help understanding dx
I went in for my pre-op yesterday (will be having an excisional biopsy after having had a stereo biopsy), and was able to see my pathology report. The report from my stereo biopsy states:
Lobular Intaepitelial Neoplaisa (ADH/LCIS Spectrum). Fibrocystic changes with Adenosis, Columnar cell changes/hyperaplasia; Usual ductal hyplasia and Aporcrine metaplasia.
Can anyone tell me what this means? I understand that my samples shows ADH and LCIS. What are the other things? What are they looking for in the excision biopsy?
Comments
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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.
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Hi,
Thank you so much for the info. My pathology report is definitely ADH/LCIS. So I guess, as you wrote, they can spread in both lobules and ducts. Very confusing.
I am SO GLAD I found these boards. It is comforting to know you can chat with someone who is going through what you are.
I hope you are doing well. What is your treatment?
Thank you again.
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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.
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Again, thank you for your reply.
I am currently being followed by doctors associated to a major university hospital/Breast center so I am comfortable with the dx. I imagine that the new excision biopsy will clear things up definitively.
I have done quite a bit of research, and from what I understand DCIS is discovered about 30% after excision biopsy where ADH was first found with core needle biopsy.
I must say that as my operation approaches, and I do more research my fear rises. I hate having something inside me that I can't control. I'm sure you feel the same way.
I am not menopausal (I am 46), so I guess Tamo is an option, but I am afraid of the side effects.
I am glad that you are being closely followed. My thoughts and prayers are with you.
Thank you for your help.
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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
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HI Anne,
Thank you so much for you reply. I will wait for the excision and the biopsy before I decide what I will do. Taking Tamo frightens me, so I am hoping I don't have to take that.
How did the excision biopsy go? How soon after were you able to go to work? Exercise? I am lucky that I am home for the summer and have to go back to work one month after the excision. How long was the recovery?
I am glad you're doing well.
Mary
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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.
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Hi,
I am glad you're doing okay, and that the surgery went well. I am having an excision biopsy. The radiologist put a "marker" in my breast after my stereotactic biopsy in case the surgeon had to go in to do an excision.
How are you doing with your dx? Are you taking any medications?
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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)).
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Mary---the excisional biopsy wasn't bad ----it was a day surgery, I was in at 6:30. home by 2:00, rested most of that day and the next and was back to normal activites in less than a week. I was numbed up really well for the wire localization procedure, so it wasn't painful, just pressure, then had conscious sedation for the lumpectomy, so I didn't feel or remember a thing, just waking up in recovery with a snug chest binder on, which I was allowed to remove and shower after 2 days with just the steri strips remaining. I had very little pain. I had lost my job just prior to diagnosis, but that was a blessing in disguise as it gave me plenty of time to research and make decisions. The stats say that in 15 to 30% something more is found on excisional biopsy; that means 70 to 85% of the time nothing more is found--hang on to those numbers, they're huge !!!
anne
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Cleomoon.
The waiting/testing cycle is very draining. I can understad not taking tamo. It is a tough decision to make, and you have to do what is right for you. I don't know if I could take tamo either, but I will wait and see what the final diagnosis is before I decide anything.
Please let me know how you are doing.
Hugs
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Hi, this is my first post and I am happy to share my recent experience with you. On June 15, I had an excisional biopsy based on results from a needle biopsy. My dx was pleomorphic LCIS on needle biopsy and LCIS on excisional biopsy. I was extremely stressed out regarding the surgery process, but let me help you manage your expectations to help relieve some of your anxiety. The wire localization process will take around 30-45 minutes, be prepared to have more than one mammography. The location of the area in question will dictate how challenging the wire localization will be. My location in question was against my chest wall requiring several mammograms prior to the radiologist placing the wire. When the wire is placed lidocaine is used and you will feel pain similar to a bee sting, this is a very short period. After the wire is placed another mammogram is completed to confirm the correct location of the wire ( I had clips placed during my needle biopsy). After confirmation I was wheeled to surgery, I did have general sedation, this was due to where the LCIS was found. I was in surgical recovery for about an hour and then moved to ambulatory recovery for an additional hour. My chest was bound and steri-strips were placed at the incision site. I showered in 24 hours and removed the chest bandages, leaving the steri strips. I worked from home the next day. I received my path results in 2 days and confirmation of LCIS was confirmed. I visited my breast surgeon yesterday and I am healing well. As far as exercising , this is off limits for two weeks, even power walking is not advised. To tell you the truth I was more relieved after the surgery and kept myself very busy prior to the path report. I am now entering the second phase of meeting with medical oncologists, I have two appointments and will explore all my options.
