Newly diagnosed LCIS and lookin' for love (wait, wrong forum...)

Boobymcferrin, you sound like you got up to date pretty quickly on this whole topic and your sense of things is consistent with what all the rest of us have found. Did you find the Univ of Pittsburgh paper from June of this year? They are one of the only institutions actively researching LCIS. They postulate (as I recall) 4 possible ideas of where to study in order to be able to determine what triggers LCIS to become something more invasive but as my husband commented, "the paper reads like a lot of really smart people who really don't have any answers". It's nothing more definitive than an expression of ideas as to where future research might want to concentrate. Your comments about the Halls and IBIS risk models interest me because my BS has repeatedly told me that there really is no model that effectively calculates risk for LCIS and they also don't know if LCIS + dense tissue + multiple biopsies has a synergistic impact on your risk % or what. I may go look and check out those models to see what I can make of it. The lack of consensus on this condition makes it virtually impossible to assess if your choices are resulting in over or under treatment, This is very unnerving.

Hi Boobymcferrin - As the other ladies have said, welcome to the LCIS club!

I was diagnosed last fall with LCIS after a biopsy for microcalcifications. Lumpectomy found no IBC (phew) so I've opted for the extra screening (alternating mammo and MRI every six months) and I've been taking Tamoxifen since Jan with no side effects. I was worried about it but decided I could stop if i had trouble. None so far!

There is great info on these boards but if I can help, let me know!

I've just been doing the monitoring for four years. My genetics doc said risk was around 25-30%, not nearly as high as the calculators

I should have also said that my BS calculated my risk with LCIS and I too have a lifetime risk of 67%. That really surprised me because everything I've read puts LCIS in the 20-30%. But I have the same risk factors as you - I'm 41, dense breasts, etc. The doc stressed tho that my risk today is just 12% and it goes up a little each year. She also stressed the calculations aren't great, just a guesstimate based on the data and info we have available. There is still a lot not known about LCIS.

Hi SassyMutt,

You're not kidding when you say that the risk factor numbers are a guesstimate for LCIS. Even for the average woman in the USA, its really, really hard to predict which individuals will get breast cancer and which will not. If they are this bad at predicting breast cancer for the average woman in the USA, just think how much they know about predicting the breast cancer risk for a woman with LCIS. https://community.breastcancer.org/forum/95/topic/... So forget about the Hall's calculator, other calculators that take LCIS into account. Sure, the models will generate a number, but the models have NOT been compared to the population of women who have LCIS. The 'long term' studies of LCIS are very, very scarce, and they often define 'long term' as 5 or 10 years. The 'long term' studies of LCIS don't give specifics of other risk or mitigating factors that some LCIS women may have, such as BRCA status, family history, antihormonals, type of LCIS (i.e. classic vs PLCIS, etc.) I, with my classic LCIS, got lifetime breast cancer risk estimates ranging from about 85% (without tamoxifen from the Hall's calculator) to 'somewhere between 10% and 60%, but probably closer to 10% than 60%' from my 2nd opinion at an NCI-certified center. My onc said about 30%. So, that's a pretty wide range - 10% (less than the average woman in the USA!) to 85% (from the obviously false Hall's calculator without tamoxifen.)

In 2006, I got referred for genetics counseling because my paternal grandmother had bilateral mastectomies, and had only sons. At the time of referral, I didn't know if she was under or over the age of 50. A lot of inquiry found she was over 50 when she got breast cancer. She probably got (radical) bilateral mastectomies because at that time (the early 1950s), they didn't have chemotherapy, and ?probably didn't have radiation, and so both breasts were often removed because they had few treatments.

The genetics counselor in 2006 said my risk for BRCA was low, about the same as an _average_ Ashkenazi woman (~?3-5%? I am not of Ashkenazi Jewish heritage.) At the time my insurance would not pay for it, so I didn't want to spend several thousands of dollars out of my own pocket for something which would be unlikely.

BTW, I got a new gyn since my former one moved. Its now since its been 10 years since I've been diagnosed with classic LCIS, and more people in my family have died, and more aunts/uncles have had things such as breast cancer or pancreatic cancer, I now will be going for genetic testing. (My last breast biopsy was in ~2007.) I doubt if I will be BRCA 1 or 2 positive. Some relatives have had other strange cancers, so I don't know if they will play a role in my genetic testing. I will also go for my first breast MRI. Even my oncologists did not order these when I was on tamoxifen 2006-2011. I'm glad I'll be getting a breast MRI, just to give a baseline.

