Need onc suggestions 2nd /3rd opi for Triple Negative treatment
I posted the other day about my tumor seemingly getting bigger on A/C chemo after successful shrinking on Taxol / Carbo.
Onc agrees no progress on A/C, but we differ on what to do next. Looking for experts with TN to get 2nd and probably 3rd opinions. Any advice? I'm in the Los Angeles area.
Thanks, Mel
Comments
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Do they have tumor board where you are treated? Have your onc or surgeon take it to tumor board and have all the opinions related back to you.
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Mel, I'm not TNBC, but I am being treated at UCLA, and I know from others that they are renown for their above average success rate with TNBC. I actually live out near Palm Springs but make the 3 hour trek into Santa Monica (where most of UCLA oncology is officed) just because I don't think there are more experienced or thorough docs anywhere. I use Sara Hurvitz, who happens to be the head of breast oncology, but not sure if she's the top onc there for TNBC. PM me if you'd like more information, but you won't find better bc docs or TNBC experts in Southern CA. They're absolutely wonderful! Deanna
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WinningSoFar ... Thanks for taking the time to respond to my question. The doctor I'm seeing is part of a large chain of offices here in Southern CA. I'm sure they consult each other, both within their own office between the 2 oncologists and the surgeons, as well as among the offices. However, I was looking to consult with a specialist in TNBC and at one of the larger treatment centers if possible.
dlb823 ... I was wondering about UCLA, just didn't know where to start with them. I did find their website and called their patient referral number. I have an appointment with Janice Lu, but it's a week away. Not sure I should wait that long, so they've contacted the office to see if there's any way to get in sooner. My current doctor would probably have me in surgery before then, and I appreciate his sense of urgency, just wanted to get additional opinions since he seems not 100% sure of the course of action here. Will PM you for additional info on where you're going. Thank you!
I called USC, and they said, "Well, we have one doctor, but he'll be leaving in 2 months, then someone else will come in..." Really? One doctor? I tried to press for additional info, but didn't get far. My insurance shows several medical oncologists affiliated with USC, but all have that same number for appointments. Interestingly, UCLA isn't on my insurance plan. Will have to use the PPO aspect of my plan and take partial payment from insurance. Oh well, so far it's just for a consult to confirm course of action. One thing at a time....
Mel
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Mel, I just read Janice Lu's bio. She sounds wonderful, and if you can get in within a week, that's wonderful. Sometimes the wait is much longer, and/or you have to fill out a questionnaire to see if they'll even take you (I'm guessing because they want to utilize their time for the more challenging cases). I haven't read any patient reviews for Dr. Lu, but I can tell you that there are usually literally thousands of applicants for any position at UCLA, so they end up with some pretty exceptional docs. You could call and ask if Sara Hurvitz has an earlier appointment, but I think it would be kind of a fluke if she does. Deanna
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One of my tumours got bigger on A/C too, and it was also my second type of chemo. My oncologist insisted that it be removed immediately while my surgeon was adamant that it wasn't growing. I measured it every day during my first 4 rounds and watched it shrink drastically, but it clearly grew on the first round of A/C, almost back to the original size.
The final pathology report said that it grew because of necrosis and the tumour was actually filled with fluid and dead cells.
You may want to consider surgery at this point, given that you're Triple Negative and then continue with the last rounds of A/C. First get an idea of how you'd like to proceed, then find a doctor that will fulfill your wishes. Good luck with your decision.
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Deanna - Thanks for taking the time to look up Janice Lu. I agree she seems to have a good background. Turns out I'll be having surgery before my appointment with her, but think I'll still keep the appointment to discuss the best plan after surgery. Still not sure if just radiation is best, or if I should do more chemo. Sure don't want to, but want to do the best I can to knock this out now. I appreciate your input very much.
Hope999 - Thanks so much for posting! It's helpful to know that the "growth" could be because the chemo actually IS working. Have surgery Monday, hoping for good news on pathology.
Mel
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Mel... just thinking out loud... Might there be any reason to delay surgery until you meet with Janice Lu? What if, for example, additional preadjuvant chemo might be a benefit?
