Oligometastatic

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  • lilylady
    lilylady Member Posts: 1,079
    edited June 2011

    I went to the lung doc today and it was like having a glass of cold water thrown in my face. Reading that oligo is somewhat controversial and not all docs or cancer places are buying into it is one thing but having a surgeon pretty much tell you that to your face is quite another.

    Made me wonder why the onc sent me to her. I had thought they had already talked but apprently not. he set the appt up for me. I spent 20 minutes giving an oral history to a resident before the surgeon came in. She very bluntly said "I am not sure what it is you are seeing me for today. I have a call in to your onc to discuss this". I told her my impression was this was supposed to be a meet and greet because I am still getting chemo. She said she could not understand why lung resection would be indicated for a stage IV BC when the cancer would be likely to come up somewhere else. Then they knocked on the door and told her my onc was on the phone. When she came back to the room she was a little more amenable.

    She is very young and is the chief of thoracic surgery of a major university hospital. Since there are so few people labeled oligo she probably hasn't seen one. I thought I would blow her away with my good health and enthusiasm----didn't happen. We left it at I will finish chemo and have mx then they will scan again. She did say if surgery happens it is very possible that her and the liver guy could do their surgeries together.

    I see the liver guy tomorrow. Hope he isn't the same wet blanket!!

  • katie31
    katie31 Member Posts: 442
    edited September 2012

    I'm sorry you had a negative experience lilylady. Hopefully you will get better news tomorrow

    xx

  • steelrose
    steelrose Member Posts: 3,798
    edited June 2011

    lilylady...

    Do not be too discouraged by this. I know how aggravating it is when the surgeon and the oncologist aren't on the same page. I went through a similar song and dance with my breast surgeon. He was on the phone for almost HALF AN HOUR with my onc. as she explained the situation to him AGAIN. I  twiddled my thumbs in the exam room... Grrrrrr... Anyway, they're watching you on all levels right now... response to chemo, any progression, general health, blah, blah. Hang tough!!!! I hope you get a more positive response tomorrow.

    Rose.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited June 2011

    Bummer. At the very least, she will remember you and make more of an effort exploring possibilites. You can always find another surgeon. Good luck tomorrow!

  • rosasmommy
    rosasmommy Member Posts: 814
    edited June 2011

    Sorry the lung doctor was such a b*thole.  Some doctors seem to forget the importance of bed side manner.  Many seem to forget that they're dealing with a person, not just a set of symptoms.  Don't even get me started!!

    Good luck with the liver surgeon.  Hopefully, he has a better attitude.

  • lilylady
    lilylady Member Posts: 1,079
    edited June 2011

    Liver surgeon was a whole different story. Original doc i was to see was in surgery still so I saw his partner. Learned a lot. He started by showing me the scans and explaining them. Apparently the upper hepatic dome is not a great place to have a lesion in. There will be no laproscopic, no cyber knife, no RFA. My tumour was 3.5cm and now is 2mm after 3 chemos. It is right next to the biggest hepatic artery (or vein, can;t remember). It is on top of the liver behind the diaphragm. he said it is a diificult surgery but do-able. Problem is the lesion is so small and likely to shrink completely away by the end of tx. He has said one of the few studies they have done on this kind of thing was for colon cancer. They go in and take out the part that had the tumor (that had shrunk to nothing) and they still found cancer at the cellular level.

     So this will be presented at some point to a tumor board to discuss wether a huge surgery to remove where the tumor used to be is worth doing. At the cancer center where I started my tx they presented me to a tumor board and they wanted to stop my tx immediately to remove 50% of the right lobe of the liver. When I couldn't get a good explanation for this I left and went somewhere else. Maybe they were on to something--but I had so much cancer no way was I stooping tx for that long.

    So 3 surgeon visits, a 5 hr onc visit to fix up my blood and a  a breast MRI(which has to be repeated) all in 1 week. I am pooped and way more confused about wether I am really oligo. Not going to be the cakewalk I had hoped for. Maybe after a good nights sleep and some time in the yard tomorrow ...

  • buggy1996
    buggy1996 Member Posts: 14
    edited June 2011

    Your tumor is exactly were mine is located in the liver. I will followup with you in pm later today.

  • thats-life-
    thats-life- Member Posts: 1,075
    edited June 2011

    it can be very draining and confusing lilylady, im sorry the info is so conflicting, i just want to say that we have to keep being proactive, and push our case, talk to your original onc who decided you were oligo, explain to him what has happened at your meetings with surgeons, sometimes they need a bit of a push to step outside the 'norm'...i have had to tell my onc a number of times that i need to work around the chemo option for as long as possible due to chronic infection issues, only just last week did she get it, and is now looking ahead, and changing the treatment plan.

  • lilylady
    lilylady Member Posts: 1,079
    edited August 2011

     So much for oligometastatic. I wish I had never heard the term!! False hope for a cure-I should have known better. I understood "cure" to mean my chances would then be the same as someone who had just cancer in their breast. The onc has been pushing this at me since my mid-chemo scan. WE would do surgery and I would then be cancer free.

