LCIS

tam1953 · January 2007

I was scheduled for a bil mast on 1/22, but postponed due to 2nd thoughts. The Susan Love book scared me for a time and now I am reevaluating. These are my risk factors as I see them. Will people please comment.

I have some family hx -- but not in category of high risk. Maternal grandmother dx at 70. Mother found ductal in situ after proph mast at age 48. Maternal aunt recently dx with ductal in situ at age 62. BRCA testing to be done, but I need to make a treatment decision before that is back. Doubtful that it will come back postitive.

I have 2 lesions in right breast. Is that considered multi focal? Each appears to be 8mm on mRI. Both upper outer quad.

Lesion #1 shows LCIS plus ductal ivnvasive (tubular) ER+ PR+ Her2 borderline -- FISH test pending.

Lesion #2 shows LCIS plus infliltrating ductal -- not enough tissue in bx to conduct all the testing.

I am 53 -- pre-menopausal--large, dense breasts -- hard to diagnos on mammo, ultra sound. MRI picked up 2nd lesion.

IIncluding this last workup, I have had 8 biopsies in 5 years.

I have an inherited clotting disorder and I cannot take tamoxifen.

Someone told me the LCIS makes me higher risk than DCIS would -- more likely to affect both breasts.

Please send me your thoughts. Tam

Sandra1957 · January 2007

LCIS makes you a higher risk for ILC which is very sneaky. It hides and is difficult to find. It can also be multifocal. I had already made up my mind to have a bilateral after my 4mm ILC dx. when someone gave me Dr. Love's book to read. It only confused me and frankly, scared the crap out of me. I found her book very anti mastectomy, but I stuck with my initial gut instinct and went through with the bilat. never again second-guessing my decision. It is truly a decision only you can make for yourself. By the way, my healthy right prophylactic mast. had LCIS and ALH. Surgeon said that I'd likely have had invasive in there in a few years. Since I had the bilateral and clean SNB it was not recommended that I have chemo, rads, or Tamox. as the risks outweighed the benefits. Listen to your gut and don't look back.

Best to you,

lini

moogie · January 2007

You've got a lot of factors in this decision. The one that sticks out the most in my mind is whether your breasts image well, or not. If not, it's important to assess for yourself how comfortable you are with the imaging limitations and the probability of early detection. Can you be placed on Arimidex if Tamoxifen is not an option?? A chemical preventative giving some help to address the process already going on in your breasts would be reassuring perhaps.

It is such a personal decision. I chose mastectomy after 13 years of surgeries...so I didn't " jump" into the decision. And to be honest , I am still surprised it all came to it. But I can tell you, it is in no way as bad as imagined.....the hardest part is mental prior to the surgery ....and a good plastics person can take the edge off it for you. It is very difficult in this time before you find the therapy that will give you a sense of security. I wish you the best, and feel free to PM me .
Moogie

LizM · January 2007

My reason for choosing bi-lateral with immediate reconstruction. Had multi-focal IDC/ILC/DCIS/ALH in left breast so a mastectomy was in order. Imaging did not work well on me. All mammo's had been clear and only found the tumor because I pushed for an ultrasound and then pushed the radiologist to checked a thickened area really well that 2 breast surgeons, one clinical breast specialist, and 3 gyn docs had all said was fibrosystic dense breast tissue, NOT!!. Also, had previously had a stereocore and surgical biopsy on same left breast year before which showed ALH. I do not trust imaging and knew that I would worry myself sick about the other breast so a chose a bi-lateral. Turns out the noncancer breast also had ALH and would have probably cooked up the same thing in a few years. My decision was right for me. I have never regretted it. No more mammos for me ever again.

jetj · January 2007

I had LCIS and ALH in both breasts with IDC and DCIS in the left. The LCIS was discovered 8 years before the invasive ductal and DCIS.

You would be justified in having the bilateral mast. However I knew when I made my decision that it was the right decision for me and I never doubted it. If you don't feel that way, you can alway have your breasts removed in the future. It isn't a decision to rush into, although I made my decision on the spot and never looked back.

I wish you the best in whatever you decide.
Janette

tam1953 · February 2007

I've decided on a lumpectomy for now. Too many other issues involved. I think it is very likely that I will get bc again, so am going to start interviewing plastic surgeons as soon as I recover from lumpectomy. "Next time" I get bc I will be more prepared. Will have MRIs instead of mammos to detect sooner.

NarberthMom · February 2007

When I found a lump (confirmed by mammogram, ultrasound, and FNA), I decided to have a lumpectomy and SNB scheduled for 1/9/07. Because my breasts are dense, we also did an MRI on both and found something small on the other breast the week before the lumpectomy. It looked like nothing, soI went ahead with the lumpectomy -- as I really wanted to know the staging. I'm node negative (good), but ER/PR negative (bad). My oncologist insisted that I get an MRI-guided biopsy before starting chemo on 2/13. I just got the results showing a fibroadenoma (likely what was seen on the MRI), as well as a microscopic dot of LCIS.
To complicate matters, I'm waiting to hear BRCA1/2 testing this week.

