Oligometastatic Prognosis
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Thanks for sharing this Bliss! I was dx 1/18 with a single rib met, so 18 months with MBC and still NED, after blasting it with rads and on Faslodex, Ibrance and Herceptin. I was originally dx in Dec 2002. Are you only on Xgeva?
And yay for you chemokaze! We are on a similar path.
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Cool Breeze- Good article much in line with what I have read, already about Oli
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Yay for Chemokaze and Lauren, too! I will get Xgeva quarterly starting Aug. 1, but I also take daily Exemestane. I've been on it for 18 mos.now, and so far so good. I first took Anastrozole, but after 7 mos. had such bad SEs that MO switced me to Letrozole. Got 17 mos. on it before I got bad SEs, so hoping I can hang with this 3rd AI.
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Hi, popping in to say that I am now 8 years (2011) from my original diagnosis of tnbc stage 3 and 6 years ned (2013) from lung spread. Wishing everyone hope and long remission
Hugs Rose
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RosePenny,
That is wonderful! Wishing you many, many more good years
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I think I may be able to join this group. (Fingers crossed.). My MO feels that my lung nodule is not actually cancer now because it has not changed at all since I started treatment. My primary tumor is gone and both liver mets are now decreased to below 5 mm. I have consults set up to enter a trial using sbrt and surgery of primary tumor/primary node with systemic treatment vs. systemic treatment only. This sounds similar to what some of you have described, and like the abstract that CoolBreeze shared. I think I’m game for the trial if I’m accepted. Any downsides to being part of a trial? I feel like it could be my contribution to others down the road.
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Thank you so much for posting Rose. Sometimes I feel silly for hoping the best with Tnbc as you don't see many good stories. So good to see you're doing well.
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congrats to RosePenny!!! I agree with allybee, it’s so great to see a triple negative success story. Here’s to many more years for us all!
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RosePenny,
What awesome news! I also wish you, and all of us, many, many, many more years to come!
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Still here and grateful. 4.3 year since de novo diagnosis with tiny liver mets and 2.5 year since SBRT to residual liver mets. Last CT a few weeks ago let’s me forget about cancer until next April
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Bstein, great news and glad you've checked in. We were dx around the same time, and I feel the same gratefulness. I have scans coming up in December, and hoping I remain oligo. Hugs to all!
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- I was recently diagnosed Triple Negative lung Mets Oligometastatic. I’m currently NED .
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Hi Foxanne. Welcome to the thread and congrats on NED! Fingers crossed it lasts for a long, long time.
I'm not triple neg, but I'm celebrating my 5th Thanksgiving holiday today since dx. Very thankful!
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just checking in. Still NeD
One met to the liver that has been gone for a year now
Still doing scans every 4 months and then will spread out to 6 if I continue this way.
Starting zometa in February as I have low bone density already (I’m 32) and to prevent bone Mets
Interested to see how I will tolerate that !
Hope everyone has a merry Christmas
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Hello! I was diagnosed in Dec 2018 with TNBC and mets to the lung. I have been on Abraxane since then with local treatment (lumpectomy to the breast tumor and SBRT to the lung). PET scans have shone no progression since the very first one in 2018. I showed my Oncologist that he could treat me with curative intent and after several articles, he kinda agrees. Now I would like to take a three month break from chemo. It would give me a chance to get healthy (along with some supplements and lifestyle changes) before getting back on systemic treatments. I am not eligible for any kind of hormone treatment and would love to stop the infusions. Does anyone have info or opinions on this type of action? Thanks ahead of time
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Still NED five years, . Thank the Lord for watching over me.
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Hi
This forum is amazing - so many informative and supportive people.I am relatively newly diagnosed de novo stage 4 with one met to my L3 vertabrae. This has more or less been removed as a result of spinal surgery to stabilise my spine.
I have also had a mastectomy and rads to my spine and chest. I am currently on letrozole and due to start Ribociclib at the end of the month.
I have been reading a lot about aggressive treatment of oligo disease. Do you all have a view as to whether asking my doctor if upfront chemo may be of benefit in my case? This would be further aggressive treatment but does not follow the usual pattern.
What do people with more knowledge and experience than me think about this?
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raraJ75, we hate that you had to join this group, but wanted to say welcome! We're sure others will jump in here soon with their experiences and advice. In the meantime, may we suggest that you fill out your diagnosis and treatment information on your profile so that other members can easily know your situation and give the best support. To do this, click on 'My Profile on the top right of this page. Then click 'My diagnosis' and fill in your details. You can do the same for 'My treatments'.
We hope this helps. If you're having difficulty with anything around the boards, feel free to send us a private message, we're always here for you!
The Mods
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Thank you for the welcome!
I thought I had updated my profile - sorry! Will try again
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Hi raraj75. I'll just tell you about my experience. I am triple positive with 2 bone Mets. My MO recommended treating me aggressively for oligo disease and I agreed. I did chemo that I tolerated well, radiation to bone then surgery and more radiation. I felt like throwing everything I could at the cancer since mine was aggressive grade 3 with Her2. My MO was fully on board with chemo, so I would recommend asking your doc about chemo and his/her reasoning for doing it or not. If you don't agree with the reasoning then I suggest seeking a second opinion. Hugs.
