UPDATE ON THE UPDATE 😄: Right after I first updated this post my oncologist finally called me! (She must've got an itchy ear lol). We had a long, detailed 45 min chat. She listened to me and relooked at scans etc herself while we talked. She answered all my questions. I will write another post later to describe my options in more detail - the pros and cons. It might be helpful for someone else some time. And now, do I still go for that 2nd opinion? Maybe. I did tell her I was talking with Penn this week (I'm just not sure how helpful it will be though without them having the scans themselves.)
UPDATE: Thank you all for your helpful and encouraging responses! I made headway today. Got one appointment for early next week. Also secured a phone call with onc at Penn/Abramson this Thurs, who has worked with me before (though she can only read reports, not see my actual scans. But I really like her so it will be good to hear her thoughts too). Meanwhile - still crickets from my current doc or nurse after yesterday requesting to discuss my current situation further. And THAT is a problem, in my eyes (I think you will all agree).
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So, my recent scans showed progression and "mild ascites" in the abdomen, neither good news, particularly that free fluid problem!
Today I left a message to speak to the oncologist, after her calling me Thurs night with the bad news. The office messaged back to me and broached the OTHER reasons I called, but not the need to discuss things with the doc. I called again and the office person literally made an attempt to skirt the issue by bringing up other things. This is the same office staff who seriously let me down with lack of communications during my previous need to change treatments (in January), which unfortunately co-incided with my long term, lovely oncologist mysteriously never returning from her Xmas holiday (and she still hasn't!), and subsequently at that time I ended up going a full MONTH without treatment as we played cat and mouse with severe miscommunications by them.
So, I made it clear that the doc had said I could contact with any more questions after I said I needed the weekend to process my new status and options. The office person said she'd "pass on the message" (in a tone that makes me think she wouldn't) and of course I never got a call back! This is their new norm. They are literally just setting to book me up for everything to take this treatment and showing no signs of making an effort for me to talk to the doc (I had requested an actual meeting when I called this morning)
So, I've got an echo booked for Friday (in anticipation of taking Enhertu) but my frustrations of the previous problems from January are resurfacing for me and make me concerned about my quality of care. I'm thinking of calling either Hackensack or Rutgers Brunswick tomorrow to see if I can get in quicly to have someone else review my scans and bloodwork. I see discrepencies which don't make sense to me and want to make sure before I plunge ahead with a potentially dangerous treatment.
Thanks for wading through this saga if you have, and, if you have any how-to suggestions of making speedy 2nd opinion appointments please share! I know I can't take too long. But how long is too long?! A week? 2 weeks? Argh, I hate this situation 😢
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I’m on the west coast and for my first time I was able to get an appt at UCSF within 3 weeks. But at that time it wasn’t urgent. Since then I’ve had a more urgent visit and they squeezed me in within two days. When you go to an academic institution, I think they are well organized in teams. The coordinator gets the call and connects with oncologist, etc.
I would pick an institution that has breast cancer oncologists who are aware of trials, not necessarily bc you want to get into a trial but when they follow trials, they have a broader view of possible drug combos that work because they know what’s been tried. Local general oncologists know the standard therapies , but I have found that my onco doesn’t present as many options.. and even questions the second opinion. I’m right in the middle of some tricky decisions.
When you call for second opinion you might want to have a doc picked out.and mention by name.
Good luck. I am very grateful to have started a relationship with a second opinion.
Dear 13plus: I am in my 6th year of MBC. Over the course of that time, I have gotten 2nd opinions from 2 cancer teaching institutions. Both gave me all the options and were very informative. I highly recommend doing it. You have to get your recent scans & medical records to them prior to them providing a 2nd opinion.
We all must advocate for ourselves in a respectful manner.
Praying you can get in at a reputable institution quickly.
Thank you. Yes I feel another opinion is very worthwhile, if only for peace of mind that more than one agrees with the treatment choice. Got an appointment with the Cancer Institute of NJ next Tues, and thay can access all my records as well, which is fantastic. Thanks for the encouragement
So glad you are getting a second opinion with a reputable place. Sounds like you were really getting a run around from your other doctor. I would not be happy about that either. We definitely need to advocate for ourselves, after all it is our body and our quality of life that are at stake. Best wishes to you. Keep us posted on what you learn. Sending you hugs and prayers.
