find new califications with lcis. ..very scared and concerned

chris38

I have been off this site for awhile...... its been hard living with this lcis for 2years..... recently I had my mammo and they discoverd a new finding of califacations.. I was wondering if any one has gone though this.. thanks

leaf

Yes.  They found new suspicious calcifications 1 year after my excision for  classic LCIS.  They were biopsied.  They also found some ultrasound changes at a different spot and those were biopsied a week later. I was very, very scared as the ultrasound stuff was first seen 3 months post-LCIS excision.  I had started tamoxifen 6 months prior.

Both were benign. (At my original LCIS core biopsy they said  maybe ALH along with classic LCIS, and I got slightly upgraded to 'ALH'.)

I have not had any breast issues the last 3.5 years.  I have about 6 more months to finish up my 5 years of tamoxifen.

Hang in there.

vmudrow

So is ALH before LCIS or after?

leaf

On microscope slides, ALH does not fill the lobule like LCIS does.  LCIS is sometimes described as 'marbles in a bag'.  LCIS is 'more advanced' than ALH. LCIS is thought to confer about twice the breast cancer risk that ALH does.

We don't really know the 'natural history' of ALH or LCIS, or what aspect of ALH or LCIS puts both breasts at risk.  We don't know for sure if ALH becomes LCIS; its hard to study.   But many people assume ALH, if it progresses, becomes LCIS. 

LCIS women have a higher risk of subsequent ILC than the normal population, but still, if an LCIS women does go on to get invasive breast cancer, the majority of LCIS women get IDC (not ILC). They don't understand many things about LCIS.

(My upgrade was from 'resembles aspects of ALH' to 'ALH'. This was along with my previously diagnosed LCIS.)  Sorry I was unclear.

vmudrow

leaf - thanks for the info -the oncologist did want me on Tamoxifen for 5 years for the ALH - he said it was precancerous...just his 2 cents.

Anonymous

chris----sorry about  the new findings. What are they recommending-----biopsy? Praying it is nothing more serious than LCIS.

Valerie----ALH (a precancerous condition) comes just before LCIS on the bc spectrum. LCIS is technically by its' pathology a stage 0, non-invasive, in-situ bc. (there is a great deal of controversy surrounding it--my team of physicians all call it bc, just a non-invasive type.) I took tamox for 5 years and now have bween taking evista for almost 2 years; I continue with high risk surveillance of alternating mammos and MRIs.

Anne 

chris38

Thank you all for all your posts!!!!...I have been off for awhile just dealing with life and living with LCIS.... I am really scared about this new finding.. i have been dealing with these only for 2 years because they have not find anything new si now this really puts things in a different perspective now... i see my BS tomorrow... he is going to look at the mammos himself and he will let me know if i did to do a biospy... the radiologist said they look benign and to come back in 6 months but this is how it started 2 years ago with these califications..... oh well.... AGAIN THANK YOU ALL FOR YOUR PRAYERS and understanding... chris38

sunangel27

Haven't posted here in a bit...so a little re-cap.  On Dec.9th had biopsy...found LCIS  and ALH. On Dec.22nd. Excersion (sp) ..... On Jan. 10th they took an MRI....just before sending me to have my first radiation therapy done..two days and two treatments later they tell me that I was mis-coded and didn't need rads......(the surgeon's office!)....so went for second opinion...he said no rads.....

But, they did find another spot on the MRI......so the end of Feb. or first of March I go in for MRI biopsy....they said they can't do it sooner because of the rad treatments...have to wait a month after them...         so yeah, I am a bit nervous, but reading your posts Leaf help alot...  

The oncologist also took me off the tammy until after the biopsy, he doesn't want anything to interfere... so a little break from the SE's of depression and FATIGUE!!!  but, now I am so not looking forward to going back on it afterwards....but know I have to! 

Chris I will be keeping you in my thoughts. I have only been going thru this since August of 2010. That is when they found a spot on my ultrasound that they wanted to watch...but Nov..there were two more spots.....one was LCIS. The other two atypical Hyperplasia was found.  I just don't understand that my biopsy was done 12-9,  surgery (partial mastecomy/excersion) on 12/22 and on Jan 10th another spot found......... and the wait........it just is horrible for us all.

leaf

Oh {{{chris and sunangel}}}.  Waiting is just horrible.  By the time I got to my 1st ultrasound biopsy (a week after my stereotactic, which was a year after my LCIS excision), I was getting faint-headed from the anxiety.

While, intellectually I know there are people in this world that have it a lot harder than I have (such as: one ~58 year old co-worker died 2 weeks after a brain cancer diagnosis), that doesn't still the small helpless person inside me who is very scared and frightened.  We all want to be ready for what is ahead for us.

Of course, we'll be here no matter what happens. They probably tend to err on the side of having more biopsies on LCIS women - reducing their chance of 'something worse' from 20% to something lower. In the Port paper http://www.ncbi.nlm.nih.gov/pubmed/17206485 nobody got worse than stage II.

Hang in there.  Feel free to vent.  Its awful.

vmudrow

Those with LCIS or ALH don't you just get tired of it all - I felt like I was just "waiting" to get cancer.  I decided to have masectomies instead of all the tests and biopsies and worrying and side effects from Tamoxifen.  Anybody out there do the same? 

