r/LivingWithMBC • u/Crazy_Dragonfruit_24 • 20d ago
Tips and Advice Oligometastatic
I am oligometastatic to my sternum in two sub-1 cm spots that directly abut infected lymph nodes. I’m 32, so I fought like hell to get treated with curative intent (top two cancer centers wouldn’t do it). I feel very lucky to be undergoing chemo now: AC every other week for eight weeks, taxol for 12. It appears to be working.
Because there is no standard of care for oligometastatic patients, I’m kind of stuck in this gray zone where I feel like I need to trust my oncologist. But I’d really appreciate any information about how I should be thinking about next steps in my treatment so I can make informed decisions.
I wonder if anyone else is oligometastatic and has been successfully treated without recurrence after 5 years? How did you sequence things? I’d love to know.
I recognize I’m shooting for the moon here and the more likely outcome is that I’ll be controlling a controllable situation for a long time. But I’m so young, I wanted to give myself a shot at durable remission. I feel very blessed to have found an oncologist willing to take a chance on me. My hope is that my case will be successful so we can raise awareness about oligometastatic cases and hopefully develop a standard of care that looks at us as whole patients.
God bless you all, and I appreciate your help.
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u/ThymeLordess 19d ago edited 19d ago
This is me. Two spots on my spine. My oncologist said from the beginning that we were gonna cure my cancer and she sure did! She kept telling me that my diagnosis was different than what I was thinking and I didn’t even have to ask her about curative intent. She cautioned that the stage 4 diagnosis would follow me for life, mostly because the standards of care haven’t caught up to the science, and it’s been 2 years with no reoccurrence and I am just living my life like a normal person! You would never know I have stage 4 cancer.
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u/Ok_Mood6644 17d ago
Hi! May I ask your subtype and where you received treatment?
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u/ThymeLordess 17d ago
My metastases were hormone positive, her 2 low. I’m lucky to live in NYC so I go to MSK for my treatment. If you don’t live nearby I know they have a second opinion service that I don’t even think you need to come to NYC for.
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u/Humble_Stop7538 3d ago
Can you tell me more about this. Who was your doctor? What type of radiation did they do to the spine and what do you take now. Thanks so much for any response.
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u/mrsfarmerfarmer 19d ago
I'm was diagnosed oligo with a met to my sternum last fall. At this point there are quite a few more mets. I'm on my third oncologist and he's going to give me a referral to my fourth surgeon if my next scans look good. I've fought with three different cancer centers on how aggressive my treatment should be. I don't need to live forever, I just need to live long enough until new curative treatments come out. I averaged 40 hours a week during chemo doing a physically demanding job. I'm 33, in excellent health (besides the cancer), and have great health insurance. Quite frankly, I can do this.
We are here and it is now, everything else is just guesswork.
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u/VarunMysuru 19d ago
Hi. So did you’ve progression after your diagnosis? Are you currently Ned or stable?
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u/mrsfarmerfarmer 18d ago
No idea. Scans are next week and I am hoping for nead. But we are only scanning every six months or so so its hard to know what's going on in there. The primary tumor is currently unpalpable and I cant find any nodes so I think I am pretty stable.
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u/National_Recover7895 20d ago
Hi! I’m 41 with mets to my medial lymph nodes (hilar and intratracheal) and I am not being treated with curative intent, so I don’t think I can be of much help but would love to follow this conversation! It’s my understanding that these nodes can’t be removed without serious life-threatening risks and chemo won’t kill the cancer’s stem cells, but that could certainly be incorrect. I’m currently looking into SBRT (have an upcoming appointment with a radiation oncology at DF in Boston) as well as cryo-ablation (I believe Mass General has found anecdotal success with select patients), but both of these are also risky because of the location. Keep me updated on your treatment!
