Jan 11, 2018 12:42PM - edited Sep 21, 2019 01:26AM by buttonsmachine
Posted on: Jan 11, 2018 11:51AM - edited Jan 11, 2018 02:49PM by SSWNC
I was diagnosed with LCIS after a breast reduction in August. I've seen 4 doctors, all of which have varied in treatment recommendations. I've personally decided I won't take the meds, so I'm deciding between monitoring an Double mastectomy. I understand the mastectomy is a big step but considering my age and having to monitor every 6 months for the rest of my life seems like a lot of stress. Right now I could have skin and nipple sparing mastectomy and be done withit. Am I crazy for leaning toward this option?Log in to post a reply
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Jan 11, 2018 12:42PM - edited Sep 21, 2019 01:26AM by buttonsmachine
Jan 11, 2018 04:35PM LL99LL wrote:
I think considering mastectomy is totally reasonable. I'm considering it due to finding out at 48 that I have LCIS and I don't have as many years ahead of me as you do. Prophylactic mastectomy is not what most people with LCIS choose to do, but some do and it's a valid option. I'm still working on deciding what I'm going to do. Good luck with your decision.
Jan 11, 2018 09:13PM Georgia1 wrote:
Hi there SSWNC. I know how stressful this must be for you. Please remember, however, that LCIS is not cancer. It does increase your chance of having cancer in your lifetime, but there is no immediate risk to your health. Here is some info. about how it is different than IDC:
If you have other risk factors that would be an important consideration. But to state the obvious, a double masectomy cannot be undone. You might try just monitoring for a bit and see how you feel.
Jan 13, 2018 11:09PM HeatherJeanne wrote:
I am asking the same thing. I am 42 and was diagnosed in 2016 with LCIS. My screening month was October and I got to go for additional mammogram views and ultrasound in November. I got the all clear this year, but I was worried for 2 months before October and I was panicking for the month of October when I knew that something was found in my imaging but the doctor’s office did not call me back to tell me what the radiologist found. I was so pissed at myself that I didn’t get the PBMX last year like I planned.
I told myself that I would give myself the holidays not to worry about it and that I would make the decision in the new year. Here it is the new year and I don’t really know who to talk to. Plastic surgeon said yes, oncologist was on board, breast surgeon said he would do it, but felt it was overkill.
I would love to know what you decide. At least you have the option for nipple sparing. The PS didn’t recommend it for me
Jan 15, 2018 12:48PM - edited Jan 15, 2018 12:48PM by BayAreaGirl
I was diagnosed PLCIS, a more nasty of variant of LCIS. My surgeon recommends close surveillance if my excisional biopsy comes back non-invasive. I remember she said if this was LCIS, she wouldn't even recommend excisional biopsy. She mentioned LCIS patients has 4-5 times higher risk of developing BC
Jan 15, 2018 03:53PM SSWNC wrote:
Thanks everyone for your responses. The IBIS scale for someone with my same risk factors came back 68%. Because of this I had my plastic surgeon and two oncologists recommendation double mastectomy. And I had two doctors recommend monitoring. This is why I’m so torn. I have my first MRI next week so I will see how that goes.
Feb 12, 2018 01:41PM Jt3 wrote:
SSWNC, how did it go? I am awaiting surgery on 2/21
Feb 12, 2018 01:59PM farmerlucy wrote:
To me it sounds quite reasonable. I had a PBM for ALH and ADH, one step below LCIS and DCIS, and invasive was found. At 32 I would have to imagine that your breasts are extremely dense. Mammos are not that reliable with extremely dense breasts. I did the high risk screening from 33 to 51 yrs. I did the PBM mainly because I was going broke with the screening, biopsies, you know the drill.
Apr 12, 2018 01:18PM Michi wrote:
Just diagnosed with LCIS and ALH and I am totally freaked out. I'm 34, went in for a mamo since I noticed some ever so slight swelling in my right breast. Mamo was normal, but I insisted on MRI since I am younger and with denser breast. MRI showed 2 areas of enhancement, both of which they assured me was "nothing at all to worry about" and only the larger of the two was ordered for further testing. When I went back for the MRI biopsy, only one of the areas showed again, which happened to be the smaller of the two they didn't even advise taking a sample of...They grabbed a sample because I was already there and on the table and it came back with these atypical cells. I am meeting with the surgeon tomorrow who will perform the excisional biop to check for anything further. They claim none of what they found could be responsible for the slight swelling and that is likely caused from a recent, intentional 10lb weight drop. (Baby weight from youngest).
Reading all these stories now I am totally freaked out. I had no idea they would likely advise me to take anti cancer drugs, for years to come, or even consider a BMX. I have no family history of BC, nor does my age put me at elevated risk, but I just don't know what to think. I keep worrying they will find something more invasive now, I just don't get it because I have had two MRI's at this point and I can't imagine they would have missed something else, but I know these lobular cancers can hide. This is all so scary, and I appreciate at least reading these forums and knowing I am not alone.
Apr 14, 2018 09:42AM light1candle wrote:
Hi Michi, so sorry you find yourself here, especially at such a young age. LCIS is rather uncommon, so this is a pretty exclusive “club” that no one wants to join.
Have you heard back from the breast surgeon yet and scheduled your excisional biopsy? That would be a standard next step to be sure that the atypia is the worst thing you have in the enhancing area of your MRI. If that is the case, you’re correct that the three recommended possibilities are active surveillance, taking tamoxifen (or AI’s), or a bilateral mastectomy. These are very personal and difficult choices to make.
