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Topic: LCIS, Papilloma, Radial Scar

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 16, 2020 09:34AM

newbie2020 wrote:

Hi everyone, just diagnosed with LCIS, Papilloma, and a radial scar and am 55 yrs old. I am in research mode and reading all of your posts are so helpful. Long story short, I was diagnosed by chance from a CT Scan for a possible kidney stone. Have been doing yearly mammos and it was not caught by them. First the CNB showed Papilloma, then excisional was upgraded to LCIS and radial scar. Just met with the surgeon for my followup, and she said what was a slightly over 20% lifetime risk with just the papilloma had increased to 48.4% with the addition of LCIS. Now I am referred to a oncologist for increased surveillance (6 month mammogram/mri) and most likely tamoxifen. I really do not want to go the tamoxifen route because of the side effects and the anxiety of not bringing my risk down as low as possible. I am leaning towards prophylactic bi lateral mastectomy, but am trying to keep an open mind and not make any rash decisions because I'm really and just starting out on this journey. I know I have time on my side which is really good in making these types of decisions. Any words of wisdom would be most appreciated in respect to anyone who is or has been in this situation. My surgeon kept stating you do not have cancer, which I understand, but now my risk is so much higher and I truly feel like a sitting duck. I just want to see my grandchildren grow up and I want to make the right decision in reducing my risk as much as possible now the I have been given the "heads up" in this busy breast of mine thanks to a totally unrelated CT scan.

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Jun 16, 2020 12:00PM Moderators wrote:

Hi newbie2020 and welcome to Breastcancer.org,

We're so sorry to hear the reasons that bring you here, but we're really glad you've found us. You're sure to find this place a wonderful source of advice, information, and support -- we're all here for you while you weigh your decisions!

Someone will likely be by soon to share their thoughts and experience. In the meantime, we wanted to point you also to the LCIS forum, where you can introduce yourself to others with a similar diagnosis. There's lots of good threads there, too, which can help educate you on options.

We hope this helps and we look forward to seeing you around the boards!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 16, 2020 05:20PM light1candle wrote:

Hi newbie2020. Your diagnosis sounds almost identical to mine - for me it was Papilloma, ALH, LCIS, radial scar. Mine was discovered in 2017 when a mammogram found slightly pleomorphic calcifications near a “nodule” that they had noted and that they had been watching since at least 2012. Most studies agree that LCIS raises risk for future breast cancer by 1-2% a year. At 55 you are younger than I was at diagnosis (64) so that may be a factor to consider - you likely have more years ahead of you.

You are right about the choices for risk reduction: active surveillance, chemoprevention, or bilateral mastectomy. I am still in flux about my choice, even after nearly three yrs. I have other health concerns that make chemoprevention a risky choice, though it would supposedly reduce my risk by about half. I have considered a BMX and have consulted with two surgeons about it, but have not made a final decision yet. (After two hip replacements in the yrs since this diagnosis, I don’t take surgery lightly.) That leaves me with the every 6 month imaging. After an allergic reaction to the gadolinium contrast at my first MRI, I now alternate mammograms with an automated whole breast ultrasound (AWBUS) called a SonoCine. I have had three biopsies and I will definitely lean towards BMX in the future if I have more abnormalities found.

Another consideration for those choosing yearly MRI’s is the questions surrounding the safety of the gadolinium contrast. There is some evidence that it may not be excreted from the body completely and may be deposited in body tissues like the brain. While MRI’s are one of the best imaging techniques, I would advise you to read up gadolinium and gadolinium deposition disease in order to make an informed decision about yearly MRIs.

One last tip is to consider the new research on low dose tamoxifen, which may be just as effective as the higher dose, but with many fewer side effects. Also, if you are post-menopausal, you might consider raloxifene which was recommended to me. Raloxifene is in a similar drug class as tamoxifen, but it seems to have a safer risk profile than tamoxifen. It also doesn’t have the bone thinning side effects of the aromatase inhibitors. Raloxifene was the chemoprevention drug preferred by two ofthe docs that I saw for consultations.

