Just diagnosed LCIS and multifocal ALH

covertanjou · July 2009

Lee,

I am so sorry to hear about your dx. Please keep us informed about how you are doing. (((HUGS))). This disease sucks!!

Cathy,

I am waiting for the surgery to be over, and then I will see an oncologist once I get the results of the biopsy. That is how it works at the breast center I go to. I also already scheduled an appointment with another breast center where I live for a second opinion. I am lucky that I live in a university town, so there are many great hospitals and breast centers (Montreal). I probably will not get the results before the end of next week (UGH!!). I am hoping for sooner, but I will have to wait and see.

Do you have your dx, Cathy? What has the oncologist told you?

Tomorrow is biopsy day. Very nervous, but at least I actually slept last night. I took a sedative and hit the sack. I may do the same thing tonight.

Hugs to everyone.

covertanjou · July 2009

Cathy,

I obviously am a little scattered this morning since I can see your dx. Please excuse my addled brain. I am functioning at half capacity. Part of my brain is preoccupied with tomorrow.

Mary

cleomoon · July 2009

Mary,

Will be thinking of you tomorrow.

((Hugs))

covertanjou · July 2009

Thank you everyone for your kind wishes.

Anonymous · July 2009

Mary I was thinking of you today and hope everything went well for you. When you feel up to it, let us know how you are doing and how everything went for you.

Today I was notified that my appointment for breast mri is next Tuesday. Although I was a little suprised and relieved that it is so soon, it also really scares me. When I called the hospital, which is approx. 10 hours away,and asked how long it would be for the appt, they said it usually takes 4-6 weeks. So when they called back to say my appt is next Tuesday July 28, I was shocked. She said the oncologist had marked "Urgent" on the referral.

Can anybody who has had a breast MRI tell me if the radiologist will show/tell you anything when you have these? If they do show me but won't tell me anything, what could I/should I be looking for. The clerk did say they will be using some kind of a dye, so does this help to see things better or make things more obvious. Or can anyone tell me anything more about the process. I have had one other MRI, but not for breast, and they did not use a dye, so I am just trying to prepare myself for this. My doctor had given me a anxiety medication which I did not take that time, but I have asked for one this time and think I will take it. I understand you are facing down also, not sure if this might be better? Look forward to any help/thoughts/opinions on this.

Thanks

Cathy

leaf · July 2009

I have not had a breast MRI,but I have had a spine MRI.

They gave me a copy of my MRI as I left the facility. Of course, it hadn't been interpreted by a radiologist, so I couldn't interpret it. The neurosurgeon was very transparent about everything.

On the other hand, my facility has been very secretive about breast imaging. When I had my excision, I had to physically transport them from one place to another. They sealed the whole package, so I couldn't look at it.

I don't know if this is just my facility, my doctors, or a general trend (? women can't understand what is on their imaging, or there may be a lawsuit, or whatever.)

LeeMcC · July 2009

Cathy -- I had a breast MRI about a month ago. It's more nervewracking than anything. Wear slip on pants -- cause I could have left on my shorts if they didn't have a zipper (nothing metal). They put in an IV for the dye injection (but the dye is clear!). They give you earplugs. You lay on your stomach with your boobs hanging in a hole ... but they try to get you as comfortable as possible (pillows under knees, etc.). Then your slide into the donut/tube and the technician is taking to you through a speaker system. The images go on and off throughout the whole thing, which for me, took about 15-20 minutes. But they were 2 minutes, 30 seconds, then 4 minutes, then 2 minutes, etc. etc. And you get to twitch and cough and take a big breath/sigh during the downtimes. I kept watching for the dye to go in ... cause she'd say "now I'm adding some dye to these images" (but then I found out the dye was clear!). The worst part, really, for me was when she told me not to move my head or chest, cause then OF COURSE I'd feel like I had to take a deep breath or my nose itched. I just kept my eyes closed and thought about good things. Mine was at 7:30am, so I tried to catch a few extra winks.

My technician wouldn't tell me anything. But the results from MRI don't take very long. The radiologist called me 2 days later.

