help! newly diagnosed or not?

amb63,

What you are feeling is perfectly normal. You have fallen down the rabbit hole into a world of questions, semantics, and controversy. Before this all happened, you probably thought of your mammograms as uncomfortable inconveniences, but didn't really think that anything scary would ever show up. Then when you did get some "interesting" results from that biopsy, you did your homework and thought you had it all together. The nurse's rather blunt way of expressing things has you reconsidering your comfort level.

Whenever there is a finding of LCIS, most doctors follow the protocol of excisional biopsy (or lumpectomy, although, you're right, it isn't really a lump) to see if the LCIS is the only nasty hanging around in there. That's because LCIS is often found when other worse things are found. It doesn't necessarily follow that worse forms of carcinoma will necessarily be hanging around your particular LCIS. By checking the area a little more thoroughly, your doctor may be able to ease your concern. If "nothing worse" is found, welcome to the club. Then you have to determine which course of action you want to take, but you don't have to rush into anything. Take a deep breath and try to find something to keep your mind occupied until the surgery. It won't be easy, but you can do this.

Anne

I understand where you are...I was diagnosed with ALH and LCIS in December after having a core needle biopsy due to a "suspicious" finding on my mammo. The results of the needle biopsy showed "atypical" cells which lead me to have an excisional biopsy because I wanted to attack head-on whatever was inside of me. The excisional biopsy lead to the discovery of the LCIS, a precancerous condition, while the "suspicious" area was nothing. So, in a way, I consider myself one of the lucky ones who at least will now be watched more closely. The surgeon told me that my options were watch closely, watch closely and take either tamoxifen or evista, or mastectomy which he wasn't recommending at this point in time. I've met with an onc, my family doctor, as well as a cancer nutritionist. While I think about this situation daily, it hasn't paralyzed me nor will it; my risk of getting invasive cancer in the future is 25%, but as my doctor told me that also means I have a 75% chance of not getting a cancer. The possible side effects of the drugs versus the limited benefit of the drug will probably keep me from taking them. For now, I keep my focus on my otherwise good health and have modified my diet somewhat and increased my exercise habits. My theory is that if I get cancer, at least I'm going to go into it with an otherwise healthy body. Good luck to you. As everyone else says on this board, you have to search your heart and soul and decide to do what makes the most sense to you.

hi. I just had hand surgery on my dominant hand so that's why my posts will be weird.



LCIS without anything else is an unusual diagnosis. No one knows how many women out there have LCIS and don't know it because it is usually only found on biopsy, and not everyone has a biopsy. For my age group (I'm in my mid-50s) one paper opined the incidence was about 1:10,000women-years.



LCIS puts you at higher risk of ILC, the 'sneaky one'.some papers say that about 40% of the invasive cancers that LCIS women get are ILC, as opposed to about 10% incidence of the 'general' population. ILC often forms sheets and not lumps.



They generally do excisions to make sure there isn't something worse going on. In roughly 10-30?% of cases where LCIS and nothing worse is found on biopsy, they find DCIS or worse in the area after excision. So statistics are with you they will not find worse.



I sometimes circle both yes and no to the question have you had cancer, or else circle no. I usually have to spend 5-10 minutes explaining myself.



Almost everything in an LCIS diagnosis is controversial, from the name, to what is the risk it imposes for breast cancer, to treatment, monitoring. The range of risk quotations I have gotten range from 10% (ie no extra risk from the average population) to 85% (in a risk calculator that has NOT been compared to populations.) I have LCIS, ALH, DH (ductal hyperplasia) and a weak family history. I was told at a major institution I should not have MRIs as I have 'too much scar tissue'. Others with a similar diagnosis here I think have had bilateral mastectomies recommended.



The most supported figure I could find is about 1% incidence of bc (or DCIS) per year. This may be halved with tamoxifen or AIs.



Welcome to our little group.

I am glad to find this support group as I was diagnosed with LCIS in mid-December and can identify with your feelings, amb63. I had an abnormal mammogram (microcalcifications), had a stereotatic biopsy and was diagnosed with ALH. The radiologist then recommended seeing a surgeon to have an excisional biopsy and after that I was told I have LCIS.  The oncologist prescribed Tamoxifen, although I have very conflicting feelings about taking it (I've been on it for 3 weeks.) Any information anyone has heard about the risk of developing cancer would be appreciated. My oncologist said the risk of developing cancer ranges from 3% to 35% and I've seen all kinds of other ranges. I'm 49 yrs old. Best wishes amb63 - I know what you're going through.