Also, since you haven't had surgery yet, did you know that UCLA has a multidisciplinary clinic? That's how I first went there. Let me find you a link that explains it. Since you haven't had surgery yet, I'm wondering if that might be something you would want to consider. http://breastcenter.ucla.edu/body.cfm?id=31 I thought it was wonderful -- a whole medical team rotating in to see you, conferring while you're there, and coming up with recommendations.
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Deanna - I am thankful for your thoughts, as my own are quite muddled these days.
The place I'm going for treatment operates in a similar manner, with all of the doctors and testing facilities in the same setting, and even operates an "Answers in a Day" program. They probably don't get quite the numbers that UCLA would get, therefore less experience with people like me (Triple Negative, large tumor, growth on 2nd chemo regime). This is why I wanted the second opinion, and was actually hoping for additional preadjuvant chemo as you mentioned, to try to shrink the tumor more before surgery. I felt that it was best to have the tumor to measure a response to new treatment, as once the tumor is gone, we won't really know if what we're doing actually worked.
My current oncologist disagrees, and is concerned that if the new chemo we try doesn't shrink it, then we could miss the window for a manageable surgery, as the tumor is still large enough that with any growth, that would be a real issue. They are setting up the surgery right away, as the tumor is fast growing and if I wait, I would have to wait another full week before the surgeon would be available again. I had measurable growth (self-measured by caliper) in a 5 day period this week, so they are right to be concerned about this. Also, my husband is totally on board with my docs in pushing for surgery as soon as possible.
My concern is more with any nodes or micro-metasteses that might exist. Prior to chemo, I had a lot of discomfort in the shoulder and chest on the tumor side. With the Taxol and Carbo, the tumor was shrinking and softening from week to week, and I had none of the prior discomfort in the shoulder. I could easily tell we were headed in the right direction. With the switch to A/C, not only did it stop shrinking, get harder, and then seem to grow, but that old discomfort came back in the shoulder and chest. I worry that just taking the tumor isn't enough, and then I've lost my best guide as to the right chemo regime. I'm hoping that like Hope, it is just necrosis and fluid build up rather than growth, but was looking for the 2nd opinion to help with decision making. I really wish I could've gotten an earlier appointment with Dr Lu, but so far no luck there. I was told initially that getting in within a week was pretty good.
Even if I did delay the surgery to take part in the UCLA multi-disciplinary program, I'd be running into payment issues, as UCLA isn't on my insurance plan. I was going to pay for the consult appointment if necessary, but wouldn't be able to manage the whole multi-disciplinary thing, including the surgery itself.
Sometimes things happen the way they do for a reason. Guess I'll just go with it and manage the things that I'm able to. The timing of the appointment is out of my control, and so is the crazy tumor and it's fast growth, and the surgeon's schedule. I'll still have the appointment with Dr. Lu, and will be able to consider her input in continuing treatment after the surgery.
Thanks again, Deanna, it's great to have the additional input, even if I'm kind of locked into a certain course right now.
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By this point the platinum has done its thing. The A/C is to clear up any stray circulating cells in your body.
If you have fibro breasts then that can also attribute to it seeming bigger as the surrounding tissue hardens.
Hope you make a decision soon. BTW, surgery was a breeze, no painkillers after and a nice break from chemo.
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I totally get where you're coming from, Mel. Like you, I tend to think that things work out the way they're suppose to, and it does sound like doing your surgery now is the prudent thing. Sending you best wishes for the best possible outcome on Monday. Oh, and be sure to check the Surgery Forum here if you haven't already for tips you'll find pinned to the top of it on recovering from surgery -- things like having a pillow in the car to slip under your seatbelt on the way home, and being sure things you need at home are moved to counter top level for easy acces -- simple things to make your recovery go much easier.
You will be in my thoughts & prayers. (((Hugs))) Deanna
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Great news!!! I had a PET scan this morning. Talked Onc into doing a scan in order to help with decision making as to surgery or more chemo, etc.
THE TUMOR IS DEAD!!!
The scan shows no activity/uptake in the breast. Nodes are apparent, but small and much better than last scan. The new plan now is to cancel surgery scheduled for Monday and continue the last 2 A/C treatments. Then surgery a few weeks later, hopefully with a smaller mass to remove.
I am so happy, I just can't even find the words. Thanks to all for your responses and support!
Mel
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