain lymph node mets that are very small.  i forget the exact definition (size-wise).  There are some articles out there on oligometastatic disease.  If you search google you will find them.  My cancer has progressed, unfortunately, but I have a lot working against me so don't let that make you feel bad.  I am young and have IBC which is super aggressive.  I do know some women, at least three, that have oligometastatic disease and are doing well!

Best of luck to you,

Lori

CoolBreeze

Never heard that word!

Love it. My doctor said I was salvagable, another word I like.  

Katie, I have two lesions in my liver too - 2.8 and 2.0.  Can you tell me what you found about being curable?

I am waiting for the biopsy and my treatment plan and getting frustrated.  My last herceptin was December 2nd, I had an abdominal CT December 10th that was clean.  I had another May 16 that showed these lesions, so these suckers grow fast.  I want them dealt with and now! 

jhammel

My wife's stage IV case is oligometastatic.

She was originally diagnosed and treated for BC early in 2002, and considered stage I at that time after a single mastectomy with clear margins and no positive nodes.  Despite being triple positive, she declined adjuvant treatment.

No problems for over 8 years until Feb 2010 when a viral infection (thank you daycare) led to a chest x-ray which led to the discovery of a lung tumor.  Further CT and PET scans revealed that the tumor (about 2cm) was the only such detectable one in the lung.  The scans also revealed a small (<1cm) tumor on her spine, but on the back side in a rather accessible spot.  Including a brain MRI, nothing else was found on any scans except a mildly suspicious tracheal lymph node that was biopsied and determined to be cancer-free.  She had surgeries last spring to remove first the spine tumor, then the lung tumor.  She didn't do any pre-op therapy since they hadn't been able to accurately differentiate her case between primary lung cancer and recurrence of her breast cancer.  Both surgeries were reported as complete resections with clear margins, and based on those results and more scans, she was considered NED as of the lung surgery last May (from which they also confirmed the recurrence of breast cancer).  Her follow-up treatment was a brief course of radiation to the spinal area, then 12 weeks of Taxol/Herceptin, and now continued Tamoxifen and Herceptin, given her triple positive status.  Her most recent PET/CT scan this May has her still NED at 1 year.

We know that a substantial percentage of women with cases like my wife's have remained NED for several years (some decades) following the treatment for the metastases, though most cases do recur again.  We certainly hope my wife is among those with the extended NED, but for now we feel like she has done (and is doing) what she can, and we'll deal with whatever comes.

katie31

Coolbreeze when I say potentially curable I think It's something like only 3 % of people with less than 5 mets can potentially be cured. I know it's a small number but it has given me hope. I think the theory behind it is that if the mets are treated aggressively from the start with chemo/surgery etc that really good results can be achieved. Aparantly most oncologists ( in Ireland anyway, I'm not sure about the states ) take a much different approach to mets, by only treating them mildly..

I'm on chemo (AC) at the moment because I'm pregnant and I think my options are limited but when the baby is born I will be looking into treatments to remove my liver mets such as cyberknife etc. I'll also be pushing for a double mastectomy and ovary removal and whatever surgery is available to me.. Obviously the cancer could still pop up anywhere else but I think in a very very small number it doesn't..

Sorry if I sound totally naive or clueless..!

Kate x

Heidihill

http://jnci.oxfordjournals.org/content/102/7/456.full 

Some excerpts from the above article (sorry for the formatting):

A distinctive subset of MBC patients who are most likely to gain substantial benefit from an intensified multidisciplinary                 therapeutic approach is represented by "oligometastatic" disease, which is characterized by solitary or few detectable metastatic                  lesions that are usually limited to a single organ. This population of "potentially curable" stage IV disease is estimated                  to be 1%-10% (my emphasis) of newly diagnosed MBC patients (6)...

The European School of Oncology-Metastatic Breast Cancer (ESO-MBC) Task Force addressed the management of these patients in                  its first consensus recommendations, stating: "A small but very important subset of MBC patients, for example those with a                  solitary metastatic lesion, can achieve complete remission and a long survival. A more aggressive and multidisciplinary approach                  should be considered for these selected patients. A clinical trial addressing this specific situation is needed" (9).              

katie31

Interesting article.. (the bits i could undetstand!) Now how do I convince my oncologist to take a curative approach?

lilylady

My mets are both in iiver and lung but have had such a huge response to chemo that they are barely there. My liver met was tennis ball sized at 1 point and the entire surface of the liver was covered with micro-mets. I have read that the oligo thing meant "confined to 1 organ"or even bone mets only. If only 3% get there no wonder there is no long term info on this.Seems like a fairly new approach-although I did find an article from 2002.