Anne - will do. I had my breast MRI today, and it was easy-peasy!

I too am really curious to see what you find out.

Good luck to everyone on this site.

The genetic testing tests for many different genetic mutations, even mutations that they do not know anything about. It doesn't only test for the BRCA 1 and 2 gene mutations. My genetic testing showed a mutation, possibly for the colon, but they do not really know anything about that particular mutation. Rather unsettling to say the least. I had a colonoscopy and they found a polyp but I was fine.

My understanding is that if you have 3 risk factors then the insurance company will pay for the genetic testing. They want you to give them a list of everyone in your family who has had cancer. They will go over your history with you and see whether genetic testing is a viable option.

In my case, I had extensive pleomorphic lobular carcinoma in situ, I also had pleomorphic invasive lobular carcinoma, and invasive tubular carcinoma, all of which was removed via lumpectomies. I had radiation but I did not need chemo. I am taking Arimidex/Anastrazole, an aromatase inhibitor. I had my ovaries removed so that I could be medically induced into menopause so that I could take the AI. A blood test showed that I could not metabolize tamoxifen so the AI was a better choice for me. I was also told that AI's are better for lobular carcinomas.

Being diagnosed with PILC and PLCIS is very stressful. The invasive tubular carcinoma is not a big deal. I was fine when I was diagnosed last summer. However, ever since my 6 month follow up with mammogram, sonogram, and MRI, I started to worry a lot about a recurrence. I am sure that is because they found 2 suspicious areas on the MRI. One was biopsied and benign. However, I now have a hematoma from the biopsy. The other suspicious area is a 1.5cm linear non-mass enhancement with rapid washin washout kinetics which could not be biopsied. I am on a 6 month wait and watch protocol. I will find out in November 2015 whether there are any changes.

I also have extremely dense breasts and more than one of my doctors have said that I have "busy breasts". I have had numerous biopsies and lumpectomies over the years.

I guess that my story mimics all of your stories.

Good luck to everyone.

I am now so very beyond aggravated. I had my MRI last Wednesday. Called my onco this morning as I haven't heard results yet. They said that they had not received results either and would call the imaging center then get back with me. Here it is late evening, and the office did not even get back with me to give an update, even if it was just to say that they still didn't have results.

I know these people have many patients, but this seems a bit much to me. I find it hard to believe that my images have not yet been evaluated and a report made. It's been a week. I guess I will call the imaging center in the morning to see what they have to say.

Arrrrrgh, what a pain!!! You just know that they are aware that we are on pins and needles awaiting results.

LCIS is an incidental finding. It usually doesn't show on imaging. I had sclerosing adenosis with some associated calculations. That was benign (it can look like cancer on imaging)and ALH was found with it, suspicious for LCIS. That was confirmed on excisional biopsy..

So basically I could be a ticking time bomb. Fortunately with my history of ILC I am monitored closely and maybe Tamoxifen will keep it at bay. Besides am I right in thinking I could have LCIS living in my boobs for ever and it may never turn into cancer - even though it did once. I don't know, it's a lot to get my Tamoxifen riddled brain around haha!

fizz----my mom had ILC (stage 2, negative nodes) many years ago, and had similar treatments as you (lumpectomy, radiation, tamoxifen); she is a survivor of nearly 29 years with no recurrence! You are doing the close monitoring and taking tamoxifen; other than that, just try to live a healthy lifestyle (good diet, exercise, no smoking, alcohol in moderation) and not dwell on the "what ifs". It's all any of us can do.

anne

Dear Fizzdon:

I had a lump that was previously biopsied a few years prior.  It grew so my radiologist biopsied it a 2nd time. My path report from the biopsy showed that I had ILC and LCIS.  The path report from my lumpectomies showed that the ILC and the LCIS were pleomorphic.

I had a 2nd lump that also had been previously biopsied years ago.  This lump was re-biopsied and the result was a 2nd benign finding.  However, I had this "benign" lump removed at the same time as my malignant lump.  After the path report came back, the "benign" lump showed extensive pleomorphic LCIS as well as invasive tubular carcinoma.

Yes, it feels like we are "ticking time bombs" and it is hard to stop worrying.  Lobular is sneaky and very hard to detect.  It is very stressful.  However, I am hoping that the Arimidex is working and that I have nothing to worry about.  I try to go about my life and appreciate all the positive aspects.  I try not to think about bc.  I am glad for this website because I feel that it is very helpful.

Good luck to everyone.