Lee

Anonymous · July 2009

Cathy--I've had 4 breast MRIs now---they're noisy and a bit close, but really not that bad. They give you earplugs (sounds like sneakers tumbling around in a clothes dryer); you are face down and go in feet first, but can still see the floor and your hands due to an angled mirror, your resting your head/face in a cushioned opening similar to a massage table set-up; it's actually kind of relaxing. The only thing I don't like is the IV, since it's always hard to get one into me. You just feel a little cool feeling for about 30 seconds whent the dye goes in (gadolinium). The tech sometimes talks to you over the intercom to let you know what comes next. The important thing is to lay as still as you possible can so they can get clear pictures. I just kinda meditate/pray and that helps me alot. Usually I don't get results for 3 to 5 days, but once the radiologist took me in immediately--I think she was having an easy day and no one was after me. The techs aren't allowed to give any interpretation anyway. PM me if you have any questions. (I've also had an MRI for my shoulder; also my first 2 breast MRIs were done differently at a different facility, so I've run the whole gambit).

Anne

kdebartelo · July 2009

Hi I was diagnosed with LCIS on March 6 2009 only in the left breast nothing in the right. I have no family history of BC that I know of and have had mammos since age 27 because it was offered to me by my insurance and now Im 41 have 2 kids 8 and 12. I also have "classical" LCIS. My LCIS was diagnosed after a breast reduction and the PS who has done several breast surgeries over the years has not had anyone with this diagnosis alone. I found myself confused and talked to my GYN and he referred me to a breast surgeon. I went to my appt. and he basically looked at me and said "I bet you know all you could learn about LCIS" being a RN I had a clue. I looked at him and shook my head, and asked what now. He replied Kolette I know you know your options and i will let you go with your heart and gut feeling. I walked out of the office and tamoxcifen was offered starting at my next appt. July 7th. As i walked my way down the breast care center hall to go home I caught a glimpse of another hall that said breast cancer treatment wing. It hit me like a ton of bricks and thats when i decided what i was going to do for not me but my kids. Iam scheduled on July 28th for a PBM and feel so positive about my decision. I never had a doubt in my mind that this was not right for ME. I was not willing to take a chance and being 41 Im healthy and will recover from all of this and basically put it behind me. I don't want to take tomoxcifen for 5 years, I don't want all that follow up care and watch and waiting. I've been given a chance to do something about my LCIS and Im taking it and running. It is wonderful we have options and everyones options and decisions may not be the same. Thre is no right decision I just know you need to follow your heart and do what is best for you. Be strong and take everything into consideration take your time. Best of luck to you:)

Anonymous · July 2009

Thanks for sharing your story kdebartelo. Good luck tomorrow with your PBM, I hope everything goes well for you. There must be so much relief when you can be so positive with making a decision and moving forward with it and it sounds like you have done that.

For me, I am still playing the wait for results game. I am leaving in a few minutes on a 10 hour drive to go to a facility that does breast mris to see if there is anything else there right now.I will wait to see these results as well as the genetic testing before I can make any decisions.

Take care and will be thinking of you tomorrow.

Thanks Cathy

kdebartelo · July 2009

i would love to know where you live that it takes 10 hour drive to get a MRI. I live in the middle of milwaukee and chicago. I wish you the best of luck Im convinced everything will be fine. Go with what is best for yourself and never doubt yourself. Ill let you know how all goes. GOD BLESS!

LeeMcC · July 2009

Hi Ladies -- Met with surgeon today, who confirmed he needs to look at sentinel node (at least), and also more tissue must come out because DCIS was mixed extensively with LCIS all the way to the edges. Due to my small breast size, he said the only viable option is mastectomy. With the probability of LCIS in the other breast being moderate to high, I've opted for BM. The surgeon confirmed that as a smart option, given without it I'd have to have 6-month mammos and MRIs for the other side.

I'm meeting with PS this week ... and I have to look at my options, There isn't anyone local who does DIEP. I've called NOLA and it's too expensive. I'm guess going to start with looking into TEs and implants, and see what I think. Surgeon said I don't have to hurry, but that I should wait too long either.

Lee

leaf · July 2009

Thinking of you as you make these difficult decisions, Lee.

upcreek · July 2009

Thinking of you too Lee,

Patricia

CAZ · July 2009

kdebartelo and Lee,

I had PBM 6/08 for my LCIS and I'm very happy with my decision. I have a final touch up on my tattoos today, and then it's all behind me.