 It does seem somewhat controversial and i read something yesterday where the Dana Farber Institute (Big cancer place in US Katie) does not support it. . I am going to ignore the naysayers and Praise God for my new oncologist. I am in the best health of my life so I am going for a cure-or call it NED -whatever you call it i am going to get my stuff scooped out.

  I will update as I go. I have the BS appt June 6, liver guy June 9 and lung lady June 10. The liver guy is actually a transplant guy who is taking my case as a favor to my onc. Hope that means he is up on everything else-I don't need a new one.-just snip my old one.

  Katie-2nd opinions are always an option

jhammel

I think the "confined to one organ" definition comes into play simply because metastatic lesions are rarely removable with surgery.  The likelihood of a patient having lesions in two or more organs that are all removable with surgery is probably very very low, and I don't know iof any studies published that address such cases specifically.

Actually, I remember seeing one, but not for breast cancer, - it was for sarcomas, and it suggested that patients with a lung surgery for removal of a tumor who also had a second metasttic tumor concurrently removed from somewhere else other than the lung had a similar outcome to those with just the lung tumor removed (assuming for all such patients there were no other detectable tumors than those removed).

The published data that I have found for breast cancer only addresses the surgical removal of tumors from single organs, so any reference to such results or discussion of benefits of an oligometastatic state are going to typically play it safe and stick to the "confined to one organ" cases for which published data is available.  My wife's doctors took the approach that since the tumors in her lung and spine were both resectable, then her case should be treated aggressively as well.  One year NED, more peace of mind (whether it lasts long or not), and an increased level of hope, have been worth the price, especially considering her surgical recoveries and tolerability of the post-op chemo (taxol) were prettty good.

katie31

I am on AC chemo at the moment so if by some miracle my mets dissapear (my onc says it possible!) should I still be looking into getting them removed surgically? I mean the site where the mets were if that makes sense.. Lilydaly please keep us informed about how you are getting on.

Jhammel-I am so pleased your wife is doing well

ElaineD

There would be no point in removing the area in which they are/were located. When/if they spread, there is no guarantee that they would return to the same area. All it takes is for one cell to escape and circulate-sometimes for years-before it starts to multiply.It may not even return in the liver-it can literally go anywhere, and we can't remove all the potential areas of concern!

I'm cautious about the claims that certain 1Vs are "curable". It's a very emotive word. But if you can achieve NED which lasts a while, then you'll be doing well. As I've said before, the liver is a highly complex mets site to treat, so vigilance and some form of ongoing treatment for life is of absolute paramount imprortance.

jhammel

Kate,

I'm guessing that if you have a complete response to the chemo and get to NED, then the onc may consider the surgery unnecessary - perhaps figuring that any future problems are likely to show up in a different spot anyhow, or that a good initial response to chemo bodes well for treatment of possible future tumors by chemo as well.

In most oligometastatic cases treated surgically and with aggressive adjuvant treatment, I think the idea is to take the fast train to NED, and then try to wipe out as much cancer as possible while it's at its smallest amount (much like post-op therapy after earlier stage diagnoses).  If one can get to NED medically instead of surgically, I don't know if the surgery adds benefit or not.  I don't know if the oncs really know either, so they may be reluctant to suggest major surgery.

 I'd say push for the surgery only if you really need it to feel good about your treatment and you think you are willing and able to tolerate it.

In my wife's case, we didn't have a chance to try pre-op treatment first because they couldn't tell if it was lung cancer or breast cancer - the lung tumor was in too difficult a location to get a definitive biopsy result.  And when they got her spine tumor first, it was almost completely died out, so they didn't trust the tests used to evaluate the pathology.  They had to do the surgery anyhow just to get the right diagnosis.

lilylady

I will be nuts before I get to these doc visits next week. Biggest question for me is what if they do shrink out of sight? I would way rather they get a piece of something and tell me I have clear margins. The breast tumor is now the largest of the three-pretty sure it won't go completely away.

