Awaiting results-have questions

ann101

 I originally posted under another topic but I this belongs here-I apologize for the double post!I was diagnosed with LCIS in 2004, an incidental finding from a needle aspiration.-I have yearly mammo and bi-annual sonos-i have had core bipopsies in the past-all have been benign.Because I tested negative for the breast cancer gene, my doctor has suggested the best course of action has been careful monitoring. Recently,  two suspicious masses were found in my left breast but a core biopsy revealed stromal fibrosis.  My radiologist wanted me to have an MRI to confirm this.  Those findings revealed another mass in my right breast-and based on what they saw on the left side, a second look sono was recommended for the let side and a sono/core biopsy recommended for the right.A different radiologist did this most recent sono & core biopsy on the right (found the mass) but didn't want to do the second look on the left (he felt I should go back to the other radiologist who did the original sono)-but after consulting with my breast doctor, she said she wanted to do a surgical biopsy on the left and possibly the right (depending on the pathology report for that which I should have on Wed) so not to bother with the extra test.  I was frustrated by the refusal of the radiologist to do the second look-as I could no longer afford to go back to the other one due to my new insurance plan which began April 1st.  I explained and still he refused-this was politics, I understand...still, I found this all incredibly frustrating.  Here I am on the table and he could have easily taken a look....ah well... I will get the biopsy results on Wed.  I have managed living with LCIS really well. I get nervous with each biopsy but I have been fortunate so far....this time I am incredibly afraid....I had the two core biopsies last week on the left-and the additional one on the right; this coming Friday I go for the surgical biopsy on one or both sides.  I came here for some support and honest opinions. My first question is has anyone here had mulitple diagnosis of stromal firbrosis and than had new mass with a cancerous diagnosis? I've been wondering that if most of my findings have yielded this result, it's likely this is the same (stromal fibrosis)-although this mass is in a different breast? Second question- is has anyone had a diagnosis of stromal fibrosis, gone for a surgical biopsy, just to be sure and had a different result? Third-have any of you had LCIS for a long time, been cancer free and then been diagnosed with a malignancy? Lastly, if I am fortunate enough to learn everything is bengin, my new breast doctor wants me to meet with an oncologist to discuss medicinal preventive options. Any opinions, experiences that would be useful in my making a decision as to if I should and what drugs you feel work best in terms of side effects & results.I know these are also questions for my doctor as well but having your feedback seem very relevant to me and would be greatly appreciated. FYI, I am 58, had my first and only child at forty.  

Anonymous

anne---I posted to you under "diagnosis question"

anne

leaf

I know its really hard because there are so few of us LCIS (I assume you are classic?) and nothing worse. 

I have never had a mass, but I have had stromal fibrosis.  I had 2 breast biopsies a year after my breast excision - all were benign.  But anectdotal evidence is very poor.

In studies, its hard to find information, but in this 2007 Port et all study of LCIS and atypical hyperplasia in MRI screening (this was one of the few studies that had some specifics of each invasive breast cancer diagnosis - though didn't have info about how long it was since LCIS diagnosis):

We identified 378 patients; 126 had AH and 252 had LCIS... Cancer was detected in 6/46 (13%) MRI-generated biopsies. None of the six cancers detected on MRI were seen on recent mammogram. All six cancers were detected in five patients (one with bilateral breast cancer) with LCIS; none were detected by MRI in the AH group. Thus, cancer was detected in 5/135 (4%) of patients with LCIS undergoing MRI. The yield of MRI screening overall was cancer detection in 6/46 (13%) biopsies, 5/182 (3%) MRI- screened patients and 5/478 (1%) total MRIs done. In two additional MRI-screened patients, cancer was detected by a palpable mass in one, and on prophylactic surgery in the other and missed by all recent imaging studies. For 196 non-MRI-screened patients, 21 (11%) underwent 22 biopsies during the same period. Eight of 22 (36%) biopsies yielded cancer in seven patients. All MRI-detected cancers were stage 0–I, whereas all non-MRI cancers were stage I–II. http://www.ncbi.nlm.nih.gov/pubmed/17206485

From this site, If a woman with LCIS develops an invasive breast cancer, it doesn’t typically happen within a few years. Rather, it is more likely to happen over the long-term — in 10, 15, or 20 years or even beyond that. A woman with LCIS is considered to be at elevated risk for developing breast cancer for the rest of her life.http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp  This info is probably at least partly from this paper by  Chuba et al http://www.ncbi.nlm.nih.gov/pubmed?term=LCIS Chuba  but I can't find the reference- I thought there was a statement at one point about this on this bc.org site.

I know this is really, really tough.  Please know I am thinking of you.

beacon800

Wow, it would be good to know the time frames over which all these biopsies were performed. On first glance, these numbers are not very reassuring unless it's over a long time period.

leaf

The Port et al study was from April 1999 (when screening MRI was first performed at our institution) to July 2005,

so it was about  5.5 years.

