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

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Aug 12, 2015 11:55AM

boobymcferrin wrote:

Hi all,

As you can probably tell, I'm attempting to keep a sense of humor about this. Sometimes it works; sometimes it doesn't.

Where to start?...

In 2010, my gyno noticed a lump in my breast. I was only 34 at that point and was not in the habit of doing self exams. (Silly me). At that point, the lump was about 2x1x2 cm on ultrasound/mammo. They decided to do a core needle biopsy, and reported fibroadenoma. I was advised to keep an eye (finger?) on it to make sure it didn't get significantly larger. I was lulled into a false sense of complacency by the fibroadenoma dx (plus a prior fibroadenoma dx in 1997).

Suddenly, in the middle of 2014, the lump started to increase in size. Kind of fast. Suddenly my breast was spilling out of all my bras. I started calling my boobs Biggie Smalls (biggie was the fibro breast, obviously). I mentioned this to my PCP, and she gave me a scrip for an ultrasound, but at around the same time I also started having other health issues which eventually led to a diagnosis of MCTD (a lupus-like autoimmune disease) in December of 2014, so all of that kind of took over for a while and I didn't go for the US. Once things calmed down, I realized my lump was still growing, so I finally went in to see my gyno, who prescribed a mammo and an US.On both sides, because I now had a second lump on the left.

The US/mammo showed that the lump on the right had grown to a size of 5.5x2.7x5.3 cm. No wonder I was noticing a difference! It also had its own blood supply and some sectioning inside. The lump on the left was relatively small, about 1 cm. It was decided that I'd get a core needle biopsy on the left. Because of the size of the lump on the right, it was decided that I needed an excision bx (basically a lumpectomy). In spite of the growth of the lump, the doctor reassured me of a benign result because 'you're young.' (I'm 39...but I guess that's young-ish for BC).

Results came in after about a week and the doctor called to report that it was a fibroadenoma, but that the fibro was (in his words) "absolutely full of" LCIS. "A ton of it", he said.

He said that nothing additional is going to be discussed or done until I have a follow-up MRI, which I can't do until late September/early October because the surgery trauma will just throw up a bunch of false signals. Apparently they are going to look to be sure there isn't a concurrent IBC hiding anywhere. I didn't get a lot of info, he just told me to google LCIS and that we'd talk more after the MRI. He did say I'd have to have mammos/MRIs every year on an alternating schedule.

So, I've been researching. I used the IBIS risk calculator that was recommended by the breast center (one of the only ones that takes LCIS into account) and was given a 67% lifetime risk. Risk factors are: LCIS (obvs), dense breasts, second-degree relative with BC (though some don't consider this a risk), 3 previous biopsies, use of birth control pills for a whopping 22 years (only stopped about a year ago), and the fact that I am childless. (Did I forget any?) The Halls calculator, which takes density into account as well as birth control use, gave me a jaw-dropping 85% lifetime risk.

I luckily have access to research databases at my job, so I've read lots of stuff in medical journals about how nobody really knows WHAT the heck LCIS actually does (is it a predictor? a non-obligate precursor? something else?) and how the estimation of BC risk has an accuracy level that is barely better than the flipping of a coin. (Wouldn't that be fun? A coin toss before your biopsies? Like a football game only for your boobs.) I don't know if all of that makes me feel better or worse.

Up until a year ago, I considered myself very healthy. I am vegan, I got at least an hour of exercise a day on most days (dogs - gotta walk 'em), I did yoga... now for the past 10 months or so it's been one health thing after another. I'm starting to come back out of the crippling depression like symptoms that made me want to do nothing but lay on the couch and watch mindless television. That's good. But I have crazy mood swings - I'm dancing, I'm weeping, I'm laughing, look I'm making cookies, wait now I'm eating them all and crying again (What the hell? My mind is spinning and my husband must have whiplash.)

Anyway, it's helped me to read about things that the rest of you are going through. I don't think I will want to take tamoxifen for a number of reasons. First, I'm already on Plaquenil which can have consequences for your eyeballs and two eyeball-wrecking meds is a lot in my opinion. Second, I'm not entirely sure I've ruled out the idea of having kids and you cannot get pregnant while on Tamoxifen. Third, I'm not sure I want menopause symptoms already. :(

My BS on the first phone call did mention PBX. My mind has already gone there. I think much will depend on the MRI results and what happens over the next few years.

