LCIS: What treatment(s) did you choose?

I agree they don't seem to be able to find LCIS. One was found incidentally.

So why do they keep checking with mammograms and ultrasound if it can't be found? What are they looking for?

I had a double mastectomy 10 years ago with reconstructive surgery. I had the Goldilocks procedure. I recently decided to have my implants removed and they discovered LCIS. I’m not sure what the next step is. Has anyone developed this after a mastectomy?

May I ask how was the LCIS discovered?

From a tissue biopsy when they removed my implants. They think there was some breast tissue left on my flap during my Goldilocks procedure. I’m not sure that the LCIS is something I should be concerned about since I already had a mastectomy. Any thoughts?

I have a similar concern as you. I was diagnosed with LCIS for which I chose a double mastectomy in hope of reducing the risk as much as possible. My LCIS was originally discovered through a mammogram. Now that I have the double mastectomy, my concern is how to monitor from this point on for abnormalities since there is always some remaining breast tissue. The best thing to do I think is to monitor with a MRI every so few years and hope that we can catch the LCIS before it becomes a full blown lobular cancer. I am interested to know what your surgeon/oncologist have to say about it.

May I ask what your follow up screening consists of after bilateral mastectomy? Is one able to do MRI’s if no reconstruction is done? MRI seems to be most effective in detecting anything lobular.

I was diagnosed with LCIS in 2013 at the age of 54 and with invasive Lobular Cancer two years later in 2015. With the LCIS I chose lumpectomy surgery and tried Tamoxifen. I couldn't tolerate the Tamoxifen at all and will never know if it might have helped me not to have invasive cancer, but.....I chose a bi lateral mastectomy with the invasive lobular because..the LCIS was in my left breast and the invasive was in the right (something lobular does, equal opportunity cancer - both breasts). I am happy with my decision to have the bi lateral mastectomy. I didn't want to have the worry and ongoing checks that i might miss it. I was lucky because my cancer was Stage 1 when I had the mastectomy and also because I also found out from the post operative tests that I had DCIS and LCIS in other breast tissue. It was the right decision for me. In hindsight, if I had know...I would have opted for the mastectomy when I had LCIS because despite just one lymph node being removed in my left side (the non invasive cancer side) there was a surgical error (dang) and I have bad lymphedema now and have had some very scary experiences due to that, including cellulitis resulting in sepsis and a long hospital stay. But, hindsight...ha ha......if only. With LCIS you don't have to get sentinel lymph nodes removed and I wouldn't have this chronic condition. But I do think I'm an outlier in that regard. I couldn't use any of the estrogen AI drugs. They all made me really sick (many meds do, lots of allergies), so I finally asked for blood tests to check my estrogen and progesterone levels. When they did they found that I had little to no estrogen and no progesterone. My cancer was estrogen positive 98%. I can attest to no estrogen now too. I have ALL the nasty stuff that happens when you don't have any hormones.....vaginal atrophy, joint degeneration, hair loss, dry eyes, skin, hair, mouth....all causing their own sets of problems. So, ask your doctors to check your hormone levels. That can be another tool in determining whether you should move forward with the drugs or surgery. All hard decisions. Hugs to all.

Never thought of that ; having blood work instead
Of The drugs
I am going
For
A
Lumpectomy for Ivasive
Ductal nothing in my lymph so far
And a breast reduction

Supposed
To have radiation for one week after
I read that mastectomy removes 95% of the breast tissue
I wonder what I will have removed
The Doctors directed
Me against a
Mastectomy but recurs ce will always be a realistic
Concern ANa the follow up Mmograms, ultrasound s & CT’s
And the AI’s and side effects fr
These and the radiation scares
Me too
But I guess it’s
Better than cancer?

What was the reason your Dr gave against having a mastectomy?

When I was first diagnosed with LCIS I had an oncologist who was very helpful regarding overall health and she suggested the hormone testing. Since then I request those tests periodically to see what's going on. Oddly, you kind of have to ask for them (?). Cancer doctors treat cancer and I think they want to do what they have hard evidence to support (it's their job) but it never hurts to do some extra digging to see where your overall hormone levels, Vitamin D levels, etc are. Low Vitamin D has been linked in some cases to the development of breast cancer as well. I also had none of that and the doctors corrected it with a high dose week of Vitamin D and now I supplement regularly. Make sure you're clear on why the doctors are recommending what they are......it's your body and you'll feel better if you understand the 'why' as you venture into your care plan. Hugs!!