For those who did NOT do PBX

MelissaDallas
MelissaDallas Member Posts: 7,268
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

What has your follow-up been?  Are you taking AI's?  What kind of follow-up do the AI's require, as in how frequently do you have MO/lab appointments?  How have your side-effects been?  How many biopsies have you had since your original diagnosis?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Melissa----- I was diagnosed with LCIS  almost 9 years ago and my risk is further elevated by family history of bc (mom had ILC). I had a lumpectomy, I took tamoxifen for 5 years and now I take evista  (AIs are not used for LCIS) ;  I do high risk surveilance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months (one by my gyn and one by my onc). For the first 5 years, I saw my oncologist every 6 months (but now only yearly) and they did bloodwork every time (to check liver function while on tamox, check tumor markers, etc). I have tolerated both meds very well with very minimal SEs. I am very happy to say that I haven't had to have any further biopsies or lumpectomies in all these years. (I was gonna mention a yearly transvaginal US to monitor both the uterine lining and the ovaries, but I see that you have had surgery already, so ovaries and uterus not a problem for you---I had a TAH/BSO, not by choice--ovarian mass and rupture)

    anne 

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  • JanetM
    JanetM Member Posts: 336
    edited May 2012

    I was diagnosed with LCIS, ALH and ADH almost a year ago.  So far I have been doing the every 6 month follow up.  I have been on this 6 month follow up for almost 4 years now ever since my first mammo at age 53 when they found a fibroadenoma that a had a FNB for at that time.  I had a hysterectomy with ovaries and tubes removed in August 2011 for some other issues that I was having.  I have been using Effexor to deal with the hot flashes since I can't do HRT.  Don't know how long I can play the every 6 month game, always feel like I am waiting for the other shoe to drop.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2012
    I was diagnosed with classic LCIS + ALH 12-05. Weak family history (BC: no first degree relatives, and all the 2nd degree relatives were postmenopausal: 2 maternal and 1 paternal.Since diagnosis, also had maternally  1 cousin pre-menopausal and 1 cousin post-menopausal.) One year later I had 2 core biopsies on the same breast - all benign.  I started out with mammos/breast ultrasounds every 3 months (these were followups for the biopsies), but past the 1.5 year mark have been getting yearly mammos and twice-a-year clinical exams (alternating onc and GP.) I took tamoxifen x 5 years (starting 7-06, ending last fall due to a 3 month hiatus for unrelated reasons.)  I had endometrial biopsies / D+Cs every 18 months or so due to endometrial polys while on tamoxifen, but I also had endometrial polyps+D+Cs before tamoxifen.  I had a dexa scan which was fine last year (so no bisphosphonates).  I had some warm flashes from tamoxifen, and endometrial polyps (all benign) while on tamoxifen.
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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    Thank you all for responding.  I guess my horror is the idea that every year or so they'll keep thinking they see something else and I'll be in for endless anxiety and biopsies.  Also going to have to really weigh the risks on Evista and discuss it with the MO, because I did have a pulmonary embolism and ascites when I was sick last year.  The problem with going through the program I'm in is that everything is agonizingly slow.  My mammogram was early in November.  It has taken six months to get all the other stuff in - diagnostic mammo, ultrasound, stereotactic, meet with surgeon, MRI, meet with surgeon, excisional biopsy, meet for results.  Now still several weeks (29th) for my MO appointment.  I just cringe at  the idea of the anxiety and this eating up six months of my life every year or two.

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  • annievan
    annievan Member Posts: 92
    edited May 2012

    MelissaDallas-

    Thanks for posing this question - - good angle to see how those who didn't choose the PBMX route are doing and how the risk has weighed (or not) on them.  I was diagnosed in in Dec. with LCIS (surrounded by lots of ALH and a bit of ADH), and at the BS's strong suggestion am scheduled for a PBMX in June.

    I'm curious. . . sounds like many of you were sent to a MO -  I was told LCIS patients didn't really go see a MO as a matter of course.  Could it be that I wasn't sent to one, as I was ruling out the Tamoxifen on my own?  I've now asked to be referred to one, just to dot one last i before I have the surgery, and the BS's office sounds like that's an unusual request.  They said they'd be glad to refer me if I really felt the need to go. . . but that the MO would kinda wonder why I was there. . . really?  Just seemed a little funny, since it's bad enough to warrant surgery, but not BC enough to see a MO. . .

     Any thoughts anyone? Thanks for your input- 

    Hey - didn't mean to hi-jack your post, MelissaD - - - wishing you all the best as you figure out this LCIS thing.  I'm so sorry the initial appts. and all the diagnostic stuff have taken so long for you - - I was going crazy last Nov./Dec. doing all those steps. . . can't imagine how you've stood it stretching out that long.  Wishing you some peace now - - -  

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  • leaf
    leaf Member Posts: 8,188
    edited May 2012

    If you are interested in tamoxifen, then I think different places do things differently.

    After my surgical excisional for LCIS came back 'nothing worse than LCIS', my BS said she 'did not want to do any further surgery on me'.  Because I wanted to do something more than watchful waiting, and I have other complex medical issues, I knew a MO would know a lot more about my situation than a BS.  (I'm a pharmacist, and surgeons in general have a reputation for not knowing meds except those connected in some way with surgery.  At my 2nd opinion NCI-certified institution in 2007, they have the BS prescribe tamoxifen. At that NCI-certified institution in 2007, the BS said they do not offer PBXs for LCIS but would not 'bar the door against surgery'; they offer watchful waiting or watchful waiting + tamoxifen.  I assume they offer PMXs for women with LCIS *plus* at risk for BRCA (i.e. a significant family history).  My local BS does not do antihormonals, and referred me to an MO. (I hope to never see my local BS again, because she said 'no surgery after excision' to me even before learning about my family history; in fact, this was the first sentence she spoke to me at my first appointment pre-excision.  Plus, her lack of concern about a traumatic wire insertion immediately pre-surgical excision. Anyway, in general, MOs know a lot more about internal medicine than BSes.)

    My former MO (former because he retired) said in his 40-some years as an oncologist, he had only seen a handful of LCIS patients. 

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    I think if you ruled out Tamoxifen and are not eligible for chemo than that would have been the reason you would be sent to the MO.  All the clinics/functions are separate at the large university teaching hospital where my care is provided.  Surgeon just does surgery, period.  The MO will coordinate drugs/follow-up.  I go to a SEPARATE Gynecology/Oncology clinic for the ovarian tumor follow-up care.  Breast Center/General Oncology is separate from Gyn/Onc.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    annievan----if you/ve already ruled out taking preventative meds (tamoxifen or evista) and you've already made your decision for PBMs, you probably really don't need to see an oncologist in the mix; the surgeon will do your follow-ups after the PBMs.

    anne 

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