LCIS--close monitoring

Anonymous
Anonymous Member Posts: 1,376


I was diagnosed with LCIS 4 years ago when my mammo showed suspicious microcalcifications; had stereotactic core biopsy, wire localization lumpectomy, and have been taking tamoxifen even since.   I am very closely monitored by SBEs, CBEs, digital mammos, and now alternating every 6 months with MRIs.  I also have family history of bc (mom had ILC--good news is she is a survivor of 21 years), so at  an even higher risk for invasive bc in the future.  I had  "probably benign" findings on my first MRI last summer (7mm area on LB)--wasn't comfortable waiting the recommended 6 months, so had f/u mammos which were benign.  Then more benign mammos 6 months later. (MRI was reviewed by 2 different radiologists, which helped give me some peace of mind). Now I just had  another MRI 2 weeks ago, finally got results (oncolgist was on vacation!)--area on LB now measuring 6 mm, and now they see an area on the RB too between 2mm and 5mm.

Again report says "probably benign--recommend 6 month f/u". Onc also feels that it is "probably" benign--97%, but knows I'm not comfortable with the "watch and wait" routine, so is letting me go for bilateral US on Friday.  Thought I'd really have to push for them, but he readily offered it as an option. I'm really not looking for trouble, I don't want any unecessary invasive biopsies, I just want some peace of mind. If it turns out to be  something more serious, well, then I'll deal with  it ( and insist on biopsy). I'm usually OK living with high risk on a day to day basis; it's just nerve wracking at test time every 6 months!

thank-you so much to the moderators for giving those of us with LCIS our own catagory!!!! 

Anne 

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Comments

  • Peaches70
    Peaches70 Member Posts: 210
    edited September 2007

    Anne,

    I'm really feeling for you right now. Here's hoping your US goes well, but knowing that it will only be a temporary relief - until the next mammo/MRI. Close monitoring is good, but increased stress and anxiety is the price.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited September 2007

    I hope you US goes well too. It sure would rub me the wrong way to get the 'watch and wait' routine. I am so sorry you are going through this uncertainty. I hate the word 'Probably'. Glad you didn't get resistance for the us.





    And for both Annes for giving such wonderful support.



    Wishing you well as you go through the US today. Hope you can find out the results right away.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    US results were good---"probably benign--recommend 6 month f/u".  So I guess I'm "good to go for 6 months". (just wish it could be like my colonoscopy---5 years!!!!!)  As you said Peaches, it's a relief, but only a temporary one.  I guess that's the way it's going to be living with LCIS; the anxiety of constant vigilance or BPMs.  I'm just not ready for the surgical decision and I don't know when I will be ready.  For now, I'll just stay with the close monitoring and tamox.

  • leaf
    leaf Member Posts: 8,188
    edited September 2007

    Congrats awb!!!!!



    We all have our own decisions and paths to take on this journey. There is no one 'best' decision for everyone. We all are individuals. We have different feelings what our breasts mean to us, and how
    we handle, or don't handle the hormonals, and how we feel about screening.



    Surgery is irreversible. There should be no pressure for you to take one course of action or another.
    You have the insight to make the right decision for you, and that's all that matters.



    Go out and celebrate!

  • helene58211
    helene58211 Member Posts: 1
    edited October 2007

    HI

      i am new here! What is everyones thoughts on taking tamox for lcis.Please share! Thanks..I have lcis for about 1 1/2 years and have just been doing the close monitoring

  • jenniferv
    jenniferv Member Posts: 9
    edited October 2007

    I was dx with LCIS Dec of 2004 and have been through Tamox - then Femara and now Aromasin for 18 mos -  rotate mammos and MRI's every 6 mos and so far  all has been OK - very close monitoring by the Onc and my surgeon -

    Today I hear from the Onc that  at the 5 year mark which wil be Dec of 2009 the system discharges me -  My question - what then?  Am I still at high risk for BC - am I no longer at risk -  Does anyone  have any info or have you been at this 5 year milestone and been discharged and then what? 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    helene----when I was first diagnosed with LCIS 4 years ago (sept/03), my oncologist left the decision whether or not to take tamoxifen up to me and said he would support me either way.  My surgeon had given me 3 options: 1) close monitoring 2) tamox and close monitoring 3)bilateral prophalatic mastectomies  (these seem to be the standard 3 options given for LCIS without any invasive bc).