If you have any advice, information you'd like to share, or anything else, please drop a reply. Sorry for the length of the post.


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Aug 12, 2015 02:26PM MsVeryDenseBreasts wrote:

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.

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Aug 12, 2015 02:42PM panthrah wrote:

Welcome to the LCIS club :) Sorry that youre here :( Im in the exact same boat...no kids, bcp pill for forever, will be 40 in oct, mri will be set around nov, etc.. pretty much my boobs are bags of marbles with how much is going on in there. who knew? There are oodles of resources (people and links) on this site that you will find helpful. I know I have :)

Dx 7/14/2014, LCIS, Both breasts, 4cm, 0/0 nodes Surgery 9/2/2014 Lumpectomy: Left Surgery 5/1/2015 Lumpectomy: Right Surgery 8/14/2017 Lumpectomy: Right
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Aug 12, 2015 07:03PM SassyMutt wrote:

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!

Dx 9/2014, LCIS, Grade 2 Surgery 11/5/2014 Lumpectomy: Right
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Aug 12, 2015 08:01PM awb wrote:

bobby----I was diagnosed with LCIS 12 years ago and I have been doing high risk surveillance ever since---alternating mammos and MRIs every 6 months, breast exams on the opposite 6 months, I took tamoxifen for 5 years and now I continue to take evista for further preventative measures. (they both help my bones and cholesterol , as an added benefit!).I'm not sure how truly accurate those breast risk calculators are when dealing with LCIS: none of the 3 oncologists I've had over the years has been able to give me a % risk with complete certainty, but feel my risk is around 35%, and that is even with my mom's history of ILC. As far as affecting the eyes, tamox can cause cataracts, but it is a very low risk, <1%, and my opthamologist said "it's probably even lower, don't even worry about it". (but if you are considering getting pregnant, you definitely can't go on tamox). I'm meeting with a genetic counselor in Sept and I hope to get some more questions answered. Feel free to ask any questions; I've been dealing with this a long time!

anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 12, 2015 08:27PM MelissaDallas wrote:

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

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 12, 2015 10:23PM Moderators wrote:

Booby-

We want to welcome you to our community here at BCO. As you can see from the responses you've already gotten, this is a knowledgeable and supportive community, and we're glad you've joined us.

You seem to have done your research on what your options are after your dx. And like MsVeryDense mentioned, it can be frustrating because there is no clear consensus amongst medical professionals as to what the best course of action is. Hormonal treatments have proven to be effective, but aren't really viable options for someone in your position, who doesn't want to forfeit her fertility while taking them. A PBX will also greatly reduce your future risk; but, it is a major surgery, and can have lasting impacts. And while it does reduce the risk, it doesn't eliminate the risk. We have some information on LCIS on our main site you might find interesting. You can locate that here: http://www.breastcancer.org/symptoms/types/lcis.

No matter what decision you make, it will be the best one for you and your situation. We're thinking of you, and look forward to seeing you on the boards!

The Mods

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Aug 12, 2015 11:04PM SassyMutt wrote:

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.

Dx 9/2014, LCIS, Grade 2 Surgery 11/5/2014 Lumpectomy: Right
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Aug 13, 2015 10:14AM SummerAngel wrote:

How long have you been taking Plaquenil? I've been taking it for about 3 years and 6 weeks of Tamoxifen with the Plaquenil did a number on my eyes (and the rest of me, frankly). Oncologists in general seem to like to downplay the risks of bad SEs, in my opinion. I had an eye exam 5 days after stopping Tamoxifen (after the 6 weeks of taking both) and my doc saw damage to my macula. I'm supposed to get a follow-up in another 7 weeks. He said the damage most likely was NOT permanent. Personally, I think taking Tamoxifen is worth a try. You'll find out pretty quickly if your body is having trouble with it, and it's a very effective drug.