jhammell-did your wife ever have cancer in her breast? I have been doing lots of lung reading because I started with 6 golf ball sized tumours-or so they said and only 1 got smaller on the scan. They are now calling the others scarring from previously undiagnosed lung issues. I have had pneumomia at least a dozen times and 4 people in my family have had histoplasmosis-so maybe that's what they are. Only the 1 lit up on the PET in the beginning but once they know you have cancer everything they see suggests mets to them.

jhammel

yes, my wife's initial breast cancer diagnosis and treatment was at the beginning of 2002.  She had a single mastectectomy.  The tumor was small and nodes were negative, so she was deemed stage I, but she was grade 3 and HER2+, so her risk of recurrence was high.  Evidently some cells had escaped and remained silent for a while.  Despite the distant recurrences to the lung and spine that were found last year, there have been no local recurrences in or near the breast.

Wow, it seems odd to congratulate you on the lung issues, but it must have been good to hear that all but one of the tumors was something other than cancer.  When my wife's tumors were indicated by the PET scan last year, we still held out hope that she had a case of TB (which was a real possibility given that she lived most of her life in Asia and has had + TB tests in the past).  But after the PET, the bronchoscopy she had showed it was cancer.

Suze35

I hope its okay to add my perspective...I'm not Stage IV, but my doctor and I are in agreement that it is likely just a matter of time given my aggressive pathology and resistance to my original chemo.

I'm going to be "pre-emptively" starting Xeloda with Ixempra and Avastin in a few weeks, under the assumption that the mets are there but too small to pick up on scans.  (I'm having a neck to pelvis CT this week to make sure this is still the case.)  My doctor feels that hitting this hard gives me a chance at going into remission, and hopefully for awhile.  She agrees that aggressive treatment early can show good results in terms of overall survival benefit.

I think it is important to be on the same page as your doctor - I have three young children, and I want to be around for as long as I can have a measure of quality of life.  If my kids were grown, I'd probably be more likely to take a less aggressive approach. 

lilylady - I wish you the best - it sounds like your chemo is hitting your cancer hard!!

katie31

Do any of ye really believe ye will be still fighting this in 20 yrs?

Suze35

katie - do you mean cancer in general?  Or me as a person? 

I'm under no illusions about myself - I know that unless I am extremely lucky, I don't have a very long lifespan in me.  I'm hoping to push for 5 years, but even that is unlikely.

In general, I think cancer will still be an issue in 20 years, because I am rather cynical.  There is so much money being made in treating the disease - a cure would end that.  So I think there is a level of "acceptable risk" so to speak for drug and insurance companies, meaning they have no problems with improved treatments and outcomes, but would not want to stop the cash cow with a cure.

I truly hope I'm wrong on that - maybe a rogue cure will come out and no one will be able to stop it!

ElaineD

No Katie- a cure is still a  distant dream. Eventually we become resistant to the drugs they use (I've already had a few stop working for me)Or the side effects to the treatments become so bad,that they are worse than the disease, and so we have to stop treatment, or the drugs which are meant to help us will kill us.

Please concentrate on the near future-nobody, with or without cancer knows/can expect to be alive in 20 years. I know you have a young family and want to see them grown-but my kids are in their 20s, and believe me, the knowledge that  I'll be leaving them soon isn't easy. Plus, even if you did survive 20 years-when that time was up, you would want another 20.

Heidihill

I was declared NED by PET/CT after neoadjuvant chemo but still had a mastectomy and axillary node dissection. I probably would not do the latter now but  PET/CTs cannot "see" tumors below 4mm (at least the machine in the university hospital). Therefore a pathology exam is the only way to make sure. They also glean a lot of information from tissue, which is good. So that was one reason they operated in my case. I've also read that chemo can only kill rapidly dividing cells. If there are any dormant cells anywhere they will escape chemo. That would be a reason for surgical removal, if at all possible, IMO. As to the cells that are circulating and/or strewn elsewhere despite being NED, hormonal therapy or Herceptin is designed to sweep/starve them away. That may still leave dormant cells lying around. They are not doing me any harm and so long as that's the case, some oncs would say I'm "cured."

I don't think it helps me though to think I'm cured. Something could wake up those dormant cells, cells could become resistant, I could get a new cancer. Cancer seems to be driven by inflammation (e.g., here http://www.sciencedaily.com/releases/2011/05/110505083235.htm ) So I exercise since exercise is anti-inflammatory and without side effects.

