Second opinion from out of state famous hospitals/doctors

lisa1130

Second opinion from out of state famous hospitals/doctors

lisa1130

I was just diagnosed with stage 3a lobular breast cancer. (so far)   

I am doing the scans tomorrow to see if cancer has spread into any of my other organs.

We live in a fairly large city with a decent hospital system (charlotte, NC)

Is it worth it to consider the out of state "outstanding" hospitals like Sloan, Anderson etc for second opinions and possible care out of state?  

we have good insurance and money to afford the travel etc.    

Is the care or advances really better or worth it?

Thank you very much!!

Chloesmom

A friend of mine with the exact same type, grade, stage and chemo had an identical cour of treatment in Charlotte as I did at Hopkins in Baltimore except they didn't give her a Neulasta shot to increase blood counts after chemo infusions and she had a lot of issues due to the fact that they gave her antibiotics instead. This was tofight any infection she might get from her low blood counts. Not sure what doctor she had. I loved my care at Hopkins Wish you well.

Moderators

Hi Lisa-

We want to welcome you to our community here at BCO. We're so sorry for what brings you here, but we're glad you've found us, and hope you find the support and advice you need!

If you're comfortable with your current doctors and medical team, there's no necessity in seeking out a second opinion at this point. But it's a very personal decision, and if you feel that your care would be better managed by one of the bigger research hospitals, and you have the means to travel, then we would encourage you to do so! The most important thing is that you are comfortable with your medical team, and confident in their care.

The Mods

Octobergirl

You have 3 NCI cancer centers within driving distance from Charlotte ( I grew up there and live in WNC now): Duke, UNC-CH and Wake Forest. I'd check out their websites and consider getting 2nd opinion(s) from one or more of them re tx. plans. And I'd seriously recommend having any surgery done by a breast oncology surgeon, preferably at an NCI hospital. I think it is extremely important to find a well-credentialed surgeon you trust. I was stage 3 IDC in 2009 and decided to have all surgery and chemo at Duke. We were able to get an apartment there so driving back and forth was minimized. I would have been ok to have chemo closer except I did not want to risk ending up in our local hospitals if there were complications. I did develop an infection at one point and was very glad I was at Duke. In you shoes, I'd want to find which of the NCI hospital oncologists and surgeons specialize in treating lobular breast cancer and take enough time to get 2nd opinion(s).I do think UNC-CH, Wake Forest and Duke would all offer comparable quality of care.

I will be thinking of you tomorrow and hope your tests results are negative. This is a supportive site with many knowledgeable, caring women who have walked or are walking your path. Let us know how you are doing.

Janetanned

Three and a half years ago I received a similar diagnosis.  I work for the University of Pennsylvania Health System (NCI) so it was an easy decision for me. I basically paid for nothing as long as I stayed within the system.  I found having all of my doctors and facilities under 'one roof' to be very manageable and convenient.  They communicated well and worked well together.  I became very familiar with the different departments, which made it easy to navigate a large medical center.  Keep in mind that your relationship with your medical team may last for years, so you want to consider how easy it is to get to your treatment center.  I was able to work through chemo and rads because I could schedule most appointments around my work schedule.  On the two occasions that I needed to go to the ER, it was the middle of the night and I was glad to go to 'my' ER where all of my records were easily available. Both occasions ended with being admitted for a few days and my onc and her associates were able to check on me easily.

I see my med onc every 6 months and my surgeon every year.  I saw my plastic surgeon for two years - through reconstruction and follow up surgeries.  IU saw my rad onc once a week during treatment and then every 6 months for a year after treatment.  I also was able to get a quick appointment with a dermatologist who specializes in certain genetic conditions that include breast cancer (Cowdens Syndrome) and another dermatologist who specializes in chemo skin reactions.  Both appointments were made by my med onc and happened within days of my concern.  The geneticist was also easy to see since she shares an office suite with the med oncs.  During reconstruction I had many concerns about healing and it was so easy to stop by the office to have a PA or dr take a 'look'.  All of this was possible because my treatment center has all of these facilities on campus and they are close (45minutes) to my home.  I couldn't imagine traveling for all of these appointments.