It doesn't seem that many studies have been done on the effects of both Plaquenil and Tamoxifen, but I did find one that mentioned both. It was a study about Plaquenil (hydroxychloroquine), but they found an increased risk of retinopathy when taking both drugs: http://www.ncbi.nlm.nih.gov/pubmed/25275721


Age at dx: 45. Oncotype, left-side tumor: 9. Right side had multifocal IDC and "extensive" LCIS. Isolated tumor cells in 1 right-side node. Dx 3/27/2015, IDC, Left, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 4/27/2015, IDC, Right, 1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 6/1/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery 6/1/2015 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/28/2015 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/4/2015 Reconstruction (left): Fat grafting, Nipple reconstruction; Reconstruction (right): Fat grafting, Nipple reconstruction
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Aug 13, 2015 11:20AM boobymcferrin wrote:

Hi everyone,

Thanks for the answers, encouragement, and info.

Summerangel - I've been on Plaquenil since February. It took almost six months for it to start really working and I was verging on nonfunctional before it, so I'm not giving that up. I'm nervous about taking Plaq & Tamox together and at this point I'm not going to stop Plaq because it really impacts my day to day quality of life. Also, with Tamox, I can't get pregnant and that is still something I'm trying for right now, so...

Hi Sassymutt - yeah, my risk in the next 10 years is calculated to be somewhere between 10-20%. It does just add up over a lifetime.

For all those of you who mentioned genetics counseling - do you get that even if you have a low risk of the BRCA genes? I'm confused about who exactly the genetic counseling is for - everyone at high risk? Or just those at high risk because of BRCA?

Hello to the rest of you - great to hear from you.

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Aug 13, 2015 11:28AM MelissaDallas wrote:

Genetic counseling - I got sent when the LCIS arose because I had just gone a round with ovarian cancer and my dad's mom and sister both had colon cancer. They were thinking Lynch Syndrome or a few other things. They actually didn't test me for BRCA until after they had tested several other genes because they thought I was low risk for it. I was negative on all they tested me for.

BRCA is not the only genetic syndrome that raises your breast cancer risk.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 18, 2015 05:40PM - edited Aug 18, 2015 05:49PM by leaf

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.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 18, 2015 09:50PM awb wrote:

Leaf----glad to hear they are sending you for a baseline MRI. I will be going for genetic counseling/ testing in Sept.; let's keep in touch. It will be interesting to see what the genetic counselors say.

anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 20, 2015 03:20PM leaf wrote:

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

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 20, 2015 05:06PM awb wrote:

Leaf--glad it went well, praying you get good benign results soon!

anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 20, 2015 05:32PM MelissaDallas wrote:

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

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 23, 2015 12:31AM MrsGreenJeans wrote:

Hi there, booby, and everyone else! I've been lurking on this site since my LCIS dx this June, and finally decided to join the "party". My story is similar to so many others here. I had my first excisional biopsy at age 21 after my pcp found a lump on my very first breast exam (yeah, that was 31 long years ago!). It was a fibroadenoma. I was told at that time that I had dense breasts, but didn't really give it much thought and went on with my life.

Fast forward to my early 40s, when I found a lump and had my 2nd excisional biopsy. Another fibroadenoma, no big. Couple of years later found another lump. Core needle biopsy, fibroadenoma, clip to mark the spot. Okay, now this was getting old. 2013, suspicious area on mammo, ultrasound confirmed a mass, another core needle and clip, another fibroadenoma. Umm, aren't those little boogers supposed to slow down as we get older??????? Went for 6 month post biopsy follow-up, told to come back in another 6 months. At that one I learned that there was another spot right next to the one they were checking, couldn't tell if it was a new one or the biopsy had sectioned it off into 2 pieces. Another 6 month follow-up showed rather rapid growth, so radiologist recommended excisional biopsy. More fibroadenoma, but that is when they also found the LCIS.

My surgeon referred me to an onco, who went over my options with me and recommended an MRI. In addition to the LCIS, density, and multiple biopsies, my younger sister had BC at age 43. Luckily she is now 5 years post treatment and doing great. Also, there is a TON of cancer on my dad's side of the family, so she suggested genetic counseling/testing. I did test negative for BRCA after my sister's dx but have not done other testing as yet.

