LCIS + excision

After 2 needle biops-one from 8 different areas, my LCIS was only dicovered with the excision.  Like you, I'm glad I had mine- the ol' needle in the haystack comes to mind.  The articles were very interesting, but I would still personally be concerned that the needle missed something.

AMEN SISTER!!

Moogie

HI Everyone.

 I insisted on excision just to be on the safe side.  My surgeon and also the Dr. who read my Mammo and US were almost positive my results were scar tissue.  To my surprise I found out during my post op it was LCIS.  The mammogram, US, or MRI  picked up the lump that was present.  So to be on the safe side it took me one visit to the oncologist to decide I was going to have a PBM with reconstruction.  I am 6wks post op and I feel great.  The reports showed no invasive cancer and I also had a biopsy done on the skin approximately 21/2 wks after the BM to check to see if there were cells there.  Thank the Lord!!!!  It was clear. 

 Even though this is probably my 3rd post I feel so close to everyone here.  The information has been so useful and informative. 

 I pray for all of us daily more than once a day.  God bless us all and I will continue to keep us all in my daily prayers.

 Much Love to you all

Hi Mykidsmom

 The reconstruction  was immediate with expanders. I didn't have enough abdominal fat to cover both breasts and I didn't want to have a long recovery  I stayed in the hospital for 2 days.  I went in for surgery on a July 16, a Wednesday morning and was out by Friday afternoon.  I refused pain meds but they insist on your taking them.  They had me on a pump which the dr made them remove because it was making me crazy.  LOL.   I felt great in a few days but the only problem was I couldn't use my arms because of the drains.  I hated  those drains but I know they are necessary.  Those came out in 5 days.  My PS and his assistant keep a very close eye on their patients. I would get 2xdaily calls and all the patients have their cell phone numbers in case of questions or problems  About 3 wks after that  I then had to go through another surgery because the PS wanted to make sure the skin was clean of any LCIS.  I was ok with that because he was double checking.   That came back fine so now I go in for expanding.  The expanders don't bother me at all.  The can be uncomfortable at times because when you get filled they are exactly that full.  Sort of feels like muscle soreness when you workout too hard. 

I could have gone back to work in a month or so but I work in a gym as a group fitness instructor and  I am the supervisor of the child care area in the gym also.  My PS doesn't want me lifting anything heavy so my supervisor told me to take as long as I needed  to get better and my job is waiting for me.  I go in and do light duty such as interviews and making sure things are running smoothly. 

My surgeon looked at me in shock when i said "take em I dont need them...I breast feed my 3 children and if my husband needs to be breast fed he will just have to find another route.  LOL. 

My oncologist gave me all the options.  She was  very clear on every detail.  I left there drained.  I couldn't function mentally or physically.  My son (26 yr old) cried days.  He would call me and say mom I don't know what I will do without you.  I don't want to loose you mom.    My girls (22, 18) did too but they have  all been right there with me for appointments and support.  My husband has been a great support to me too.  He was having a hard time with this also but he always kept a positive attitude which is the best medicine for most of us. My mom is 74 and she wants to be at all my appointments and is very curious about the reconstrution.  She asks to see it all the time.  It's not very pretty right now but my PS said I will be pleased when it's done.  So I just go with the flow and roll with the punches and I continue to get up fighting with a great attitude. 

 Jean, no one can tell you which decision to make but I will tell you this.  I do not regret my decision at all.  I pray the reconstruction goes well and I know the Lord will be with me and you too.  We all just have to have faith in him.  Get tons of rest before your appointment with your oncologist so you will be able to think clearly.  Write down all of the questions and remember to pray for guidance.  The Lord will not put more on you than you can bare.  I found that out.  I feel we can all help eachother and also help  those out there who do not go for mammograms.  I talk to any and everyone about my condition.  I have encouraged so many to stop putting off mammograms for fear.  Fear can blind us to so many things that are so clear. 

 Please keep me posted.  I want to hear from you.  Have faith girlfriend.  It will all be ok.-

Take care my friend

Cassandra

That's awesome news!!!! I didn't have any hardening where the stitches were, but a few of my  stitches didn't dissolve and kept poking out, which delayed the healing.  The BS had to remove them.  I remember having to keep it covered with gauze for quite a while, so the edge of the bra wouldn't irritate it. I go for my next mammo on the 18th--wish me luck! Congrats again on the fantastic news!

Anne

Thank you Anne and leaf for your good wishes. Good luck Anne on your next mammo, keep us posted. I made a decision to go every six months for mammo and clinical exam of my breasts. I declined to take tamoxifin for now. I read so much about its lethal side effects, it scared me to death. I'd rather wait a couple of years until I could use Evista or aromatose inhibitors. Do you know anything about these drugs?

I also had ADH in the "good breast" following PBM.  I'm relieved to avoid the constant follow-up.  I hope everyone finds comfort in their very personal decisions.

