Young LCIS patient

Fireball78 · March 2014

I am a 35 yr old mother of two little ones that has just been diagnosed with LCIS. As much as I try I have yet to find info that regards to my specific situation. I have researched and am most likely not a good candidate for Tamoxifen. I am also a military spouse which makes moving every two yrs and finding new doctors at each duty station stressful. I am leaning towards a double masectomy and see it as an investment in my future more than anything else. I already have saline implants (under the muscle) and no have idea what surgery/recovery/reconstruction would look like for someone in my position. Has anyone else (mainly with implants) gone through this before?

Anonymous · March 2014

what specifically makes you think you wouldn't be a good candidate for tamoxifen?

Anne

Fireball78 · March 2014

The same family member who had the breast cancer ended up with uterine cancer a few years later. I myself have been diagnosed with endometriosis in my early 20's. That was part of the reason I was on birth control pills for 10 yrs before kids came into the picture. I have the Mirena in now- which can hinder the absorbtion of the drug. I am also taking Wellbutrin which has also been known to hinder the absorbtion of the drug. I am not willing to trade in one cancer risk for another- it just doesn't make sense.

MelissaDallas · March 2014

the risk of uterine cancer with tamoxifen is only about 1%.

I would think at the least they would want you off hormonal birth control (iud or pills), tamoxifen or not.

leaf · March 2014

This doesn't address your situation with saline implants. In general, as you might expect, there isn't much information in Pubmed about younger LCIS women.

But I could find these small studies:

We attempted to study this interaction in high-risk women at the
extremes of age in our population. The Women-At-Risk Registry was
queried for women who were < or =35 and > or =70 years of age.
Enrollment criteria included: strong family history of breast cancer
(FHBC), and/or biopsy-proven history of atypical ductal hyperplasia
(ADH), atypical lobular hyperplasia (ALH), or lobular carcinoma in situ (LCIS).
Descriptive analyses and Fisher's exact tests were used to analyze
these factors and to assess their influence on breast cancer
development. Our population included 1,412 high-risk women with median
follow-up of 4 years. Of 195 women < or =35 years, 3 (1.5%) developed
breast cancer. All three had strong FHBC and none had a prior high-risk
lesion. Of 82 women > or =70 years, 6 (7.3%) developed breast
cancer. Mean Gail score for women > or =70 years was 4.3, as compared
with 4.7 in the subset of older women diagnosed with cancer. Fisher's
tests demonstrated that ADH (p = 0.15), ALH (p = 1.0), LCIS
(p = 1.0), and FHBC (p = 1.0) were not associated with breast cancer
development in older women. We conclude that, for women < or =35
years, a significant FHBC may be a stronger predictor for breast cancer
development than high-risk lesions. http://www.ncbi.nlm.nih.gov/pubmed/18979140

You probably have more company than you know: In this very old (1987) study of 110 consecutive medico-legal autopsies of women 20-54 years old, 20 women were found to have breast atypia or breast cancer. 3% had LCIS; 14% had DCIS; 2% had invasive breast cancer. Of those 20 women, only 1 was known to have a breast diagnosis before death. (In other words, one of the invasive breast cancer cases was known before death.) http://www.ncbi.nlm.nih.gov/pubmed/2829956

leaf · March 2014

You may also want to check out the breast surgery/reconstruction forums for info about breast reconstruction with pre-existing implants.

Fireball78 · March 2014

Update...

Went in this week to see surgeon and got the lab report. Their wording solidified my desire for a total bilateral mastectomy. I am way too high of a risk to just be monitored.

Visited the oncologist this week as well. She won't use Tamoxifen due to my history and current medications and also feels that the surgery is the best option. She drew blood for the genetic testing and I should know in a month where I stand on that issue.

Had my MRI with contrast tonight. Not a fun experience. Uncomfortable is the best way to describe it, and my anxiety of when the next "round" of loud noises made me jump every time! I will get those results tomorrow.

leaf · March 2014

Best wishes, Fireball!

Fireball78 · April 2014

Thank you Leaf!

My surgery date is May 9th. I am having a skin/nipple saving double masectomy with Alloderm and (hopefully) immediate implants. I was told by my plastic surgeon that if blood supply is low then tissue expanders will be in place instead, but his goal will be to replace my old implants with bigger silicone ones during that surgery. I decided to only go big enough to make up for what tissue is missing. I was told recovery will be with 4 drains and about a week on heavy drugs with two weeks before I can think about returning to work (I'm a teacher).

My genetic testing came back- BRCA negative! I am happy that I no longer have to worry as much about my daughter's future.

I know this decision may seem extreme to some but I am looking at it from mostly the military perspective of moving all the time and starting over with new doctors at each location. This way it is done and over with. That and at this location I get the civilian doctors that know what they are doing and not some young Captain surgeon who may not have "played" with a pair of boobs before!

Thank you to all that have shown me support. I will continue to share my journey as I am learning there isn't much out there for patients with implants prior to diagnosis.

Young LCIS patient

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