LCIS...frustrating

kimber1

Hello, I am new to this forum and so glad it is here! I'll give the 'quick and dirty' of my story so far... I went in for my routine mammogram (a little over due since I was a few weeks shy of my 41st birthday). No family hx of BC. Called back for diagnostic mammogram and ultrasound due to cluster calcifications on the left breast near chest wall. Ultrasound showed distortion in architecture at the spot in question. Core needle biopsy then done a week later. Path report came back as LCIS and Flat Epithelial Atypia.  So now I am to have an excisional biopsy...I meet with my surgeon this week and hope to get this overwith soon!  In all of my research, I find LCIS so frustrating a diagnosis. 

I am overwhelmed by all of this. Never saw it coming. Feel blessed to have great friends, but alone in this terrible WAIT to be sure it is nothing more than LCIS. I understand that to most, it is not even considered CANCER. Because of this, I know some people think I am over-reacting with my worry, but to me there is still something there that requires very close monitoring and until i get the path report after the excisional biopsy, I think I may go nuts!

I guess just mostly needing to vent and get some support from those in the boat with me...thanks! 

AnneWisc

Hello Kimber1.  Give yourself time to go through all these emotions.  It's a process.

Never mind what some in your circle think about your preoccupation.  Get support from where you can.  You will almost certainly find this online community helps you in every way, from information to emotional support.

Best wishes, and let us know how it's going. 

123penelope

Hi kimber1 Sorry to hear about your diagnosis I was also diagnosed with LCIS stage 0 Breast Cancer. I am taking Aromasin.   Whatever your diagnosis is, it's serious to you no matter what other people may think.  kimber1 I don't think you are over-reacting at all and vent all you want. It is very frustrating.

kimber1

123penelope...So is Aromasin a Tomoxifen type drug? I guess I wait until after path results to see whats next...if just basic LCIS, I wonder if just frequent mammogram follow up or medication too??...

JanetM

Hi kimber1

I am 3 weeks out from a lumpectomy which showed LCIS and Atypical Lobular Hyperplasia.  I discussed tamoxifen with my surgeon but have chosen watch and wait for now.  The side effects seem to be more than I want to bargain for at this point.  If watching and waiting shows that I need more surgery then I may just decide that it is time for BMX.

leaf

You will probably have some choices as far as your treatment: there is controversy about just about every aspect of LCIS, including the name.

Some women opt for watchful waiting with monitoring - the NCCN recommends yearly mammos and biannual clincal exams.  However, many women who choose that option also get screening breast MRIs.  (I have not been offered that choice.)

Some women choose watchful waiting with monitoring plus antihormonals.  There are several anti-hormonals, but Tamoxifen is the only anti-hormonal choice for pre-menopausal women.

Some women choose prophylactic bilateral mastectomies - I think many of the women here who have chosen this option either have pleomorphic LCIS (which may be more aggressive than classic LCIS) or a significant family history of breast/ovarian cancer.  (I have classic LCIS and a weak family history, and was not offered this choice.)

After your excision, if your diagnosis is not upgraded, there is no huge rush to make your decision.  

As 123penelope says, your feelings are valid no matter what anyone thinks.  The uncertainty in this diagnosis stinks.  I am 5 years out from my diagnosis, and am still anxious about it. 

There is no 'right' or 'wrong' way to feel.  There is no time limit on how long you should feel a certain way.  Lots of people with breast cancer get stupid comments from their friends or relatives.  Some people go bonkers when a person has problems with a sexualized part of their body.  They wouldn't do this if someone had, say, cancer of a bone. 

I've made plenty of stupid comments myself.  I'm not proud of that, of course, but I try to work on it.

msippiqueen

LCIS is serious enough to warrant close surveillance once the condition is detected. It is a mystery and lots is at stake and important considerations are at hand with that diagnosis. So no, you're not overreaching.



The very good news is you have time to consult with the pros and your loved ones and sit back and consider what options available best fit you as a woman at your stage of life. It really is deeply personal.



Sending you my best wishes.

AMP614

Kimber I can completely understand your worry. I was told I have Atypical Ductal Hyperplasia and now am awaiting results on an excision biopsy, which likely will come back as ADH, but am completely overwhelmed. Sounds like we are the same age, as I had my first routine mammogram in May and my 41st birthday is Tuesday so I was just shy of 41 also. Same story, called back for diagnostic and they saw a small cluster of calcifications... So hear I wait, and like you, I have great friends a wonderful family and a great fiance. I am driving them all nuts and they keep saying "it's nothing to worry about"... Okay but until I get the results telling me it's B9 I have a hard time believing them!!

