I am looking for anyone who is oligometastatic, specifically her2+? interested in treatment plans.
I was oligo at dx with a single hip bone met (treatments listed below) but with brain mets now, I’m out of that category.
I am oligo, with a solitary brain met, but HER2-. My treatments are also listed in below.
My mom had a solitary brain met around 4 cm. Removed it by survey 2 weeks ago. Now Dr planned for 10 days of whole brain radiation. Praying this met should go away.
Welcome to the community. We are sorry about your mom's diagnosis and glad that you reached out here. You also may want to visit the Forum for Caregivers of those living with stage 4 breast cancer where you might be able to get more support for yourself. Keep us posted on how things go for her and you. The Mods
I am currently oligo, solitary brain met April 2016, I had partial brain rads, then surgery, then tumor bed gamma knife and rescan soon too see how treatment has worked. I also do body scans biannually to keep an eye on other possible sites of mets, nothing tearing its ugly head yet. June will be 4 years from my original tnbc brca1 Dx. I am grateful everyday ♥️ My drs think I have good chance of remaining oligo because of my subtype but can never be too sure
I am oligo with mets to my liver. SBRT April 2017 and “no evidence of metastatic disease” 9 months out. So grateful
bstein that is great news. Can you tell me are you her2+? currently on any treatment? thanks!
I am now one year out from stage 4. Oligometastatic. Now NEAD. Due another scan anytime.
One met to mediastinum LN. Currently on maintenance HP and Letrozole.
Have read some hopeful studies on better long term prognosis for Oligometastatic patients.
Jackboo09, can I ask you what studies you have read? I had a consult at Dana Farber and the Doc was not encouraging that oligomets had a better prognosis.
I’m triple positive and have recently been told that I’m oligometastatic and could possibly be an exceptional responder due to being HER2 +ve, although it is too early to say this yet. I’ve had no evidence of mets (had 1 liver, 2 bone) since August 2016. I have been on Herceptin and Perjeta since Oct 2015. At one stage I was told it was also in my lungs from diagnosis, but they later decided I just have 3 harmless nodules.
I had a local recurrence in my breast last August and commenced on tamoxifen also, but when the tumour grew after 3 months I eventually agreed to a mastectomy. I only did this because I was told that if I could get local control I would still be Oligometastatic. I originally had Inflammatory Breast Cancer but the pathology came back mixed tumour surrounded by large amount of DCIS, with clean margins and no evidence of IBC. My surgeon had been insistent it was still IBC, and took extra fat from under my skin leaving me with a concave area. I refused full axillary clearance and had only 3 lymph nodes removed with only one positive, being completely replaced with cancer cells extending around the node. My case was discussed on Friday at the multidisciplinary meeting and it was agreed that radiotherapy to my chest wall, axillary and supraclavicular nodes was appropriate. My Radiation Oncologist rang me and said he is “giving me the benefit of the doubt”, and treating me as if I had never had mets! I am so thrilled that the meeting agreed with this, especially since my previous Oncologist dismissed the existence of Oligometastases when I asked her. So I am continuing on Tamoxifen and H&P.
I have hope again, and I think that is so important when living with this disease 😊
BellaTassie15 thanks for your response. have you ever discussed stopping h&p?
Yes Meme I did, I assumed they weren't working and that was why I had a local recurrence, but my Onc assured me they were keeping the mets at bay. I will be staying on them until I get new mets. I will then go on to TDM1 (Kadcyla)
BellaTassie, great news! I had 19 nodes removed and was worrying about lymphedema for a long time so good for you to be sparing yourself that. I was also radiated on the chest wall, axilla and supraclavicular nodes after surgery. This was a good way to hedge my bets and most likely still is. Hope you get a really long run.
I had a solitary liver met that measured 4.6 cm from the get go and that was in October 2011. I have officially been NEAD since August 2012. I am now just on Herceptin as the Perjeta was causing some serious diarrhea. Hope this helps. Hang in there.
Ilimae I would say as long you are on HP which doesn‘t cross the BBB and your brain mets are under control I would consider you still as oligo as taking into account how good brain mets can be controlled the rest of your body will respond the same way to HP as without brain mets. And I like to see it from that point of view that HP prevents further systemic disease after my tiny liver met of 11 mm resolved after 6 rounds Taxotere and HP and 5 further cycles HP. :