    I chose to do #2 after my initial lumpectomy  (All my docs (onc, pcp,gyn, bs) felt BPMs were too drastic in my situation) as I also have family history and wanted to do something proactive to try and prevent an invasive bc in my future.  Like Jennifer, I now have MRIs alternating every 6 months with digital mammos. They are presently "watching" 3 spots--see my first post---so while frequent monitoring gives me some added security, it also creates stress as well.  A friend told me she was very glad I was "doing something about my LCIS"---her docs never even offered her tamox and she had invasive bc within 4 years of her initial diagnosis of LCIS (it was both lobular and ductal and bilateral). That's the problem with LCIS--they don't know who will go on to have invasive bc (or when) and who won't.

    Jennifer--my oncologist originally said maybe arimidex after the full 5 years of tamox, then recently said "probably nothing and then I'll see you only once a year". My pcp said they probably will put me on Evista.  As far as I know, the risk for LCIS remains elevated and does not go down over time (as with DCIS or invasive bc's), so I plan on having that discussion with my onc--I would like continued monitoring.

    Anne 

  • lisaham43
    lisaham43 Member Posts: 18
    edited October 2007

    Hi All, I'm back after a couple mths of leave from the website, everyone here really helped me through the tough times and I just needed a break I guess.  I am so glad to see there is an LCIS site now.  After having IDC, 2 surgeries, and 7 wks radiation, my last labs showed LCIS as well, so I'm on the Tamox and doing good.  I go for my first follow up Mammo in a couple weeks and have been so nervous about them finding something in my other breast....anyone out there also have reoccurance ?  Sometimes I so wish I had gone ahead and had the mastecomy and been done with all this !!

  • leaf
    leaf Member Posts: 8,188
    edited November 2007

    I am not sure if there is a consensus opinion what to do about LCIS once you have had invasive BC, or if you get LCIS after invasive.



    I think most people think that if you have LCIS and nothing worse, that a 'recurrance' of LCIS (and nothing worse) isn't of much significance because LCIS is usually considered a risk factor for invasive BC. In some small, unknown percentage of cases, it may be a precursor. For LCIS and nothing worse, my understanding is that even if you only have one small area of LCIS that was completely excised, it puts both breasts at risk. However, to find that out somewhat conclusively, they would need to do bilateral mastectomies.



    However, one paper opined that LCIS found at the time of invasive breast cancer was not a contradiction to breast conserving therapy.

  • Kitwe
    Kitwe Member Posts: 64
    edited November 2007

    I was diagnosed with LCIS in July.  I have been on Tamoxifin.  The results of the mamo I had on Monday showed a thickening of the breast near the lumpectomy scar.  I'm scheduled for a MRI.  Anyone famaliar with this type of situation?

  • Kitwe
    Kitwe Member Posts: 64
    edited November 2007

    I have a question....if our LCIS doesn't show up on Mamos why are they monitored this way?  Is it to see if it turned into a "REAL" breast cancer?

    Did you do the tomoxifin for 5 years?

  • moogie
    moogie Member Posts: 499
    edited November 2007

    the nature of LCIS is partly unknown, and partly in debate. The party line is that it is a " risk factor". Some researchers feel it is a precursor to BC, but that is not a " standard of care" assessment at this time.

    Anytime a woman with LCIS starts to exhibit breast changes on imaging, they are going to want to investigate....partly because you are now known to have a risk factor, so the statistical odds of having a problem are somewhat elevated higher than the average Joe with  breasts that image normal. In my own case, they followed thickening with numerous tests because they were concerned to know if ILC was developing. It usually does not form a definite lump, and is harder to find on imaging. It develops like a spider web.