Thanks Muzzatron. I managed to make an appointment with a NCI cancer center next Tues. Did the Guardant 360 last year - wasn't really informative for me. I'd done another one (can't recall the name) prior a few years ago and all the same info really, except I do have ESR1. Are you on Elecestrant?
I need to stick to what's covered by insurance so besides Penn (have done 2nd opinion there before) I won't be looking out of state.
And not worried about offending my hospital! Since firmly telling office yesterday that I really want to talk to doc before going for infusion (I only had the original bad news phone call anyway, no actual visit with her), today, almost end of day, and still not even a call from her nurse!! This is why I'm thinking of switching locations
Regarding offending the onco : My local oncologist was frustrated that I wanted to follow up on his proposed treatment and I didn’t find that helpful. I would have thought that he would welcome input from an academic institution. I feel his reaction may have poisoned our relationship of over a decade. I wasn’t disrespectful at all and dont think it’s my responsibility to protect his ego. The second opinion kindly offered to speak with him and said I shouldn’t have to stress about this.
Where are you now? Call immediately, and call both, and see which can accommodate your need to get a second opinion quickly. The glitch I found was the time it takes to release your records, and get your scans over to the new oncologist quickly.
My oncologist was not the least bit offended, encouraged me to get a second opinion. I think it is a bad sign if they are offended. She wanted to know if the other oncologist agreed with her or had a clinical trial for me.
I made one for next Tues! And beauty of it is, all part of RWJ system so all data and scans will be accessible. Yeah! I'm currently with Cooperman St Barnabas but I feel the organizations communications and care have tanked this year. Appointment is with the (Rutgers) Cancer Institute of NJ, NCI -accredited.
(Rutgers/RWJ Health/St Barnabas have all or part merged so it gets confusing! )
Agree with TammyCross and what the others have written. My current Oncologist, who I have been seeing for 7 years, was my 2nd opinion. I only had to wait a week since fortunately my community hospital had a clinical affiliation with the Cancer Center Hospital I go to now. They had immediate access to my records. Also agree with the others that seeing a breast cancer specialist who is a full professor at a teaching hospital/cancer center is a world of difference from the generalist at my community hospital. The hour and a half ride is well worth it. No one at my community hospital was upset that I sought a second opinion. Pay attention to that voice inside you.
Thank you! I've done this today! Had a glimpse of all your responses early today and got myself into gear. If you see my response to Tammy you will see I got one Tues - Cancer dedicated, doc has impressive bio and they can access my data.
Regarding time taken to get records transferred: depending on the situation, it may be faster to have your "institution" send records, and convenient if they're part of the same IT system....but... I would encourage you to ALWAYS keep copies of your records at home, so YOU can send them as quickly as you choose, in case you anticipate a speedbump with your local provider. I always download copies of bloodwork tests, keep copies of Guardant/Signaterra tests, scan in copies of imaging reports, clinical notes, and ask for copies of imaging files on CD to be sent to me for MY keeping. I keep paper stuff filed on my computer in categories, then, as needed I can send PDF files to anyone I connect with for NEW PATIENT paperwork. Yes, it's a lot of work on my part, but at least i know I am in control of the process. I've learned that in my particular area, if a "2nd opinion" location is part of the same system, I'm likely to get the same dog food. I try to get out of the existing system for a truly independent 2nd opinion.
I do keep a lot of it but I do not have as much energy as you evidently, haha. The Cancer Institute was always separate for a long time, they have a very different mission, so I'm not too worried about getting the same hash result in this particular situation. But I hear you, and its a very valid point to make.
I'm so happy that you have now created options for opinions in the near future. This has been extremely stressful for you as we all understand. However please now take a big breath and try and relax until the appointments occur and you then have to make your decision.
Obviously it is apparent that your rapport is not there with your current oncologist/team so as others have said it's time to move pass that and find someone you trust. In defense of the oncologist though remember how many other of her patients that may also have gotten similar news or worst that also need to be spoken with. I know we all want instantaneous responses but often with our access to electronic portals we see reports before the physicians...I'm sure that's a disclaimer on your portal. Anyway just giving a different perspective.
From your earlier response about your small ascites and what may have caused it. It would be extremely unlikely that abdominal trauma from a MVA would be the cause of ascites.
