What Questions do I ask

johnboy88

Hi,  I was diagnosed with Idc, grade 3 on 08.29.  I go to see the surgeon on Tuesday.  I  don't know what to expect.  What questions do I ask?

johnboy88

I know I need to know what stage and if it has mestatsized.  But right now I can't seem to think of anything else.

WinningSoFar

Your surgeon should lead you through the process.  He/she should expect you to be in shock as I certainly was at this point.  Remember that you don't have to make any on-the-spot decisions.  You can take your time to decide, research, ask other people and come back here to this blog.  

If it were me, I'd want to know what the basic course of treatment would be (chemo first, chemo later, no chemo) and the same with surgery and radiation.  I'd want to know whether I should be scared witless or whether I will live for years with this (surgeons can do a lot to make us calm down because most of us are going to live years with this).  I'd bring a friend who takes notes (or a tape recorder).  Then, I'd take a deep breath.  

It will be ok, I know it. 

keepthefaith

johnboy88, sorry you found yourself here. I would suggest taking someone with you  to your appointment, if you can. Someone that is emotionally stable and able to listen for you. You may want to contact the American cancer society, your surgeons's office, etc., cancer center, to see if they have a patient navigator that can guide you. Some Dr's will take your lead and only tell you what they think you should know. If you feel the need to know more, you may have to ask. When the Dr gives you a plan for surgery, you can always get a second opinion, if you feel the need to. I had my Breast Surgeon take the biopsy results, etc before the "tumor board" and they all agreed that LX would be a good option for me. You may want to ask if they are doing any genetic testing, especially if you have a family history.

Wishing you the best~ 

johnboy88

Thank you, Alexgram.  Right now I am really freaking out.  You see I have severe rheumatoid arthritis, and, I admit, that I neglected my overall health and concentrated on my athritis.  Right now I am terrified that the cancer has spread.  Before this my breast did not hurt.  Now it hurts.  My arms did hurt, but I thought it was from the arthritis.  Now I see that lyphm nodes are on your forearm as well.  That is where my pain began a few months ago.  Again, I attributed to my arthritis. 

God, how on earth do you keep sane?   I see you've been a member a while.  You give me hope!!!!!!!Thanks for your advice!

Sjacobs146

I just met with my surgeon this morning, I received my biopsy results last week.  I will be having a lumpectomy in a few weeks.  I do not believe that they can tell stage or lymph node involvement until surgery.  I did a little research on my surgeon ahead of time.  You may want to ask how many mastectomies and lumpectomies they do in a month.  I believe that you are looking for someone who does at least 5 Mx and 15 Lx per month.  I'd your hospital does not have a tumor board, you might want to consider a second opinion.  

I also asked how long the recovery from surgery would be, and how long after surgery would I begin radiation if needed.  Other than that, she gave me all the information that I needed.  She said that her office would coordinate appointments with the radiation oncologist and medical oncologist and would be coordinating my care in general.  She also put me in touch with the breast cancer social worker (whom I had already met after my biopsy). What kind of treatment I need will be determined by the tests done on the tumor after it has been removed.  She feels that radiation and tamoxifen are likely (I am pre-menopausal), rest will be determined after surgery.

johnboy88

Thank you, Sjacobs146!

SallyS70

johnboy88, I also used a nurse navigator from my cancer center.  She anticipated questions.  She helped me formulate my thoughts.  Her services were free.  My case was also taken to a tumor board.  

WinningSoFar

Dear Johnboy, 

The worst time for anxiety is when you know the least, and that is now for you.  When you start meeting with your team it WILL get better.  Thank God for that or we'd all go off the rails and end up institutionalized.  For me, I started an antidepressant and that has made a huge positive differnece and I'm just on a min. dose.  

Really, I think that we get accustomed to everything, given a little time.  You will be happy again, you will laugh again, you will look forward to the future.  Really, it's true.  

In the meantime, don't worry about worrying.