    Since most women with LCIS do not have additional issues, try to have these investigations done with  optimism. Of the many many women found to have LCIS ....relatively few have worse going on.

    Having the testing is traumatic, and necessary....but the odds are in your favor .And Tamoxifen may decrease cell activity in your breasts, and over time there may be fewer causes for alarm.

    Having been there I know how anxiety provoking this all is!!! I wish you a good weekend!

    Moogie

  • connie48
    connie48 Member Posts: 1
    edited November 2007

    Hi,

    I just found out I have LCIS and told to take raloxefine, with a mamo every year and exam every 6 months.  My mom and grandmother have had BC. Has anyone taken this drug.. I was told it's still being tested for BC. I am going to get a 2nd opinion from another onc.

    connie

  • Peaches70
    Peaches70 Member Posts: 210
    edited November 2007

    I'm on Evista (raloxifene) since May. It is supposed to have fewer side effects than Tamoxifen, and it was originally used for osteoporosis, so it covers that issue. It does have a slight risk of stroke and causes hot flashes, so be prepared.

    Anne

  • walkteach48
    walkteach48 Member Posts: 15
    edited November 2007

    Hi connie48 and Ladies,

    I have been monitoring the boards daily, but have not added any comments for awhile. I appreciate everyone's information.

    I am taking raloxifine. I started last April. I was diagnosed with LCIS (and nothing else) in September '06.  I have become part of a high risk program which includes alternating mammos with MRIs, physical exams 2X a year and raloxifene. I could not take tamoxifen due to vision issues.

    Until recently, I did not have any side effects. Lately, I have been having minor hot flashes at night. Hopefully, it won't get worse. I can live with this. 

     Lydia

    I

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Suze----LCIS very often is not detected by mammo, US or MRI ( it's usually found incidentally when they're in there  looking at something else--during biopsy or surgery); I was very lucky to have mine found on mammo--clustered microcalcifications. I've never had any more found by mammo, US, or MRI in the last 4 years.  Close monitoring for someone with LCIS is done with the hope that if anything invasive is ever found, it will be found early when it is most easily treated. 

  • leaf
    leaf Member Posts: 8,188
    edited November 2007

    Suze: I am on tamoxifen for LCIS too (started 7-06).



    This is the abstract for the STAR trial.

    Effects of tamoxifen vs raloxifene on the risk of developing invasive breast cancer and other disease outcomes: the NSABP Study of Tamoxifen and Raloxifene (STAR) P-2 trial.



    Vogel VG, Costantino JP, Wickerham DL, Cronin WM, Cecchini RS, Atkins JN, Bevers TB, Fehrenbacher L, Pajon ER Jr, Wade JL 3rd, Robidoux A, Margolese RG, James J, Lippman SM, Runowicz CD, Ganz PA, Reis SE, McCaskill-Stevens W, Ford LG, Jordan VC, Wolmark N; National Surgical Adjuvant Breast and Bowel Project (NSABP).

    Magee-Womens Hospital, University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, Pa 15213-3221, USA. vvogel@magee.edu