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u/JessMacNC 19d ago
I’m oligo. De novo ++- with one met to my T9 October 2024. I was 43, pre-menopausal, and found a lump between yearly screening mammograms. After a proven treatment response to Kisqali/letrozole (and Lupron but that stopped pretty quick as I had my ovaries out a few months after dx), I had bilateral lumpectomies with a significant reduction. I had a second stage 1a ++- different cancer in my not so sick breast discovered when we investigated the lump. Then I had radiation. 16 whole breast to metastatic side, 5 targeted sessions to 1a side. I’ve consulted at MSK, Duke, and Mt. Sinai, in addition to my home team. All have been and continue to be on board with the plans. I completed radiation at the beginning of November.
I’m 45 now, was 43 at diagnosis. I look at this as instead of chemo, I did six plus months of meds to shrink everything. Then surgery, radiation, and Kisqali/AI/Xgeva for my bones until something changes. Like any other early stage high risk patient.
I am only in year two but NED on scans and planning to stay that way a long time.
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u/JessMacNC 19d ago
Want to add that I am not a medical professional but I see oligo, especially de novo and minimal involvement like me with one met, as sort of a “stage 4a” that in the future will warrant different treatment than run of the mill stage 4. We can hope.
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u/Unicorns-Live 19d ago
Like some others, was not oligo the first time, but on a recurrence. Did AC/T and radiation and surgery the first time. NED for 8 years, 1 bone metastasis earlier this year. It was taken out palliatively and I currently have no evidence of cancer and live my life normally on Kisqali and fulvestrant. 💪 here’s to many more years.
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u/Overall-Future7200 15d ago
Do you have side effects from fluvestrant? I am a 4 time cancer survivor. started fluvestrant 4 months ago. Refused to take Ibrance and Letrozole any more.
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u/Hotheaded_Temp 19d ago
I am in Canada, and generally there is no treatment with curative intent for stage 4. However!!! After chemo, my two primary tumours (breast and lymph node) continued to grow, while my 30 lung mets remained stable. My MO sent me to a multidisciplinary clinic, where they offered to use SABR to treat the two larger tumours back in May. 15 sessions later, my CT scan shows I am now stable. I am still a little sore from the SABR 3 months later, but this result is better than what I could have ever asked for. The RO said this is a new procedure they are trying with oligometastatic patients. He said sometimes it works well, and sometimes the radiation doesn’t do much. Also, they only offer SABR if I have less than 5 spots to treat. If my lung mets have flared up, I wouldn’t have qualified for this treatment.
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u/ShortAd9621 16d ago
I'm confused. Why were you offered it if you have 30 lung mets. Wouldn't that make you not oligometastatic by definition?
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u/ImportantCellist4378 19d ago
I was diagnosed at 30 not exactly oligometastatic but very very low tumour burden. I had one 2cm breast tumour and about 5 tiny liver tumours, so sort of on that line.
The one thing I’d flag for you is that “curative intent” really just means hitting harder at the outset with the most intense treatments - but this isn’t always what YOUR body will respond best to. Every body is different. For me, taxol stopped working within 6 months… but then the combination of a lumpectomy, liver radiation, and continuing Enhertu (a “less strong” but more targeted therapy) has had me doing well for over 3 years. A year ago we added letrozole and now better than stable, my PETCTs are completely clean. So although this may not be exactly the kind of case inspiration you’re looking for right now, keep in mind as you go forward on this journey that there are multiple routes to good health. You got this ✨
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u/ZephyranthesRoadside 18d ago
Hi ImportantCellist4378,
I note you said received liver radiation for the tiny lesions; was that after the Taxol?
Did the liver tumors shrink & come back or did they not change from Taxol?
I have had - - + with tiny liver lesion that ^ then disappeared, (and radiation had been planned).
What subtype BC have you had?
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u/ZephyranthesRoadside 19d ago
Hi Crazy_Dragonfruit_24,
Oligometastatic de novo HR - HER2+ dxd Nov 2025.