123penelope

kimber1 I Aromasin is for post menapausal women. Yes take your time in your decision, it is the right one for you, everyone is different.

kimber1

Thank you so much to everyone for your support...it helps knowing I am not alone.

AMP614...wow our stories are similar. I actually work at an outpatient surgery center (where my excisional biopsy will be done)....everyday I watch the upcoming daily schedules filling. I hope I can get squeezed in soon. What is so nice is that I can pick my entire surgical team...from anesthesia to nurses to techs, etc.  I know they will watch over me.  I hope that your results come back as nothing more than previously diagnosed. 

Anonymous

Kimber--I was diagnosed with LCIS almost 8 years ago and I also have family history of ILC (mom).  I took tamoxifen for 5 years, now take evista, and continue with high risk surviellance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. Close monitoring and meds are for not everyone, but I'm fine with it. That's the thing--you have to find what you will feel comfortable with over time; there's is no rush to make a decision with LCIS since it is non-invasive; so don't let anyone rush you. While those of us with LCIS are certainly thankful we don't have to endure chemo or radiation like those with invasive bc, we do have our own set of special concerns and challenges being in a high risk situation. So, no, you are NOT overreacting at all. Feel free to PM me if you'd like.

Anne

KellyMaryland

Hi Kimber.  So sorry you find yourself in this situation.  There is so little consensus on LCIS.  I agree- so frustrating and I think every single one of us can relate to the obsession that comes along with researcing this condition.  It's not so common but this is a great place for support.  So vent away....we'll be here!

Kelly

123penelope

Can anyone vent here? well here goes LCIS is not the only thing that is frustrating.  My Mom and Sister have supported me all the way through. everybody else forget it, a phone calll or card just to say I'm thinking about you would have been nice ,It's hard to get the negative people out of this when they should care about you.  I'm having a hard time dealing with this myself.   The experiences I have had dealing with the "medical community" is terrible,  this is my health and I should be able to have the right doctor to see in my care, who will listen to me and understand what I am saying, they don't even agree in my diagnosis.  So I am just trying to figure this out for myself, I will continue taking my medication and have my mammograms.  I just had to finally let out all of my frustrations and this seemed like the place to do it. I wish I had the family and friends and medical team that a lot of you do. Thanks for listening to me.

beacon800

So much like my case. I had mammo, they saw new calcs, did stereotactic bx and found LCIS with focal pleomorphic LCIS along with flat epithelial atypia. left breast, posterior third. Before we did excisional bx, we did an MRI, which showed a lot of enhancement, making me very nervous. I was 47 at that point, with cystic breasts and the MRI did light up. Anyhow, they never did find any invasive cancer after so, so many tests, but I had a BMX as my family history is poor and there were too many abnormalities for me to be comfortable. I am very happy with this outcome and have no trouble from it. My alternative was close monitoring and taking tamoxifen. My LCIS was 90% er/pr+. If I had only classical LCIS and no family history I would have gone that route. Keep us posted and here is all my wish for a good outcome on your biopsy!

kimber1

Had appointment with surgeon today. I am scheduled for surgery in the morning. Looks like there is a possibility that I may have to have TWO wires put in prior....a "bracketing technique"  around two areas of calcifications that need to come out. So thankful that I can get this done quickly. Hopefully I can sleep tonight!!

leaf

Best wishes, Kimber!

KellyMaryland

Kimber- I'll be thinking of you tomorrow. Glad you were able to get the show on the road!

Kelly

123penelope

Kimber1 the best  too you. I also had the wires put in.  I was diagnosed in March with LCIS and this is still so frustrating to me.  The doctor's can't even agree. So for me it's going by what I know and how I feel. Take my Aromasin (6-9-2011) and have the mammogram's. I just go back and forth with this diagnosis, trying to figure it out (which I know I never will) because no one else can.  Just so  FRUSTRATING.

kimber1

Its just after 2pm wednesday and I am home. My surgery was cancelled. I passed out during wire localization at the breast center....then just didn't recover from that real well. After several puke bags (with not a whole lot but bile in them since I had been NPO for surgery), the room still spinning, BP dropping, and me unable to even open my eyes without getting sicker....I was transported to the hospital ER (acroos the street) by ambulance. 2 bags of IVF, Zofran, then Phenergan and now I am finally home.      What a nightmare.

