Trying to work up the courage for surgery

Hi

I wanted to weigh in with my story, which is a little different from those posted so far.

I too was diagnosed with LCIS.  I was told by my breast surgeon that he had several patients with LCIS, many who had had the diagnosis for many years, and none of them developed into invasive breast cancer.  He said he felt most comfortable with taking a wait and see approach with screening MRI's and mammograms.  He also said that I could take Tamoxifen or have a mastectomy if I wanted to, but he thought a mastectomy was way too aggressive.  I couldn't take the Tamoxifen for medical reasons, and opted to watch and wait. 

I really wanted to have the mastectomy, but was afraid of the surgery.  It nagged at me often, and five years after my LCIS diagnosis I decided that I had had enough of the worrying and stress of the "waiting," and decided to go through with the mastectomy.  I went to UCLA and spoke with the surgeon there, Helena Chaing, who agreed with my decision and wanted me to have a mammogram pre-surgery, which came out perfectly normal and showed nothing.  She then decided that I should have another MRI scan, just "to be on the safe side."  I received a call from radiology saying that there was something suspicious on the MRI scan and that I needed a biopsy.  The biopsy turned up cancer. 

So I ended up with the mastectomy that I had feared, but, unfortunately, now it was for cancer, not LCIS.  Of course, I now wish that I had had that mastectomy five years earlier when first diagnosed with the LCIS so that I would not be dealing with full blown breast cancer now.  My prognosis is still good, but it is cancer....

I know that not everyone 's LCIS turns into full blown breast cancer, but the odds are always there.

Good luck to you with whatever you decide.

Hi Cheri......my Boosom Buddy,

I wouldn't worry too much about the sentinal node excision.  From what I have heard some surgeons do it for all PBMX and some decide they only do it if something turns up on path report.  

As far as the MRI, that can also be a red herring (false positive.)  Last year, my MRI report echoed an 80-90% chance of malignancy.  It took 2 months to discover that breasts are weird and act like bad children sometimes, for reasons we don't know.  ALL 20 cores came back negative. 

It was at that moment in time, I decided that keeping the boobs intact was going to be a losing battle.  I have had biopsies for the scar tissue of the biopsies (WHAT CRAZINESS!).  I am going to consolidate my scars and stress into one zone and be done with it.

Cheri, hugs are for you.  I try to think about my dh's philosophy....I don't worry about it until I have to....it works for him!

Marie

UGH!!!!  Food for thought ladies!  

Carol...knowing the small risk of lymphedema is what puts warning flags up in my head.  I agree that a second opinion is warranted.  

Marie....my DH's philosophy is  "ok...whats the worse case scenario?" - although it works well in many of life's situations....not a huge fan of it in this arena LOL!  I'll go with your hubby's philosophy!!!

Speaking of worse case scenarios, Carol....if, say, I go with the BMX and no SNB and the patho report comes back showing malignancy - what then is the course of action typically? Chemo and rads and the nodes stay in?? (this seems kind of like a dopey question and I apologize for it in advance but this is new jargon for me)...now I'm doing the scale-tipping thing in my head - slight risk for lymphedema vs chemo and rads???? again, UGH! 

Cheri

Hi Cheri, just thought I would let you know that it isn't unusual at all to hve a SNB at the time of the Mx.

My surgeon explained that it would be remiss of him not to do it at the time of the Mx, even though he didn't suspect anything sinister.

When you undergo that surgery the sentinal node is right there, so it is prudent fo the Surgeon to take it, at that time, because they can't go in later to do a SNB after a Mx if node involvement has shown up in the final pathology. It then has to be an axillary clearance which is a bigger surgery than a SNB.

Try not to worry too much about that, I know it all seems so terrifying. All of us here understand how you are feeling, and it really does get better.

Take care!   

Thanks Cheryl!!!

I hate to be Debbie Downer, here, but 'sentinel' node biopsy is typically more than one node, and taking 5 nodes is not unusual. Lymphedema is incurable and a pain in the you-know-what. What Ariom says is true; if they do not do the sentinel node biopsy and then find cancer in the breast tissue, they have to take all of the nodes to determine if it has spread beyond the breast. Axillary clearance has a very high lymphema risk.  So, you're damned if you do/damned if you don't have the snb, but as one who got lymphedema after sentinel (5) node biopsy, I wish I had challenged the breast surgeon on her recommendation to do it. My imaging --mammos and MRIs--showed nothing, except the benign lesions whose biopsy led to my LCIS finding. The BS at my initial center, where I had all the imaging and the biopsies, recommended no need for SNB. In the end, I went to a different center for bmx so I could have it at the same time as the type of recon I wanted (not available where I live), and the BS there told me that my first BS was wrong in not suggesting the snb.  I took the advice of BS#2, and all was clear, so BS#1 had it right.  My story proves nothing about whether snb is needed with prophy mx, but it does show that there is no standard of care on this question, and I guarantee you that the breast surgeons do not even think of lymphedema when they recommend snb with prophy mx.  Their job is to save your life, of course, so that's their focus but they usually are removing breasts of women who already have a cancer diagnosis.  Were it me, I'd get another opinion on the snb, asking about whether additional imaging can be done instead, as a means of finding out if there's more than LCIS.