I had a prophylactic bilateral mastectomy in order to avoid Tamoxifen and constant follow-up.  While my chance of BC is not zero, it is vastly reduced.  I wasn't willing to live with the worry.  It's a huge decision.  Make lists, ask questions, and follow your heart.

Carol(AZ)

Misty3- Why? Won't you go for other options? I'd like to know as much as possible about other people's experiences. I had a stereotactics biobsy on 7/3 and was diagnosed with LCIS, ALH and ADH. Then on 9/2 I had an excision w/needle localization and everything was fine for now.

lay02----I have  about 4 more weeks to go to finish up my 5 years on tamoxifen.  Overall, I have tolerated it very well. While tamox does have some serious SEs (blood clots and endometrial cancer), the incidence of those events is extremely low, reportedly less than 1%.  Unfortunately, all medications have SEs. I decided I would rather put up with the very low risk of SEs from the tamox rather than my very high risk of invasive bc from my  LCIS and family history. But as someone else said, it is a very personal decision. My mom took tamox, had virtually no SEs, and is now a survivor of ILC of over 21 years withour a recurrence, so for us it has worked well so far. After a short break of a few months, I will probably be going on Evista for further prevention.

Anne

lay02--hormonal changes maybe? I have LCIS, but no ''''weird" sensations that I can remember, although sometimes a little achy. The thing about LCIS is that it is most often multicentric, multifocal and bilateral, so even though all my scans are clear, I know that I could have it anywhere in either breast. But having it in many areas as opposed to just one area, doesn't change the risk level.

Anne

Leaf - Your comment was timely for me. I have only had LCIS identified in one location after my last bx. I was actually thinking of calling the oncologist tomorrow, but your note explained it. "even if you have one spot of it in one breast (unlikely but possible), it puts BOTH breasts at risk. Its a weird condition." Thanks for knowing so much about this condition! - Jean

I was told that the chances of getting invasive cancer at my age 56 at the time I was diagnosed, was low risk for my lifetime. 

 I was told that my options were to have PBM, which she said she feels is to drastic, to take Evista since I have been though menopause by a hysterectomy or to do a check up every 6 months, MRI and Mammogram, I chose the checks every 6 months. 

 I tried the Evista ( about 6 months) but the side affects I had, swelling in hands and feet and legs, restless legs, cramps in legs and hands, hot flashes and it cause a flareup of my Meniners disease ( middle ear problem).  I was being hopeful that I would not have any SE but about 3 weeks of taking it I notice the changes.  I saw my breast surgeon and she agreed I should not take it and it was really my decision but, my internist was really upset that I discontinued it. 

 I have so many thoughts about this LCIS and fears still.

  I had an excision after having bloody discharge and had to force them to do that, just didn't feel right about doing nothing but wait and see, so I talked to my breast cancer surgeon and she agreed that I should have excision and good thing I did...they were thinking Papalomia and it was but, they also found he LCIS and with out the excision they would have missed it.

  I was also told that it was not cancer but a marker and that MRI, Ultra sounds don't really pick LCIS up...so, I ask why have them and was told to pick up any lumps that were not felt or seem on mammogram and knowing I have LCIS they need to watch more carefully and more often.

 I just want to know why mastectomy are a choice when we really don't have cancer?  I know it is  cancer cells but they are not invasive and may never be.  I was also told that since it was found in my one breast that it was also in my other breast.

I have had no bleeding since my excision in my left breast and you can not even tell where I had the surgery.  I was sore for sometime after wards and it did get hard and sunk in but that has all disappeared, took about 6 months for me to heal and my mammograms and check ups have all be good so far.

Also on my first mammogram after my surgery they had to do a repeat twice, wanted to make sure what they were looking at was scar tissue, which it was but was scary to go through...thought I would mention so others would know.

I am in no way saying that any of these things that happen to me or the way I was told are what will happen to you....one thing though we all have this and we can help each other by coming on hear and just talking and we learn and know we are not alone, that takes some of the fear away.

 "I know it is  cancer cells but they are not invasive and may never be.  I was also told that since it was found in my one breast that it was also in my other breast."

 If they found cancer cells on your face, they would remove them.  If they found cancer cells on your cervix, they would remove them, etc. etc. etc.  I know that LCIS may never turn into anything more, but when you hear that it has for someone, that is scary. I am 44 years old with a STRONG family history and a diagnosis of LCIS.  I do not want to be in my 50's, 60's or beyond and be facing chemo.   I think I have made up my mind that if anything else shows up, even "just LCIS", I will strongly consider PBM.  If it's tissue/cells that could turn against me, I want to remove my risk while I am young and healthy.  My biggest problem is that I DO NOT WANT CANCER TO MAKE MY DECISIONS FOR ME!!!!!  I can't stand this hanging over my head.

sorry.....bad day. 

I read on mayo clinic website that LCIS should be monitored closely and checked every 6 months and it is unlikely to become invasive in the first 5 years of diagnosis.