KellyMaryland

Hi Valarie and all. I'm a week and a half out of mastectomies for (P)LCIS (thought to be more aggressive than LCIS but much unknown about it).  I too felt anxious constantly, affecting me and all of my close relationships.  After my third biopsy and upteenth imaging, my 7 year old said, "I miss my old mommy."  I'm not saying it's for everyone.  But it was for me.  No regrets, even with pain and a different looking me.  Got my final path back today: nothing invasive, nothing in situ- so very lucky! Was told this: "Your breasts had completely changed on the cellular level.  Had you not done this, you very likely would've spent a lifetime of imaging and biopsing."  Again, everyone has her own threshold of what is acceptable, doable, liveable.  These decisions are so hard and my heart goes out to anyone trying to make one.

Kelly

beacon800

I did too.  I pretty much felt like I was waiting for them to pull the rabbit out of the hat and find cancer.  I am very happy with the decision.  Kelly - glad to hear your path was so good and you are recovering well!!

vmudrow

Kelly - glad you are doing well - sounds like you made the right decision. 

beacon800 - I totally understand your feelings - glad I'm not the only one that felt that way.

Joanie207

It's been so long since I visited this site. Yes, Val, I did the same. It will be one year on March 29th that I had my PBM/DIEP in Boston. The best thing I ever did for myself was reduce my risk of bc after being diagnosed with ALH, ADH and LCIS (with some family history). I had the best plastic surgeon in the world (my opinion) and would do it all over again. I did keep a blog (http://www.breastcancermom.blogspot.com) back when I was trying to decide what to do and now with all my surgeries behind me I don't even think about bc. Every now and then I pop into this site, but that's about it. Do you all have that same sense of relief?

vmudrow

Joanie - loved your blog - very interesting and informative!!  It will be a year in May since my surgery - I agree one of the best decisions I have made.  I think I had the best plastic surgeon!! 

lucylou

Yes, I knew I could not have gone through all the testing and waiting. I had Dbl. MX last June. I feel I did the right thing for me. Not that it is an easy road, I did not do any recon. that was also right for me. You need to do whats right for you and what you can live with. I wish you the very best. Lucy

msippiqueen

100% of ILC springs fro LCIS.



LCIS is currently thought of as not only an in situ cancer (in some cases) but a marker (sometimes) for having a future invasive cancer in either breast.



Some say LCIS just sits there and is a false alarm. If you chose high risk surviellance, you are tethered to a watchful, waiting program for a long time, if you're lucky.



Almost nothing is known about LCIS, never mind how to treat it. Makes the condition a real gamble.

msippiqueen

And yes, Joanie, I have a tremendous sense of relief!



No recon either, I almost ran out of my PS consult. Not for me.



Thank God for choices! I wish everybody the very best and peace, whatever you chose.

Most importantly; I'll keep you in my prayers Chris38 and please let us know how it goes.

leaf

Deleted because I am causing anger and irritation.

msippiqueen

Calm down, leaf!



Personally speaking with a pathologist, surgeon and oncologist formed my opinion. My opinion is valid. I trust the physicians with whom I counseled. These physicians are professionally schooled and read CURRENT data. I trust them.



As you point out in an indirect way, nobody knows much about cancer. Everyones thinking evolves.



There is room for different opinions. Posting select "studies", especially outdated data, causes more misunderstanding than clarification. Facts change over time and the reader must be cautioned about trusting old data.



I'm at peace with my information and decisions.



I'll not get in a pissing match with you over this. I have an informed conclusion and you think you do.

leaf

 I Totally Respect and Honor your treatment decisions, regardless of my thoughts and opinions, yea or nay.  Many people's decisions derive not only from facts, but also trusted opinions and feelings. That is as it should be. No one should question another's treatment decisions. I certainly do not question your treatment decision.

The rest deleted because I am causing too much anger and irritation.  My apologies.

msippiqueen

I hear you leaf.



We all have difficult choices necessarily informed by our own histories. Remaining objective when the thinking evolves, sometimes right before our eyes, can make any one of us question just where the general consensus will be next!



I have paid close attention to your postings and agree with some of them. I thank you for your work that results in informative post.

ArleneMarie

HI Val and Joanie,

I also chose a preventative mastectomy afer being diagnosed with LCIS and I am FINALLY getting my exchange next week.  Yeah for me!  I also have an ongoing blog and I have had women contact me via email and phone who have been diagnosed with LCIS and don't know what to do.  My blog was my process on decision making, research and the actuality of going through the mastectomy and reconstruction process.  It is www.arleneflick.blogspot.com  Like I told those who contacted me, eventually it is your own decision as to whether or not to have a mastectomy.  For me, it was worth it to eliminate the anxiety of when I was going to get BC.  And yes....the combination of having a fantastic breast surgeon and plastic surgeon solidified my decision to move forward.  Coincidentally, two wekks prior to the December mastectomy, my sister was diagnosed with BC.  Go figure, huh?

cellis

Hi ArieneMarie and all,

ArieneMarie I am so happy that the expanding is over for you. The next step will be SO much more comfortable. I had my exchange last November and have never regretted my choice. I have since had 2 fat transfers, nipple construction and tattoo and I feel great. It has not been easy at all, but the worry is gone and I feel normal again.

For me-- with my personality, I needed to get on with life and stop worrying about BC.