I have NOT had a mastectomy, so I have no input there. 

But I don't understand why your doc is more worried about your ADH proliferation than your LCIS.  (S)he probably has more information than I do, but I would be curious as to her reasoning about this.

  In this study of SEER patients (so we  probably aren't going to have a bigger population group - its most of the women in the USA), if you add up the ipsilateral and contralateral numbers, you get a total of more subsequent cancers in the LCIS group than the DCIS group.  http://www.ncbi.nlm.nih.gov/pubmed/16604564  As they point out in this article, this may be because DCIS usually has definitive surgical treatment <in other words, they normally try to get clean margins> and often DCS patients get radiation (or mastectomy), whereas LCIS women who do not get bilateral mastectomies normally do NOT get clean surgical margins nor radiation (because LCIS is normally multifocal and is often bilateral.)

Now in this study, it sounds like there was an increased incidence of advanced cancer in the younger DCIS patients, particularly the younger women of color.  But I'd be curious to find out the surgeon's thinking that (s)he is more worried about the ADH than the LCIS since LCIS is more advanced than ADH, and papers I've seen rate LCIS and DCIS as higher risk for future breast cancer than ADH or ALH.  Maybe there's a type or location of ADH that makes it more risky?  If so, I'd like to learn.

I had a nipple sparing PBMX in May of 2011. I wasn't scared until I was actually on the operating table and then I got sick and vomited. But then I was under anesthetic and it was all good. I had ALH and I just didn't want to take tamoxifin or develop breast cancer so I now have breast implants. I was looking at the breast center in New Orleans----NOLA. The doctors there can do some amazing things with the fat on ones body and make new breasts. My sister died at age 42 of BC and it was very hard to see her go from an always healthy beautiful woman, one year later walking with a walker and in a lot of pain without meds or with meds until she died next to me in her bedroom. BC is such a deadly ripoff of so many loved ones who die way to early from this life battering disease. So for me surgery wasn't scary. It didn't take courage for me it seemed like just the best smart tthing for ME to do. I wish you all the best in finding what is best for you. My avatar is a picture of my sister Kara one year before she died of IDC Stage IV BC. I miss her all the time. Every tiny little thing about her I miss.

Amy Lynn

• Hi cheri, and you are welcome.
• I agree with Carol about the fear of LE. I was very afraid of that too, but for me, I had to have the SNB. Mine was just one node, but the fear of the pssibility of having to have the clearance done later, was enough to make it a no brainer for me.
• My Mother had a Radical Mx in '94, and she got LE after her clearance, so it wasn't something I wanted to risk. She managed with it, but it was always a problem for her.
• I was careful with the exercises too, I didn't lift above my head for 10days, but did all the other range of motion stuff three times a day, with one lot always done in the shower with the hot water running over my back and arm.  
• Sorry about these dot points, I don't know how to turn them off.LOL
• Take care Cheri, you'll do fine, please let us know how you are doing.

Amy Lynn...I admire your decision and I am deeply sorry for your loss.

Carol - I will definately research the website. Thank you so much for posting it and I am also going to be mentioning the study to my BS.

Thanks, Cheri!  I didn't realize that speed could be part of  the equation.  If you learn more, I hope you will share the info, because I love learning more!  Thank you again.

Does your aunt have lobular carcinoma in situ (LCIS) or invasive lobular carcinoma (ILC)?   

LCIS is very hard to study and its also weird.  Just about everything concerning LCIS (including the name) is controversial.

LCIS is not RELIABLY seen on any imaging.  In this study, MRI was the best, with it detecting some abnormality in 86% of patients. http://www.ncbi.nlm.nih.gov/pubmed/23498988   But when they find LCIS, they sometimes find that LCIS is not at the lesion that prompted the biopsy, but adjacent to the lesion. http://www.ncbi.nlm.nih.gov/pubmed/11161169 So the MRI may not be actually seeing the LCIS, just the lesion that alerted them that something may be wrong.  LCIS is usually multifocal (occurs in many spots in one breast.)  They know this because when they do mastectomies and look at the specimens, they can find multiple LCIS spots that were not previously detected.  LCIS often (though not always) is also bilateral - in both breasts.

