Just starting

jln2

Hey everyone

My story starts a little less than a month ago with an abnormal screening mammo (happened last year too). The diagnostic mammo and ultrasound were also not good news so I was sent for a biopsy. 2 areas of concern were tested. Results came in on Monday. 1 returned as atypical cells and the other as invasive lobular carcinoma, unifocal, 5mm. The 3rd area showing on the mammo wasn't biopsied due to it's proximity to the cancer area. I met with the surgeon on Wednesday and now I'm starting to panic. Due to family history of other cancers she is recommending genetic testing (already spit in the little tube, waiting for the company to call with pricing before the tests are run). I go for the MRI on Monday. But the hormone receptors aren't back yet and she scared me saying my breasts are "busy" with multiple calcifications and dense tissue (I think). She also brought up the possibility of mastectomy which scares the bejesus out of me. I've been asking for likely treatments at every step of the process so far and most have said lumpectomy and radiation, so that's what I've prepared myself for mentally (at least as much as I can). The thought that this might be more serious than 1 little lump is terrifying. I'm trying to put it in a box and not constantly worry, but that isn't going so well. I've been waking up middle of the night and not getting back to a good sleep - even with OTC sleep aids taken at bedtime.

How long should the hormone stuff take to come back?

Moderators

HI jln2, and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our community and incredible source of information, advice, and support -- we're all here for you!

We know it's hard not to worry, but try not to get ahead of yourself. Once all of your pathology information is in, including your hormone status, you'll be better able to put a treatment plan together with your doctor. Once that is in place, you're sure to feel a little better about getting through this and focusing on recovery and beyond.

Others will be by shortly to share their experiences and support; in the meantime, we're sending all our best thoughts your way!

--The Mods

Salamandra

Hey jln2,

I'm so sorry you got unwelcome news!

I think the ILC forum might be really helpful for you. That wasn't my diagnosis so I don't know as much about it, but my understanding is that the bad news about ILCi is that it can be tricky in the breast, and a mastectomy is more likely to be recommended. But the good news is that once dealt with in the breast, it is overall less likely to metastasize and often has a better prognosis.

You're still in that terrible early waiting time, with incomplete information. For some of us, an anti-anxiety med like Ativan or Xanax was really helpful. Try to take care of yourself and just keep going. The anxiety will most likely get better once you get the rest of the results in and have a plan.

edj3

Salamandra is right, it's so hard to wait for all the information and then all the pieces of the plan. Much peace to you.

beach2beach

Hi,

I believe it took about 4-5 days before I got the hormone receptor status back. I had dense breasts and calcifications. None of my calcifications were related to my cancer. Not in the same area. I was offered a lumpectomy, also had ILC, so mastectomy is not always a given, but i chose a mastectomy. I just did not want to go every 6mths for increased surveillance. Would have increased my anxiety 10fold. That's just me. Once you get all the info in, go over it and think about it. It is a very personal decision. Sometimes its pretty clear by what they tell you and other times you are just not sure of which option to choose. Go with your gut. Get a second opinion if that helps. You also have to feel comfortable with whomever you are dealing with, breast surgeon etc.

There is the light at the end of the tunnel, and it is true that though its still on your mind 24/7, once you have all your info and have a plan set, you go into battle mode. You'll sleep, but it won't be like it was before, but I can say now being on the other side of it..almost two years out..I go to sleep. Many days I don't think about it and some days and nights I do. You really will get through this.

OnTarget

Hi JLN2, sorry to hear about your diagnosis. My decision was easier because I had a 3cm tumor, and the surgeon said that my small breast would not look good after. I was like "bye boob".

It's a really tough choice. For me it came down to peace of mind, not wanting radiation, and aesthetics.

When they found a suspicious mass in the other, I was happy to go with BMX.

So far, the waiting was the worst thing, and I felt such relief after the BMX!

purple-flower

Hi OnTarget

I have a few questions for you if you get a minute... Why did you do the chemo after the mastectomy, and hormonal therapy? I am in a similar situation as you - although I only have the 1st diagnosis. Surgery consult tomorrow and then more waiting, and then will need the have lump removed w/lymph nodes to know how things look. When you do that first surgery/lump test - how did they get the second diagnosis on other breast? Another surgery or biopsy? I'm a bit confused.

This is a terribly long road and I am really freaked out today. I am an independent consultant also so if I don't work, I don't get paid. Health insurance barely and not a lot of other funds around. So sad.

Thanks

PF