    CONTEXT: Tamoxifen is approved for the reduction of breast cancer risk, and raloxifene has demonstrated a reduced risk of breast cancer in trials of older women with osteoporosis. OBJECTIVE: To compare the relative effects and safety of raloxifene and tamoxifen on the risk of developing invasive breast cancer and other disease outcomes. DESIGN, SETTING, AND PATIENTS: The National Surgical Adjuvant Breast and Bowel Project Study of Tamoxifen and Raloxifene trial, a prospective, double-blind, randomized clinical trial conducted beginning July 1, 1999, in nearly 200 clinical centers throughout North America, with final analysis initiated after at least 327 incident invasive breast cancers were diagnosed. Patients were 19,747 postmenopausal women of mean age 58.5 years with increased 5-year breast cancer risk (mean risk, 4.03% [SD, 2.17%]). Data reported are based on a cutoff date of December 31, 2005. INTERVENTION: Oral tamoxifen (20 mg/d) or raloxifene (60 mg/d) over 5 years. MAIN OUTCOME MEASURES: Incidence of invasive breast cancer, uterine cancer, noninvasive breast cancer, bone fractures, thromboembolic events. RESULTS: There were 163 cases of invasive breast cancer in women assigned to tamoxifen and 168 in those assigned to raloxifene (incidence, 4.30 per 1000 vs 4.41 per 1000; risk ratio [RR], 1.02; 95% confidence interval [CI], 0.82-1.28). There were fewer cases of noninvasive breast cancer in the tamoxifen group (57 cases) than in the raloxifene group (80 cases) (incidence, 1.51 vs 2.11 per 1000; RR, 1.40; 95% CI, 0.98-2.00). There were 36 cases of uterine cancer with tamoxifen and 23 with raloxifene (RR, 0.62; 95% CI, 0.35-1.08). No differences were found for other invasive cancer sites, for ischemic heart disease events, or for stroke. Thromboembolic events occurred less often in the raloxifene group (RR, 0.70; 95% CI, 0.54-0.91). The number of osteoporotic fractures in the groups was similar. There were fewer cataracts (RR, 0.79; 95% CI, 0.68-0.92) and cataract surgeries (RR, 0.82; 95% CI, 0.68-0.99) in the women taking raloxifene. There was no difference in the total number of deaths (101 vs 96 for tamoxifen vs raloxifene) or in causes of death. CONCLUSIONS: Raloxifene is as effective as tamoxifen in reducing the risk of invasive breast cancer and has a lower risk of thromboembolic events and cataracts but a nonstatistically significant higher risk of noninvasive breast cancer. The risk of other cancers, fractures, ischemic heart disease, and stroke is similar for both drugs. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00003906.

    PMID: 16754727 [PubMed - indexed for MEDLINE]



    9% of the group had LCIS. 893 LCIS women took tamoxifen,and 896 LCIS women took raloxifene.

    They only studied tamoxifen for 5 years in this study.



    I think they are advocating 5 years of use for tamoxifen as they are extrapolating from women with breast cancer (ie DCIS or worse). If I remember right, tamoxifen in a group like this had no or little benefit, and/or increased risk past 5 years. The protective effect of tamoxifen lasted more than 5 years *in these women with DCIS or worse.*



    As far as I know, tamoxifen use beyond 5 years has not been studied in LCIS women. (One factor is that there are so few LCIS women.)



    From what I've read, the risk of breast cancer for LCIS women does NOT go down, as opposed to those who have had DCIS or worse.


    On the other hand, I'm sure the risk for bc for LCIS women is lower than the risk of bc for *some* other women who have had bc.





    This is the blurb about LCIS from the professional section on the NCI website.

    Introduction



    The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[1] In addition, three women developed contralateral breast tumors (two of the tumors were invasive).



    Treatment Option Overview

    Most women with LCIS can be managed without additional local therapy after biopsy. No evidence is available that re-excision to obtain clear margins is required. Tamoxifen has decreased the risk of developing breast cancer in women with LCIS and should be considered in the routine management of these women.[2] The NSABP P-1 trial of 13,388 high-risk women comparing tamoxifen to placebo demonstrated an overall 49% decrease in invasive breast cancer, with a mean follow-up of 47.7 months.[2] Risk was reduced by 56% in the subset of 826 women with a history of LCIS, and the average annual hazard rate for invasive cancer fell from 12.99 per 1,000 women to 5.69 per 1,000 women. In women older than 50 years, this benefit was accompanied by an annual incidence of 1 to 2 per 1,000 women of endometrial cancer and thrombotic events. (Refer to the PDQ summary on Breast Cancer Prevention for more information.) Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.



    Treatment Options for Patients with LCIS

    Observation after diagnostic biopsy.





    Tamoxifen to decrease the incidence of subsequent breast cancers.





    Ongoing breast cancer prevention trials.[3]





    Bilateral prophylactic total mastectomy, without axillary node dissection.



    ********





    My onc said by the time I finish my 5 year course of tamoxifen, there may be some studies that give some suggestion what to do next.



