Newly diagnosed- new oncologist??

Mizreeder

It's been a while since I've been on the boards. Two weeks ago I had an MRI for bad headaches and was promptly called by my onc. He told me I have a nodule in my brain but, yet again, he told me it may or may not be cancer. Needless to say I went for a referral at UCLA. The Neurosurgeon told me it was my breast cancer and my oncologist seems to have a hard time being the bearer of bad news! So I will unfortunately be on herceptin indefinitely now. I also got copies of my medical records to take to UCLA. Which also showed a nodule on my liver that my oncologist never even told me about!! How many of you have changed oncologists? And who did you contact to do so? I personally feel like even though it's been almost 1 year since my diagnosis I need a new oncologist!

LuvRVing

If you feel like you need a new oncologist, then trust your instincts and do it.  I made a change twice last year.  It was simple - the first time I had my breast surgeon's office make the appointment for me.  When we moved to Boston, I did it myself - just went to Dana Farber's website, requested an appointment and provided the documentation they requested. 

You will have a relationship with an oncologist for the rest of your life.  You need to have one that you trust completely.

texasrose361

Contact your insurance you may not even need a referal and can just call to get an appointment with a new ONC.

You would have to sign a release of records if you dont have a compleate file, but that can be faxed from the new dr to the old dr office

Yes trust your gut! 

Outfield

I am in the process of checking out new oncologists.  Totally different situation - I really like mine a lot - but he's taking a step toward retirement.  

I had the luxury of being able to talk with him comfortably about it, and he made some suggestions. But he hasn't been the only source of information.  I asked my breast surgeon, and my radiation oncologist.  I trust both of them.  I have also talked with my primary care provider.  I know many physicians in my town, althoug not any oncologists. Even though it's not their field, many of them have interacted with oncologists in town through referrals or sharing patients.  

I have also asked other women I know who are patients.  Oddly, that's been the least frutiful route for me.  I don't know many women with breast cancer who are very medically knowledgeable AND can talk about their care.  

I found my radiation oncologist by asking a local cancer support organization if they could refer me to anyone who could give me "inside scoop."  The woman I spoke to in the organization very understandably said she could not make any recommendations (I didn't expect her to) because of the nature of her organization.  She did understand my question, and gave me the name of a nurse navigator in the office of someone other than my medical oncologist.  That person very graciously gave me some tips that ended up being priceless.  

So really I have used every source of information I could think of.  My own insurance hasn't been very limiting, but it sure makes sense to check with them too.

If you don't have them already, get copies of ALL your medical records from your current oncologist, breast surgeon and radiation oncologist.  If you have chronic medical problems that are managed by another provider, like an internist or cardiologist, get the most recent notes from them.  Get copies of all your scans on CD and copies of all the reports.  If you aren't fully decided about changing oncologists, don't wait to make a decision before you get these copies.  Somtimes it can take a while, and it's best to have it and not need it than vice-versa.  Docs really appreciate it when you show up with all your records, and some won't schedule you until they've got them. You can always request they be FAX'd right to another doc or clinic, but having them in your possession makes that process simpler/faster.  You don't have to worry about when they're going to do it.

I try to stay up to date with having a couple sets of copies on hand at my house all the time just in case.  

I'm sorry you're going through all this.  I hope you find someone with whom you are comfortable. 

hope123108

LuvRVing,

I am seriously considering yet another opinion and am looking for oncologist at Dan Farber.  Would you be able to recommend anybody.  I am from Pa. but things are not looking good for me.  I to am triple negative and getting very scared as the cancer continues to spred. Would you mind sharing your treatment with me?  Hope all are doing well.

Thanks,

Hope

Alyad

I am in this same boat. Newly diagnosed stage 4. I have no faith in my onc. I was at one place for intial treatment and had suspicous lung nodule on CT scan at beginning of chemo- so we did a PET scan then and again at end of chemo.

They told me it was nothing, but I just recently got copies of those scans and it said there was a spot that warranted monitoring but guess what, they didn't tell me and I never got that monitoring.

Now I have a big lung met and spread to liver and bones.   S o yeah I'm pissed and I want to find a new onc. There are two cancer centers where I live, I was at one and now am at the other due to insurance changes. Up until now, I'd only seen this guy for 3 and then 6 month followups, wasn't crazy about him, but the way he's handled my new diagnosis. I got my own scan report and he was put off about that. I had gone in and demanded to be seen and they worked me in, but his attitude was patronizing. 

I live in a small city and I want to go to KU in the KC area or Siteman in the St. Louis area. I have an appt for a second opinion at KU next week. I'm anxious to start chemo, but my current onc wants me to do a liver biopsy. I'm worried that will  spread the cancer.

lago

I know so many women that have chanced their oncologist. I have given several referrals to mine. I don't know where you are from but maybe you can reach out to some of the women here in your area/state.

Can you stay at the same treatment center just change oncs?

I have also googled a doctors name with the word "review" after it. You don't always find the info you want but I know if I had googled my former gyno I would have never gone with her.

Some (but not all) top doctors are listed here:  http://www.castleconnolly.com/
Also note that the ADT symbol denotes the doctor is in either the current edition of America's Top Doctors® or America's Top Doctors® for Cancer.