Best of luck for a smooth recovery. The mastectomy wasn't as bad as I had feared. The fills on the expanders were the worst part until I backed down on the amount per fill. Overall, it is very doable. Feel free to PM me, but I'm not on the board every day. There are lots of women to give you support and advice on the Surgery(before/during/after) board. I'll be thinking about y'all.

Carol(AZ)

Anonymous · July 2009

kdebartelo I hope everything went well with your surgery yesterday. Sending you my best thoughts!

Lee my heart goes out to you and I am also thinking of you in trying to make decisions on what to do. Will the surgeon do more surgery first to check sentinel node and try to get clear margins or do you have to decide whether or not to go right to PBM?

kdebartelo for you question about where do I live that I have to go 10 hours for MRI. I am in Thunder Bay and we do have a regional cancer centre but apparently not a breast mri. So I had it done yesterday in Timmins, Ontario which is an even smaller community than what I live in. It went pretty well and I begged them to tell me anything, but of course they wouldn't. I did see the oncologist referral and it did say "Urgent please report ASAP for possibly invasive malignancy and node involvement". It was scary to see this. They first had me on my back they said to check the nodes in my neck? and then moved onto my stomach and put the dye in. Unfortunately although they have a breast MRI, they don't have a radiologist, so a locum comes in on Saturdays to read the MRIs, so I guess I just have to wait some more!!!!!!

Take care

Cathy

LeeMcC · July 2009

formykids, becuz of the invasive my surgeon does need to look at sentinel node. and becuz of dcis all the way to multiple edges of what was excised, he needs to get clear margins. but I'm small-breasted and doing all this would take 1/2 if not 3/4 of my boob. So off it comes, and the other side is for prophylactic reasons (and to keep me from having 6-month mammos and mri and tamoxifen ... and worrying!).

I just can't decide between implants (which I can get locally) and DIEP (which I have to travel for). I think it's going to depend on which PS I like best and how each one convinces me his technique is the best.

Lee

Anonymous · August 2009

Hi

For those of you that have had mri's, can anyone tell me if they are that difficult to read and/or does the radiologist sometimes have to get second opinions or something?

The reason I ask is because it has been two weeks today since I had my mri and still have not received the results. Although I had it in a smaller city than my own and they have a lolcum radiologist who was supposed to be reading the mri the later that weekend. I called my oncologist all of last week and was told my file is on his desk and he would call. The receptionist didn't know if he had the results or not. Yesterday I called again and she told me they just received the results yesterday, so I expected he would call. He did not. Surely he knows I am going out of my mind to find out the results. I can't help but think there must be something there and perhaps they are having someone review it or something. If it was good news and nothing more there, you would think it could be just a quick phone call, I understand they are very busy, but this waiting is really getting to me.

Any insight on this would be greatly appreciated.

Thanks

Cathy

Anonymous · August 2009

Cathy-----I usually get my results from my breast MRIs in 4 or 5 days. One time, the radiologist wasn't busy and since I was having my mammo the same day (only that time, usually I have them on alternating 6 months), she sat me down and went over both of them together. I think it totally depends on how busy they are at any given time, but generally, they would hopefully let you know sooner if it was bad news. Since it has been 2 weeks already, that seems like it is good news. Praying you get good news soon!!!!!

anne

Anonymous · August 2009

Thanks for your response Anne. The oncologist finally called me yesterday with the results. He said that there is something showing on mri, and they have noted that invasive malignancy cannot be ruled out. He said that sometimes after surgery trauma can show up on an mri for up to 6 months, and possible this is what it is, although where he described the location of the finding is nowhere near where I had the excisional biopsy done. He said it is an area of concern and needs to be investigated. The problem is a mri guided biopsy needs to be performed, which he thought nowhere in Canada do they do this. Although I have googled it and found they do this in Montreal and that is the only place that they do. The other option is to have double mastectomy. I am getting so frustrated with this because each time I have a procedure, I think I will finally get the answers and yet, each step leaves things inconclusive and more investigation required. I think I need to go to a bigger centre where they have the technology and the specialist to deal with this complicated disease.

