Oligometastatic Prognosis
Comments
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Hi boo,
I just wanted to let you know that I had abation on one liver met over 3 years ago and have been Ned since then. It is an incredibly easy procedure ( outpatient, minimal recovery ) compared to having surgery. When I met with a liver surgeon, he said it might be better to try abation first and then if it came back, to do the resection.
Just wanted to let you know that abation can be very successful.
Laurie
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Hi Laurie, so glad to hear that the liver ablation was a success! I am going to discuss all procedure options in detail when I am given an appointment to meet the liver experts. Ablation certainly sounds an easier option. I'll put my true in whatever the experts say. I hope that you continue to be NED for ever and ever!
Boo
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Well, here in the states, from what I've been told, not very many hospitals offer SBRT. Often times, its called gamma-knife, or cyber-knife, as well as SBRT. With RFA, SBRT there is more data out there regarding progression-free and overall survival (with breast cancer), than there is with liver resection. I think you should definitely bring-up these options to the liver experts and again, keep us in the loop with what they tell you! Of course, you have to remember that surgeons like to :"cut" and will always encourage surgery, just as RO's like to radiate. Again though, my surgery was a piece of cake.....obviously, the more liver they have to take the longer and harder the recovery. In my case, they only had to do a wedge resection. And often times, the location of the tumor can make it more difficult....there are lots of variables when deciding about surgery.
Sorry to hear you had a rough day today after chemo!
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Oh, Wildrumar, now I see! I did not know that SBRT is also called Gamma Knife! Well, I have heard of that. But it has not been mentioned so far as a treatment option so I will be sure to bring it up at the right time. I see my oncologist on Thursday May 29 for a cheery chat before I go to the ward to stick my arm out to get the next chemo dose, and he is going to show me my CT scans, which I have never seen before so will be interested to see it all for myself. The main tumour is in section VIII of my liver with the two dormant tiny freckles in Section VII. apparently they are so small that onc is not sure they will want to microwave it in case they don't hit exactly the right spot. I have no idea what kind of surgery will be suggested, and don't know what a wedge option involves! I'm up for doing anything that will get this out of me and help keep it away, however invasive.
Thanks for the advice. Will let you know how it panes out when I have more news. I really do appreciate your advice, and am glad to hear that you did not find recover from surgery to difficult. What happens next for you? When?
Boo
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Hi Boo - I will be getting set up (simulation) this Wednesday for SBRT, which should start the following week. I've been told I will probably go every other day for a total of five times. The reason I am going every other day is because this particular lesion sits posterior on the liver, and it is behind a rib. He said I will probably have some tenderness in that rib.....but nothing that a stronger anti-inflammatory can't relieve!
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Hi Wildrumara, well good luck with the setting up, these folk are so accurate with this sophisticated and powerful equipment. I find them amazing people. And even more luck to you when your treatment starts the following week. Do be sure to let me know how it goes. If I disappear for a few days form Thursday it is because I will be in chemo la la land. Hey ho.
Fingers crossed for you and the SBRT being 100% successful.
Boo
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Hi Wildrumara, am thinking of you…how is it going? Have you completed the setting up? Started the SBRT treatment yet? Am crossing fingers for you that it is not too bad an experience as a treatment, and sending positive thoughts your way. Do let me know how you are getting along. When will you get follow up scans or results of some sort?
Meanwhile I am crawling out of the chemo fog from my fifth round of Taxotere, man the fatigue builds! And the side effects from the Neulasta shot are a challenge. I have been referred to a liver surgeon, but not met yet, although I am looking forward to meeting her and am delighted to be having a woman surgeon for the first time in this treatment world. I am sure all male surgeons are as good as women surgeons (!) but I do somehow find the idea of a woman surgeon very comforting.
