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Topic: Considering PBM

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Sep 27, 2007 05:41PM - edited Sep 27, 2007 05:41PM by Peaches70

Peaches70 wrote:

I was only diagnosed  with LCIS this past February, after having found ALH last year. I went on Evista in April. In August, after mammo found a new area of microcalcifications, I had my 4th biopsy in 2 years. Fortunately, it was B9. However, I am now on a 6 month schedule for mammo, with yearly MRI. I am beginning to consider PBMs next summer. I haven't discussed this with my BS or onc yet, but there is no one in my life with whom I can discuss this. So I come here. I think about this because when I come up with a list of Pros and Cons, I can't think of many Cons. Maybe somebody else here can.

First, even though I am (as the BS puts it) "under a microscope", I do not feel comforted. I don't want to find the cancer early - I don't want to get it at all. If I have PBMs, I may not have to go through radiation or chemo, and I may have more options for reconstruction and better results, easier recovery, etc. By some tools, my risk is as high as 85% over my lifetime. If I can cut that risk way down to nearly nothing, my stress will be much reduced.

Next, the anxiety I feel prior to each mammo would be ended. I would stop grinding my teeth in my sleep - when I can get to sleep.

The side effects of the Evista and the Effexor (which is necessary due to the increased hot flashes) would end. I am concerned about the long term effects of my dry mouth, dry eyes, dry vagina, and chronic constipation, bloating and gas. I already have a family history of intestinal track problems as well as having had some personal episodes of IBS. I don't want to develop other health issues due to this. I am also somewhat concerned about the risks involved with the medication.

Once the breast cancer risk is down, I could resume taking low dose Estrogen for the hot flashes that have made the last 3 1/2 years so uncomfortable.

And finally, the time and expense of the travel and co-pays for tests and biopsies and for prescriptions would be cut immensely.

Any thoughts?

Anne

Dx 1/25/2007, LCIS, Stage 0
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Sep 27, 2007 07:10PM awb wrote:

Peaches----Reading your post really made me stop and think. Aside from a very few differences between our situations,  your post could've been written by me.  Having met you in person only makes it more real to me. But it also reminds me I'm not alone in this and I hope it does that for you, too.  Post or e-mail me anytime--I know exactly how this living with high risk from LCIS feels.

In fact, I'm having bilateral breast ultrasounds  in the am to further investigate 2 "spots" they saw on the MRI I had 2 weeks ago--one on each side this year. Oncologist feels  they are "97% benign", but knows the anxiety I feel with the "watch and wait" routine, so he's letting me go for the US. I thought I'd really have to push for the US, but he readily offered. So even though I know that the areas are "probably nothing--false findings", good results will go a long way in giving me peace of mind. If it is indeed something, then I will deal with it as it comes. Onc has talked about arimidex in the past, now says maybe nothing after finishing up the full 5 years of tamox (next October), but pcp says he thinks he will put me on Evista with all the new studies coming out.  Then I will have a lot of questions for you! Not too sure how I feel about another daily medication for 5 years, especially with the potential for more SEs, but at least I would have the protection against osteoporosis.

Please say a little prayer for me. 

 I'll let you know how it goes.

Anne 

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Sep 27, 2007 09:55PM ophelia wrote:

Peaches, I too have be dx w/ LCIS this July and prev. had AHP on same side. My mom has had stage 4 BC at age 69.  I will be having another biopsy on 10/26 Dr. wants to check further.  I have very dense breasts  and do not feel that I would be fortunate enough to have early detection. Also, I have been on tamox. for 3 years and Onc. is not sure if its working or not. I absolutely hate taking the stuff.  I've gained weight, have lost 1/2 the hair on my head and have already had a uterine polyp.  can't wait to  stop taking this stuff. I have spoken to a bs surgeon and asked her if my results belonged to her would she be considering a PBM. She responded "absolutely".  That was all I needed to hear.  I was already considering it but that just brought it home for me. I have appts set up for oct. w/ 2 PS for Diep  reconstruction immed. following the mast.  If all goes well I'm hoping to be done sometime in December.  It's been agonizing making this decision but I can't sit around waiting for what I believe is inevitable. In my opinion there are more Pro's then Con's.  I'm not afraid of the PBM but the reconstruction is daunting.

Good luck to you. I'm sure you'll make the decision that's best for you.  I continue to pray for guidance and I honestly feel that I am doing the right thing.  Feel free to email me if you want to discuss further. maria.costa@charter.net

God Bless!!!