It also is good for the bones and bones are one place cancer cells love to hibernate. Supposedly bone cells compete for niche space with cancer cells and some think that's behind the anti-tumor effect of bone strengtheners, under which I would include exercise. Exercise also strengthens your immune system so that it can recognize and fight any cancer cells that might wake up or that are created through carcinogens we take in. With that in mind, I exercise daily, including lifting weights to strengthen my bones. (I'm on a Zometa break.) Oligometastatic or not, I can't afford to become complacent.

katie31

I meant us as people. Will we really die from it? I think I'm in denial.. Sorry for changing the subject.

xxx

jhammel

No, I don't expect my wife to be alive 20 years from now.  The odds are against her.

But I do believe it can happen, and my wife's case is favorable in some ways, so I think her chances are more than just very slim.  I think we have enough reason to hope for the best.

I would love for her to see our 2-year old grow to adulthood.  My wife's oldest son is now 22, and we would surely love to both be around to see the younger one reach that point.  So, we'll hope, but I've never been one to be dominated by optimism.  I prefer to lay out all the possibilities, accept their reality, and then know ahead of time that whatever happens, things will work out ok for whoever has to deal with it.

irish22

Katie I'm not expecting to live long from this, I've accepted that as much as I can. My family now is another story, they are in complete denial about this. I recently bought a burial plot near my parents because there was one available and I wanted to be near them. My brother flipped out for even thinking about it, he says if I do this stuff I'm giving up. I don't look at it as giving up, I look at it as being on the cautious side. Who knows, I could die on the train or car ride to my doc appts. You never know.

Lauriesh

I would like to think I will be here in 10 years. It would mean getting to see my kids graduate from high school. I think I am also in denial, or maybe it is just hope.  I have hope that new drugs will continue to come out, and also, more targeted procedures. 

I had rfa, and the radiologist was so optimistic. She told me that she hoped she would never see me again, but if something popped up, she would zap it again.

Laurie

lilylady

They told me less than 3 years from the beginning for survival-and that's only when I pushed them really hard about it. They don't like to be pinned down on that issue-do they? But I am also a realist. I just figure that the longer I can survive the better chance for new drugs to come along. As I am Her2 I have that double edged sword-horribly aggressive but great new drugs on the horizon.

Katie-the fact they can even treat a pregnant woman with chemo drugs has to be an advance of some kind. I have read about other ladies on this site who either just had kids or are pregnant but I can't remember what thread I was on.

Irish22. I got a will and all those other legal docs, arranged my funeral. cleaned my house out of crap-AND all of those things will have needed to be done one day anyway. One of my brothers did ask if they would be getting money-I told him-NOT FOR A VERY LONG TIME.

Heidihill-did you mean you would not have nodes removed? I have already told the BS that over the phone. I will not risk LE-I have a very physical job and won't take a chance on not being able to do it. My nodes never lit up even from the beginning

jhammell-2002 is a long time NED. Hopefully they will fix this issue and she will get to that again. And maybe it won;t be 20years-but maybe it will.

katie31

Lillylady-regarding being Her2positive, I have been told that it can be a good thing because there are at least 6 new drugs on the horizon specifically targeting Her2..

I just think its 2011, if we are still around in 5 yrs somebody somewhere has to come up with something that can help us. Ok maybe not a "cure" as such, but something that will prolong our lives considerably.

People have been NED for 10 years, which means they have been fighting this since 2001 and we have come a long way since then so who is to say they wont be still here when the next new treatments become available and live another 10 years??

 Hello denial!  So maybe my attitude is all wrong but I need to think that maybe I will be ok..

Suze35

Katie - I actually think that is a good attitude, and sometimes denial can be very helpful. Being triple negative myself, my goal is to keep going long enough for even one targeted drug to hit, and I do have hope that will happen. Hope is so important - not a "be positive" attitude, but true hope tempered with acceptance. That's where I stand.

Leah_S

When I got my mets dx (oligometastasis to sacrum) my onc said it is a "chronic condition". I told him that just a week after the first scan showing probable mets my granddaughter was born and I was holding her that day and praying very hard that I would dance at her wedding. I said that his job was to make sure that I did. He said, "Then learn to dance".

As long as I can keep dancing, I will keep dancing.

Leah

katie31

OMG Leah that is so nice! I want to dance at my daughters wedding and she is not even born yet xx