Yippee! I found a link to the Chuba study

jco.ascopubs.org/content/23/24/5534.full.pdf  

Patients (N = 4,853) having a diagnosis of primary LCIS in the time period of 1973 to 1998 were identified using the SEER Public Use CD-ROM data. The database was then searched for patients with subsequent primary IBC <invasive breast cancer> occurrences (n =350).

(Sorry about the format; I don't know what causes some of this post to become gray.)

ann101

Thank you for all this information.  I also checked out the Chuba study and I know when I meet with the oncolgist at the end of the month, if everything is benign and it becomes a matter of careful monitoring and possible medication, I will seriously consider tamoxifen or something like that.

I can't believe this series of tests has been going on since March 18th....I will have had 4 or 5 biopsies-3 core and 1 or 2 excisions by this Friday(depending on the outcome of this last biopsy)

I think the stress of all the procedures is really wearing on me.  No matter how hard I try to stay engaged in my life around me, everything else seems to fall away and I find myself in this narrow band of anxiety.  Reading and TV helps-as I get closer to finding out-TV is better since it's completely passive.  I just have to sit there and work the remote!

I will post when I hear more.  I can't thank you enough-and the women who stopped by to read my post-with or without commenting.   It is a connection I am very grateful for.

I wish you well and am thinking of you too.

Oh, to answer your question-classic, I think.  The 2002 report found LCIS "involving surrounding breast tissue and fibroadenoma" It didn't describe it any more than that and my doctor never expanded on it. I didn't know to ask.

leaf

In the Port study, this ends up (just by using the raw numbers, I'm not a statitician) as about 0.5-1% incidence of breast cancer / year.  The Port study included DCIS as 'breast cancer' (since its stage 0.)

In the Chuba study,  the highest cumulative risk was when LCIS was diagnosed initially in the 60-69 year old age group, where they had a cumulative risk of 24.9% at 25 years - so these women would be 85-94 years old, but the sample size is very small (3 women.) 

So, again, the risk (averaged over the 25 year period) was about 1% per year for invasive breast cancer.

Of course, these are averages over the entire group; there is also the problem that many different pathologists made the diagnosis, so there may be some uncertainty and inconsistency with the diagnosis.

This is a proposed (hypothesized) pathway to go from normal to pleomorphic ILC.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783988/figure/F6/  Note their proposal doesn't include a pathway for the majority of LCIS women who go on to get invasive breast cancer eventually get IDC. Presumably (this is a total guess on my part), we don't know how the LCIS patients who go on to get IDC happens - we don't know the mechanism how this happens, and may be a different mechanism than how LCIS patients get ILC.

ann101

Thanks again.  I'm trying to learn as much as I can as quickly as I can so I'm in a better position to ask the right questions.  

I was hoping to hear something today-but I imagine by tomorrow the results will be in.  As hard as the waiting as been, today was the worst.  It's around 2AM and I'm wide awake.  

  

  

leaf

Waiting is the worst!  Know we are thinking of you.

ann101

i got the results.  What I know so far is I have 1 one centimeter tumor that is ILC.

The doctor said that the size is good news.  She will take it out on Tuesday. (Friday's surgery cancelled because she wants to study the results more with the hospital pathologist) She will also take out some lymph nodes under my right arm and take out the area already diagnosed as stromal fibrosis to make sure there is nothing else going on. A half our after I heard the news I went to a dental appt, then come home and took my son his appointments.  I felt the need for life to be normal-except it isn't.  It all feels surreal. Like i isn't really happening-except it is.

Thank you for you following my posts and for your words. For tonite,  I think I just need to cry.

leaf

Oh, Ann - I'm so very sorry! No, your life is not going the way you wanted, so its perfectly natural to cry.  We're all here holding your hand.

Anonymous

Ann----I'm so sorry it wasn't the news you were hoping for. I do want to share with you some very hopeful news. My mom had ILC many years ago (stage 1 or 2,  I can't recall)----had a lumpectomy, an ALND, radiation, and 5 years of tamoxifen. That was over 24 years ago and she has never had a recurrence and is still doing well at age 82! Although it seems really bad now, this is doable and you will get thru this.

Anne

ann101

Thank you both so much.  Anne, hearing about your mom really helps.  I'll let you know how it goes on Tues.  

WellnessWoman

Please know, Ann, that you are in my prayers.  And I believe I can speak for the group that we are all  rooting for you.  Please let us know how the surgery went, if you have the time and energy.

ann101

Thank you for your prayers.  I'm one day out of surgery.  I'm tired and sore but better with each passing hour.  The wait for the pathology report is the toughest part right now.  I'm trying not to think too much but that's hard to do. The evening of my surgery I was really out of it.  Today the morning was hard and I slept in but as the day went on I got out for a while and by dinner time I felt somewhat back to normal.  It's crazy how life goes on around you when something like this happens-I want everything to slow down for just a little while so I can catch my breath.   