Take care and send an update. Thinking of you,
Boo
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Hi Boo - I had my first treatment yesterday. I feel fine and I don't expect to have any major SEs. I had a woman surgeon. She was great. Actually, there were four liver surgeons on my team, but she ended up doing most of the surgery along with another male surgeon, and then was on call the weekend I stayed in the hospital. LOVED HER! Yes, the fatigue and symptoms do get worse with each treatment. I remember by my sixth treatment of TC I was wiped out! Had to go in for fluids cuz I could barely eat. Hang in there.I've had quite a few women PM me regarding resection and other radiological procedures for liver mets.....trying to get my story out. Seems like a lot of MOs "pooh-pooh" this and I do understand that resection is not standard of care, but I still say if you're young, healthy, have small mets only in your liver, it should be an option Just seems from what I've read on other liver mets threads here on BCO, women say "well. my oncologist did not recommend this, etc..." Again, this could be all for naught, but i breezed through my surgery and I plan on breezing through my SBRT. I'm going for it, damn it! LOL! And i'm glad my docs were willing to give it a shot! Nuff said!
Yes, I will have follow-up scans. Probably beginning of July!
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Hi there Wildrumara, good to hear form you and that treatment is going ahead without any problems, that is so good to know. I am keeping my fingers crossed that it is highly effective. I suspect that I may be following in your footsteps with first surgery on the large area and then some form of microwave ablation on the two tiny freckles that are apparently now too small to measure. So I am keen to benefit form your experience as much as possible. Your positive approach is heartwarming. My onc agrees totally that liver resection when a small tumour only and no evidence of disease anywhere else in the body is the way to go. I like the plan too, so that's what I want! I know he has recommended this plan to my surgeon but the final decision on what treatment I get will rest with her. But she knows my mind already as my onc has told her…so I am hoping we will be in agreement on this approach. You see, I am going for it too. It's my life, and I fully intend to hang onto it for as long as possible.
Meanwhile hang on in there, and hope the rest of your treatment runs smoothly. How many treatments will you be having in all?
Take it easy and rest up between treatments, this is a time to be kind to yourself. If I lived a bit closer I would send you a cake! Possibly a nice old-fashioned English Victoria Sponge cake with some home made jam in the middle.
Best wishes, Boo
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Hey there Wildrumara, how are you? Finished the SBRT? I hope that all went well.
Boo
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Here's a short article, with good news, on tx of limited bone mets:
Many thanks to joanquilts for the link.
Caryn
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Thanks for posting this. I am wondering if I would still qualify for the trial since my treatment is underway. I keep questioning whether I should have had chemo again. This is really bothering me and I wonder if it is too late now to do chemo. Opinions? Thanks.
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I am wondering the same thing Kandy. I had one met to start and two years later had another one pop up, but that is it. I would be interested in this doctor's opinion. Anyone know how to go about getting an opinion from MD Anderson?
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Kay - there's contact info at the bottom of the article.
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Thanks Caryn and JoanQuilts!!! My oncologist was trained at MD Anderson and when my bone met was first diagnosed he talked with them about excising it (it's on the 8th rib)Then it was determined we would wait to see how the Femara was working. I just had my first follow up scan this week after 4 months of tx and there is nothing new. Yea! So when I see him on the 18th I'll ask about the study or at least about excising the met. I also had a chest wall recurrance so I don't know if that would disqualify me for the study. I sure do like the idea of excising the rib met!
Lisa
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Thanks, Caryn and Joan! It's amazing that this is the only study of its kind out there.In one patient, Dr. Strom delivered postoperative radiation therapy to the chest wall and regional lymph nodes and the metastatic sites concurrently.
They did the same to me here, also using intensity modulated radiation therapy. So if I were in that study that would be 14 out of 25 still NED, except it's been 6.5 years for me instead of the median 2.25 years.
Kandy, they used hormonal therapy too as systemic therapy in the study depending on tumor characteristics. Kay and Kandy, I think it would be worth getting a second opinion from Dr. Strom or asking about the trial.
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Thanks for posting Heidihill, 6.5 years that is amazing. Definitely is very encouraging. I go this week for another bone scan for recheck. I think as soon as I have the results, I am calling for a second opinion. Thanks again.
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I took a closer look at the trial. I am not sure why but one of the things that exclude you from the trial is previous radiation to the metastatic site. I had radiation to my L2 vertabrae when they first found it. So I wouldn't qualify for the trial. Sorta disappointed because it seemed like someone actually believes those of us with limited mets might be curable. And even if it didn't work out for me personally, I would love to help give hope to those in the future. It would certainly give reason for early stagers to get regular screenings for metastasis. If they catch the spread early it could mean the difference between cure and terminal. But right now they don't screen you unless you have symptoms and by then the spread might be too extensive. I just don't agree with that philosophy.