Maria Dx LCIS, Stage 0, 0/2 nodes
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Sep 28, 2007 02:13PM - edited Sep 28, 2007 02:13PM by leaf

I am so sorry for my LCIS sisters.

Well, I think you've probably read enough of my posts to know where I stand (at least for me.)
As you probably know, I was interested in PBMs *before* my excision (confirming my LCIS diagnosis) and still am.

I just have some psych issues to deal with, or I'd have made more progress in this. But my surgeon is very much against it, and my 2nd opinion at a Major University would not advise it.

I think my doctors must live on another planet compared to you, my fellow sisters.

This is a rhetorical question, but why do your doctors have such a different attitude than mine? I haven't had 4 biopsies in 2 years, but I did have (including the diagnostic biopsy and excisions) 3 biopsies and 1 excision in 13 months. I think the data from the Port study indicated that the LCIS women who got bc did not necessarily have a worse family history than normal (2 had a 1st degree family history, 1 had an unknown family history, and 9 others had a negative family history defined as 1st degree relative) in her study.

Playing the devil's advocate against PBMs:

I guess there may be a finite risk of lymphedema, though it must be very low since they aren't digging out your lymph nodes. If you have a SNB, then even with 1 node there is a very small but finite risk, if I understand correctly.

Of course I imagine there must be the dealing with you can't always wear the same clothes if you go in for low cut things) or a different wardrobe, like for bathing suits.

There will be the lack of feeling.

If you get reconstruction, there is the risk of the flap failing.

There is always the risk of getting infected, and I guess the risk is greater if you have extensive surgery. Bacteria are more resistant now, so infections are often much more difficult now, and there are some infections that are not curable.

There is the concern about acceptance by a significant other, and the concern if you do not have a significant other if this will influence their decision to be your significant other.

I'm sure I've left out things, or said them wrong.

But, when I get the response - 'I do not recommend that' or "I wouldn't do that', I'd like them be in my shoes with my background and see how they feel.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2007 12:32PM Peaches70 wrote:

So far, I have not heard of anyone who got PBMs regretting it. I'm not sure if that's because, having made the decision, they chose not to look back. I did, however, talk with someone who regretted NOT having gotten a PM before she got cancer in her second breast. I have also read (here) of many people who, having gone ahead with the PM/PBMs, found out that they, in fact, already had cancer that was undetected. I guess that is one more factor on the PRO side.

And, my last biopsy was extremely painful. I had repercussions in my neck for weeks afterwards, in addition to my breast hurting for two days when I walked around. I have had several degenerated disks, arthritis, and other issues with my neck for years. I am on daily doses of Celebrex to keep the pain to a minimum. The spasms in my neck and jaw were so bad, I was in tears. That makes me even more leary about going through this "close monitoring". I dread having to go through another SCNB - I don't think I can face it without some serious drugs.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Sep 29, 2007 03:56PM - edited Sep 29, 2007 03:56PM by leaf

I'm so sorry, Peaches70. That sounds not only was the procedure emotionally traumatic, it was also physically traumatic to your neck. How good can that be?

Having read some stuff about neck surgery patients who have had problems for years, I do not want to imagine what you have gone through. I just went through prophylactic neck surgery, and though my pain was minor, the pain meds did *not* seem to touch it. I cannot fathom how people with real neck issues cope with their situation.

This study may give an idea how a larger sample felt about PBMs. Unfortunately, these were people with a strong family history, so probably had either BRCA or an undiscovered breast cancer gene mutation.

But regardless of what a study says, it CANNOT predict how you will feel. Only you can know how you feel, no matter how many people feel similarly or differently. I think it is *extremely* important to honor and respect each person's feelings.

A cousin, who does not like the idea of me considering PBMs, said a friend had them and was dissappointed. But the problem with that is that she was not respecting my feelings.

This study shows that most women *are* satisfied with their PBMs, and this was a mean of 14.5 years down the line.

Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy.