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thanks Bliss
I have raised the issue with the chemo nurse ahead of seeing the doc the week after next. I thought that would be easier than landing him with it as I am due to start Ribociclib in a few weeks!
I will see what he says and take it from there. I would feel bad about the second opinion but I know that’s my issue to get over0 -
raraJ75,
i was given a choice between chemo or an AI (this was pre-Ibrance, Verzenio). As a less is more kind of person, I went with an AI figuring that chemo would always be there. I just hit my 8 1/2 year NED mark. I had a 2cm lesion on my upper femur. After rads to the femur, I have gone through all three AI’s (I kept switching in hopes that joint pain would lessen). I’m currently on exemestane. Both my mo and second opinion mo agreed that either choice would be good treatment plan. My personal instinct was to go with what seemed like the least aggressive choice. Not everyone’s cup of tea as a few people thought I was being too passive, but the fact that they were presented as equal options made me feel secure in my decision. Things are not perfect but I’m not going to complain about 8 1/2 years of NED
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I am not sure if I will still fit this category as I will get results of my first stage 4 PET scan tomorrow. My initial scans showed the cancer was in a lymph node and my collarbone. I am praying that nothing else shows up on the PET and that hopefully, the tumor shrunk from the chemo that I just finished a few weeks ago. I have been trying to find out what Oligmetastatic treatment should be for cancer that is in the bone. I am trying to see what the difference between treating this palliatively versus treatable (oligmetastic). I am ER+ PR+ Her2-.
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Hi.
That is what I am trying to work out too. Is there a difference? If so what is it? What does “ aggressive treatment" or “treat with curative intent" actually mean!
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hi raraJ75,
I’m not sure there is a textbook definition of either of those terms. I suppose, in my mind, aggressive treatmentmeans some of the rougher chemo drugs, maybe rads or just about anything conventional medicine has to offer. Curative intent? That baffles me a little since there doesn’t seem to be a definitive way to determine if one is cured at stage IV. I have been NED for 8 1/2 years. I think of myself as darn lucky, but never cured. I suppose if I die from something else, people will think I was cured of bc 😉. There is still so much that is unknown about many cancers, but bc is a true mystery wrapped in an enigma.
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If you're Stage IV de novo, aggressive treatment for oligo might include breast surgery since it usually is not recommended if they know you are Stage IV at the outset of treatment.
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RajaJ75 - I looked up some of this before I saw my oncologist last Thursday so that I could ask him questions while he was giving me results of my first PET scan. Thankfully, my PET scan showed no other cancer other than the cancer we already knew about in my collarbone. I just completed 12 weeks of Taxol about three weeks ago and will be meeting with a radiation oncologist next week to get set up for radiation. Here is a link to an article I came across the other night: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995374/ . I admit I cheated and only read part of it and made my husband read the whole thing. He retains information much better and I wanted him to have the information before the doctor visit so he could ask questions, if needed. I am ER+ PR+ Her2- (recurrent from a previous breast cancer in 2010) and diagnosed stage 4 last September. According to this article (and different sources may see things differently on treatment) for my situation, surgery on the bone would not be done because there was risk that it could actually cause the cancer to spread. Obviously, if someone had a broken bone or something like that, surgery might be done. I am pretty new to the whole stage 4 treatment so it is great when others who have been dealing with this longer can give us their thoughts. Thank you exbrnxgirl and Olma61.
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Thanks cowgirl!
I have already had surgery and rads following my diagnosis in September.
I am interested that you have had taxol. I am on letrozole and due to start Ribociclib soon. Did they say why they did chemo rather than hormone and CDK inhibitors?
The whole thing is so confusing isn’t it!0 -
raraJ75 - I am a recurrent case of breast cancer. My original diagnosis was in March of 2010 and I was stage IIB. At that time, I did not do chemo because of my Oncatype score. I did have to do 25 rounds of radiation. I had a mastectomy and reconstruction and went on tamoxifen, then had to have a hysterectomy because of the tamoxifen and then was on AIs until I had to quit them because of damage to both knees that resulted in both knees having to get replaced in 2015. From your information, it looks like your cancer presented at Stage 4 rather than a reoccurance. That might be the difference in some of our treatment plus, I am sure that there are a lot of differing opinions from oncologists on how to treat us. I believe the chemo was to try to see if we could get the cancer to shrink some. From my reading, breast cancer in the bone does not respond as well to chemo as organs do and my oncologist did confirm this but I did get some shrinkage. I get a monthly XGEVA shot that I will be getting my 4th one at the beginning of February. I will be starting Ibrance and Faslodex as soon as they get in so probably this next week. I will see my radiation oncologist next week and will hopefully be starting that asap. Was your surgery for a mastectomy and did they remove any bone?
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Thanks Cowgal (sorry for earlier misspelling of your name!) You sound like you have had a very difficult time since your primary. The drugs can be so hard to tolerate cant they. I feel like I am 90rather than 45 most days!
Yes I went straight to stage 4. I have had a mastectomy and also spinal surgery which has removed my “infected” vertebrae and replaced it with a metal cage . My CT scan last week showed no other signs of disease.I just want to carry on being aggressive but only if here is a benefit.
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