Am I second guessing whether or not I should have done a bilateral mastectomy? yes ... On the other hand, I can always do it at a later date.

I think I'll schedule consultations with my surgeon and her favorite plastic surgeon to check out my options, so that I, too, can be more prepared in the future!

Peaches70 · February 2007

Well, I had my excisional biopsy Friday (following a previous stereotactic core several weeks ago). The first biopsy found LCIS, along with other "stuff". Now, thanks to a Friday pm surgery and a holiday weekend, I'm just trying to stay calm and centered. Am I too unconcerned? I did not expect the LCIS dx, even though I had ALH last year in the other breast. Now I am more educated about LCIS. I've read just about everything I can find about it, so I know about the controversy, I know what the traditional treatment was, what is more common now and what other options I might have. What I don't know is what to do. When I read some of the posts, it sounds like I should be more concerned. Then I read sites that make LCIS sound so insignificant. I don't want to keep having biopsies every year and end up with scarred, deformed breasts. But I don't know if going the prophylactic road is right. How do I know when that is the best decision?
Anne

Anonymous · February 2007

Peaches---I was diagnosed with LCIS almost 3 and a half years ago. Fortunately it was only in one area, so I was able to have a lumpectomy and I've been on tamoxifen ever since. So far, I've been doing very well with no need of further biopsies. LCIS is very significant. The difficult thing with LCIS is that they don't know who will go on to get an invasive bc and who won't. My family history (mom had ILC) in combination with my LCIS puts me at high risk, so for now I'm OK with very close monitoring (alternating mammos and MRIs every 6 months), breast exams and taking tamox. I figure that if anything else is ever detected, it will be found early because of my being vigilant. Everyone is different--you have to decide for youself what level of risk you can live with comfortably. If I ever develope any invasive bc, I will have the bilateral mastectomies. Feel free to PM me if you'd like.

Anonymous · February 2007

Hi there. My surgeon wanted to remove both breasts due to density, ADH, DCIS and invasive (I have tubular) ER/PR+++ and HER2NEU-. I have maternal cousin who died of BC and OVCA. I chose lumpectomy ONLY because I have co-morbid conditions and was too weak for the double mast. If I were you and I think your family hx is strong, not weak, I would get 2 or 3rd opinion and then do what you think is best. If I was well enough to have done the bilat. mast, it would have been done already. DONE! Your young and taking any chances w/the LCIS... which could end up ILC.. Dont know hun. You can always tell your doc you need a couple more days for thinking time..

Many blessing and warm hugs..

MichelleW50 · April 2007

I had a mast of LB for DCIS and LCIS Sept. 2006 and I have not had one regret. If I do have a regret it is because I didn't have the other breast done also. Is it common to obsess about the other breast if you only had one mast.? breast.

lisaham43 · April 2007

Hi all, I just had two surgeries (3/13 and 3/23) to remove first IDC then second for DCIS. The 2nd path report came back showing LCIS, but my doc has said with radiation (starting on Monday) and hormonal therapy with monitoring I should be "fine", (my nodes came back clean thank God).....after reading all the above, I wanted some of your feedback as I am so new to this and really just starting my research/knowledge. How concerned should I be with the new dx of LCIS ? Thanks for your input.....

Anonymous · April 2007

Lisa----your diagnosis of IDC (invasive bc) basically "trumps" your diagnosis of DCIS or LCIS (non-invasive bc) as it is the most serious of the three. The treatment for the IDC and the DCIS (surgical excision, radiation, followed by hormonal therapy and close monitoring) is already more than what is recommended for a diagnosis of LCIS (no rads needed). The issue is now both breasts are at increased risk, as LCIS is most often bilateral. I was diagnosed with LCIS 3.5 years ago. Had lumpectomy, taking tamoxifen ever since, am closely monitored with mammos alternating with MRIs every 6 months now. PM me if I can help with any other questions.

lisaham43 · April 2007

Thank you for responding, I guess since the LCIS wasn't dx until the 2nd path report, it made me uneasy. I start my radiaiton on Wed, glad to be getting it done. Did/do you have any side effects from the tamoxifin ? I've heard/read a lot of women have had a tough time with it ?? Thanks for your help.

Anonymous · April 2007

Lisa--I've had pretty mild SE's from tamox--mainly hot flashes, insomnia, achiness--all annoying certainly, but manageable. I would recommend a yearly transvaginal ultrasound to monitor the uterine lining and the ovaries.

Anonymous · May 2007

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ADK · May 2007

Changing subject back

Anonymous · June 2007

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Ontario · June 2007

Like ADK said...

LCIS

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