Introducing--Me and my LCIS experience

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jjp
jjp Member Posts: 7
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I just wanted to introduce myself on this site to get involved in the dialog.  This is the first time, I have participated in any online forum for anything--although I am on the computer all day.  I am usually too busy for that. I had an excisional biopsy for a large # of non-suspicious calcifications in August, which found LCIS. The reason I had an excision straight off was because I am so small breasted that they could not do a needle procedure.  About 10 years before that I had a biopsy which found atypical hyperplasia. The AH risks were not really explained to me in great detail, and I didn't worry too much but have alwasy gotten regular mammos etc and even self referred for a screening MRI.  This time, in part, because the dr seemed to be encouraging me to go on Tamox, I took this much more seriously, researched much on the Internet, learned a lot and totally freaked out.  My life stopped for several weeks.  I could not eat.  I learned everything about every protective drug, about the newest mastectomy techniques--everything.  I am a planner and wanted to understand all my options going forward. I have a marketing/writing business that works for medical equipment cos and do a lot of work in cancer and breast cancer arenas--so I did know a lot but also had a lot to learn.  Apparently, the LCIS must have been small because it was discovered when removed during the biopsy with clean margins.I am now in a high risk program at a large university hospital (columbia) and know my breast surgeon from business dealings.  He is considered very good and is truly a compassionate, wonderful person on the human level. i plan to go on linical trials for vitamin D (being tested for decreasing breast density) for the next year while I visit varous drs--oncs, obgyn (for their take on Tamox), surgeon to find out about skin-sparing PMB (for way in the future) and do develop an overall plan.  Being in touch with the people on this board is part of that plan.  I am now much less afraid of the diagnosis (I actually went on antidepressants, which is not something I really do or in line with my self image, but I needed help.  They worked)  I have a fairly good understanding of the "sicence" and clinical aspects of LCIS, but some of the boards confused and scared me. It seemed a lot of people were having PBM for this condition--which didn't make a lot of sense, unless i did not understand the context of their decisions.  Maybe they had had multiple biopsies, large areas of LVIS, problems getting clean margins or even cancer along with the LCIS.  FINALLY QUESTIONS:  Would a normal person in my situation even consider a PBM?  Do most LCIS sufferers take Tamox (scares me more than the surgery, i think)?  Do most people watch and wait and go on with their lives?  A major issue for me is that i have small, dense breasts with extensive calcifications that make me very hard to image thru a mammo.

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  • covertanjou
    covertanjou Member Posts: 569
    edited December 2009

    Hello jjp,

    Welcome to our club, but I wish you didn't have to be here.

    I have LCIS/ADH/ALH.  After talking to my breast surgeon, oncologist, family doctor and much souI-searching, I  decided on Tamox, mammos every six months, and seeing my breast surgeon every six months.  It was really difficult to decide to take the medication, but I figure that my decision to take Tamox is more proactive than the wait and see approach.

    As for PBMs, I am sure some women who have chosen this route will post soon with their stories.  I can understand why some women take this route.  It is extremely difficult to get biopsy after biopsy.

    Please PM me if you want.

    This is a great place to be to get support.

    Take care, 

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  • jjp
    jjp Member Posts: 7
    edited December 2009

    Thank you for your reply. I will make my decision about tamox over the next year.  Of course, there are other drugs with less side effects that are also less effective than Tamox.  As noted, my first  biopsy was 10 years ago and I only had it because I pushed it to that level because of the family history.  Then, things seemed stable for 10 years.  If I now have ongoing biopsies, that certainly would be a factor in choosing surgery at a later date. Has the Tamox been ok for you?

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  • covertanjou
    covertanjou Member Posts: 569
    edited December 2009

    The tamox has been okay.  I have not had any hot flashes.  The worst for me is dizziness and nausea.  My breast surgeon said the dizziness and nausea is not  from Tamox, but other women on this board, and my pharmacist, told me that is a SE of Tamox.  Even those SEs are getting better (I have been on Tamox since Oct 31), so I figure my body is getting used to it. 

    You do have time to decide what you want to do.  My advice is talk to your doctor(s), do your research, and make the decision that is right for you.

    Take care,

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    I was diagnosed with LCIS 6 years ago from suspicious microcalcifications on mammo; confirmed by wide excisional lumpectomy. I took tamoxifen for 5 years and tolerated it quite well with minimal SEs, mainly hot flashes. I continue with high risk surveillance of alternating digital mammos and MRIs every 6 months, breast exams on the opposite 6 months (by onc and gyn), and now I take Evista for further preventative care.  I asked my oncologist last week if I truly was doing everything I could at this point to decrease my risk of invasive bc. His response was that if I was "awake at night worrying, losing sleep over it, or if it was affecting my quality of life" that I could have my breasts removed. But I'm not, and it doesn't, so I'm fine with doing close monitoring and meds for now. If I were to have any more serious issues in the future, such as the need for another biopsy or lumpectomy, I would probably reconsider PBMs. Please feel free to pm me with questions if you'd like.

    anne

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  • typhoon55
    typhoon55 Member Posts: 184
    edited December 2009

    I was diagnosed with DCIS when 37 years old-lumpectomy with rads (left breast).