This, of course, means that I will have to have it done later. I am scared to death. God, or SOMEBODY, needs to grant me the strength and the bravery to reschedule and get thru it.

Going to take a nap. I just had to get on here and update real quick.    Overwhelmed......

leaf

Oh my, Kimber - I'm so very sorry you had such a nightmare during the wire insertion.    Holding out my hand to you!!  Hope you are in bed recovering.  You are not alone!    I'm so very, very sorry!

KellyMaryland

Yikes Kimber! I'm so sorry.  Sending you strength and courage for the next go round but gentle hugs for now.

Kelly

kimber1

Sooo the surgeon's scheduler called me within about an hour of being home from the ER. Surgery is rescheduled for next wednesday. Surgeon ordered Valium and Zofran for me to take prior to wire localization. Man, I hope it works. Trying to keep calm.

kira1234

My what an ordeal. I so hope the meds will keep you calm. I know the Dr. gave me some Valium to take that morning before the procedure which I will be forever greatful for.

leaf

I am so glad they will be giving something.  No one should have to go through what you went through.  It makes me so angry when women have a hard time going through wire insertion, because I had a rough time (though no where as bad as you - I did NOT faint, nor was I taken to the ER, like you were.)  For me, I vowed if I ever have to have another, I will have some sort of non-verbal communication, like a bell or something, that I can ring if I'm in trouble.  I'll tell them about this before the procedure starts.

No one should have to go through what you did.  I'm so sorry it was you.

JanetM

I had wire localization 3 weeks ago before me lumectomy and it was very painful and the lidocaine didn't really help.  I had no meds before it and I already told my surgeon that if we need to go down this road again that I really don't think I could go through another wire localization.  I have a pretty high pain tolerance and it was almost more than I could tolerate.  I must have turned pretty pale at one point because the tech and nurse that were with me kept telling my to just keep breathing slowly.  I keep thinking that there has to be a better way.  I am still sore where the wires were put in.

kimber1

Leaf...the bell sounds good. When I felt myself going out, I couldn't even talk so just kinda lifted my hand and waved it around...thank goodness they were really paying attention.

Janet...hmmmm they must have seen that in me, cuz they told me to breathe when that second needle went in and I felt all of that pain.

Kira...oh how I hope and pray that the valium helps!!!  

kimber1

by the way...the radiologist decided she wanted to place between 2 and 4 wires to 'bracket' the area.....wow. (we had gotten 2 needles in by the time i passed out and were getting ready to shoot film, then leave wires on those 2 spots).

beacon800

Wow, sorry it went like that

I know about this procedure, had 4 wires placed, 3 one one side, one on the other.  Delightful. The first 3 were done via MRI guidance, then we went upstairs to place #4  by mammo.  It took a long time.  Then, finally, on to the OR for the biopsy.  It was really bizarre and I went into sort of an internal trance.  Surely the worst day of all the procedures I had.

But I have to say, it did not hurt, more like just a very traumatic and unpleasant thing, turning me into a voodoo doll.  Therefore, I think they did not give you near enough lidocaine.  You need more of that and definitely the valium is going to help you a lot.

There is no need for extreme pain on this procedure, so make a fuss and make them give you what you need.  It will work much better next time, I am sure.  ((((Hugs))))) to you.

stage1

Kimber and JaneM, I cried reading your ordeal with the wire localization appointment, because I thought I was being dramatic when I told my sister it was barbaric!  I, too passed out, I actually asked for the smelling salts, breathed in as much as I could, but they had to undo me from the machine and lay me down.  They knew and I knew I was not getting through this sitting up.  The took another hour and a half to reposition the machine sideways so they could do the procedure with me laying down.  It hurt as the lidocane wore off, as it took so long.  I am appalled at the medical staff.  The radiologist tech said "I don't know why we don't do them all this way" to the doctor.  Well, no brainer!!!!

JanetM

Not sure that doing it laying down would have made it hurt any less but I guess no one would have to worry about anyone falling.....

kimber1

Just wanted to let you know that I made it thru wire localization and sugery today! The valium helped. Two wires were placed....YOW...i know some people don't have pain with that procedure, but to me, wow...it hurt.  I was THRILLED to get thru it, then onto the surgery center. Back in OR about an hour and a half. Everyone at the breast center and surgery center was amazing.

I am not a person that likes to take medicine at all, but I am very thankful to have pain meds this evening. Just took another dose and now off to bed (again).

My surgeon hopes to have path report by Friday evening.