Hang in there the anxiety is worse than the surgery. You will do great, I wish you the best of luck.
Beth
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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.
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Hi Lee McC,
I posted to your question over on the recon site: Mr. Massey joins NOLA, and bumped it up for you. Didn't know if you got to see my response.
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Beth,Thank you so much for sharing your story. I am really glad to hear you are doing well. Your calm explantation of the surgery has put my mind at ease. You are so right about the waiting being worse than the actual surgery. It is the waiting and not knowing that is driving me crazy. I am overwhelmed with the outpouring of support on these boards. Please let me know how your appointments with the medical oncologists go. You can PM me if you wish.Lee,Thank you for your reply. I too am going to have my biopsy in late July. I understand your feelings about Tamo. I have slightly elevated cholesterol levels, so tamo may not be an option for me, but I will wait for the exicisional and the dx before I make any decisions.To all of you, you have made this stressful time bearable. Reading your stories and getting your support....well, I am tearing up at the moment. I cannot express my thanks enough. My thoughts are with you all. Thank you so much,Mary
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Hi to everyone on this thread who seem to be in the same boat as me! I went through the same stuff you all have- stereos, multi mammos, MRI, 2 excisionals to remove small DCIS and now have the LCIS and ADH, which I am still a little confused as to how serious I should take that diagnosis. The DCIS has been removed, so I feel pretty confident that I'm 'safe' for the time being. My surgeon put me on Tamoxifin which I was Oh so reluctant to take after reading all of the SEs, but I've been on it for three weeks now and have to say, not one side effect. They say to give it two to three months to really see any changes, but so far so good. I just turned 40 and am pre-menopausal, not sure if that is good or bad on Tam- but I really have to say that if it is reducing my risk, I am all for it. I am still considering a mastectomy in the back of my mind, but will give myself the summer to think about it. Anyone else just start Tam? Anyone else have the LCIS/ADH diagnosis? Thanks for your input, I really love this site - it has helped me so much- especially with people like Leaf who are so educated!
Michele
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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
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Thanks, Anne! I will go in September and January for mammos and meetings with my breast surgeon and oncologist... that's where we are right now. My surgeon doesn't seem to think MRIs are necessary at this point, I did have one three months ago. I go to Sloan in NYC so I feel pretty confident that I am in good hands, but I guess you never know. I will ask my ob/gyn about the transvaginal ultrasound- I did inform him that I am on Tamoxifin and he said we will check things out at my yearly in December. My mom passed away of BC 14 years ago, but my gene test came back negative- not that that means everything. I will ask about being seen every 3 months as you are, that seems like the safe way to go. Have you ever thought about a mastectomy? It is a strong thought for me.
Thanks again.
Michele
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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.
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Was there someone on this thread that found an enlarged lymph node after surgery was done and rads were done? There is this lady that posted this and has had no response. She is really anxious.
LoriL wrote:
Hello ladies!
I had bilateral mast 5/28/09 with a negative Sentinel node biopsy at that time. About 2-3 weeks ago I noticed an enlarged lymph node (a little smaller than the size of a marble) but reasoned that it was from the recent surgery. I started rads 3 days ago since my margins were close, and mentioned the lymph node to my Radiation Oncologist today. He believes it is likely from the surgery, but wants it biopsied just to be on the safe side. Now I'm REALLY worried!
My surgeon was certain that he had identified the correct Sentinel node, but I know that they are not 100% accurate. Has anyone out there had a negative Sentinel node biopsy but then found to have cancer in other nodes???
I was able to get in to see my surgeon tomorrow- I'm hoping he will do a needle biopsy right then in the office. I swear, this is almost worrying me more than I was before the initial cancer diagnosis! I have been breathing a sigh of relief as my Oncotype Dx was low and therefore chemo wasn't needed. But, now, my mind is just racing! Help!
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