Anne, when you have had mri's done in the past have you had anything show up and what if anything did they do? More surgery? He said the area of concern is 1.5cm x 2.5cm. I don't actually have a copy of the report yet, but I think that is the measurement he gave. I asked if there were anything seen in the nodes, and he said they were clear. So I guess this is a good sign?

Again thanks for your help,

Cathy

Anonymous · August 2009

Cathy----I had some small "spots" show up on my first 2 breast MRIs that the radiologist deemed "probably benign" (BIRADS 3) and recommended 6 month f/u. I wasn't comfortable with that either time, so I had f/u mammo (clear) after 1st one, and f/u US (clear) after 2nd one. That went a long way to giving me more peace of mind. (and gyn told me that BIRADS 3 is 98% benign). It's too bad they did your MRI so soon after your excisional, as it may not have had time to fully heal and it might show up as "suspicious". I would ask for f/u US first, then if there is still a question as to the results, I would ask for another f/u MRI in a few months. MRIs are very good at picking up invasive bc (97 to 98% accurate according to some studies), but they are so sensitive, that they also pick up everything else too, most of which ends up benign.

anne

beacon800 · August 2009

Gamma imaging - just learned about it - apparently it can find lobular cancer better than other imaging technology. Anyone have this? I am very interested.

Mary

chris38 · August 2009

Hi cathy,

My name is Christine, i was diag back in jan 09 with LCIS muitfocal and adh. I am going to have a PBM in Dec of this year. I am waiting for my mom to retire so she can help me while i am out. I hear u are out for about 8 weeks. I just cant stand the waiting and watching approach. I have two young girls 6 and 8 and i want to be around for them. I have reseached the one step reconstruction with alloderm. No tissue expanders. if u would like to talk my number is 914-391-6764 please call so we can talk further.

Thanks, christine

capecodder · September 2009

dear CAZ and ladies I was dx'd with lics and family history on both sides .....CAZ your words are volumes I too can't sit and wait for the 4-6 month mammo's, I have decided to do the PBM this October........I go to sleep, since April, thinking of "IT" and wake up thinking of "IT"...my granmother had the BM and lived to 103, I'm going for the longevity factor............Did the MRI did the StereotaticBiopsy.Who invented that! Did the lumpectomy.Went to the oncologist listened to the percentages re tamoxifen and read and read and read ............and I have to say for me it is the only way this is going to get behind me.........I had the birth of my only grandchild this past month, I go on a 14 day 30 th anniversary cruise this month and when I get home it is all set up and to be done the per-op testing the 8th of Oct.and the surgery the 15th of Oct.....I feel releived,I have a wonderful surgeon who is there for any question none are silly to her......and for me this is the way......I respect all who have their plans and wish you all nothing but the best...........and any tips you PBM's can give me are greatly appreciated. I have lost 45 lbs since the first mammo that changed my life I am now running and lifting weights so the Dr. will see tissue and muscle in the operation....I am eating all the GREENS I can........broccoli is my friend! Thanks for all the great posts...........again I 'll take all the tips you have to give...........

upcreek · September 2009

Good luck ladies with your decisions. I may be right behind you.

Nancyld · September 2009

Capecodder - It seems your are doing all the right things. I had my DX last year in June - Went thru the usual - Biopsy, MRI , Lumpectomy. I could not play the waiting game either. Had PBM in Oct - Implants in Jan - Nipple reconstruction in May and nipple tatooing in July. I am finally done and do not regret it one minute. I also work out and eat broccoli. Get back to working out as soon as you can after surgery - It really helps. You won't be able to lift for a while but you can walk and do light stuff.

Best of luck - feel free to pm me if you want to ask my anything.

Anonymous · September 2009

Capecodder good luck to you as you look forward to having the surgery in October. I was just diagnosed in July with LCIS and am really still in limbo right now. It seems to do the "watch and wait" on some days just seems crazy and I think I will go the BPM route. Then there are other days when I think I don't know if I should do BPM. I don't have immediate relatives that have been diagnosed with breast cancer, so whether that would make this decision different, I don't know?