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MD Anderson allowed us into the treatment protocol, outside of the trial. My wife has 4 bone mets, semi stable for a year. Oncologist here in Dallas just keep dumping the chemo in, and have denied us the Radiology treatment. In seeking a second opinion we were told at MD Anderson that we need to move forward with the SBRT because...." chemotherapy or systemic therapy will not control these tumors". They keep coming back after chemo but don't spread. Some groups just treat for control, MD Anderson is going to ablate the tumors with SBRT, we do not qualify for the trial, but this aggressive curative idea has become part of their plan. The head of radiology said......" if it was me, and I had these four mets, I would do it now. You have a limited window of time to control the disease before mutation and spread".
best regards dear women,
Doug
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Hi, everyone!
A few months ago I was diagnosed with spine mets T6 and partly T7 with compression fracture. That's over 1,5 years from primary tumor treatment (stage 3A, low grade, node 5/10, ER+/PR, HER-, ovary removal surgery). I was on Tamoxifen for this period.
I went SBRT Novalis xt 4x5Gy=20Gy month ago.
As it seems Tamoxifen is not working now I have AI Anastrazole. And that`s all for systemic therapy.
I am planning to go to PET/MR or PET/CT to exclude distant mets. (2 months ago, it was clear).
I also had communication with spine surgeon vertebrologist, who thinks that I need surgery.
I had a second opinion that I need chemotherapy.
Has anyone had a similar situation?
What do You think about my situation?
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leva, for bone mets you should also be on a bone-directed therapy such as Zometa or Xgeva. With either drug you should also be taking supplemental calcium and Vitamin D as recommended by your doctor.
I'd suggest avoiding chemo for as long as possible if you're hormone receptor positive, which it seems as though you are. Only when the list of possible hormonal therapies has been tried and failed should you go on chemo. Other options would be to try a clinical trial.
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Leva, I posted a link on stabilizing your spine on the Bone Mets Thread.
Re: chemo. I also had chemo for bone mets, confirmed by a second opinion, and agreed to by several other doctors. So it is an alternative to an AI or tamoxifen, but is not for everyone. I was in remission after 5 cycles.
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I was just diagnosed with stage iv breast cancer May 15 2015, ER+ PR+ HER- with 1 met to my iliac crest. No one here in NY wants to treat me aggressively. I have researched the idea that treating someone like me could benefit from aggressive treatment. I have read about MD Anderson and one article in particular reference oligometastatic was the term they used. I did call but have not set up an appointment because I was not sure if it was a trial. Sloan Kettering is doing a trial but I have a 50/50 chance of getting the aggressive treatment = a mastectomy + radiation then put on systemic therapy the other arm of the test I would stay on my systemic therapy. I really want to fight aggressively. Please if you could share any information I would be so grateful.
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Hi Bobcat - I had to meet with 3 doctors before I was able to find one who would treat me aggressively. After finding the right doctors they agreed on aggressive chemo, surgery to my breast and liver, and radiation. I only had one small tumor in my breast and one small tumor in my liver and they do believe there is benefit in treating this aggressively for first line treatment. At least I feel like I am doing everything I can to keep the cancer at bay for as long as possible. I would suggest you get multiple opinions until you find a doctor you like. Good luck!
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Hi Bobcat
I was just skimming over this thread and saw your post. My onc treated me very aggressively. I was dx with mets from the start (i had 4 lesions on my liver, my right ribs, left hip and chest nodes). I had a lumpectomy but they found my mets just before starting chemo. Clean c/t scan before surgery but bad pet scan post surgery before starting chemo. My onc said she believes many women are stage 4 but not picked up on c/t scans. Pets are not necessarily ordered before starting chemo. Anyway, I did 6 cycles of Taxotere, Carboplatin, Herceptin. After that I continued on Herceptin until this very day. And added in zometa which I finally have been now released from. This was May 2008. I was scanned in June 2008 after three cycles and was NED. I am still NED. in January 2009 she added Tykerb to my Herceptin for brain protection and I did this for a year. She also put me on Tamoxifen although I am just very mildly ER pos. Also removed my ovaries in 2010 too. I did 3 1/2 years of Tamoxifen and then another 2 years of Arimidex. Anyway, pretty aggressive treatment but I have stayed NED now for 7 years! I think there can be real benefit in it.
