Recently Diagnosed & Under 40

Cali your Drs recommendation seems to be a bit radical. ADH and LCIS are not invasive cancers. They are markers that may increase your risk of developing cancer. With that being said pregnancy throws a whole new curve into the mix since it increases your hormones. I would go see an oncologist that has experience with LCIS.

How was your Dx made from a biopsy or excision?

If you have a lump, you may not do needle placement.  If you do have needle placement, then I would advise you have a plan in place in the UNLIKELY event you have pain.  I had a mammo-guided needle placement and had a hard time.  However, most people have tolerable pain (<=4/10).

In a mammo guided needle placement, they admonish you that you should not move a muscle through the procedure.  Since you can't look at a clock, I don't know how long it lasted, but I'm sure it was at least 30 minutes.  

We all have different personalities, and different ways of handling stress/pain.  For me, I knew if I told him I was in this much pain I would cry, and if I cried I would move.  I was never asked if I had pain.  When he saw my face, he did inject some local anesthetic, but it did not work for me.  If I ever have to have another, I will bring along a bell or rattle or something that makes noises, and have a conversation before the procedure starts about what is going to happen if I have pain.

Again, most people do have a tolerable time with pain, and probably many who do not are able to directly tell the doc they are in pain.  I was not.  (A few months later I was diagnosed with a PTSD-like syndrome.)  It doesn't matter if this happens in the majority of patients, or if it happens in 1 out of a million cases.  It doesn't matter if it is due to my nutty personality.   No one should have severe pain during a procedure.

For me, just in case they opt not to respond, next time I will smother my breast in Orajel before the procedure (since they do not allow oral meds since you are going to have surgery.)  I know this will only numb the skin and not the insides, but that's the best I can think of.

In a poll I did (Aug 2006), with 38  total responses,  50% of the people had injectable local anesthesia beforehand and had a pain score <=4/10.   18% had injectable local anesthesia beforehand and had a pain score >4/10.  8%did not have injectable local anesthesia beforehand and had a pain score <=4/10.  24% did not have injectable local anesthesia beforehand and had a pain score >4/10.

I just want you to be as pain-free as possible.

Cali--I was diagnosed 6 years ago with LCIS at age 46. I was already done with having kids, so I can't speak to the pregnancy issue with LCIS, but I would recommend seeking out the opinion of an oncologist. (they are the specialist in cancer, not the gyn or the surgeon). The excisional biopsy is not meant to remove all the LCIS ( since it is thought to be multifocal, multicentric and bilateral, which means it could be anywhere throughout  either or both breasts--the risk is the same whether it is in one spot or many)--it is done to make sure there is no invasive bc in there along with the LCIS. I took tamoxifen for 5 years and still continue with high risk surveillance of alternating mammos with MRIs every 6 months and breast exams on the opposite 6 months.  Praying you get good results soon.

anne

Hi Cali7,

Last week I had a stereotactic biopsy for calcifications found in my left breast during a baseline mammogram.  They called me with results the next day and told me that I have LCIS and need an excisional biopsy but that most likely it will be benign.  I was wondering how you have been doing a year later.  My husband and I were ready to start a family but have put it on hold because of this and from all the stuff I've been reading it has been making me nuts.  Some say never to have children, etc...so I wanted to see if you started a family or if they told you not too.  Any help would be greatly appreciated.  It's great that these forums have been setup.  Until now I never knew about any of this so I'm scared to death.  I'm 36 and will be seeing the dr in a few days to go over my stereotactic results and I guess he'll tell me what the next steps are.

HI Cali,  I can relate to your situation as far as the surveillance driving a person insane.  I went the BMX route and really am happy how the whole thing went.  I know it is a hard decision.  Most people with standard LCIS tend to take tamoxifen and keep their breasts.  My family history and the high grade of the LCIS pushed me the other way.

Let me say that now, over one year post surgery, I have lost nothing at all as far as mobility, movement etc.  I dance and it did not affect me.  I have no pain and no problems.  I am so much less anxious than before.  All is good.

I cannot see why you couldn't have as many kids as you want after surgery.  Once the breasts are gone, so is 95% of the risk. 

Hi Cali,

I was just wondering if you ever decided to go ahead with the double mastectomy?  And if so, how you are making out?  After my LCIS diagnosis I went back to my surgeon for my 6 month followup and they found some new calcifciations that they tested and found ADH.  After having a open excisional biopsy last month they found a small amount of DCIS 0.4cm, low to intermediate grade (1/2), no necrosis.  My surgeon is recommending a double mastectomy.  I went in to speak to him yesterday and had a consultation with the plastic surgeon.  I'm going to go for a few more opinions before I make any decision.  I just turned 37 last week so this is all freaking me out.  I have no family history.  I hope everything turned out well for you.  I haven't been on the site since the last time this happened because I've just been occupied with so much other stuff.  I just realized you had responded to me.  Thank you!