I can't help but notice though that the women on here who have gone on to have BPM, really felt like it was the right decision for them obviously prior to having the surgery, but more importantly after as well. Nancyld you are yet another person who has recently had the surgery, and as difficult as it was to make that decision, and undergo the whole procedure you also say you have no regrets. I know this is a very personal decision and everyone looks at it differently. So hard to know what to do?

Nancyld · September 2009

Formykids - Making this decision was very difficult and many tears were shed. I based my decision on many factors - At 54 I had quite smoking and started a healthy life - eating right and working out - I lost 50 pounds. I was DX at 56 and was fearful that I would get invasive breast cancer in my 60's or 70's when I wasn't as healthy and didn't have as good of health insurance.

My path reports also helped guide my decision - My LCIS was marked as extreme and my breasts are very dense with all the usual crap in them. They found widespread ALH and ADH in the path report from the masectomy (this was not seen in the biopsy or lumpetomy).

I also have a very supportive husband, family members and friends. My BS and PS were excellent and very caring people.

Take your time and make the right choice for you - feel free to pm me if you have questions.

Anonymous · September 2009

Well this medical roller coaster ride just does not seem to end. Last week I had gone to Toronto, which is about 800 miles away, to see if another biopsy was going to be required on the findings of a MRI I had done in July. My surgeon felt it was trauma from the lumpectomy done June 26, oncologist was concerned it was something else and needed to be investigated. So referred me to surgical oncologist in Toronto.

The surgical oncologist I met with in Toronto, felt that it was surgical trauma and not to be concerned. BUT it seems she is possibly questioning my diagnosis of LCIS and ALH. A few times she mentioned PLCIS, but really did not want to discuss much until she knows what she is dealing with. SO..... she has sent for my slides to be reread by her radiologists, she did have all of my pathology reports and I brought a CD of all the imaging I had already had done. They booked me to go back to Toronto again just days after I go home from the last trip, to have mammogram and breast MRI done again. So I did have that done yesterday. When I had mammogram, she ended up having to do magnified views, so I suspect she saw something. Now I just wait to hear from the doctor, and will likely have to go back again. I just hope it is soon.

Can anyone tell me if it is difficult to see the difference between classic LCIS and pleomorphic LCIS? Not sure why, but this doctor seems to be thinking this? For those that have been diagnosed with PLCIS, are there multiple things generally going on along with it? ie ALH, ADH, microcalcifications, dense breast or anything like that. My pathology report from lumpectomy had lots of things going on, along with the LCIS.

I finally have an appoint with the genetics counsellor tomorrow also, and hope that I will have the testing done, even though I don't have immediate family members with breast cancer.

Thanks Cathy

leaf · September 2009

There aren't many cases of PLCIS. This paper said that the PLCIS cases they found were detected by mammogram abnormalities. http://www.ncbi.nlm.nih.gov/pubmed/19701073 That does NOT mean the PLCIS showed up on mammograms; this could mean that there was an abnormal mammogram and that the PLCIS was an incidental finding.

This 2006 paper gives some idea about the difficulty in diagnosis between PLCIS, DCIS and classic LCIS. (Many cases were re-classified.) http://www.ncbi.nlm.nih.gov/pubmed/17375183 I think this would imply that PLCIS is often not seen on imaging, since these other entities (certainly classic LCIS and ALH are often not seen on imaging.)

I have certainly read that classic LCIS is often (not always) found not AT the 'lesion of concern' but adjacent to it. I have read several times that classical LCIS is usually an incidental finding at a biopsy, and that it is normally not seen on mammogram, ultrasound, or clinical exam. I know there are at least some cases of classical LCIS that did not show up on MRI. Since ILC is also known as ' the sneaky one' (as far as detection is concerned), I think its reasonable to say that PLCIS is probably not reliably seen on imaging.

I have classic LCIS, ALH, and ductal hyperplasia (not atypical ductal hyperplasia.) The ductal hyperplasia was found on a different biopsy than the LCIS and the ALH.

I certainly would like to climb into my doctor's brains to see what their line of reasoning is - what they are thinking is possible/probable. The uncertainty drives me bonkers.

Thinking of you as you go through this.

Just diagnosed LCIS and multifocal ALH

Comments

Categories