Best of luck to you as you research your choices and make your decisions. You likely have some time to think about this - no need to rush into your decisions.

Barb

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jun 16, 2020 06:19PM newbie2020 wrote:

Hi Barb! And thank you for your reply. I will certainly do more research on the gadolinium. I am not seeing the oncologist for a few more weeks so I am just reading and reading about all options. My gut? PBMX. I want to bring down my risk as much as possible while not having anxiety with all the surveillance testing and the chemoprevention meds. I was reading up on the side effects and I feel like I would be transported back to my 40's..lol. I have been post menopausal for quite a few years and the thought of hot flashes etc. Yuck. I just don't know if I can do that for the rest of my life. This certainly is how I feel now. I guess the shock and all is just setting in. I will continue to do due diligence for the best decision for me. Thanks so much :)

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Jun 16, 2020 09:03PM pegasus68 wrote:

Hi Newbie2020! I was diagnosed with LCIS at age 45 and also have a strong family history, so my risk level was quite high. I did high risk monitoring (alternating 6 month MRI/mammogram) for several years. Unfortunately, with my very 'busy' breasts, I was getting call backs almost every time, with frequent biopsies - and even when when they didn't biopsy, they would perform extra additional imaging every 6 months for 'probably benign' spots they wanted to keep an eye on. I am premenopausal and did try low dose tamoxifen which was fine for a while, but once side effects kicked in they were unbearable; I even went off the drug and attempted to take it again several months later, but the side effects came back rapidly the next time so tamoxifen was out for me. This was a huge disappointment since most women seem to tolerate the low dose very well. With that option off the table and being tired of a 'cancer scare' every 6 - 12 months and losing a chunk of my breast each time (not to mention the expenses associated with all of that), I decided to get a PBMX. With a fabulous and experienced team, I had a nipple-sparing, direct-to-implant (pre-pec) surgery at age 50 - one big surgery to essentially get rid of the worrisome tissue and replace with similar-sized implant and I was done. (Caveat - I may have some fat grafting to 'fill-in' for some rippling on one side, but it's really not bad and I'm pretty pleased with the outcome even without that.) Please be assured this surgery is a BIG step and recovery was slow - and there is no going back once it is done so you need to be sure you investigate all options before you decide to go that route. I do miss having sensation in my breasts but cannot tell you how relieved I am to be off the imaging merry-go-round; I literally danced when I received my last 'you are due for your 6 month imaging' letter because that stressor is gone from my life. (FWIW - with all the atypical stuff they found in both breasts after the MX, I would likely have been in store for continued biopsies and surgeries so I remain confident that I made the choice that was right for me.)

Having said all that, you may consider giving the 6 month imaging (and/or anti-hormonal) a chance before you make your final decision. I would likely not have chosen PBMX if I hadn't had such repeated issues for YEARS with worrisome 'stuff' popping up and/or had been able to tolerate the tamoxifen.

One more comment about MRI - for breast imaging, my imaging center has switched to the macrocyclic version of gadolinium that doesn't seem to accumulate in the brain to the same extent as the linear version (I suspect other facilities have switched as well). Unfortunately, the first 7 of my MRIs were performed with the linear version that shows more deposition, so I figure I've had far more exposure than I need, even if getting an MRI at my facility today might be less of a concern.


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Jun 17, 2020 08:08AM newbie2020 wrote:

Thanks so much pegasus68 for your story! You definitely tried all scenarios for your treatment and I can totally see how you ended up with PBMX. Right now I have to wait a few more weeks to even see the Oncologist, so my mind is spinning. Can I ask if you looked into the possibility of Deep Flap reconstruction? I am not sure if I would be a candidate, but there are many who chose that route.

I keep asking myself what am I more scared of a PMBX surgery or a future cancer diagnosis? Hands down for me would be the cancer diagnosis. My current cancer risk is 48.4%. My dad had breast cancer, also not sure about BRCA. He did take the test but at the time many years ago they did not do a full panel from what I am told, so risk is unknown. I am looking into genetic counseling too. Also the fact that in the small specimen that they excised I had three different things going on (LCIS, papilloma and radial scar) none of which they saw on mammo, and only the papilloma showed on my initial core biopsy. My MRI also said I have marked background parenchymal enhancement and multiple bilateral scattered foci in both breasts, although right now they are less than 5mm in size. My gut says these breasts of mine are a breeding ground for bad stuff. IDK, hopefully the Oncologist can shed some light when we meet. Thanks so much for your story and reply!