Jen
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I totally agree that alot of women are not evaluated correctly !!!My surgeion told me that I was a stage 2. I was the one who asked for the Pet scan and that is how my met was found and that is when they took the masectomy off the table, I believe everyone should have a pet scan and a mri with contrast of their brain. Pet scans really give no information about the brain the whole brain lights up so an mri with contrast is definittive. I went to a top Hospital in NYC and really I cant believe that they were not more thorough I had to ask for everything which I thought should have been protocol. . I have been a RN for about 25 years and believe me I have researched the whole aggressive verses non aggressive and I do believe that going agressive is the right treatment for myself. At present I dont have anything else health wise so I believe that I could tolerate the masectomy and radiation. My MO is against it when I asked him why he stated you could have a blood clot or infection I could get that if i get a tonsilectomy REALLY. Most of the larger medical facilities are all running trials on this very subject Sloan is in phase III why would they be doing trials if there was not some type of evidence that this couild be signifiacant to stage iv treatment outcomes. I believe I should have a voice and choice in my care just like all the other women with breast cancer.0 -
I have one bone met, rendered necrotic by rads, so I fit the definition of oligometastasis. I did have a bmx, but just a few weeks later, my bone met was found during an unrelated PET scan. After consultation with my primary mo, second opinion mo and RO, I decided not to do chemo. I did have rads x15 to the bone met, not for pain relief, because I had no pain, but to "kill" the met. I have also been on an AI the entire time and just passed the 4 year mark. I live a completely normal life and feel comfortable with having chosen not to do chemo. My bc was grade 1, so rather indolent. Chemo will always be there and for me, aggressive tx didn't seem to make sense. Whether we are stage IV or not, we may not always have a choice with our tx, so feeling limited is not exclusive to stage IV. We do have a voice, however, and good brains in our head. Yes, we need to advocate for ourselves, but we need to have some (but not blind) faith in the professionals as well. Anyway you look at it, bc is chock full of unknowns so it's difficult to know what is "right". I would be very naive to directly attribute my good health to the path I've followed, because the reality is, I just don't know. I hope everyone who is trying to figure out the best course of tx with oligometastasis finds what makes them comfortable and, most importantly, continues to find joy in their lives.
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I have been looking into this for a while. I have had 7 bone lesions for 3 years now. 4 of them are quiescent and have been since treatment started. Now the other 3 are acting up. I am scheduled to start SBRT next Monday on these 3 mets. Five treatments and that is it. I am going to UF Shands in Gainesville to Dr Paul Okunieff. They are treating certain criteria and I don't know all of the criteria, but its less than 10 lesions confined to one organ. With 7 mets the chances may be pretty slim for "cure", but who knows, maybe I can for years before any others pop up since I will of course be on systemic treatment. I am so grateful to be able to get this treatment and meet a Dr who believes in really trying to get cures and long term remissions for people. I haven't had tx yet but my consult with him was Friday and then I had the simulation. They were so organized and by the time I left I was all set with my first rad appt, FMLA papers taken care of, they called my insurance and told me what I could expect to pay out of pocket, and arranged for me to stay at Hope Lodge for free during treatment. I drove with my parents from PA to FL and we planned to stay at our trailer and drive every day to treatment. However it takes 2 hrs to get there so my parents will drop me off to stay there for the week and then have a short vacation at the trailer during that time. After the consult and sim they need a week to work out the treatment plan, so I am having a weeks vacation down here in the meantime. I would encourage anyone interested in this kind of tx to look into this facility. Tomorrow I am meeting for lunch a bco friend who lives down here.0
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HLB,
Wishing you the best. It sounds like a promising approach. The whole concept of oligometastasis fascinates me, especially since some docs don't even believe such a state exists. I'm still holding steady with one necrotic met, but I keep my eyes open , because that could change in a minute. Take care.
Caryn
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Thanks Caryn, I forgot to mention he used the term oligoprogression, meaning some cancer is still controlled while some is not, and suggested that its possible the treatment is still working on the dormant lesions. So I guess it is a way to possibly stay on the same systemic treatment instead of switching. I would love that but my onc won't agree, I'm sure. I will tell him at my next appt that I had this radiation. I am always glad to see you are still doing well.0