Frost MH, Schaid DJ, Sellers TA, Slezak JM, Arnold PG, Woods JE, Petty PM, Johnson JL, Sitta DL, McDonnell SK, Rummans TA, Jenkins RB, Sloan JA, Hartmann LC.
Division of Medical Oncology, Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA.
CONTEXT: Prophylactic mastectomy is a preventive option for women who wish to reduce their risk of breast cancer. There has been concern about possible negative psychological sequelae following this procedure. However, few data are available regarding long-term satisfaction and psychological and social function following this procedure. OBJECTIVE: To evaluate patients' long-term satisfaction and psychological and social function following prophylactic mastectomy. DESIGN, SETTING, AND PARTICIPANTS: Descriptive study of all women known to be alive (n = 609) who had a family history of breast cancer and elected to undergo bilateral prophylactic mastectomy at a large, tertiary US health care clinic between 1960 and 1993, 94% (n = 572) of whom completed a study questionnaire. MAIN OUTCOME MEASURES: Satisfaction with procedure and effects on psychological and social function, based on responses to the study-specific questionnaire. RESULTS: Mean time from prophylactic mastectomy to last follow-up was 14.5 years. Most women (70%) were satisfied with the procedure; 11% were neutral; and 19% were dissatisfied. Among the psychological and social variables, the most striking finding was that 74% reported a diminished level of emotional concern about developing breast cancer. The majority of women reported no change/favorable effects in levels of emotional stability (68%/23%), level of stress (58%/28%), self-esteem (69%/13%), sexual relationships (73%/4%), and feelings of femininity (67%/8%). Forty-eight percent reported no change in their level of satisfaction with body appearance; 16% reported favorable effects. However, 9%, 14%, 18%, 23%, 25%, and 36% reported negative effects in these 6 variables, respectively. CONCLUSIONS: This study suggests that positive outcomes following prophylactic mastectomy include decreased emotional concern about developing breast cancer and generally favorable psychological and social outcomes. These must be weighed against the irreversibility of the decision, potential problems with implants and reconstructive surgery, and occurrence of adverse psychological and social outcomes in some women. JAMA. 2000;284:319-324 http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10891963&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 2, 2007 06:34AM - edited Oct 2, 2007 06:34AM by lvtwoqlt

I did not hav LCIS but after 2 biopsies/lumpectomies for ADH in 2 years my surgeon suggested PBM. I was on the 6 month mammo since Jan 05 first problem in the left, Aug 06 problem in right. I discussed the PBM with my spouse and we decided that if I had one more abnormal mammo, the boobs were history. This past April problem in right again. the biopsy (third one in 30 months) showed DCIS. I am happy with my decision 4 months post surgery. It is a very personal decision.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Oct 4, 2007 05:33AM csp wrote:

Hi ladies,

I was just dx'd multi focal LCIS last Thurdsay. I have  had 3 wide excisionals in 1 1/2 years.  First it was ALH & ADH same breast, then ALH and this time the LCIS and ALH, ADH with microcalcifications.

 I have first degree family history. My sister was dx'd IDC with vascular invasion 2 years ago. Maybe I know too much and have read too much , I don't know, but I do not want to wait and see!

 Every time I find a lump I feel like a ticking time bomb.

This has been a very emotional scarey year and a half for me.

I have been on the 6 month schedule since the first excisional

and have had to have surgery almost on the same schedule, so I

dread the mammo each time. As for me I'm done. I want to do

what ever I can to avoid an invasive cancer.

I am tired of being frighten , wondering if there is more crap

lurking in there, fighting my insurance company for an MRI,

( I was denied twice) getting a wire or needle stuck in my breast the recovery from the excisionals.

I like you Anne, am not finding too many reasons not to have a PBM

The thought of the surgery scares the Hell out of me and yes I know but losing my breast scares me .  The alternative . Keeping my breast and doing this careful watch for life most likely more biopsies hormone therapy, being worried every time I have another abnormal mammo, waiting in that stupid room while the radioligist calls you in for more views and then after all the careful watch at what point do you say thats it ! That magic time before IT is invasive when you have had a chance to get it before IT IS INVASIVE.

For me, the time is now.

Hugs,

Carrie

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right
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Oct 4, 2007 08:50AM - edited Oct 4, 2007 08:50AM by lvtwoqlt

Carrie, I know exactly what you are talking about. After my 3rd abnormal mammo in 30 months I told my surgeon 'I want these ticking time-boobs off!' My mom is a 6 year survivor and her sister died of ovarian cancer at the age of 37, so I had the family history also.

Yes the thought of major surgery scared me and the thoughts of removing both breasts scared me, but the relief that I feel since the surgery is worth going through with it. I was tired of the 6 month roller-coaster ride, going for mammos, waiting in the room for them to say we need more views or you need to see your surgeon ASAP, the stero biopsy, excisional biopsy, and so on. I did not want to give this beast a chance to become invasive.