       If anyone reads this I hope they won;t take this the wrong way. I have news that most Stage IV would kill for. My mets have shrunk to a level that they are considered inoperable. I saw both a lung and liver surgeon this week and they concur. I am 4 tiny pinpoints away from being cancer free-instead I will be waiting for them to grow-and possibly spread. Onc says WHEN they grow not IF. Scans every 3 months-also now going to be doing brain and bones.

    No NED-no peace of mind-that is if any Stage IV gets there. I had amajor meltdown in the lung surgeons office today. I have an onc visit tomorrow that I may just skip til I can get some control over my emotions.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2011

    I'm confused - they won't do the surgery until your cancer grows?  I thought they would cut away where the cancer was?

    Oligometastasis is a hopeful term but I don't think it means cure, or ever has.  It just means some women with mets cancer's spread in a different way, and maybe it doesn't seed itself all over.  

    It might be controllable with surgery, either short term or more long term.  But, I never thought it was going to be a cure (even being that I may be considered to have it)

    Having the liver surgery - if I can, gives me a shot at maybe controlling it.  Maybe it doesn't.  I hope it does, and I hope the same for you!   

  • Heidihill
    Heidihill Member Posts: 5,476
    edited August 2011

    What a Catch-22 situation! But it could still shrink to oblivion, no? I wouldn't give up hope.

  • lilylady
    lilylady Member Posts: 1,079
    edited August 2011

    I am better this morning but the disappointment yesterday realy ripped me apart. I am a walking miracle from my reponse to tx but the fact ther is now no end point is a bitter pill to swallow.

      Thanks heidihill for your encouragement

  • Lauriesh
    Lauriesh Member Posts: 692
    edited August 2011

    Hi Lilylady,

    I agree with Heidihill.  There is still a good chance you can get to NED.  Are you continuing on with just Herceptin?  I am NED, and I am doing Herceptin and Tykerb.   I had two liver mets, one was huge (11 cm) and one was small (2 or 3 cm, can't remember exactly).  After a few rounds of treatment, the small one was gone, and remains gone for about 8 or 9 months now.  After the large one shrunk, I had rfa. I also met with a liver surgeon, who said the same thing your's said, If the spot got too small, they wouldn't do surgery or rfa.

    I have no peace of mind, eventhough I was ogliomestatic and now NED. My dr assumes it will come back, and so do I.  I just hope I am one of the lucky few  who gets 3 or 4  years or more before it does. 

    Good luck

    Laurie  

  • kidzrn
    kidzrn Member Posts: 28
    edited August 2011

    Lilalady,

    I have never really heard this term either but based on what I am reading, I guess I am oligo metastatic. I have triple neg bc, initially stage 2, finised dmast and 6 mos of ACT. scanned 3 mos later and was all clean. 1 year later, 1 lung met. doubled in size in 6 weeks, after 4 doses of Carboplatin, taxol and avastin it was undetectable. I had talked with the thoracic surgeon before I did any chemo bc my original onc told me she would do surgery to remove, then just folllow up with chemo. I didn't want to do this because I have 4 children and it was june and they were all home for the summer not to mention the fact that first go round, I didn't get to do any neoadjunctivant chemo before the mastectomy to see if my tumor responded. I wanted to know if it responded, especially since this was now stage 4. So I did chemo during the summer and had open lung lobe resection of the area where the tumor had been. When I went in the day before the surgery for my pre-op visit, the surgeon was like..."are you sure you want to do this?, I see nothing on the scans to cut out, just a little scar tissue."  I was like YES....get the tumor bed out, I want it gone!!! Had the surgery, and 2 days later, I was still out of it but he told my mom that he was glad I was hardheaded because there were LIVE, ACTIVE TNBC CELLS in the tumor bed....I will never regret the surgery, regardless of what happens. that was october 2008.  I did 4 more cycles of same chemo and then went on avastin alone since Feb 09. Still NED....Still scared...One of my friends who was an oncology fellow gave me a research paper on a "single lung met situation that had chemo and surgery. It stated that even with both, I had a 9% 5 year survival rate. My daughter was just 3 and I had 2 teen boys....but I am still here and as far as I am concerned there is NO reason why I cannot be in that 9% come April 2013....guess I am hoping if I write it, it might come true. and yes if I can make it to that 5 year mark, I would love to make it 5 more....Best wishes and I will be praying for you. christi

  • lilylady
    lilylady Member Posts: 1,079
    edited August 2011

      I am getting my head adjusted and hearing stories like these sure help. I did see my onc yesterday and as soon as he opened the door I started crying again. I told him my goal was never to see him again. He laughed and said "We are as good as married. You will never be rid of me;" I told him i realize that and that is why I am crying!!

       He sadi why ruin a beautiful fall laying in bed recovering-it will grow back and we will do this next year in the winter. I guess he thought all of this would cheer me up but what cancer patient wants to hear "it will grow back". It isn't that only but the thought that things might break loose and end up somewhere else. And sice i will now be adding bone and brain scans to the regular CT makes me think he is thinking the same thing.