Chloesmom

Good points about convenience. I had to go for my Neulasta shot the next day after chemo. We live in PA and I had to drive to Baltimore 2 days in a row. Couldn't have done that without my husband to be available The main thing is if you are confident in what they have to offer so you don't get a surprise like my friend did about the Neulasta. Her surgeon was great. She just was unhappy with the MO

Chloesmom

Good points about convenience. I had to go for my Neulasta shot the next day after chemo. We live in PA and I had to drive to Baltimore 2 days in a row. Couldn't have done that without my husband to be available The main thing is if you are confident in what they have to offer so you don't get a surprise like my friend did about the Neulasta. Her surgeon was great. She just was unhappy with the MO

readytorock

I was diagnosed at a local (smaller) hospital.  I went to Dana-Farber in Boston for a second opinion.  They didn't have anything different to say or any different plan, so I stuck with my local, more convenient hospital.  I'm glad I went though!  If my case were any more complex than it is, I might have stuck with Dana-Farber.

dlb823

Lisa, I live in an upscale suburban-ish area with great docs and wonderful medical facilities. But when it came to treating my bc, the "experts" here totally dropped the ball, as explained on my bio page -- something I didn't even realize until I went to UCLA for a second opinion.

It never hurts to get a second opinion, then you can decide from there which medical team and location works best for you. But I always say local docs, because they just don't treat the volume of bc patients the university teaching hospitals do, nor do they devote themselves to bc 24/7 as the experts at those larger places do, can end up in situations where they simply don't recognize something they're missing. Plus, if you strongly prefer to be treated locally, sometimes the larger places can recommend former residents or docs who have moved to your area, but basically have that NCI-type training and extra-thorough mindset.

Here's a list of the NCI-designated cancer centers. Hopefully one isn't too far from you, but I would strongly urge you to at least check in with one of them before deciding. http://www.cancer.gov/research/nci-role/cancer-cen... (((Hugs))), good luck, and please keep us posted! Deanna

mel147

Hi, Lisa - I just wanted to say "Hi" and hope all went well with your scans. I live just outside of Charlotte and had my surgery in Charlotte. There are some good resources in Charlotte that might be helpful to you in making your decision. Please feel free to PM me.

My name is Lisa, too!

Buddy Kemp Cancer Center http://www.novanthealth.org/home/services/cancer/s...

Carolina Breast Friends http://www.carolinabreastfriends.org/

fredntan

I too had three second opinions. All said same thing.

After I was done. They said no follow up scans. They gave me crap about too much radiation. But then I started asking my cancer patients. I'm nurse. Lung cancer pt. said oh I had stage two lung cancer I get pet scan every year. Same with bladder cancer patient.

Ask them if they would do Caris or foundation report on your tumor. You'll have to google these.

If you want scans afterwards. You can find docs the farther west you go. I have friend that goes to Seattle for follow up scans and herceptin. I came to texas for follow up scan and he found early bone Mets.

I'm NED now. My doc does individualized cancer tx. No protocols. He has high success rate if mets are caught early

I'm with karel Dicke at Arlington cancer center in texas. Had to move here from va. He is on YouTube. He's a geniou

savannah11

I'm so sorry you are going thru this. I had a knee tumor and was cared for by Wake Forest Baptist Cancer Center and they are amazing!! It's in Winston Salem; so only about an hour from Charlotte

Trvler

I live in the Chicago area and I sought out several opinions, both locally and out of state. I have gotten a lot of flack about going out of state for surgery by the local doctors because I am having neoadjuvant chemo now locally. Then I am supposed to go to NOLA for BMX and recon. I can agree that having all of your care in one place can be a big convenience but I just couldn't find a BS and a PS locally that I felt comfortable with. I also have two appointments with OTHER MO's coming up because I don't like my MO and I want to switch, partly due to her giving me flack at every visit about having surgery elsewhere.