    8 years later ADH right breast-tamox for 5 years

    9 years later LCIS right breast and ALH now in left breast.  LCIS means you are at risk for developing cancer in either breast.  Since I already had DCIS, had the tamox, had dense breasts, BS suggested BMX. as I was "a ticking time bomb".  I didn't want the 6 month checks, did that after the DCIS.  So had the BMX and glad the worry is over.  BS also thought I would be BRAC pos but was not.   

    I did all the research also and I felt comfortable with my decision which is the most important, whatever you feel you need to do.

    Janet

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  • leaf
    leaf Member Posts: 8,188
    edited December 2009

    I have LCIS, ALH, sclerosing adenosis, ductal hyperplasia (not atypical), and a weak family history (all bc in my family was postmenopausal.)  I chose tamoxifen, and have been on this since mid-2006 (with a 3 month break due to unrelated issues.)  I have had  sporatic mild warm flashes (maybe a dozen a year the first year), but since I was perimenopausal, they may have happened anyway.  I have had 2 endometrial polyp removals, but I also had one before I started tamoxifen.  I am now postmenopausal. 

    I have had 2 breast biopsies a year after my excision, after 6 months of tamoxifen, in 2007.  They were benign. I haven't had any breast issues since then. My breast surgeon said 'she didn't want to do any further surgery on me.'  I do have other unusual medical conditions, which may affect which way I want to go in the future (I have not ruled out PMs.)

    Of course, it is important to consider possible adverse reactions when deciding whether or not to take a drug.  But, as has been implied above, it is a rare drug when 100% of the people who take that drug have a particular side effect.  I had no nausa/vomiting/dizziness. Some people have many side effects from tamoxifen (or aromatase inhibitors if you are postmenopausal), and some have zero side effects.  We are all individuals.

    As others have said, do your research and choose what is best for you.

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  • 2mygirls
    2mygirls Member Posts: 7
    edited February 2010

    Originally diagnosed with LCIS in June '09 at the age of 45 with two small children and a husband. It was discovered through a routine mammo and follow-up biopsy.

    Everyone's treatment choice is personal . I chose wide area excision (sloane). Well, after 2 wide area excisions they couldn't get clean margins. Seems the deeper they dug, the more they found. After the 2nd, which still had dirty margins, they found a more agressive invasive form of stage 1 cancer, and plemorfic cells (meaning cells which were changing in to cancer) and suggested a unilateral mastectomy. Although I was prepared to lose the breast,  I had to go for a second opinion. I felt fine!!!  They had to be making a mistake!

    I have had to learned so much in such a short period of time.  Not only did I find this forum and the wonderful support and education network it provides, I learned more about this awful disease, my family, my friends and myself than any one person should need to know in one lifetime.  The climb has made me stronger and taught me to think about, and take care of myself more often.

     The long and the short of it, I chose a bilateral mastectomy with immediate DIEP flap reconstruction.  17 hrs of surgery and 8 weeks of recovery, I am finally starting to feel a bit more like my old self. 

    All along the way every doctor I met told me "this is so A typical", "you never should have gotten this far", "this is not the norm".  Well if there is one thing I've learned during this climb - there is no norm.  Each case has a variable or some crazy twist.  I was told the MRI's and other tests failed me in the end because, after removal and path, the right breat was riddled with cancer! I am happy I made the choice to be agressive in my approach. Whether or not you see it as fortunate or cruddy - the only form of post op treatment I require is tamoxifen for 5 years.  No more mammos, no more MRIs.  I didn't want to have to go through al this again in 10 - 15 years. 

    Before I was able to take the Tamoxifen, I had to get a biopsy of my uterus.  That showed a thickening of the lining, so that needed to be biopsied as well. I am happy to report no problems there. I also was told to change my anti anxiety meds as they could counter act the tamox.

     Looking forward to stage 2 of the DIEP and a long healthy life.  Wishing you strength and blessings.  Christine

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    Christine---sorry to hear that they found invasive bc, but so happy for you that no chemo or rads are needed, only tamoxifen.  How are you doing with the tamox? Just be sure to get a transvaginal US yearly to monitor both the uterine lining and the ovaries too. Glad to hear you're on the mend.

    Anne

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  • SchoolBoardLady
    SchoolBoardLady Member Posts: 14
    edited February 2010

    Typhoon, I am 53 and in 9/2009 diagnosed with DHP and LCIS -had partical mastectomy type biopsy and began Roloxifene in December--lasted 7 weeks before the hot flashes and "twilight sleep" became unbearable.  I plan to talk to my BS this week and my ocologist who prescribed the Raloxifen in December.  If there were only hot flashes, I would continue with Raloxifene as I  understand the statistics are quite good on prevention.

    Can I ask you a personal question.  Do you have children? Your age at firs child? and did you breast feed them? for how long? 

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  • typhoon55
    typhoon55 Member Posts: 184
    edited February 2010

    I'm now 54 going to be 55 in a few weeks.

    I had miscariage at age 26, live birth at age 28 and another live birth at 30.  Breast fed first child only 1 month and breast fed second child for 5 months.  No smoking, rare alcohol ( maybe a few drinks a month only).  But here is the interesting factor for me, brother died or rare scarcoma (more of a children's type) in his 40's and father died or leukemia, grandmother of colon cancer.  I believe environment played a role in this.  (So far my sister is cancer free).

    Janet

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