Time for a formal Hello!

Jill42_fromUtah

Hello!

This message board has been amazing for me over the last 4 months as i have metabolized this new road. So much confusion, so much debate to be had over this LCIS "thing" i appreciate that we are all individuals with unique backgrounds and by nature we will have different and similar approaches. Having said that I shall refer to LCIS for me as non-invasive breast cancer. I am 42 years old and the pathology report identifed two spots one of ADH and one of LCIS. I recognize that many medical professionals state that LCIS is only a marker or an increased likelihood and i agree, however you have to look at your individual situation. I did not find this lump by touch. I found this lump because i had on again off again searing nipple pain which lead me to imaging devises that identified a fibroadenoma, that we watched double in size in 12 months. I had been totally dismissed multiple time by multiple Dr's. Pain seems to be a circumstance of total insignificance and for me it should not have been. working with data and numbers has been my career for the last 15 years and now i am reading studies that lead me to so many questions but nowhere to ask. Old data and out dated research are two for me that i struggle to find confidence in. 

I have my first 6 month MRI follow up in two weeks. I don't think i am too stressed about it. But this Nipple pain has resurfaced just milder, this is what i cannot get out of my brain. Has anyone else had pain in conjunction with LCIS?

Jill

jtslg

Hi Jill!  I can't be of much help since I was only dx'd with LCIS & ALH three weeks ago.  I meet with the Oncologist tomorrow.  No nipple pain for me!  Personally, pain in my nipple would scare me.   Good luck with your follow up MRI.

DocBabs

Hello Jill, i was diagnosed with ALH and LCIS about 2,5 years ago. I've  never had any pain nor did I have any palpable mass. Mammo showed mocrocalcifiactions which were not present on previous mammos.I also have a past history of 2 fibroadenomas and I don't recall having any pain with them either.I too amd being closely followed with mri , mammo and ultrasound. Good luck with your next mri.

KellyMaryland

Hi Jill. I was diagnosed with PLCIS after an excisional biopsy for what was thought to be a fibroadenoma. I did not have the pain that you've described.  I have to agree that LCIS is controversial and a bit maddening.  Since diagnosis I've heard a variety of medical opinions about what LCIS is and isn't.  In the end, I was put on an every three month imaging schedule (which of course sometimes led to other biopsies) and the anxiety became more than I wanted to deal with and I had a preventative bilateral mastectomy two months ago.  I wish you well as you navigate this breast disease and am happy to help in any way I can.

All the best,

Kelly

msippiqueen

An evaluation from a major breast center is something to consider (if you haven't already), especially since LCIS, ADH and pain are present.



It's good you're pressing for answers. Welcome to the forum and I wish all the best for you!

leaf

Hi there!  I'm sorry you had to join this community, but I'm glad you're here.

I'm so sorry you are going through breast pain.  I wouldn't wish that on anyone.

Have you read websites such as the Mayo about breast pain?  Unfortunately, it says that breast pain is common,  and they usually can't find a cause.  http://www.mayoclinic.com/health/breast-pain/DS00760

Unfortunately, LCIS (without anything worse) is not common, so there are few studies, and what we know is often older data.   There is little that is NOT controversial about it. (One 2006 paper found about 7 times more DCIS patients than LCIS patients in their SEER-based study.)

The subject of breast cancer risk evaluation is in its infancy, to say the least, at least for an individual.  When I was trying to find out my risk of breast cancer having LCIS and nothing worse, I came across this article.  It supported what my GP thought - that we really don't know (perhaps with the exception of women with BRCA or a strong family history) WHICH individual women in a group will get breast cancer. http://jnci.oxfordjournals.org/content/98/23/1673.long   If its this hard to predict breast cancer in the general population, just think how hard it is for a small group of LCIS patients.

So we are all individuals and make our own choices.  I do not think it is ANYONE's place to judge what treatment a person chooses; I only would hope it is an informed opinion (checking out both reason and emotion, knowing a rough estimate of her risk, and her estimate of the risks and benefits of each choice.)  

