LCIS confusion.

shabby6485

Hi!

Diagnosed with LCIS last week. This after 4 years filled with benign biopsies.  Birads 4 calcifications lead to stereotactic which showed flat epithilial atypia. That lead to excisional (two areas) which showed LCIS.

In the process of making some serious decisions as I am sure are most of you.  

My concern is how do they know that it is only LCIS after the excisional.  I heard LCIS and ILC don't show up on mammo.  Confused.  So, if I opt for a mastectomy what are the chances they find cancer? If I don't do the mastectomy, how do they monitor something that may not show up on a mammogram?

Sick of thinking of this all day.  I want to make a decision and move on.  Bad day for me.... 

Anonymous

LCIS and ILC have a reputation for  being "sneaky" and not always showing up on imaging studies (such as MRI, US, or mammo), but sometimes they do. My LCIS was seen on mammo (microcalcifications that were clustered-----they may have originally suspected DCIS, I don't know, it was a BIRADS 4, but then was reclassified to a 5 after the stereotactic core biopsy.)  I do alternating mammos with MRIs every 6 months, so hopefully, what one test misses another will catch early. Personally, I trust the MRIs more and  feel like if anything is there, the MRI will be the one to find it. (but that's just me). 

anne 

Crescent5

Shabby, I would not be able to take 4 years of biopsies. After one year, I had PBM, and I'm very glad I did. I don't know what the percentage is of women who get dx'd with invasive after a PBM, but I am one of them. Does it suck to think I was free & clear only to get sucked in? Hell yeah! But the alternative is much, much worse. It likely would have been missed on mammo this april and might have been picked up on my mri in fall. I'm grateful it was found when it was still very small.

shabby6485

Crescent5, Sorry to hear that.  However, I guess your right....much better than finding a bigger cancer down the line.

Do you have to do chemo now?  What's next for you?

Did you have a reconstruction done? How was the recovery from surgery.

Thanks for all your help. 

leaf

ILC usually grows fairly slowly.  Breast cancer growth rates vary, but the usual figure you see is that most breast cancers have been in the breast for some 4-10 years before they can be detected by ANY means (including mammogram, ultrasound, MRI, thermogram, or palpation.)    Roughly 20% of women who find LCIS (and nothing worse) on core biopsy get 'upgraded' to something worse (i.e. DCIS or invasive) when they are excised. 

If you get diagnosed with invasive breast cancer 2 years after an LCIS (and nothing else) diagnosis, then it is likely that ILC was sitting there, undetected, for 4-10 years.  They just happened to pick up the LCIS first. Since they think that only a small number of LCIS spots actually morph into invasive, probably  their LCIS did NOT morph into invasive.

I'm very glad they found your ILC early.  Its awful for those women who are initially diagnosed with early stage stuff, then as the months progress, they find they actually have something worse.  We all want to know what we are up against.

Crescent5

Shabby, I did not have to have chemo. Nodes were clear, no LVI & a pretty low oncotype score. I'm suppose to start tamoxifen, but can't pull the trigger yet.

Surgery was major but much, much easier than anticipated. I was suppose to go direct to implants, but due to a complication during surgery, PS had to use TEs. That was quite disappointing, but I think in the long run, I will have a much better result. I'll get my implants in about 4 weeks, so it's all good.

They don't look bad. The TEs don't exactly look natural, but the implants should. The scars are fading nicely, and it's only been 8 weeks. I'm shocked by that. I think I would be very happy right now were I not dealing with the dx. There's absolutely no way in hell I'd put myself through mammos, mris and potential biopsies for the rest of my life when this surgery was available. It was no walk in the park, but it wasn't the traumatic thing I feared it would be. I was up snooping around the halls of the hospital hours after surgery. I did laundry in less than 2 weeks, and I've been using light weights in my workouts as of 7 weeks out.

I truly wish I could be like the other LCIS girls who had this sugery & could walk away from BC forever. It must be an amazing feeling. Shabby, if you go that route, I truly hope you get to feel that.

Leaf, I had an oncologist tell me my tumors were growing for only 1-2 years, but I really think he was FOS. I trust your information more.

leaf

Different breast cancers grow at different rates.  Probably the same breast cancer grows at different rates throughout its 'life'.  So the '4-10' years is an average.  Your doctor probably is correct for YOUR breast cancer. 

Because cancers can grow at different rates thoughout their 'lifetime', its hard to measure growth rate.  In this paper,

Tumor growth varied considerably between subjects, with 5% of tumors taking less than 1.2 months to grow from 10 mm to 20 mm in diameter, and another 5% taking more than 6.3 years. The mean time a tumor needed to grow from 10 mm to 20 mm in diameter was estimated as 1.7 years, increasing with age. http://breast-cancer-research.com/content/10/3/R41

lago

Initially I was just doing an MX. I t thought about doing a BMX but my surgeon, although would support what ever I wanted to do, said there really wasn't a need to remove healthy tissue. He wanted to wait till I did the MRI. (Did have a mammo/US on both breasts before biopsy)

My good breast showed 4 suspicious areas… one that my BS was concerned about. He said I would need biopsies every year to monitor and then recommended the BMX. I didn't even bother with a biopsy because it would have delayed surgery. Did the BMX. Well that suspicious spot that only showed up on the MRI was a small amount of LCIS. I'm glad I had the breast removed because the risk of developing something invasive (long term) once they find LCIS is much higher anywhere in the breast (or other breast if you still have it)* Granted if I were 80 I wouldn't be as willing to remove the breast.

*Source linky 

BTW I was told my cancer had been there for only 4 years. Being HER2+/grade 3 it was a really fast grower.

beacon800

crescent5, I am so glad to hear that you are healing very well and your strength is coming back nicely.  Glad also about your low oncotype score.