  • leaf
    leaf Member Posts: 8,188
    edited November 2007

    Well, I just came back from my biannual clinical exam, and I got the onc to order a mammo in March. This is a success story, because the rad recommended that I have my next mammos (bilateral) next Sept, saying "this would put me back on track." Well, a mammo (bilateral) in Sept would put my R breast back on track, but not my L, which would be going 18 months without a mammo. So I'm glad my onc agreed with me and not the rad.



    He also didn't receive a copy of the consult I had at the Major University last July. I told my onc they told me "No MRI because I have too much scar tissue." He said its controversial whether to screen with MRI, even for women with ILC. I think I would eventually feel better if they eventually did at least a baseline MRI on both breasts, even if they insist beforehand they won't biopsy anything they see.



    So I get to call my unhelpful Major University to see if they can send me a copy of their report, or if they won't do that, send a copy to my onc. He said sometimes they say things differently in their formal report than they do to the patient.





    I told him of their "10-20%" probable figure for my risk of bc. He said 1%/yr, and I agreed that's what I've seen. Well, I guess he's saying tamoxifen would cut this down. Yes, at least for the short term. They have ZIP info what tamoxifen will do long term in LCIS: whether it will continue to supress bc as it does for post-bc women, or whether it just delays things. So I think he was trying to reassure me. I don't completely agree with him, but at least he was listening.



    I trust my onc a lot more than I trust this Major University. I'm glad he heard and responded to my mammo screening complaint. As far as my personal risk of having bc, I do not trust anything that anyone says. I don't think it is knowable.

  • nash
    nash Member Posts: 2,600
    edited November 2007

    Leaf, I agree that a baseline MRI would be a good idea for you. I'm going to be having MRI's every six months along with mammos as screening. I have a lot of pleomorphic LCIS left in my breast after they removed the ILC, and am doing the MRI's in place of bilat mast. Have no idea if my insurance is going to balk at paying for endless MRI's, but I guess I'll find out.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007


    leaf----I'm glad to hear your oncologist agreed to send you for more  mammos in March (we will be on the same "track" of Sept/Mar imaging) and I would have to second the idea of a baseline MRI. As you might remember, it took me forever to get my oncologist on board with MRIs for LCIS (nearly 3 years)--maybe he just got tired of hearing me talk about it!!!  (what's the old saying--"the squeaky wheel gets the grease"?) But it does sort of open Pandora's box (his quote, not mine)---even though I know intellectually that my 3 spots they are "watching" are most likely benign, it still is always in the back of my mind that they could be wrong and they might not be.  I do want to trust in my doctors collective knowledge and expertise, but I still do worry. I'm trying very hard instead of "waiting for the other shoe to drop", to put on the shoe and dance! Someone told me that recently and I'm trying very hard to remember it and live life without so much worry about something that may never happen.

    On a side note, I've never had any trouble with insurance coverage for the MRIs, but that could be because of my mom's bc history  combined with my LCIS, and/or the fact that there are areas that they are watching.

    Anne 

  • Peaches70
    Peaches70 Member Posts: 210
    edited November 2007

    I was surprised when I saw my BS recently that she is requesting both MRI and mammo in February. I thought it would be alternating, or maybe mammo's every 6 months and yearly MRIs. So far, my insurance hasn't said anything about the screenings. In my experience, the screenings and the biopsies are worse than my anxiety over getting cancer, maybe because they are more immediate and have been very uncomfortable...okay, downright painful. I will definitely ask for something to help me with the pain before the next biopsy.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited November 2007

    Thank you so much for your support, nash, awb, and Peaches70.



    Another reason why I wanted yearly mammos in the winter or spring or summer: I normally go on vacation in the fall, and I don't want the monitoring to mess that up in case they need to do more screening or a biopsy. I haven't gone on a normal vacation since the year before my LCIS diagnosis (12-05) due to other health screening/issues. I know staying to do the screening/treatments was my choice, but I wouldn't be able to enjoy vacation if I'm worrying if I have something dreadful.



