How to research for best Dr's

stillneedmymom

How to research for best Dr's

stillneedmymom

I am in here for my mother. She is 65 and was DX last week with IBC. After persistence on my part she finally told me 3 days after finding our herself. I have done so much research in the last three days and while its overwhelming I want to have some knowledge before we see the oncologist Friday. We are fortunate to have a cancer center in our hometown however there are many mixed feelings on the effectiveness of the facility. I would like to know where to start looking to find an oncologist with IBC experience. We are located in Iowa right on the Iowa/Nebraska border.

The first thing I found was that mom (and all of you) are only 1-5% the population of BC fighters and survivors. So understanding the rarity I discovered that finding a knowledgeable onc (one who has worked with IBC patients) is very important in fighting this! I have reason to believe that my mom has let the cancer go for sometime now. She has always helped others and never really worried about herself. It was my father who said her breast was discolored purple and bruised and it looked very bumpy he said. That was about four weeks ago. I got her an appointment with my OB/GYN and within a week she was at the surgeons office. Mom had me convinced that it was scar tissue she needed removed before the doctor would do a mammo. I can't believe I was so naive. 

I have read some topics (just learning and taking notes) on here and I hope it's ok that I am here for her. She isn't computer savvy (she can read and find her way around Facebook and play games but that's about it). I will set up an account for her tonight and show her around here. 

MelissaDallas

Holden Comprehensive Cancer Center at University of Iowa is the only NCI designated cancer center in Iowa.NCI centers are the best of the best.

SheriCola

Bon_, when you say "Maryland", what are you referring to? I just relocated from Atlanta to Rockville, MD and I am looking for new providers to start my reconstruction. Don't even know where to start...

Kicks

If your Mom can "read and find her way around Facebook and play games", she is quite capable of researching, coming here herself! (If she wants to.)   I'm 68 (DXd IBC at 63) and can assure that you that though I am not ' 'puter geek' - anyone who can do that is quite capable of researching or joining here.  IF Hubby or Son had assumed that I all of a sudden became incompetant because of a DX (for anything) - they would have been in so deep in kimche that would never have been found.  

Love your Mom, as you do, but do not assume anything (especially that she is incompetant or senile!l. Be. There for the support she NEEDS at this time - educate yourself to the best you can.  Be there for her in the ways SHE needs - not your 'needs/wants.  (I lost myMom to aneorixia inn 1978)

Cherish every moment ya'll have and support HER!    No one has any guarantees for tomorrow (or even the next second/minute).

bride

To add to Bon's excellent answer (hi Bon)....

The National Cancer Institute has designated 68 cancer centers across the USA. The NCI designation means that these centers are in the top 4% of over 1500 cancer centers. The NCI uses two different designations: NCI Comprehensive Cancer Centers and NCI Cancer Centers.

The Sidney Kimmel Comprehensive Cancer Center is located at Johns Hopkins - Mercy Hospital is part of the Hopkins system.

If you live closer to DC than to Balt, the University of MD has a NCI designated cancer center.

Best

bride

kimh8

Hello Bon

Can I ask you why you had bad experience in phoenix area? 

My mom has recently been diagnosed with metastatic recurrence on her abdomen skin area and she has gone through Faslodex which failed and now on Xeloda. My family is currently in Tucson and we are going to one of the Univeristy of Arizona Cancer Centers. 

Since skin mets is very rare and seems like her onc is not very familiar with this kind of case, I'm trying to find a different approach, rather than just follow what onc tells us to do.

Are you in any clinic trials? I wish there are more interaction and discussion about skin mets in this forum...