Recently diagnosed

lovepugs77

Hi everyone. Here's my story:

No family history of breast cancer, but there is a history of lung cancer (maternal grandmother and maternal aunt). I found a lump in my left breast in November. I didn't go to the doctor right away for a variety of reasons. I had also found a lump when I was a teenager, and it went away when I quit caffeine, so I cut caffeine from my diet hoping that would do the trick again. I also quit taking birth control pills at that time. Fast forward to mid-January - the lump didn't seem to be changing, so I called the doctor. Had an appointment on Feb 1, and she didn't like the feel of the lump, so she got me in for a mammogram (my first - I'm 39) that same day. The radiologist discovered that in addition to the lump in my left breast, I had suspicious looking microcalcifications in my right breast. So he did an ultrasound, called my doctor, and had them refer me to a surgeon for biopsy.

I had a surgery consult on Feb. 3, and my first biopsy (core needle on the lump in the left breast) was on Feb. 7. I had a biopsy on my right breast (vacuum assisted stereotactic) on Feb. 13. I got the DX on the 17th. DCIS in the right breast, and IDC in the left. The right breast is ER +, PR +, HER -. Still waiting to hear back about receptors on the lump on the left (as of my last appt on the 21st).

Had my first MO appointment on the 21st. He had me do the Myriad genetic testing. I'm waiting to see if insurance will cover that. If not, I think he said that there was a different, less comprehensive genetic test we could do instead. He wants to wait for the results before starting any treatment. His recommendation is if the genetic tests come back positive for mutations, I have a bilateral mastectomy & radiation first. If it is negative he suggests chemo & hormone therapy, followed by lumpectomies. Is it odd that right now I don't really care which surgery they do? I really don't care if I have breasts as long as I'm alive! (I get the reasons to avoid mastectomy, it has just been interesting to me how much time they've spent emphasizing that it doesn't automatically have to happen)

So, now I'm just waiting. My next appointment is 3/14. He thinks he will have the results of the genetic tests by then, so we can formulate a plan for treatment. After all of the (very scary) urgency of the prior appointments, the waiting is unnerving. I haven't told anyone yet (just my fiance - he's been to the appointments with me) because I just can't face all of the questions when I don't have any answers. I also don't want them to worry more than necessary. I hate feeling like I'm hiding something, though. Mostly I'm just scared and anxious to start doing something about it.

I don't really have any questions, but I'm sure I will soon. Thanks for listening.

moodyblues

Lovepugs77.  Got how you are feeling when you said you don't care if you have breasts as long as your alive...me too!  I also am amazed at how they emphasize that a mastectomy doesn't have to be done and that a lumpectomy will suffice.  Unlike you I have told many people and believe it or not (talking about it) has relieved a great deal of internal craziness.  I am very private and didn't want anyone to worry about me or fear but, it was time to put myself first and not worry about worrying everyone else.  Wishing you well.

lovepugs77

Moodyblues, thanks for the reply & well wishes. I think my thing about telling people is that I only want to talk about it when I want to talk about it. After my initial meltdown, I've been pretty calm about the diagnosis. Don't get me wrong, I'm kind of obsessed right now, reading and processing, but I'm calm about it. I'm afraid that having people ask if I'm ok all the time will only make me not feel ok. Does that make sense?

mustlovepoodles

Oh, I get it. Believe me, I get it. I had genetic testing which came back negative, so we proceeded with lumpectomy, which was fine. LX with rads has a very good track record for women with small early cancers. Then, an expanded version came back with 2 gene mutations and the plan changed to bil mastectomy. Foo. And to add insult to injury, the pathology changed from PR+ to PR-. So then I needed chemo. Double foo.

I felt the way you do. I didn't want to tell anyone but DH at first. Once I got more info and had a plan in place I felt so much more in control. I changed my mind and decided to tell my children, siblings, and mom. They were all so supportive. I went on to tell some friends who really helped us get through this. I also made the decision to NOT put it out on Facebook.

I wish you the best as you travel down this road.

Bootscootin

This time between diagnosis and having a treatment plan in place is the most difficult and stressful time. Many people don't realize that there is more than one type of breast cancer and that many pieces of information are needed for a treatment plan to be proposed. Try not to worry and keep busy doing things you enjoy.

mustlovepoodles

Double post

bevin

Hi there, this is the hardest time and I remember it well. I was diagnosed at 45 and it seems like there are a lot more questions than answers in the beginning. Good luck to you. ask a lot of questions, take notes and seek second opinions.  Hoping all goes smoothly for you.