Thread for Stage IV Oligometastatic Folks

Lol yea Jersey girl now but born and raised a Philly girl!

So when I was Stage 3C last year my MO and I were discussing options for the future. I am very fortunate that she is always looking out for my best interest. She mentioned a MO who deals with TNBC at Sloan Kettering and encouraged me to get another opinion if I wished. I am currently treated at Penn so yes this was free of influence. It was a very easy process to have all my information sent over electronically. The 2nd MO wanted me to come in for an initial visit but assured me there was no need to make another trip back to NY. Any further opinions regarding my next plan she said I'm just a phone call away. Hoping that call isn't made for a long time!

I was always pleased with my MO but it was nice to have another professional look over all my history and agree I have been getting good care. Plus the 2nd MO added back in immunotherapy that I had been on before but was taken off it because I wasn't NED after surgery. Apparently a difference in protocol between the two hospitals. So you just don't know until you try and our lives are worth trying for! I know it may feel a bit awkward to mention to your MO but in reality a good doctor would always want what's best for you and not get offended by it.

star2017 and dancing diva:

I appreciate your comments and realize that I should go somewhere completely unrelated. My problem is that the institute where I'm treated is part of the largest hospital network in our area - sort of the "800 lb. gorilla". I may need to find somewhere I can mail the last two sets of scans for analysis, as that is the most pressing problem. Once that's sorted, and depending on the response, I can look for a new MO.

Silas - Ive had lymph node and primary removal after local progression and they took out the usual what they needed to take out and were surprised that they didn't find cancer where they expected it to be. So essentially I had the Axillary node removal in the first two levels, with 4 of 9 having cancer.

Ive tried to go more aggressive with each treatment choice because right now I have energy and the capability to get other complimentary therapies in to help. I would suggest being aware of what could happen and then knowing when/where to get help. I got cording into my thumb and got on it right away with a massage specialist who worked out all the cords and I have full range of motion with that arm. I got a lymphadema consultation to know what to expect and a sleeve, and I have another massage therapist specialising in cancer on deck when I need it.

Is MD Anderson not proposing radiation at all?

Silas, I go to Northwestern and Mayo. I also want either radiation or lymph noderesection. I believe they want to see stability before doing any surgery or radiation because you will need to be off meds. I have an upcoming Mayo appointment so I'm going to ask this question. I know my lymph is my issue it had a high Ki67. It's normal now so I too would like it out. I'll keep you posted. If you hear anything let me know.

silas,

There is likely no clear cut way to go. Potential side effects are not predictable , though it’s good to be aware that they are possible. Surgery at stage IV (mastectomy or lumpectomy) has long been debatable with it most often not being done. However, there is a school of thought that supports it as it’s thought to lessen the tumor burden. In the end, you go with what your wife is most comfortable with but keep in mind that there are no guarantees.

I have a unique story in that I had a bmx with ALND and was staged IIB. About 6 weeks after my surgery, a bone met was found on an unrelated PET scan (and biopsy proven) so I was stage IV all along. After rads to the bone met, I started on an AI and that’s been my only tx for 11+ progression free years. Not very aggressive but for reasons unknown, effective for me. I do have mild lymphedema in my arm and radiation induced lymphedema in my leg (bone met on upper femur). I did have a second opinion prior to treatment once the bone met was discovered. They suggested a more aggressive chemo regimen but also agreed that an AI would be appropriate as well. I made a choice with the full knowledge that it might not be the “right” choice and was fully prepared to change course if needed. While the science of cancer, and bc specifically, continues to improve, there are still many individual variables and unknowns. All the best to your wife in her decision and to you as you support her.

@janky I’m hoping the quiet thread means that most “oligos” are living their best lives off screen. 😁

It is quiet but I’m still here and still oligo. I only have the same single bone met that I had at diagnosis 6 1/2 years ago. I do also have brain mets (5 years) but only a few that pop up from time to time. I don’t post here often because there hasn’t been much to add. Just fortunate to be doing well on treatment.

No progression, nothing interesting to post as I move toward my 12 year mark. Perhaps it’s a good thing this thread is quiet 😊

I'm still possibly an oligo. I have been over 3.5 years since diagnosed with stage 4 with single met to collarbone and 2 lymph nodes. I just had scans this month and am still NEAD. I have been NEAD since July 2020.

lacorneille,

I don’t come to this thread often. I was dx’ed with a single bone met over 11 years ago. Many of today’s treatments such as Ibrance, Kisqali, etc. had not yet been approved. I had rads to the bone met (femur) , took an older bone strengthener for about 3 years (Aredia) and have been taking one AI or another the whole time. Since I’ve had no progression my mo and I have seen no reason to add the newer drugs so my tx remains old school but successful for unknown reasons. So, I’m afraid I have no insights on newer treatments.

I was also considered HER2 low but this did not effect tx decisions. Ironically, as I was being evaluated for a clinical trial for HER2 low patients, my bone met was discovered (Yes, about 4 weeks after my bmx, so it’s clear the bone met was there all along) which eliminated me from the trial. The low HER expression did not factor into my tx plan. Again, it’s been over a decade and approaches/treatments have evolved but I wanted to let you know that I had similar experiences and the HER2 low status did not seem to be a major concern. I wonder what the clinical trial concluded? Take care and now I have to Google that trial!
Found this. I don’t remember if my proposed trial was for Enhertu: https://www.cancer.gov/news-events/cancer-currents-blog/2022/enhertu-her2-low-breast-cancer

Right there with you, dancemom. My young kids are good but parents and inlaws have their health issues . I'm also generally doing well but dealing with aches and pains and movement restrictions that have resulted from radiation to hip and leg. Probably kind of like your frozen shoulder. I am grateful to be alive and generally up and about and able tobe "normal", but I also feel I am often masking discomfort and fear and pain.

I just heard the term oligometastisis in the last few weeks. I am trying to understand. I was diagnosed with mets to the pleura in January. The ER Dr. Said cancer in the pleura has a poor prognosis. The oncologist says that stage 4 is not curable. Nothing else was found. There was one node in the pleura with pleural thickening. It was diagnoses from pleural fluid as the same type of cancer as my breast cancer 7.5 years earlier. It was ER 90% PR 2% Her2 low. On the Ibrance form the Dr. wrote goal cure. That is the only time he ever said cure. He used a CA27.29 to determined when to do a scan. Scan came back no evidence of cancer. I am on Ibrance and letrozole and now they are saying I will only need scans if my ca27.29 goes up or labs change or I have pain. I feel somewhat confused with all this different terminology. Just trying to understand.

Illidae. I feel like they are treating it that way with no further scans without symptoms or a change in my CA 27.29. But not they are really explaining anything. I feel it is unnerving.

Please read my previous posts if you haven't to understand the question. How often do you get scanned when your NED. I was diagnosed in January and was NED by June. First scan was in August to confirm status.