The final path report showed additional ADH in each breast that did not show up suspicious on the mammo. I am glad that I did what I did.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Oct 4, 2007 08:54AM rsimon wrote:

I had LCIS about 3 years ago and opted for bilateral Mastectomy without Reconstruction.  I am 58 now and had spent 30 years having multiple bad mammograms, ultrasounds, biopsies (back when they put you out with a general), and a LOT of stress.  It just wasn't worth it anymore.  Both breasts had scars, one was half the size of the other due to surgeries.  It was the best thing I did.. the easiest surgery I've ever had (I also had a hysterectomy when I was 32).  No more mammograms, no more stress.   Do what you need to do. I know how hard living with the fear can be.  

Best of luck to you ,

Ricki

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Oct 4, 2007 10:01AM - edited Oct 4, 2007 10:09AM by csp

Ricki and Sheila,

I will most likely have about a zillion questions as I move forward with this. My Dr. is scheduling me with  a Onc and a Radiologist.

I am waiting for the call back. I really needed to hear what you all have said.  I find it very comforting that others know just what I feel too ! 

 Anne I am saying more than a little prayer for you. I so understand. Sending you gentle hugs and prayers that you will be able to come to a decision that is right for you too.

Hugs,

Carrie

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right
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Oct 5, 2007 05:41AM - edited Oct 5, 2007 05:51AM by leaf

I am so sorry you are going through this.

The 2 breast surgeons, one at a Major University, have been extremely unsupportive of PBMs for my LCIS + ALH. The rads have not even followed screening recommendations for *normal* women (recommending I wait 1.5 years for the next mammo of my L breast.) I am completely disgusted with their recommendations.

I will be having a discussion with my onc, who I trust a lot more than my bs or rads. This shows how little I trust the rads and bs, not how much I trust my onc.

I just want you to be prepared for this, in case our doctors live on the same planet :-(.

I want this decision process to be as good as possible for you, under very difficult circumstances.

Your doctors do not have to live with your decision. You do. Your feelings and thoughts deserve the utmost respect.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 5, 2007 06:01AM - edited Oct 8, 2007 10:37AM by leaf

And to Peaches70: I thought I was under ongoing 6mo mammos and us for the ongoing future when I was diagnosed with LCIS in 1-06.

I found out last month that nooo: after a negative biopsy, they do a followup in 6 mo. If the 6 mo followup is clean, they return to yearly mammos.

From the Port study, it sounds like LCIS women at Sloan-Kettering get yearly mammos and biannual clinical exams. That's it (at least by the time the Port paper was written.)

They seem to think my mind should be at ease.

They are utterly wrong.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 5, 2007 12:14PM somethinelse wrote:

I just recently had PBM 8-6-07 due to my dx. of LCIS,ADH,ALH and family hx.  I was dx nov. 06 after a surgical bx. w/LCIS, then 3 mos later had MRI which led to more testing, another mammo and bx again, 2 fine needle aspirations.  After all that I wanted off this roller coaster immediatly.  I ended up going to another BS/oncologist to get another opinion and was given 2 options go on tamox. with close monitoring or PBM. The 2 docs I saw both basicaly said the same thing, did not try to talk me into PBM, left that decision up to me.  I chose the PBM and am glad i did- I did not want to go on tamox. (i am the side effect Queen).  The mast. itself was not bad at all- I am in the process of reconstruction with expanders and this is an uncomfortable process, but doable.  If you have any questions please feel free to PM me anytime.  susan

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Oct 6, 2007 03:51PM Peaches70 wrote:

Carrie, your experience is very familiar. I believe you made the right decision. I am not afraid to lose my breasts; I do plan to have reconstruction if/when I do go ahead with it.

Leaf, I am sorry that you have been denied the type of care that you deserve. Even tho' my last biop was B9, my BS told me 6 months for the next mammo. I'm glad...and not. Regardless of the result, I will still be considering the PBMs.

Ricki, your experience is what I want to avoid. Years of biopsies - surgical or not - is not what I want.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Oct 7, 2007 07:16PM csp wrote:

Anne,

I go to the Oncologist the 24th and am anxious to get started and get this behind me. I also worry what else might be lurking in there,

I can't help it.

Leaf , I'm not a stranger to getting resistance from the Medical field

matter of fact the Radiologist questioned my Surgeon  about doing this past surgery. The radiologist wanted to do the lets watch it for 6 months !  I swear my head may pop off if I get any grief from them.