I am much older than you but received my LCIS diagnosis in 2017 and I, too, am struggling with how to handle this information. I am not a good candidate for the anti-estrogen drugs due to other health considerations, so I am currently on a 6 mos imaging schedule, while I decide about the mastectomy option. In one way it is a “gift” to get some advanced notice of our increased risk for bc, giving us the chance to be proactive. On the other hand, there is also a heavy burden having this knowledge.
Please check in and let us know about your excisional biopsy. I will be thinking good thoughts for you and hoping for your quick recovery and that you get only good news from here.
Apr 14, 2018 03:32PM Michi wrote:
Thank you so much for responding and I’m happy I’m not alone. I met with the surgeon and asked about a BMX.. because I am young and don’t want to deal with the anxiety of having test every 6 months and drugs for 5 years with loads of potential side affects. I already have implants and am not attached in anyway, especially now when I find out I have all these abnormal cells! My LCIS had a subset of cells showing slightly pleomorphic characteristics, so that was all I needed to hear to send my anxiety through the roof! Although I’ve had two MRI’s with nothing showing up, aside from the small area they excised, I’m still worried once they get in there something else will be lurking. After all, I had a slight swelling in my right breast which started on this, so I’m very nervous about what could come back on the final path. I know the stuff can hide well, even on MRIs. My surgeon does not want to operate twice ( meaning do the excisional biopsy, then right after the bmx) , so I need to follow up for a second opinion to be sure, as he says this is not what people typically do given my situation. He actually told me to meet with second opinion, as well as his clinical oncologist and PS, as he is a surgical oncologist. My stepmother is battling stage four metastasized cancer and my father is at the end of his rope right now. I played this situation way down to my family so they wouldn’t worry, and of course my mother thinks I am overreacting and it is too drastic of a decision. Reading through some of the experiences on here is really helpful, and I’m trying to look at this as the universe giving me the gift of foresight which many did not receive. I have two very small children 3 1/2 and 1 1/2 so my main concern is living to see them grow up. How have you been coping with the anxiety of enhanced testing? Are they even able to see anything on a mammogram or you are doing MRIs as well? What a tough decision we all have. Let me know what you end up deciding, and thank you for the support
Apr 14, 2018 04:23PM SSWNC wrote:
hey Jt3- my tests all came back fine (mammo, ultarasound, MRI) but I just can’t imagine going through all this testing each year. It’s so stressful and expensive. My Gynocologist also recommended a BMX, so at this point I have 3 doctors saying that’s the direction they would go and 1 who says that’s very extreme. I’m even more confident now in the decision to do a PBMX, and all the responses here helped me feel more secure in this choice.I will likely do it next January.
Apr 18, 2018 02:55PM Michi wrote:
I'm going for the BMX, May 21st. I found an amazing Dr. here in Boston at MGH, who is an expert with nipple sparing with immediate implant placement. I saw her as a second opinion and she was referred to me from a friend from school who is also a BC oncologist, so I feel good about the decision. I personally cannot handle the anxiety of going through test after test for years to come. The amount of stress it will put on my body and my family is not worth keeping my breast for. I already have implants, so I guess I mentally parted ways with my breast over 10 years ago anyways. Although it was time for an upgrade, I didn't intend for it to be this way. Oh well, I am trying to keep the attitude positive; a softball thrown from the universe, if you will. Keep me posted on your decision and I'll check back in after surgery.
Apr 25, 2018 12:25PM NicolaSue wrote:
I too have young children and when I was told I had LCIS in Feb 2017 I immediately wanted PBMX . Strangely though my emotions changed over time and I am now in the surveillance-only camp. All I can say is that it takes a long time to adjust to the LCIS diagnosis and I did not expect my feelings to change. They do say that the one thing you have with LCIS is time to make a decision.
Apr 26, 2018 11:50AM Michi wrote:
Hi Nicola Sue,
Thanks for responding, and it's good to hear from others with similar situations. I've just been so anxiety ridden since I found out, I keep thinking they are missing something, since this all started with my right breast looking a tad swollen. I've had two MRI's and 2 Mammos at this point, they still can't see anything other than this 5 mm area of cells that is showing abnormal. 2.2 cm was taken out for the core biopsy, so I'm not even sure it that would show now. While I hope and pray there is nothing else there, I know it's always a risk, even with an excesional. Also, a sub set of my cells had some "slightly more plemorphic" characteristics, so I know these can be even more aggressive. I guess what I'm saying is that I don't have a lot of faith in the testing, since nothing showed on either mammo. I'm also more of a worrier, so it's more a personality problem of mine! ;)
Have you been able to get past the anxiety part okay? Can I ask, what made you change your mind on the BMX?
May 17, 2018 03:19PM NicolaSue wrote:
Michi - how are you doing? I decided to NOT have surgery after hearing several doctors tell me that the risks (in my case) outweighed the benefits. It was strange how I so starkly changed my mind though. At the outset, I was all for surgery. Emotions do change over time.
May 18, 2018 06:42PM Michi wrote:
I’m actually scheduled for mine Monday but I have certainly been trying to talk myself out of it and think of a million reasons why I should back out, ultimately I am just too high strong and anxiety ridden by nature to deal with increased surveillance. I am curious what changed your mind? What did the doctor say in terms of risk for surgery...
May 22, 2018 10:13AM NicolaSue wrote:
Here in the UK it's quite hard to have surgery for 'only' a diagnosis of LCIS, so I guess I was probably swayed by what the doctors said. I do remember reading somewhere that at least with LCIS you have time to think about it.
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