      I will be on Herceptin only and starting Rads in Sept. I am not a candidate for RFA because my tumor is next to or attached to the vena cava,

    laurie and christi-I hope yu are NED forever and I hope I get to join you there. My cancer trip has exceeded all expectations in response and I have had a very easy time of it thruout so onward,,,I am actually going to lunch today with Marybe and at keast 8 other Cincinnati BC ladies from this site. If anyone knows the ins and outs of long term treatment it must be her. Lunch with 9 ladies-we have never met, spoke, or even know each others name. I expect I will come away with a better attitude.

    Again, thanks for sharing your stories. I did not want to post on Stage IV stuff because it seems like so many have had a bad sumer as far as progression ect. I feel embarassed that I couldn;t be positive about having tiny cancer.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2011

    Have fun at your lunch!  Even though you didn't get the news you wanted, it sounds like you are in a hopeful place.  And, maybe you can get a second opinion?  I'm still not sure why they can't do surgery to cut out where the tumor was.  And, who knows...maybe it WON'T grow back.  

  • lilylady
    lilylady Member Posts: 1,079
    edited August 2011

     Both surgeons agreed that trying to find something that small would be impossible. They are convinced it will be better to wait. Surgery will cause scar tissue and make going in later more difficult or impossible. I have to trust their judgemnet and that of my onc. The lung lady would not be my choice but the liver guy would not be saying this if he didn't  think it was best.

       So on to Rads which I was going to have to do anyway. Trust in God and herceptin that maybe they won't grow. Onc says do not give yourself false hope on that score. Getting easier to accept and most people just think that it is a positive that i will not be having sugery. I am not going to explain the implications.

  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited February 2014

    Hi all!!! I just met with my new "team" at CTCA (my med onc retired). My new doc told me that when he read all of my reports, the rad seemed to be I certain if I had liver mets. He seems to feel that I only had the two mets to my spine which put me in the oligo category. He was very clear that I am still stage 4, but he was very encouraging about my ability to live a long time with this disease!

    For those of ou following me, I am going through a divorce/separation, so this fabulous news sent me over the moon!!!

  • Springlakegirl
    Springlakegirl Member Posts: 216
    edited February 2014

    lilylady,

    I'm glad you wrote this post.  I am in a similar category.  I had three detectable bone mets.  2 on my spine, and one on my pelvis.  Although I was originally told I was "incurable", I always felt like I had a fighting chance because I was "barely" stage 4.  But stage 4 is different, obviously, because it means that the cancer has escaped the barn, so to speak.  

    I'm a realist, but also I have hope.  I don't think that I'm "incurable".  In fact, I have also read enough to know that there are plenty of women who are stage 4, who have been actually cured when they only had  one or very few mets.  My radiation oncologist also was more optimistic with me from the beginning and told me that he has seen a few stage 4 women who seem to be cured, and are many years out.  Of course we can't know until they live a long life and die of something else, but there seem to be some who fit that category.  

    I think it's good to be "realistic", and to know that it's important to continue regular scans, treatment, etc., but I don't see the point in being pessimistic either.  What does a little optimism hurt?  I am NED now, almost 2 years out, and I have done a dang lot of treatment to get to this point.  I have done all I can, treatment-wise, and honestly, I think I'm cured.  I don't like it when people tell me I can't possibly be cured, because it's possible, and I fit the category of those who sometimes are cured.  If you fit into that category too, why not hope for the best?  

    I don't think I'm in denial at all, but I enjoy my life more when I can assume that I'm cured and make future plans.  I also occasionally talk to my husband about what we are doing to prepare our family in case I get sick again or don't make it as long as I hope for.  But until I see cancer on my PET scan, I think I may be cured!  If I live to be 90 I don't want to have spent 50+ years assuming I'm sick when I was perfectly healthy.

    I will be honest, and I hope I don't offend anyone, but I think that attitude can help a lot, and I think that there is sometimes too much pessimism among stage 4 women who are currently NED.  I totally understand it, but I don't think it helps anything. If you can see cancer on your PET scan, and are currently in heavy treatment, that's one thing, but if you are NED, enjoy, and know that you have reason to hope you are done with it!

    deniseneish.com

  • screech
    screech Member Posts: 212
    edited November 2014


    Bump....Smile Nearing the end of radiation to clean up anything the mx left behind and hoping that the one met in the sacral that had a total response to the pre-op chemo never comes back.  I started Amarosin and have been told it should keep everything gone!  Hope everyone has a good day!

  • lilylady
    lilylady Member Posts: 1,079
    edited November 2014

    Everything sound good=so happy for you. It didn't work out for me but I still believe that it can happen

  • screech
    screech Member Posts: 212
    edited November 2014


    lilylady-Thank you!  I had my LAST radiation this morning.  Please keep believing it can happen-I am trying to believe it can happen for me too!  This disease has robbed us of so much but we can still keep hope alive.

  • Foxanne
    Foxanne Member Posts: 16
    edited February 2020

    is your wife doing ok ?

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