Jill42_fromUtah

thank you for your comments. i ponder the thought of this road ten years ago without the gift of the internet and dwell on the gratitude that this support and knowledge is at our fingertips!

 I have joined the Huntsman Cancer center here in Salt Lake and feel for now that this is the place for me. my first appointment included the Dr outlining a discertation of my last year of imaging prior to surgery, leading up to this appointment. I was grateful that not only did she read my history she could recite it to me. I had been struggling in the past to have a DR open my folder, read my history before making medical recomendations so this was encouraging.

I so appreciate all links to studies/additional information, Leaf and you have been a great contribution. The MAYO Clinic guide to woman's cancers book sits on my desk as a reference tool to the reading i do on the internet.

thank you for the warm welcome!!

Jill

vmudrow

Hi Jill,

I live in Bountiful - haven't found anybody from Utah on here - so welcome!!  When I was diagnoised last year with ALH - I took my mom (who had breast cancer) up to the Huntsman Cancer Center - she was tested for BRCA (negative), the genetic counselor figured my risk of getting breast cancer at some point was 40%.  The surgeon sent me to an oncologist who wanted me to take Tamoxifen for 5 years.  I have had several fibroadenomas - no pain, all removed.  The surgeon said they would monitor me closely (MRIs) and anything suspicious would need to be biopsied.  I decided I didn't want the worry every time I had a MRI, and I wasn't too excited to take Tamoxifen so I asked if masectomies were an option - she said yes - so that's what I had - and I have been very pleased with the outcome.  No Tamoxifen, no mammos or MRIs and a lot less worry.  I had surgery at St. Mark's and loved my surgeon and plastic surgeon.  I was able to have nipple/skin sparing masectomies.  Let us know how your MRI turns out -

Hugs from Utah - Valerie

Jill42_fromUtah

thanks for the Utah welcome. I too consider the mastectomy. It is an option that is still on the table, even though i started tamoxifen. What was your age of ALH ?

Jill

vmudrow

Jill, I was diagnoised January 2010 at age 49 (took a few months to think about the options), and on May 6 it will have been a year since my first surgery, had the exchange surgery in October.  Let me know if you have any questions.

Breyonna

I had breast pain, but it was in the area of the lump I found.  Now I'm having pain in both breasts.  So I understand completely what you are going through.  My pain feels like something is cutting me for a few seconds and then it goes away.  It is really intense sometimes and other times it's not so bad.

Doreenanne

Valerie:  I had my pbm on 4/18/11.  Friday I go to the PS for the start of the fills. I was just wondering when you had the exchange surgery, did you have drains and how long was the surgery.  How about the recovery after exchange.

vmudrow

Doreenanne - hope you are feeling well - I did not have drains for my exchange surger.  The recovery was not bad at all - outpatient and I felt great after a couple of days - had to remind myself to take it easy - and not to lift or reach for awhile.  The fills for me were not bad at all either - good luck on Friday.

Jill42_fromUtah

Breyonna--- it is interesting about pain. I felt that the element of pain was so dismissed. I understand that the majority of breast cancer does not manifest pain, but it is hard to ignore when it is the sole reason for the discovery to begin with. I see you joined our club in May! Welcome!! There is so much confusion and debate about LCIS that i have appreciated opinions and statisitics that have been shared here, that has lead to informed decisions on my part. I am 3 months into my Tamox treatment... so far so good. Post surgery pain for me also accelerated a bit and has since leveled off. (not gone) As i have settled into this new road of mine my anxiety has reduced and left me less hyper sensitive to the aches and pains. Although Zanax has been a helpful tool as well.

Jill

jancie

Jill - I am also from Utah - Cottonwood Heights.  There is a breast cancer support group that meets on Monday evenings at IMC.  If you are interested send me a PM and I can give you details.

I totally believe in anti-anxiety drugs!