After multiple delays, I finally had my MRI on 8/19, exactly 2 months after my biopsy. Now I am awaiting the results, and will proceed from there. I am rather anxious to get this ball rolling as I am very much leaning toward PBMX and have met my deductible for this year. I'd like to get as much completed as I can before the new year.

I've done a lot of investigating on this topic, and feel pretty confident that PBMX is the right choice for me, depending on the MRI results. Here's hoping for a negative result.

Every person is different, and has their own comfort level as to what will work best for them. I hope those you who are still trying to decide can come to a decision that works for you, and not worry about what others say. Best of luck to everyone, and I will come back to check on your status and update with mine.

Peace.

Family History, Negative for Genetic Mutations Dx 6/19/2015, LCIS, Right Surgery 12/2/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/10/2015, DCIS, Left, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+ Surgery 4/12/2016 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Aug 23, 2015 02:25PM 614 wrote:

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.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Aug 24, 2015 01:31AM Moderators wrote:

MrsGreenJeans-

We want to welcome you to our community here at BCO! Although we're sorry for what brings you here, we're glad you decided to de-lurk, and hope you find the information and support you need!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 24, 2015 07:54AM boobymcferrin wrote:

Hi GreenJeans - it's good that you get to go for the MRI now. I just found out I will have to wait until almost the end of october - a full three months (plus a bit) post lumpectomy. They pretty much rearranged my entire right breast, though, so I guess I understand having to wait. The choice was: do it in two months and maybe throw up a false positive and end up getting another biopsy, or wait three months until everything is definitely healed. So, I'm waiting. Very, very impatiently.

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Aug 24, 2015 09:58PM MrsGreenJeans wrote:

(Cue music) "The waaaaaaaiting is the hardest part....."

Happy

Family History, Negative for Genetic Mutations Dx 6/19/2015, LCIS, Right Surgery 12/2/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/10/2015, DCIS, Left, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+ Surgery 4/12/2016 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Aug 26, 2015 09:52PM MrsGreenJeans wrote:

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.


Family History, Negative for Genetic Mutations Dx 6/19/2015, LCIS, Right Surgery 12/2/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/10/2015, DCIS, Left, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+ Surgery 4/12/2016 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Aug 26, 2015 10:08PM fizzdon52 wrote:

How is your LCIS diagnosed. I had ILC and didn't even know I had LCIS but apparently they found it when the did the biopsy for my ILC. I had Mammograms, Ultrasounds and MRI's and no-one noticed LCIS until it was discovered in my biopsy? Just wondering if I have it elsewhere in the same breast or in my other breast.

Dx 2/8/2014, ILC, Right, 3cm, Grade 2, 0/11 nodes, ER+/PR+, HER2- Surgery 4/29/2014 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Radiation Therapy 5/31/2014 Whole-breast: Breast Hormonal Therapy 6/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2015 10:27PM MelissaDallas wrote:

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..

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 26, 2015 10:28PM MelissaDallas wrote:

Fizzed, once you know you have it it is pretty much assumed that it is probably multifocal and very likely bilateral

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 26, 2015 10:45PM fizzdon52 wrote:

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!

Dx 2/8/2014, ILC, Right, 3cm, Grade 2, 0/11 nodes, ER+/PR+, HER2- Surgery 4/29/2014 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Radiation Therapy 5/31/2014 Whole-breast: Breast Hormonal Therapy 6/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 26, 2015 10:58PM MelissaDallas wrote:

The only way they ever knew about LCIS in the past was that it believe in was discoveredin autopsies, mostly in women who died of something besides cancer.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Aug 27, 2015 07:01PM awb wrote:

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

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 27, 2015 07:10PM fizzdon52 wrote:

Thanks anne, that is exactly what I am doing. Loved hearing about your mother too, thanks :)

Dx 2/8/2014, ILC, Right, 3cm, Grade 2, 0/11 nodes, ER+/PR+, HER2- Surgery 4/29/2014 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Radiation Therapy 5/31/2014 Whole-breast: Breast Hormonal Therapy 6/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 27, 2015 09:37PM 614 wrote:

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.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Aug 27, 2015 09:38PM 614 wrote:

Dear Boobymcferrin:

Good luck with the angst while waiting.  That is almost the worst part.  I wish you the best.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)

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