Please help

Tiffany, how great that you are able to go with your sister to her appointment to support her.  I know when I was first diagnosed I brought my dad with me to my first appointment with the surgeon and it was really helpful. 

I'd suggest bringing a pad of paper and pen so you can take notes in case you are unsure of something afterwards.  I'd also recommend bringing a list of questions so you don't forget any of your questions.  (Sounds like you are already planning to do this.)

Other things I would recommend asking about are:

1. Are there any other tests the doctor would recommend before making a final treatment decision?  In my case, I have a number of relatives who are BRCA1+ (though no family history in my more immediate family) so the doctor recommended genetic testing.  He also recommended an MRI to see if anything else showed up on that (sometimes cancer will show up on an MRI but not a mammogram and vice versa).  In my case, nothing new showed up and I was BRCA1- so I proceeded with a lumpectomy and radiation as planned. 

2. What are the treatment options and for each what are the statistics re recurrance or second cancer with each one?

3.  If lumpectomy is an option, what does the doctor think the outcome would be cosmetically?  If mastectomy is being considered ask the doctor to explain the various reconstruction options.

4.  I would ask the doctor to explain the pathology report from the biopsy if you have questions as well.

I'm sure others will make additional suggestions as well and I may think of more questions, too, but I wanted to give you some thoughts.  Depending how you proceed you may be meeting with other doctors too (radiation oncologist, medical oncologist) and will have some different questions for them, but likely that will not be until after surgery (at least in my case that is how I did it).

Hang in there.  This is really hard, but gets easier (at least it did for me and I think it does for most others) once decisions have been made.

Oh, also, I would suggest if your sister feels uncomfortable or unsure after meeting the doctor that you get a second opinion.  Even if it doesn't change her treatment options it may make her feel more comfortable and to me it is critical that she be comfortable with whatever treatment decisions she makes.

Shocked, I assume you posted that here by mistake since it is totally unrelated to the question being asked by someone who is looking for help ... If so, perhaps you could delete it in this discussion thread.

Those are some wonderful tips from both Aloha & Jelson. I went to the bookstore and stayed for 4 hours the afternoon before my surgurey to read up on as much as I possiblly could b/c you can't get too much info when it comes to breast cancer...Taking notes as well as talking to others that has gone thru this ordeal is certainly a +... I totally agree that she should get a 2nd opinion...Tell her while she is reading material or talking to someone if she has a question she wants to discuss with her dr having it written down will help her out alot...I had so many questions written down to ask my dr and they should take all the time she needs to help her understand and get answers she is looking for...I think you are a wonderful sister and I am so happy that she will have you by her side...it is terrifying but it does get easier I promise...I paniced so bad when I got the call and had my grandbaby with me for the entire week which was a blessing in disguise....Lots of prayers going out to your sister as well as for you....

God Bless!!

Just one other suggestion to add to the excellent advice you have already gotten.  Your sister is very young for this diagnosis, so I would specifically ask the doctors about how her treatment will be tailored in relation to her age.  Good luck.  It's a lot to absorb and really scary--but I felt a lot better after I started talking to doctors and weighing my options. 

I wanted to add that whether or not to do MRIs is a matter of controversy.  Some surgeons are pro and some are against.  Personally, I'm pro-MRI and would encourage your sister to have one before any surgery.

While no imaging tool is perfect, meaning that none of them catch all the problems and all of them also catch things that turn out not to be problems, I think it's better to use all the tools possible to evaluate the possible extent of disease BEFORE you start cutting in surgery.  MRIs are sensitive and some Drs feel there are too many false positives to make it worthwhile.  Personally, I think that's a crap argument since the false positive rate is better than mammography (but mammography is cheaper and less resource intensive for the hospital).  So I think it's really an argument about money, but others disagree.

Anyway, I wanted you to be aware that its use is controversial, and she might have to push a bit to have one if that was what she chose to do.

If she DOES choose to have one, there's a specific window in the menstrual cycle which cuts down on hormone-induced false positives.  Make sure she schedules the test at the right time of her cycle.  Not all Drs bother to mention this, so make sure she brings it up.

On another issue, I'd recommend consulting a plastic surgeon (or two) if it even remotely seems like plastic surgery might be involved.  The breast surgeon's job is to remove the cancer and the plastic surgeon's job is to fix what's left.  I found that breast surgeons would sometimes say things could be done which the plastic surgeons thought were unlikely to succeed.  They're different jobs with different (but overlapping) knowledge bases and skill sets.  Talk to plastic surgeons about plastic surgery, don't take the cancer surgeon's word for what they think the plastic surgeon can do.

Best wishes! 

Really good advice above, and please suggest to her that she add one more very important specialist to her list of doc's - a therapist - that is almost never included with the recommeded docs - but at this time when everyone has an opinion it is SOOOO important for her to hear her own voice!!!   A therapist will help her do that!  Good luck!  Deirdre

Tiffany,

I am one year out from DCIS and bilateral mastectomies with reconstruction.  I needed a mastectomy on the left because my DCIS was multifocal (in 3 quadrants.)  Then the MRI found somthing questionable on the right, so rather than biopsy it, I chose to have a bilateral mastectomy.  The area on the right turned out to have LCIS so I'm glad I made that decision.

Anyway, everyone is different but for me, knowing that I could have reconstruction at the same time as the mastectomies made a big difference to me emotionally.

Your sister is going to be seeing these doctors regularly for a long time, so make sure she is comfortable with them.  For reconstruction, go to at least 2 doctors for consultations.  Make sure to go to a doctor who specializes in breast reconstruction, not just a regular plastic surgeon.  There is a whole section on this forum for breast reconstruction, and you can get great information there.  

Write down your questions beforehand.  That helps organize your thoughts and you won't forget anything important.  Jot down the answers too, because otherwise you will get home, and forget the details of what the doctor said.

Nobody likes being diagnosed with cancer, but DCIS is very treatable and curable.  Try to keep that in mind.  

Please check in and let us know how you and your sister are doing.