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Jun 17, 2020 05:51PM pegasus68 wrote:

I did consider DIEP flap surgery, but I just didn't really want to a second surgical area/scarring etc. at that time. My PS is skilled in that technique and was very supportive of that as a possibility for me, but I also think I would have had to go down some in size (which I didn't want to do, since I was only barely B to begin with!). I didn't mind the idea of implants and liked the idea of a one-procedure deal and get on with my life. However, since implants don't last forever, whenever down the road I have them removed I may consider DIEP then instead of new implant (or maybe go flat if I decide against another surgery at that time).

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Jun 18, 2020 07:08AM beach2beach wrote:

Just wanted to jump in and say right before I was diagnosed with BC I had my annual mammo/sono. Sono showed something in both breasts. Biopsed left and it was radial scar. Met with my surgeon and she had told me with radial scars there is a slight chance there may be cancer hiding nearby. I believe she said 1% chance or less so she said it was necessary to remove the whole radial scar to be safe. Long story short wound up having BC in my right breast. That one had ILC,LCIS and DCIS in a small 9mm tumor

I then opted to do a bilateral since both boobs seemed to turn on me. Pathology showed the left with the radial scar did NOT have cancer, but for me it was the right choice. That boob would have looked like a sunken head after an excisional biopsy and then I would have an implant in the right and would have looked really odd.

I was 51 at the time of dx, 3 years ago. Did the double, went direct to implants and now on Tamoxifen. (tamoxifen has not been horrible for me)

Good luck with whichever you choose.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 18, 2020 07:36AM newbie2020 wrote:

Thanks so much for your input beach2beach. I am most likely going to have bilateral mastectomy. My gyno who I really respect says given my family history and all that is going on it would be best. I haven't seen the oncologist yet but I will discuss this with him. I think the same way, my left is way to busy and LCIS can be in both. Bilateral will give me the best chances of reducing my risk but also for me, piece of mind. Unless the oncologist has a strong argument not to (which I will listen to) I am really leaning to having prophylactic mastectomies and just be done. I just have a very strange feeling that there may be stuff still lurking that I do not even know about. Can I ask you when they do the operation prophylactically do they take lymph nodes too?

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Jun 18, 2020 02:19PM Lostchick wrote:

hi. Sorry you are here but glad you have the info. I was diagnosed with LCIS is 2013 after my first mammogram led to a surgical biopsy for something else. I chose active surveillance as I had no family history, don't do well with medication, and did not want bmx. Fast forward 7 years with multiple scares and painful biopsies, I decided I'd had enough. I had bmx with reconstruction on 5/12/2020. They found LCIS in both breasts, ILC in one, and 2 spots of IDC in the other. Yikes! All 3 invasive spots were small (less than 5mm), I had negative nodes, and my surgeon is calling it a definitive surgery!! Meaning I will most likely not have to go through any type of chemo and/or radiation. What I'm trying to say here is LCIS is super sneaky. If found in 1 breast that doesn't negate something happening in the other and it doesn't seem to differentiate between lobular or ductal. There are of course lucky folks who get the LCIS diagnoses and never get cancer and you of course need to do what you feel comfortable with but for me the fear just got to be too much and I'm happy to (hopefully) be done with it. Best of luck to you

Dx 2/20/2020, ILC, Right, ER+ Surgery 5/11/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 5/12/2020, IDC, Left, <1cm, Stage IA, Grade 2, ER+
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Jun 18, 2020 04:31PM newbie2020 wrote:

Lostchick, wow your experience definitely puts me more inclined to just do the BMX. I'm also afraid of what could still be lurking in there now. Thank God you caught it while it was very small. Thanks so much for your story!

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