    While my onc said the 1%/yr was the most often quoted figure, he was also trying to support the 10-20% figure. I think the ACS paper is really awful with regard to LCIS. Well, my risk may be 10-20% if you include my tamoxifen use. I don't think this gets me to the risk of an average woman my age though, even with tamoxifen use, especially if you consider my increased risk of ILC. Since most ILC is ER or PR+, I don't think they've done even any short term studies that show whether tamoxifen reduces the incidence of ILC occurance in women initially diagnosed with LCIS alone. About half of the 7 cancers found in the Port study by non-MRI means was in a tamoxifen user. I know these numbers are not significant.

  • femme
    femme Member Posts: 262
    edited December 2007

    Since I have just been diagnosed with LCIS on Nov 13, 2007, I am new to all of this. I am going for the BRCA gene testing on Dec 20 since my mother had breast cancer and I have 2 grownup (wonderful) daughters who might be affected by the test. The test people told me that there will be 1 session when they will counsel me and make sure I understand the ramifications of the test. If I am then agreeable, they will draw blood and send it out for testing. The results will come back in 3 weeks. I will be spending this time in France. I plan to drink wine, have fun and hopefully use the denial techniques that my mother perfected so well in her lifetime. The difference is that I am not denying the risk of this crazy "non-cancer" cancer marker! If I have the BRCA gene I am quite sure that I will get a double mastectomy. I will know the results when I return



    .Since I know very little about this "close monitoring" RX what is the best way to do it? Should I see my gyn for a physical exam every 6 months, or my breast surgeon, or the oncologist that I got a consult with, or the mammogram people? What's this about an MRI and who and how does one get to put that on the schedule? I'm not too happy with this whole menu...I'd rather be choosing wine from a wine list!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2007

    femme---I have digital mammos alternating every 6 months with MRIs; then see my oncologist every 6 months on an alternate  schedule, so that I'm basically being seen every 3 months by somebody, so if anything is ever found it's bound to be found early. (I also see my gyn once a year as well).  It took me forever to get my oncologist on board with MRIs (almost 3 years), but now that the new recommendations for high risk have come out, I think it will be easier for women with LCIS to get screened with MRI.  (I've seen reports that estimate risk from LCIS anywhere from 25% to 60%; my oncologist put me about 37%--I also have family history). (the new recs qualify "high risk" as anything above 20 to 25%). It may unfortunately have more to do with your particular doctor and your insurance whether or not they will cover an MRI.

  • leaf
    leaf Member Posts: 8,188
    edited December 2007

    Hi there femme! I found genetic counseling by a board certified genetics counselor very helpful. I don't have a bad family history, so I opted not to get tested. Glad to hear you have excellent coping strategies in the meantime before you get your results back!!



    There is no 'best way' to handle LCIS. There is only what is best for YOU. Everything about it seems to be at least somewhat controversial, including its name, whether it should be considered cancer, what the risks are, how it should be handled.



    Here is the URL to the most recent ACS paper about monitoring high risk women with MRI. http://caonline.amcancersoc.org/cgi/content/full/57/2/75



    If you do indeed prove to be BRCA positive, that would put you in a category they would recommend MRIs. But if you have LCIS alone, then this paper does not recommend for or against MRI screening.



    In the Port study (at Sloan Kettering) that looked at MRI screening in LCIS and Atypical Hyperplasia women, they do yearly mammograms, and biannual clinical exams. It seems that is the usual course, and what I am getting. (I also take tamoxifen.)



    At my 'major university' consult, they told me I had too much scar tissue (after my excision and biopsies) to do MRI even for a baseline.



    In the Port study they had 2 out of the 11 LCIS patients who were diagnosed with breast cancer had a family history (first degree relative with breast cancer.) This is approximately the incidence of genetically linked breast cancer among all women with breast cancer. (About 10-15% of all breast cancers are genetically linked.) Although these numbers are not statistically significant, it sounds like the women with a bad family history are not significantly overrepresented in the LCIS women who got breast cancer.