Crescent5

Ann, take care of yourself. I know the hardest part of recovering from procedure is thinking about the results. And it really is wierd how everyone and everthing around us just goes on normally. Good luck.

leaf

Thinking of you, Ann, and wishing you the best possible.

WellnessWoman

Ann,

Don't forget the ice packs and the sports bra--if that's in the doctor's orders.  

The Jobst vest and buiky dressing that I had on for two days post op really helped tremendously with the pain.  I didn't even need to fill the percocet prescription.  In my case, the the bulky dressing made cold packs of no use.    But those cold packs had really diminished the discomfort  with my core biopsies.

I learned quickly to make the post-op breast a "no-jiggle zone."  The sports bra 24/7 for three weeks was also recommended.  My compliance with this has been high, having briefly experienced the consequences of not wearing this.  

Hang in there, heal up, and let us know how the biopsy turns out. 

WellnessWoman

Note, incidentally, that I corrected the above to "no-jiggle," rather than no giggles. Any pull on the surgical site seemed to be painful for especially the first week after the lumpectomy.  "Giggles" were fine, "jiggles" were quite a different story. 

leaf

Love your sense of humor, WellnessWoman!  I quite agree that breast support helps a lot, with or without giggles!  I just used my pain medication as a sleeper because I was so anxious.

Please let us know Ann, how your biopsy comes out.  Thinking of you.

Crescent5

It's also a good idea not to do jumping jacks until you're well healed. I learned that the hard way.

Good luck Ann!

iammommy

Wishing you the best. Waiting is SO very hard.  Nan

ann101

Hi Everyone,

Thank you all for your prayers, humor and support  I'm one week out of surgery and just spoke to my doctor today,  All the tissue on the left side was benign except she found more LCIS.  The tumor on the right side was smaller than 1cm.  She was surprised there were some cells in one of the two lymph nodes she took given the size of the tumor, but the amount of cells in the node was very small.  Small enough to still classify my cancer as ILC, Stage 1.  There will be Oncotype testing at which point my oncologist, who i have yet to meet, will decide on treatment. The likelihood is I will have radiation and hormone therapy.  If the Oncotype score is low, as she expects, there will be no chemo.

It's still so surreal to me how in one day,  life could change so much.  

 As for the jumping jacks-just thinking about them hurts!!!  I am looking forward to getting back to taking long walks.  

I wish you all the best.  Thank you for holding my hand.

Anonymous

ann---I'm sorry to hear the news of the ILC. Please remember the story I told you about my mom's ILC---this is doable and you will come out the other side OK!

anne

iammommy

Ann, I'm so sorry too hear this. Let's hope for the best of all possible scenarios! We're here for you. Many gentle hugs! Nan

ann101

Thanks Anne!  Your mom's story is a great inspiration.  It's one of the first things I told my mom after I gave her the news.

ann 

WellnessWoman

Hang in there, Ann.  You've been through some tough times before, and pulled through  like a trooper.  Dealing with LCIS and biopsies in the past was no doubt challenging, and your compliance with all the monitoring seems to have paid off, picking something up apparently at an early stage.  

May you continue in your healing journey--and have a blessed passover/Easter.

 

Crescent5

Shoot Ann, I'm sorry about the new finding. Wellnesswoman puts it so well. Thank goodness it was caught early.

julianna51

Hi, I was diagnosed with LCIS back in 2000.   My doctor at the time advised "watchful waiting" which I wish he would have been more direct with me but...that is all past.   I've been very good about staying on top of my mammograms and added MRI this year.   Throughout the last 10+ years I've had a couple of biopsies but nothing ever looked like a problem.   Honestly, I've never worried about it.   My doctor recommended tamoxifen a few years ago but I was too concerned with the side effects to take some thing that MIGHT keep me from getting cancer that I MIGHT not ever get.  No one could give me really good answers so I didn't.

This week, I was diagnosed with DCIS, stage 0, grade 3.   I am pretty freaked out but thankful that I've been diligent with being screened for so many years.   Honestly, I never thought that I would have a problem....maybe we all feel that way, I don't know.   Do I regret not taking Tamoxifen...I can't second guess my choices because I made what was the right choice for me at the time.

 Julie

julianna51

Whoops, that was stage 0, grade 3.   Sorry.

Anonymous

Ann, I hope you are hanging in there.  I was dx. with LCIS about 6 years ago and had mutiple needle biopsies, sterotactic biopsies and removals.  It's not easy, and it is hard to believe that others are just going on with their lives when you're waiting for results or trying to take the next steps.

  I had multiple opinions about what I should do, so I'm going to leave that to all that will give theirs and what you hear from you're doctors.  There are many options and some very difficult choices to make, and I believe if you're armed with all the right information, you can make the right decision for you-that is what is important.

  Being able to talk with others here who have had similar experiences, made a variety of choices and have given me more information than I could have imagined was out there..and believe me, I goggled everything, but it's not the same as hearing from others who have been through it-has been so helpful for me.

  Keep us posted.  I think everyone's interested in hearing how others are doing-and the support is incredibly important.  Pat