what questions should I ask?

Dani444

I just received the call today from the breast center. They said the pathologist found cancer cells. The nurse navigator set up an appointment for tomorrow morning with a breast surgeon. She said they do not get a detailed report and the surgeon will have a more specific picture of what type of cancer it is. I am wondering what I should leave this appointment knowing, and any questions I should clarify if the doctor herself does not cover it. They navigator said I will be getting "a lot" of information tomorrow and I don't want to miss anything. I plan on bringing a notebook and would like to write down the questions tonight. I am exhausted from not being able to sleep well since this all started. Not to mention I just got done with 3 12 hr shifts in a row. So I despite having read a lot of information on here I just cannot focus right now.

Mrsayala24

I too was just diagnosed this morning! They said I have invasive Ductal Carcinoma. Still waiting for my hormone receptor results. Hopefully, someone can help with your questions. I had to leave work early because I couldn’t concentrate. My appointment is not until Monday I hope you get some answers tomorroq

Ingerp

The first decision most women face is whether to get a lumpectomy or mastectomy. Recommended treatment will depend on that decision and on the characteristics of your tumor. You can learn a lot from reading the profiles that show up when most women post. I knew exactly what would be recommended for me before I met with my MO because I'd spent quite a bit of time on this site.

Dani444

Mrsayala24, sorry you started your day with crappy news like I did. This just really sucks, I thought when they said they would call with the result it would have been a more in-depth picture. I am just being impatient, and of course anxious to have the whole picture. I am going to look around the forums and maybe get an idea of what I need to ask.

Luckynumber47

Let me start by saying that I think dr's should hand you a prescription for anti anxiety meds the same time you discover the lump. Until you get your treatment plan your mind just goes to too many scary places. Don't be afraid to ask for a prescription to get you through to surgery.

Your appointment should be a teaching appt, kind of like breast cancer 101. My appt lasted 2 hrs and my dr even drew me pictures. The dr will discuss treatment options and what they recommend. If they recommend lumpectomy/radiation you can choose that or a mastectomy, either one side or both. If that's what you choose then it's also your choice whether you want reconstruction or not. You don't have to rush your decision, surgery isn't usually an emergency.

Your dr probably will cover any question you could think of but be sure you understand the basics - the kind of cancer, a guess at the size, the grade, whether it's hormone and Her2 positive or negative, if they think lymph nodes are involved. Ask your dr if genetic testing should be done. I also had a screening breast MRI. Have you had one? Best to leave no stone unturned.

I know this is incredibly overwhelming but you'll be on the path to healing in no time.

Sending hugs, Lucky

Anonymous

Dani444 and Mrsayala24, so sorry to hear about your diagnosis. It's a real shocker for all of us when we hear that we have cancer. Fortunately, there is a lot of help and support and, from what I understand, treatment has improved through the years.

I strongly suggest you bring a trusted person or family member to your appointment(s)! Thank goodness my daughter came with me and wrote down everything the surgeon said. I was in a fog and hardly remembered anything so was glad I had notes to review. My doctor's office has a dedicated nurse and I could call any time with follow-up questions. She also came to my oncologists appointments.

This site has a very good list of questions to ask. Your Diagnosis: Questions to Ask Your Doctor

My heart goes out to both of you....well, all of us.

JoE777

My surgeon tuned to me after my biopsy and asked what he could do for me. I told him I thought I would have to have zanax for the wait on pathology .He turned to his nurse and told her to call my pharmacy so I could pick it up when I got home. That was a Thursday and he left for vacation the next day. My report came in that following Monday and he called me from Disney world in Florida on his wife's cell and talked to me about my path. His kind face is forever burned into my memory. Tell the doctor what you need!!!!

voraciousreader

register at the NCCN’s website and read the professional version of the breast cancer guidelines. It will help to act as a springboard...a good place to begin as you dive into this journey. early on, those guidelines and this message board were my lifeline..

Mrsayala24

I agree with the cancer 101 appointment should be first and almost right away if possible. There is such a long wait time for everything. I can see this community will be somewhere I am at regularl

jenndenino578

Dani444 -

If you have a smartphone I would ask them if it's okay to record the doctor's instructions during your visit on voice recorder app on the phone. I recorded my visit so I could listen to it later when I got home, my dr. didn't mind. You can try to take notes too but you might get flustered and not write down everything completely.

You can write down your questions ahead of time on a legal pad or in a notebook too. It's nice to have a backup recording though and I would also bring someone to the appointment if possible for emotional support.

Best of luck.

Dani444

Luckynumber47- Thanks for the great advice, I have written down those points in the notebook I am bringing. I also agree about the anxiety meds! Holy cow I have never experienced anxiety like this, but then again I have never been diagnosed with cancer before.

Jenndenino, great tip on recording it, I will look at a app before I head out.

JoE777, wow now that is an amazing caring doctor. So kind of him to think of his patients while on vacation.

voraciousre, and viewfinder. Thank you for the links, I am going to look at them now.

Thanks to everyone who responded!!!!!

Dani444

Just got back from my appointment. Holy cow that was A LOT of information to take in. I feel confident in the breast surgeon I met with. I will be getting a breast MRI next, then genetic testing. Mrsayala24 I hope for you to find times of calm while you are waiting. I felt so much better having an outline of options for my cancer. But man, that waiting really is the sucky part of this. I have an amazing nurse navigator that has already made my appointments for MRI, radiation oncologist, plastics, and genetics. I don't know how I could have done any of that without her. She also took the time to clarify/go over some points that I had forgotten about. My Dr. went over everything in such detail I really didn't need to ask many questions. Thank you all for the input and for listening to me. Seriously so thankful to have found this community.

Luckynumber47

Dani, so glad to hear your appointment went well. The most important part of this whole thing is having a dr you trust.

It might be a good idea to take one of those anti anxiety meds before the MRI. The sound really did me in so when I had to have the MRI biospy I took a Xanax and it made a world of difference. Just be sure you have someone who can drive you home

odat4me

Sorry you are going through this too. I just found out in July. Recovering from lumpectomy. I relate so much to everyone’s posts! I’ve reading Breasts an owners guide from Kristi Funk, a breast surgeon in CA. The chapter on being diagnosed with breast cancer was very informative. Good luck with all of your tests. Next step for me is a meeting with the oncologist on 9/17.

jenndenino578

I've had about 6 or 7 MRI's and I always take a xanax ahead of time. I have claustrophobia and the noises are really loud in those MRI machines. I've had an mri of the brain (they thought I had MS), cervical spine (2x), lumbar spine (2x), abdominal w/contrast and breast mri w/contrast. I wouldn't be able to tolerate being in those machines for an hour without an anti-anxiety medication ahead of time. I take it about half an hour before the test. Also, the higher Tesla machines (3T) can make you feel disoriented due to having a bigger magnet. Some people are also affected by gadolinium. I'm supposed to have another mri sometime next year.

I always have someone come with me for these tests so I don't have to drive.