  But it doesn't really matter where you have multiple spots of LCIS. Once they're fairly sure you 'just' have LCIS and nothing worse - i.e. have an excision and have 'stable' imaging for months/years, they find that women with a history of LCIS who subsequently get DCIS or invasive cancer often get the DCIS or invasive cancer at areas that looked totally NORMAL on imaging. (For example, I have never had a breast MRI.  They diagnosed my classic LCIS in late 2005.  If I had synchronous invasive breast cancer in 2005 when they diagnosed my LCS, it probably would have become symptomatic  or detectable by mammography by now, 8 years later. )

They think some LCIS lesions do have the capability to actually become invasive breast cancer (because in some women they have found synchronous LCIS and ILC that are clonally related), but most LCIS is NOT clonally related to any subsequent DCIS or invasive breast cancers.  http://www.ncbi.nlm.nih.gov/pubmed/17380381

That's why they say that LCIS is a marker for an increased risk of breast cancer, but some small LCIS spots may have the ability to be a precursor to become invasive breast cancer.  They usually term this situation a 'nonobligate precursor' - meaning that most LCIS spots just stay LCIS spots, and never become DCIS or invasive cancer.  However, it looks like a small number of LCIS spots may themselves become breast cancer. 

No, you don't have to have a mastectomy for LCIS.  The usual choices are:

a) Watchful waiting

b) Watchful waiting + antihormonals (antiestrogens), such as tamoxifen

c) Bilateral mastectomies

http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5

There is no choice that is best for all women.  Some women cannot have or choose not to have one option or another. 

Some women can't stand the anxiety of the increased risk of breast cancer with watchful waiting.  The rationale of watchful waiting is to try to catch breast cancer (if it happens) in its earliest stages.   They do not really know the risk of breast cancer in women with classic LCIS, but its probably somewhere between 10% and 60% lifetime incidence.  (I know that's a big range.) (PLCIS - pleomorphic LCIS- is probably more agressive than this.)  If you have other risk factors, such as a significant family history, or a history of chest radiation treatment (such as for Hodgkin's lymphoma)  which may significantly increase your risk for breast cancer.

Some women can't stand the actual or potential side effects of antiestrogens, such as tamoxifen.  There is an increased incidence of stroke or blood clots, and endometrial cancer with tamoxifen.  Some people's personal or family history may play a part here.

For either of the two above groups, some women may tolerate the above choices well, but they may be afraid that if they do get breast cancer that it might involve treatment with radiation (which puts you at increased risk of heart damage), skin damage which can also hinder breast reconstruction if that is desired, and/or they don't want to face the very real risks of some chemotherapies.

Some women can't stand the thought of mastectomies: Reconstruction may or may not be problematic, breast sensation is lost, and there is the risk of lymphedema or chronic pain or other surgical consequences.  Some women do absolutely fine after bilateral mastectomies, and some women not so much.

I hope I've presented several viewpoints fairly: I hope others will correct me or add helpful information if needed.

I have scheduled BPM with TE and silicone implants in one month. I have wrestled with this for many years but after over 30 years of biopsies, strong family history, LCIS, ADh both breasts found in core biopsies 3 of the last 5 years I have decided to get off the roller coaster. I read a quote recently that sums it up for me. "I do not want cancer to make the decision for me to remove my breasts. I want the decision to be made by me."  I also know of too many women who have gone through a cancer diagnosis, surgery, chemo/radiation and then have a recurrence down the line. I feel fortunate and at peace to be able to make this decision and my BS who I have been seeing for 20+ years supports my decision. That doesn t mean I'm not  anxious at times about it all  because I am. I am planning to have SNB on one side. Everyone must come to their own decision in their own time. That time  has come for me. Good luck to all who are undecided. You will make the right decision for you. 

Mary! Good for you!

We all have to make the decision that is right for us and our circumstances.

I for one couldn't be happier with my decision, and haven't looked back. It certainly wouldn't suit everyone, but for me, absolutely right.

You won't know yourself once that fear is lifted. I have to say this whole journey has changed me forever, but not in a bad way, just a subtle shift to whatis the "New Normal"

I wish you all the very best, and would love to hear how you are doing!

Praying for you, Mary. Keep that positive attitude. You WILL do great and everything will be fine.