Good luck with your 2nd/3rd opinions. I hope you can find peace with whatever treatment plan is determined to be the best. Take care.
Hi 13plus! I had a similar situation when I was diagnosed stage 4 after 7 years in remission. I had moved from the DC area to a port town in NC not thinking about again needing the quality of care I was used to. Long story short, things went down hill quickly mostly because I knew what good care was and was certainly not getting it. I’m thinking this isn’t a cold folks! I’m dealing with stage 4 metastatic cancer! I had been told by many to go to Duke, 3 hrs away. I looked up their Cancer Center and called their appt line. I explained briefly what was happening and that I wanted to get a second opinion. They scheduled something within the week and the rest is history. That was almost 4 years ago. The 6 hour RT once a month for bloodwork and my Fulvestrant shots has been worth it. I have been NED for 2-1/2 years and only get scans twice a year. They also have great specialists in other areas on campus that I have been able to see for other issues, non-cancer related. So, yes it is possible to get in quickly for a 2nd opinion. For me I really felt my life was dependent on it. We have to be our best advocates. Be the squeaky wheel and get the care we deserve.
Hey there 13plus. Hoping you have gotten more answers/direction since this posting. As for UPenn, I have consistently used them for 2nd opinion. I send them a cd of every scan, they review with their team and I discuss via telehealth. A scan is only as good as the radiologist reading it, and I have better piece of mind when another outside team reviews the images themselves (not just the report).It does take extra time, by about a month all said and done, but I feel it’s worth it. Also have found that their patient portal produces better communication results as well- as you avoid the central call center which can be overwhelmed. So you’re wise to get a second opinion, and to me it’s worth the extra steps. Mostly, all are in agreement with one another, but I feel UPenn being more research focused helps me get a better understanding/long term view of options and helps me ask better questions of my local oncologist. He loves this team based approach and between his group here in NJ and the reasearch team at UPenn I feel like nothing is overlooked. And should things progress, I’m already plugged in for a study which *hopefully* I’ll never need to enroll in.
Thank you for thinking of me and reaching out. Tbh I'm at the end of my rope right now. So a lot has happened, but all very slowly! I had the call with Upenn. I love the doc I have there, she always grounds me. She's thorough, and she carefully considered the things that didn't make sense to me re-bloodwork and scans, without ever making me feel stupid for asking. She agreed with my main doc with the plan and so I was ready to go that route BUT due to the ongoing communication issues I've been having at my main doc's office I had made an appointment also for the Cancer Institute for NJ the following Tuesday. I decided to still go, meet a new doc, see the place, and consider switching there if communications went downhill further at St B.
I was NOT thinking or expecting CINJ doc (very smart woman) to say she thought I was eligible for 2 trials! Oy! But I had to get the Guardant360 done again and that takes 7 - 10 days. I decided to go for it but I was anxious about the wait. Later in the week my main doc calmed me saying that it was ok to wait and worth looking into. BUT, the results took longer than usual to come back! OVER 10 days! I even had to cancel the follow up with the CINJ doc.
Fortunately she called me that night, the results had arrived that afternoon, and guess what? I am NOT eligible for the trials. Ugh! So, I call St B the next morning, tell them of my intention to go ahead with Enhertu. And now here I am another week later, still waiting for my infusion appointment pending insurance! I'm slowly going out of my mind. I feel ok but by pelvic lesions have been flaring up this past week like crazy, on Advil round the clock and today it's barely working at all. I'm still holding out hope for that appointment tomorrow but ...... time will tell! 😭 It's been 5 weeks since I had my last dose of Xeloda. Scared to get my bloodwork done 😢
You should be just fine. Moms was off xeloda 4 or 5 weeks before starting Enhertu. Her tumor markers had only went up a little. She’s now had 2 doses of her Enhertu . Haven’t checked markers or scans since starting Enhertu. But seems to be feeling better . When her xeloda was no longer working she started to have back pain. Things seem better . We pray it’s working. Best to you! And that Enhertu works great for you for a long time 🙏
Thank you. I do get to start tomorrow which is great, as I've really been having a challenging time this past week withe the bone mets. It's actually my liver I'm most worried about though, it is in decline. So, hoping the Enhertu does work well as I need to reverse the current situation. I'm glad to hear your mum is feeling a bit better already, that's a good sign!
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Hi everyone.. here for some support.
