IBC Recurrence, best oncologists needed

TLYGA

Hi Everyone,

My mother was first diagnosed with stage 4 IBC in April 2006.  To put it short, she had chemo, then underwent a mestectomy, and then had radiation.  After being put in the remission stages, a year and a half later it has recurred in August 2008.  She was not given any periodic testing or post cancer preventatives, her oncology assistant said in order to get tested, their has to be symptomatic reasons.  In April 2008, she had this nonstop cough and could not figure out what it was.  After investigating it for 4 months of allergy speculation etc., her pulmonary doctor sent her for a PET Test and after further investigation, found that it was the same cancer that recurred in the lympnodes of the lung and 2-3 cm growth in the liver this past August.  At this point, I want to prolong her life as much as possible.  Her cancer is treatable but not curable.  Her oncologist, Dr. Harris is the head of the breast cancer dpt. at Yale and is always busy.  She always has residents/fellows taking care of her during appointments and only sees her about 10-15 mins each apt, not thorough, etc.  We are ready to switch doctors and go to Sloan Kettering.  I was wondering if you had any advice or comments on oncologists that know more about IBC at Sloan Kettering or across the country and which are the very best (thorough, dealt with IBC etc.).  I'm looking for all the information I can get and I wouldn't mind knowing the best general oncologists either at MSK, especially those experienced with matestacies.  Also, if you know the best oncology surgeons for IBC or in general at MSK or throughout the country that would be great.  I know there is no specialist in the country for this and we really just want to proceed with other options before it is too late.  Thank you so very much.

 Tatiana Lyga

Squeaker

TLYGA - I'm not directly familiar w/personnel at Sloan, but as a starting point would offer the following. They have an extensive website listings, so maybe spending time checking out personnel CV in the main Breast Center would help? You could always call their Breast Center and ask to speak w/a staff member re:IBC. Hopefully, others here will provide names too. Sometimes it just feels better to dig in to the research too! Good luck to you & your Mom!

Squeaker

camsdh

I sent you a PM

FloridaLady

If you have mets other than skin they now treating you as any other Stage IV patient.  She will do the same chemo as other's with the same mets.  So finding a IBC oncologist is not going to change her treatment. Just find a good oncologist using the latest drugs.  See the recurrence section for the kind of mets your mom has will help you more.

Best to you both.

Flalady

moodyk13

If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

On ibcspouse's behalf, I thank you!

ev1989

Check out ibcresearch.org    I talked to someone there that recommended IBC specialized clinics in TX and MI. At the MI one your doctor can consult with the specialists over the phone. Just another option for 2nd or 3rd opinions.

marium

my mom has a reccurence of ibc with in a month aft treatment of chemo n mastectomy of right breast,we r not satisfied wd the present treatment n want  to take second opinion frm us top oncologist.please help wd yr advise to safe my moms life,time is life.i m waitin fr best advise.tc

Faith316

I don't know where your mom lives, but if possible, maybe she can go to MD Anderson Cancer Center in Houston, Texas.  They have an inflammatory breast cancer clinic there.  Good luck.

marium

thank uany oncologist recommandation?

Faith316

I think they are probably all good at MD Anderson and I don't think you get to pick.  Go to their website and you can refer yourself.  It only took me about 3 weeks to get an appointment.