    Awb is right. A lot seems to depend on what your individual doctor feels and recommends. It probably also depends a lot on what your insurance will cover. My breast surgeon said she does not want to do any more surgery on me. (I have LCIS and ALH and a weak family history.)

  • femme
    femme Member Posts: 262
    edited December 2007

    Thank you both, Awb and Leaf. I have decided to see a therapist for help to put this all together so I can enjoy my full rich life and my time in France. I do not want this to interfere with me being able to live my life with joy. I also do not want to get stuck on seeing myself only as someone with LCIS. Both of you seem like very intelligent woman. Is it OK to ask what you do? You don't have to answer my question if you feel mt question is inappropriate. I work in the visual arts.

  • leaf
    leaf Member Posts: 8,188
    edited December 2007

    Hi there femme.



    I did the same (started to see a therapist) after I got diagnosed (after the excision, so I knew I didn't have active breast cancer.) I have been getting (or suspecting) one diagnosis or another every 3-6 months since I had an endometrial polyp removed 9-05. (I was diagnosed with LCIS on core biopsy 12-05 and by excision 1-06.) I just started antidepressants last month, and started biofeedback this month.



    I will PM you my profession.

  • mamaotis
    mamaotis Member Posts: 14
    edited December 2007

    Hi all!  It's so nice to read the posts from everyone; to reaffirm that you're not the only one feeling like you do!

    Our 'sisters' in this forum, have given us so much valuable info/insight/support...and in the end, as others have said--it's whatever we are comfortable with for ourselves!  There definitely are no right or wrong answers--just what is right for us as individuals.

    It's been a month since I've had my LCIS/ALH diagnosis; I've always tried to keep a perspective on things~and am trying really hard now!  But I know I am in a better position than many....as I know there are always folks dealing with so much worse. 

    I did just get my genetic test results~no mutations!  I did it more to be able to have the info for my recently married son, but it was still good news.  My breast oncologist had said that her only recommendation if I had tested positive for either BRCA gene would have been PBM....so now the decision is back to me :o)

    I've done so much reading on this subject, my head is full! I really do think that PBM will end up being the best decision for me............I've watched my boss's mom go through chemo/surgery/radiation at age 84. My mom died from cancer at age 45.   As a previously posted comment mentioned; being able to 'plan' this...at an earlier age/potentially not having to do chemo/radiation.....all sound like better 'options'.

    At any rate...again; good luck to all of us--and our decisions!  Thanks to all who have PM me....have a great holiday season!

  • RoseDew1951
    RoseDew1951 Member Posts: 10
    edited January 2008

    Hello Everyone...This is my first visit to this site as I was diagnosed with LCIS in December 07. Digesting everything has been a bit overwhelming but today I met with an onc to discuss tamoxifen and raloxifene as well as PBM. I'm 56, otherwise very healthy and active. My goal is to avoid invasive breast cancer, radiation and chemo at some later date so I'm opting for raloxifene short term with probable PBM in the fall. Lots of happy occasions coming this year so I want to enjoy every minute of them before dealing with this situation head on. I feel that even if I take the drugs for 5 years (which I don't want to do), I will still have LCIS. Later this month I meet with a PS to discuss reconstruction options. Anyone on this site who has chosen my plan of treatment for LCIS or who has words of wisdom? Now that I'm over the shock of it all, I feel quite peaceful and content with my decisions. I feel that it is important for each of us to deal with LCIS in whatever way makes us comfortable, whatever that decision may be.

  • ophelia
    ophelia Member Posts: 337
    edited January 2008

    Hi RoswDew1951,

    Sorry to hear of your dx.  I was dx w/ LCIS in July of 2007.  I had already  been on tamox. for 2 1/2 yrs.  I will be having PBM in 4 days with I-GAP reconstruction.  Not an easy decision, but the right one for me. 

    Good luck in your decision making.  Do a little research on the different options for reconstr. don't go just by what one ps has to say. I met with 3  before I decided which one was right for me.

    Take care... 

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