I guess I am here now. What questions do I ask?

capippy

Hi Everyone. I feel a little like I am underwater or going through sort of a surreal out of body experience, but hopefully this will all be just a blip on my life's radar.

Here is my situation. I get regular mammograms, my last one in May showed some clusters of calcium or something like that. Had a compression mammogram, still suspicious. Had Ultrasound - radiologist said 'much ado about nothing' so I was surprised to be called back for biopsy. Had biopsy - showed ADH cells. Met with surgeon who said she wasn't concerned but wanted me to do lumpectomy to be sure. Had lumpectomy on July 2nd. Had follow up appointment with Surgeon on Friday and it is cancer. My surgeon is not very communicative. She just said a 'small cancer' - I pushed for more info and asked her what type, etc so she (almost unwillingly) told me it was mucinous carcinoma - a rare but usually slow moving invasive cancer. My pathology report is going to the Tumour Board on Tuesday and they will decide action. She said I was Estrogen positive so would be out on tamixofen, and the board would decide if I need radiation and/or re-do the lumpectomy.

I'm kind of lost. I don't know what to ask. I've been reading up (this board is awesome) but it feels like they are just going to 'tell' me what's happening. Do I have a choice? I guess it's my body, but shouldn't I leave it to the experts? I asked the surgeon if there is a chance that I have it in the other (left) breast and she was very dismissive - that they were not signs of that on the mammogram. I pointed out that they were surprised to find cancer in the right breast when they got the path results, so maybe it's in both. She didn't agree, so I guess that's good.

I do not want this to be my life now - always waiting, always worrying, another lumpectomy, another biopsy. I can't deal with that. Maybe the board will meet on tuesday, say it was a clear margin and that I'll just start tamoxifen and monitor with mammograms yearly. But if they want me to do radiation and another lumpectomy… won't I limit my reconstruction options if it comes back? Am I crazy to even ask the question if I'm a candidate just to have a double mastectomy and move on? I can't believe all these words are part of my vocabulary now.

I'm sorry for the ramble. I'm kind of lost. Am I overreacting? Any advice would be welcomed.

CA

CAMommy

I'm sorry you are here. I completely understand. I never wanted to be part of this group or know all about these things either

I asked my surgeon about reconstruction later after lumpectomy + radiation and he said it is doable, a bit harder for the plastic surgeon but definitely doable. If you talk to the PS they will say do it now if you are even considering it because it's easier for them, not you. He said if I did need it if I had a recurrence there wouldn't be a problem, even after radiation.

I worried about my other breast too. But I have to let it go. I have very "fatty" breasts according to everyone (um... Thanks? Lol) and apparently nothing can hide in them so they feel good if I have anything show up they will find it early like this one.

muska

Hi capippy, I am sorry you are joining the club here. You should ask all the questions that are on your mind when you meet with the surgeon and later on with the radiologist and medical oncologist. There is nothing wrong about asking questions. Write them down before your next appointment. I used to have a notebook where I jotted down questions to specialists as they came to my mind. If you are interested in reconstruction options for the future maybe you can talk to a plastic surgeon - after you talk to your breast surgeon again.

It is your body and you do have choices. One thing you might want to try when you talk to your breast surgeon for example, is ask what she would do if this happened to her. I tried this a few times and you would be surprised how this changes the conversation - sometimes.

A second or even third opinion may help if you are not sure.

ElaineTherese

capippy,

The others have given you some good advice. I just wanted to add that the likelihood that your left breast also has cancer is small. That doesn't mean that you don't have the option of a bilateral mastectomy, though your doctors may not encourage that option. It also sounds like you're uncomfortable with your surgeon and her reluctance to answer questions. You may want to check in with some other surgeons if you need more surgery any time soon. Good luck!

capippy

Thank you so much for replying everyone; for the support and for the advice.

I'm feeling a bit calmer today and have spent the weekend reading as much as possible. I do think my surgeon is very to the point (and has very little communication skills) but I really trust my family doctor with my life so I called her today and had a grand chat. She is going to get all of my reports and I'm going to see her Thursday morning to get all the details of the cancer and to discuss everything with her in detail. I will feel a little bit more in control when I know the type, size, grade etc and get my Doc's feedback and benefit from her experience. I'm feeling much more positive, knowing that I will get the info I need in a couple of days - so I'll not panic until I need to.