help understanding dx

Hi there!  I know all these words in pathology reports can be VERY overwhelming.   I have a lot of the same words in my pathology report.

I just want to be sure that your pathology report says **ADH** and not ALH.  That's because they think that ALH is like a less developed case of LCIS.  

ADH would be atypical ductal hyperplasia, and ALH would be atypical lobular hyperplasia.  Its the words 'atypical' and LCIS that put you at higher risk. ADH is formed from ductal cells, and the ALH and LCIS from lobular cells.  I have LCIS and ALH, but it says my LCIS has 'pagetoid spread to the ducts'.   One poster here said she had DCIS witih 'pagetoid spread to the lobules', so I guess they can spread in both directions.

Here's some websites that may help:

LCIS :http://cancer.stanford.edu/breastcancer/lcis.html

Columnar cell change and hyperplasia: http://surgpathcriteria.stanford.edu/breast/columnar_cell_change/

Its the LCIS and ADH (or ALH) that put you at higher risk for breast cancer.

They are doing the excision biopsy not to remove the LCIS, but to make sure there isn't something worse in the vicinity.  In roughly 15-30% of people (approximately - it varies from study to study) - when LCIS is found on a biopsy, they can find something worse (i.e. DCIS or invasive cancer)  in the vicinity.

It doesn't really matter if you 'get rid' of all your LCIS, because LCIS is often in both breasts, and there are often multiple spots of it.  Since LCIS normally does not show up  reliably on any imaging, you can't tell where it is, so you can't remove it all.  But even that doesn't matter because even if you have LCIS in one tiny spot in one breast, it puts both breasts at risk, even the breast areas that look totally normal.  They know this because prior to, say, the early 1990s, LCIS was commonly treated with prophylactic bilateral mastectomies, and they could look at the mastectomy specimens.  LCIS is a weird disease.

Welcome to the boards!  There are a lot of very supportive, knowledgable people here.  I'm sorry you got this diagnosis, but I'm happy you found us.

The usual treatment choices for LCIS and nothing worse are:

a) watchful waiting, with a minimum of multiple clinical exams/yr (at least 2) and yearly mammograms

b) The above (a) plus tamoxifen or other antihormonal

c) prophylactic bilateral mastectomies.

So far, I have opted for b ( with tamoxifen).  I have had irregular bleeding and endometrial polyps on tamoxifen, but I also had those before I started tamoxifen.  I was just declared postmenopausal, so my treatment may change.  I'm getting a TVS (transvaginal ultrasound) tomorrow.  My endometrial biopsy was normal.  Tamoxifen acts as an estrogen on the uterus, so it is common to have irregular bleeding and polyps on tamoxifen.

Since you do have ADH, and not ALH, you may want to consider getting your slides reread at a major institution.  ADH can be confused with DCIS.  DCIS does require definitive treatment, and normally requires treatment different from ADH. Sometimes/often DCIS gets treated with radiation, particularly after lumpectomy/excision, which is normally not done with LCIS/ALH.   In most of the studies I've read about ADH risk for progression to invasive breast cancer or DCIS (and I haven't read that many because I don't have ADH), they usually clump together ADH with ALH and call them atypia.

the other things that you mentioned are all benign conditions; the excisional biopsy is done to make sure nothing more serious than the the LCIS is found (DCIS or invasive bc). I was 46 also when my LCIS was found on core biopsy and then confirmed during exicisonal biopsy. I finished my 5 years of tamoxifen lst fall and fortunately tolerated it well with  minor SEs, mainly hot flashes. I am still monitored very closely with mammos alternating every 6 months with MRIs, breast exams on the opposite 6 months, and now I take Evista for further preventative measures. Praying you get good results soon and nothing more than LCIS is found. PM me if you'd like to talk.

Anne

Hi Mary,

I had an excisional biopsy June 5th for ALH. They found LCIS, but nothing else. The surgery was not bad at all. I was able to do most stuff  two days after surgery. I am still a little tender to touch. I did heavy lifting this past weekend. I don't plan on running yet, but that is just me.

Are you having a wire guided excisional? That is what I had. I had a compression bra, which came off the next day...way too tight. I switched to a sports bra and that was much more comfortable.

covertanjou,

Thanks. I have been very anxious...well more than anxious. The process of testing/waiting/more testing is very draining. I feel better now that I have been processing my diagnosis over the last few weeks. I have decided not to take tamoxifen, and am planning on having another round of testing in Oct. So for now I have chosen the close surveillance option. I do believe I will eventually have a prophylatic bilateral masectomy. I am taking it one day at a time.

Sending you a ((hug)).

Hi covertanjou and others -- I'm on the journey with you. I had a stereotactic needle biopsy on May 30, and dx was LCIS. An MRI on June 15 confirmed it, and also showed "clumped enhancement" ... which a surgeon suspects may be DCIS. (I had dx of atypia hyperplasia 13 years ago from a cyst biopsy). I'm going before a second opinion review board at a local hospital/breast center on June 30 to have 4 docs (surgeon, radiologist, pathologist and oncologist) give me their collective dx. It's a free service, so why not? Then, I have another appt with a second surgeon on July 2.  I'm most likely going to have an excisional biopsy in late July or early August.  I'm reading about tamoxifen, but I have high blood pressure and I've read the two don't mix. I'm 47, and I hate my barely-B, saggy and now disease-filled breasts. Depending on what the docs say, I may really think about mastectomy and let insurance pay for a perky new set.  Good Luck to everyone and stay in touch over the summer. 

Michele----yes, you do have to take an LCIS diagnosis seriously, but since you already had DCIS which is more "serious" than LCIS, your initial treatment was directed at the DCIS.  Are you having close monitoring now for the LCIS?  I finished my 5 years of tamoxifen last fall and continue with my high risk surveillance of alternating MRIs and mammos every 6 months with breast exams on the opposite 6 month schedule, so essentially I'm "seen" by some method every 3 months. I'm high risk due to the combination of LCIS and family history (mom had ILC) and have been at this almost 6 years now. Fortunately, I tolerated tamox very well. I would just recommend a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.

anne

I had LCIS, ADH and ALH diagnosis, radial scar (complex sclerosing lesion), sclerosing adenosis,columnar cell change and apocrine metaplasia.  I have several Dr's recommending mastectomy.  I've had surgery and radiation to left breast and 2 surgeries in right breast.  They all say the LCIS or something worse will occur in the opposite breast too.  Good luck to you.