Thread for Stage IV Oligometastatic Folks
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eleanora, My hospital won't let patients get second opinions from another doc in the same hospital/department. It's possible your hospital has a policy too. I think if you have another reputable system nearby, it makes sense to get the second opinion there.
Best wishes to you.
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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.
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eleonora, I would go to another H with no connection to your doctor. Everyone in your H knows about ur situation maybe through tumor boards. They all talk to other docs. Seeing someone new is best.
I have things pop up in my axillary modes, chest wall and lung. They just have activity in petscan no biopsy done. I do have water in pleural membrane. Does the water take me out of oligo?
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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.
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After talking with other people with Stage 4 I understand that the oncologist must be super great, not just great (flexible, communication, out of the box thinking, etc).
Could anybody recommend a "super great oncologist" for Stage 4? Would prefer Chicago area, but can go anywhere in US for second opinion.
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Silas, I am from Chicago area as well. I see a primary MO in the suburbs because I go frequently, but i consult with a Dr at Northwestern every time I have a change. At the beginning, she was open to aggressive treatments, but my status changed and it didn’t work out for me. She doesn’t push anything and allows me to call/email anytime and is fine with being a second set of eyes. Someone else from this site recommended her and it’s worked well for me. I’ll message you her info.
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We need to make a decision between having surgery and radiation at Northwestern vs MDAnderson. Stage 4 cancer got to my wife lymph nodes, however the treatment for the past 9 mos with ribociclib worked and the last Pet scan doen't detect anything in the lymph nodes or bones.
She was proposed surgery, however her surgeons have different philosophies regarding removeal of lymph nodes:
NW - minimal lymph nodes removal radiation will take care of whats left
MDA - more aggressive removal, possible long term effects in right armAny thoughts?
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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?
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MD Anderson is proposing radiation too. NW and UofC had this trial that shows surgery is not helping much in stage 4. Therefore no surgeon wanted to do surgery. After we visited MDA, i was surprised to find that they have a different opinion, surgery helps. Came back to NW, and told them MDA view and the surgeon at NW agreed to do surgery, masectomy and minimal lymph node removal with a palliative purpose.
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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.
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Silas, I’m outside of Chicago and go to NW Huntley IL Dr.Wan very communicative and responsive. Works well with Dr. Gradishar and other NW downtown oncs and Mayo partnership. Not sure where your located in Chicago but sounds like you found NW will do the surgery.. who are you seeing that agreed
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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.
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This is a quiet thread? I have been inactive on Breastcancer.org for more than a year, and all has changed as far as the overall look goes. Just posting to see if there is any reponse. Take care. J
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That is a good thought for sure, though it would be nice to hear how others handle the dx. I have found it very difficult to be 'healthy' when a few people I know, have passed within 1 year or less, of their dx. Also, my Oncologist has never mentioned the oglio status, though I have ct and bone scans then a meeting with him in June at which time I will ask him his thoughts on oglio.
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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.
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I'm at 6ys now. Apparently it's gone from 1 bone met to my lungs. Thinking I need a second opinion. I think there was a misunderstanding with my MO. Otherwise why didn't he have me on Ibrance again to hopefully delay that from happening? He is difficult to get to talk. Short short answers to my questions. He says I dont need it. The faslodex alone is handling it fine. He was pleased with that.
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No progression, nothing interesting to post as I move toward my 12 year mark. Perhaps it’s a good thing this thread is quiet 😊
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Hey any triple negative Oligo's out there? I haven't met any on the TNBC thread..curious as it will be a year in June with my Stage IV dx with a couple lung mets so far.
Yes quiet may be a good thing here!
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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.
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Hi all.. I'm a de Novo oligo he+her2- with one bone met. Very new, diagnosed with idc in Feb and then it was confirmed via pet/CT and biopsy as mbc. This is all very new and I'm very stressed but dealing I guess. I'm 45 and have no symptoms.
My treatment for now is kisqali/Lupron/letrozole adding bone strengthener once I get dental work done. I did just have a second opinion at Sloan Kettering and they confirmed the treatment plan. The pathology report that they did at Sloan Kettering was much more extensive than the original, and I didn't see it until after I met with the doctor. I'm now doubting that I'm truly her- as the biopsy to the pelvis was her2- low and it seems that the biopsy done by the people who diagnosed me was lacking details. I guess I will bring that up with my mo.
Any way just checking in to say hi. Looking to hear and read some positive stories. I've asked both my mo and the second opinion doctor about future surgery and the response has been very ambivalent
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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:0 -
Hi all. Not navigating yet another site change well. (My kids get so frustrated with my technical ineptitude! "MOM, you aren't old!!")
Here to say that the whole diagnosis is so frustrating. Other than the initial dimpling, the symptoms are all treatment related! Every. Single. One. I know I am lucky to tolerate treatments ok, and last years scans were good. I know many of my friends' mothers died from this disease when I was growing up. I know a few of my older children's friends' moms who died, and some who are currently disease free.
Insurance denied me again for more PT for surgery induced frozen shoulder. I amn't THAT old, but I can't move my arms enough for my lifetime job- in fact, not enough for surgeon to ok 2nd stage reconstruction or even enough to GET MY MAMMOGRAM on remaining boob.
Needed to vent to those who get it. Life moves on. I pretend I feel great and hope i don't sh** my pants ( side effects of meds) at work, lol.
Lots of good. Dd graduated with bs, accepted to PHd. Older dd signed lease with BF of over 5 years and up for promotion, baby (12) is doing fine. Parents came cross country to visit (and bury my uncle). MIL over seas is not well, but hopefully we can travel to next month to visit.
Sandwich? That's the term I've heard. Getting it from both ends - kids (mine are spread 12-25) and old parents in mid 80s) If I didn't have to remember my cancer drugs, side effects and appointments, I suppose it'd be ok.
Thanks for letting g me vent
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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.
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my dr has never used term oligo either and had never heard of the term until zi saw it on facebook. But I guess I am. A few Mets in liver only which have shrunk via Herceptin & letrozol. But I keep expecting it to spread.
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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.
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Brutersmom, I don’t know anything about the pleura but I can tell you that oligo is generally defined as fewer than 5 mets and fewer than two locations and is often treated with “curative intent” due to the low tumor burden, however, not all MO’s think this way, some see stage IV with differing categories.
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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.
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Brutersmom, I definitely feel and agree that no scans is an odd approach, especially since tumor markers are unreliable for many. Probably worth pushing them until you get what you’re comfortable with.
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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.
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