Once dx, what to ask

ibcspouse

Once the battle for a correct dx of IBC is done, many have wondered what to ask in choosing your Onc for treatment.  This is some suggestions, they are from my wife's experience and is not intended to be the end all of be all.  I hope many of the ladies who have experience will add or delete from this list.

1.  Before I begin treatment, will staging test include, PET/CT, MUGA, Breast MRI, Brain MRI, Bone Scan, FNA of nodes, Chest x-rays, and CT's.  Will it include a complete baseline blood work up including CA 27.29 and CTC's

2.  Will you (the ONC) be willing to consult with IBC research teams from around the country. 

3.  Will you be comfortable with me bringing in research and the experience of other people that have IBC to discuss with you. 

4.  How ofter will you do Scans (PET/CT) during treatment, I would suggest after every 3rd treatment if on 3 wk treatment program. 

5.  Will you be willing to switch treatment before going to surgery if scans are not what you hoped for.

6.  Is newer treatments such as Avastin something you would look at.

7.  Will you give me your personal E-mail address or pager number so if something happens after hours, I can get in touch with you.

8.  Will you be willing to listen to me and address my concerns on such things as pain management and other SE issues. 

This is just a start of some of things I believe need to be addressed in choosing your Doc. 

Additions

a.   Have you (onc) heard of IBC and have you treated any patients with this dx.

b.  What type of chem drugs will I receive and how many treatments (i.e.  4 rounds A/C, 12 rounds of Taxol) ect....

Caseysmom

ibcspouse:

This is a great list

Have you (onc) heard of IBC and have you treated any patients with this dx.

What type of chem drugs will I receive and how many treatments (i.e.  4 rounds A/C, 12 rounds of Taxol) ect....

Laura

angeltam

TY ibcspouse & Caseysmom,

I'm going to print this out & make sure to take it in to my appointment next week "if" needed. It sure does help out a lot. Sometime (I know for sure) emotions get in the way, with no/little knowledge & IMPORTANT issues get passed up, this will help.

Thank you. Praying for you all