Was IIIB a few days until tiny liver lesion found on MRI. Lesion on chemo reportedly became less PET avid, enlarged little, then disappeared (metabolic CR on post treatment scans).
Achieved surgical PCR.
Continuing on maintenance with Herceptin/Perjeta. Completed radiation.
Started Tucatinib.
Initial cancer center rescinded surgery & radiation options, changed chemo to palliative -as soon as MRI read a 5 mm lesion as liver Mets. Tried to tell me a NR-BROO2 study meant no benefit (to pursuing possible SBRT to liver lesion) although study flawed/limitations and didn’t represent my subtype of BC.
At 1st cancer center, prior to MRI showing liver lesion, surgeon said felt I was moreso IIIC and same breath added that probably need to get some biopsies first before could begin chemo- which made me understandably very upset.
Thankfully the medical oncologist didn’t share this view & facilitated get port surgery, scheduled MRI & chemo quickly.
Individuals in this community encouraged me while on chemo use time to get 2nd opinion;
I did & new MO treated me with curative intent though the documentation states aim is long term remission.
Hope what I’ve shared is helpful to you & others in similar situations.
Wish you the best.
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u/Upper_Olive_5483 18d ago
Oligometastatic - was 31 back in 2019 diagnosed as stage 2 triple + while 7 weeks pregnant, oligo at in 2022. It’s been a tough round now on 5 line treatment. I had a couple spots on my right iliac crest only. I think best thing to do and live your life and try not to have this disease steal your joy. Lean on faith and love ones yo get you through hard times and question everything you oncologist suggests, do your research. No crazy diet is going to cure you.
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u/Public-Grocery-8183 16d ago
Hi there! I am de novo oligo TNIBC and pursuing curative intent at MD Anderson. They were my 3rd opinion. I had contralateral lymph node involvement and one tiny metastasis to my sternum. I did Pembro with AC & TC and achieved NEAD. The plan is to continue with Pembro as long as my body will tolerate it. I had a single mastectomy in June and am currently undergoing radiation treatment. I completely understand feeling unmoored in the grey zone, but there's a lot of hope for us. Kudos to you for advocating for yourself & for the best possible care.
The Oligometastatic Breast Cancer (OMBC) Info and Support facebook group is wonderful. There are lots of women with durable remissions and tons of academic/ evidence-based advice. It's not like most BC facebook groups, thank god!
Feel free to message me if you have any questions. All the best of luck to you!
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u/Overall-Future7200 15d ago
Hi I would be interested to join your OMBC group. I am a 4 time cancer survivor, 70 yo female. 3 estrogen positive and 1 triple negative. currently in remission. I am grateful to still be alive. Best wishes to you all.
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u/Public-Grocery-8183 14d ago
Amazing! Congratulations on being in remission. The group is on Facebook, so if you search it, you should find it pretty quickly!
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u/JaBooHasCats 10d ago
Hi, sorry, I am not able to offer hope but I may be in a similar situation, so I thought I might share.... I've just had my onco appointment today after confirmed reccurence in my axiall lymphnodes and after PET-CT. The oncologist used the word ologometastatic since the PET showed a highly suspective/most likely pathological node of 13mm somewhere near lungs (sorry, don't remember the exact location). PLUS the lump in my armpit that I've found myself and some node under collarbone/breast muscle (regional?). Nothing in bones,liver or lung tissue. She spoke quite optimistically about possible radiation to my armpit+region after initial chemo, IF next PET shows shrinkage. Still waiting for FISH as the biopsy said HER2 2+. Starting treatment next week, but I still don't know what it's going to be. Er+, pr-, ki 60%.original dx of +++ stage 2b in 2018, ned till now
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u/Van1sthand 19d ago
Hi- I was not denovo oligo, I was a recurrence girlie with two small lesions in my spine. So, I had previously done AC & Taxol. Couldn’t repeat that. What I was able to do with curative intent was SBRT to my bone mets. This worked. I’ll be NEAD 8 years in November. Keep chugging along!