Dana Farber ladies, tell me about it, please

RosesToeses

I'm currently getting treatment elsewhere.  I love my oncologist and the rest of the department are lovely, and the care I've received has been high quality, but I'm going in today to (once again) discuss what I expect will be next steps.  My tumor markers are slowing trending upward and on the bone scan I had this week, I could see spots lighting up.  Maybe I'm wrong, but all indicators so far seem to point to Xeloda beginning to fail me.

I've gotten second opinions twice at Dana Farber and found the place to be kind of cold and impersonal. But they have a lot more clinical trials going on and last time they told me most trials exclude patients who've had more than 1 line of chemo for metastatic disease, so now would be the time.  Plus, they're Dana Farber, world renowned.

I'm feeling really conflicted.

Can those of you who are being treated at Dana Farber talk to me about it?  What do you like?  What do you dislike?  Do you feel like they take the time you need when they see you? 

How are your scan techs and the people outside of the breast center?  I've you've been hospitalized (it's at Brigham, not DF, right?) how's that been?  How are the nurses?  Are the rooms all private or did you have a roommate?

If you left your initial oncologist and facility to go there, how did you do that and how did it go?

Thanks for any help or advice you can give me!

Anne45

Hi RosesToeses I go to Dana Farber. It is the only place I have been treated for cancer. I like so many things, I can get right in and have any tests done promptly and get the results promptly. My only dislike is the hour drive to get there. I have been to the Brigham for a recent liver biopsy (day surgery) and was treated wonderfully. I had my breast biopsy and mastectomy done there 16 years ago and had private room. The nurses are great. I have been going there for 16 years. I don't feel rushed in any way. I hope this is helpful to you. I can say I am on a study drug called GTX-024 and its very easy.

reflect

Hi RosesToeses, I went for a second opinion at DF and was offered lumpectomy rather than MX, even though I had multicentric multifocal tumors. I have had an excellent experience there. Before surgery I had some very fancy work done in radiology--2 radioactive seeds and two wire localizations. The docs and techs were extremely professional and also kind. Surgery was at BWH, and was meant to be outpatient but they kept me (maybe in recovery?) overnight. I don't remember much about it but it seemed to be a giant ward with beds separated by curtains. My 83 yo mom was waiting during my surgery and recovery and my surgeon got worried about her (she's 83 and must have been very tired as we had a delay). They called a taxi for her and the nurse called the hotel afterwards to make sure she got home OK. Above and beyond. I've had many appointments and have always been very pleased with my care. I will be participating in the PALLAS trial as soon as radiation is over. The only thing I don't like is the drive --2 hours unless it's rush hour and then it's awful!

meg2016

I go to DF for treatment and have found it to be not cold or impersonal at all, quite the opposite! My husband jokes that it is Cancer Disney because it seems everyone is so friendly. My experience at Brigham and Women's for surgery was outstanding. At both DF and B&W through every phase the nurses, techs, etc all seem to follow a very standard protocol of introducing themselves, telling you what their role is, checking on you within a certain time-frame to make sure you are still ok, etc. I started this process at a large, teaching hospital in a large city (but not Dana Farber ) and they were struggling to get all my needed scans, etc done within the same week. Dealing with them was a lot of work. At DF, they scheduled them all for the same day! So I travel a distance to go there, but it is worth the hassle of travel for the ease of treatment there for sure. I have also never felt rushed in an appointment, this has been true for my MO, BS, PS, and RO, even infusion nurses, etc. I am trying to think of the negative... Boston traffic, I guess? I really can't come up with much else. Occasionally I get a little lost trying to find a new place (like if I am having a test done at a different place than I have been before,) But that is also true at home. At Brigham and Women's, the pre-op area and recovery area could use some improvement, it was just curtained areas but you aren't there very long (my understanding is that they were doing construction and so they were using another area temporarily.) But my room itself was private and very nice. I was at the Faulkner facility (there are a few B&W locations.)

I left my initial oncologist very early for a second opinion and DF required many scans to be redone. And some (including my pathology) had different results, so that was interesting. But as I have considered coming back to my local oncologist, I keep going back to DF. And no question, if you are interested in trials, they have a large number going on and the trial nurses are also terrific.

RosesToeses

Thank you for all the great input!  I meant to update yesterday but got distracted and here the post now has some great info!

I was shocked at my onc appointment that the CT looked good, sizable reduction in the liver tumors, some bone spots resolved.  I guess I jumped the gun a bit.  It's been a while since I had a bonescan and my onc explained that she's seeing this as a new baseline and we'll keep an eye on things, but she wants to keep with the Xeloda which has been good to me while we watch how things trend.

I still feel pretty strongly that stage iv being what it is and treatments being as impermanent as they are, that I will end up at DF at some point.  It really helps to have these positive perspectives for when that time comes.