Carrie

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right
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Oct 8, 2007 09:53AM - edited Oct 8, 2007 09:53AM by lvtwoqlt

Leaf,

After my first abnormal mammo/biopsy of ADH, I had 2 - 6 month mammos that were clear. When I was going for my next mammo (18 months after first dx) my insurance would not pay for it becase too close together, My surgeon left it up to me to do 6 month or go back to yearly. I told him I wanted to stay on the 6 month and pay for them myself just for peace of mind. that mammo showed micro calc/adh on other breast. Surgeon suggested PBM at that time.

sometimes we have to be our own best advocate.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Oct 13, 2007 09:19PM LCISgirl wrote:

I'm new ~ just dx with extensive LCIS first with stereotactic biopsy (after routine screening mammo), then wire localization excisional biopsy & core needle biopsy of right breast.  After the stereo bx I had an MRI that looked "markedly abnormal and suggestive of invasive disease".  With surgical excision (4 cm) in one quarter of breast and core biopsy (3 of 5 cores) in other quarter, the dx came back as extensive LCIS.  The report also says "extending into the duct epithelium"  That sounds like it could be close to becoming invasive??? I've been reading everything and strongly considering Bi-lateral mastectomy, but I'm concerned that with dx of LCIS the insurance might not approve that aggressive approach?  Any thoughts or experience with this?  I have had 2 surgeons tell me it is an option.  I almost felt sad that the decision for mastectomy wasn't "forced" on me, because it's just so hard to watch/wait.  Just my 2 cents here and any advice or thoughts are so welcome.

 Thanks ~ LCISgirl 

"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Oct 14, 2007 11:48AM - edited Oct 19, 2007 07:59AM by leaf

Hi LCISgirl- I'm so sorry you had to join us, but Welcome to our newly founded LCIS forum!
I got diagnosed with LCIS after a routine mammo (for 'suspicious calcifications", stereotactic biopsy, wire localization, and surgical excision.

They never used the words 'extensive' on me, but from what I've read, your bc risk does not depend on the extent of your LCIS. I think that even if you have LCIS in one spot in one breast, and no where else, *BOTH* breasts are at risk for bc. But most LCIS is multifocal, and a good portion is bilateral. (They know this because up until about 1990, the standard treatment for LCIS was bilat mast.) Often times LCIS is *near to* but not *at* the 'area of concern'.

I also have LCIS 'with pagetoid spread into the ducts', and ALH.

10-19 Edit: I just found out that lobular cells apparently look different that duct cells: I believe they originate embryologically from different tissues.

As far as I know, having pagetoid spread into the ducts doesn't mean you have invasive bc. Edit: Invasive cancer means that the cancer cells have broken through the 'basement membrane'. However, I think it is possible to have 'micrometastases' at least with some cases of DCIS, and of course invasive.
I think the general consensus now is that LCIS is a marker of a higher risk for breast cancer, and in some unknown, small portion of cases, may, in addition, be a precursor for bc. (They think this from genetics studies and incidence studies. There seems to be more cases of invasive bc in the breast that has proven LCIS, though the studies I've seen say the bc risk between the 2 breasts ranges from about 50-50 to 30-70% (excluding the few cases of bilateral bc in LCIS women.) Many women with LCIS do *not* get bc, though getting an idea of *your* risk is really difficult.

I don't know what your insurance will or will not approve. The new ACS (American Cancer Society) MRI guidelines give you a solid 'maybe'. IMHO, that ACS paper is self-inconsistent for LCIS women. caonline.amcancersoc.org/cgi/c...

Personally, I am very interested in PBMs. I have a weak family history. My bs is not interested. At my first visit to my bs (before my surgical excision that verified the LCIS diagnosis) she said "If you want bilateral mastectomies, I will fall over in a chair." Needless to say, I don't get along with her. She did not, at that point, know anything about my family history.

I think in any event, most bs will not consider PBMs unless the patient waits for several months to make sure that is what she wants.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 14, 2007 12:49PM LCISgirl wrote:

Thank you for your insights Leaf!! IMHO I'd much rather remove all the tissue and not wait to see "if" it becomes invasive.  Avoiding hormonal therapy (tamoxifen), radiation & or chemo is my goal.  I'm finding that when I read the reports that LCIS is "Not cancer"....I get upset!!!  I guess I just don't like to take chances.  I hope the women who have to deal with much more serious/invasive issues don't think I'm being silly.  I'm kind of surprised that docs would discourage the mastectomies since I'm sure they see the difficult therapies other ladies have to go through.  Wouldn't it be better to avoid all that??  Ahhhh....these decisions are hard. 

I appreciate that you've shared your experience.  I'd be interested to hear how you're doing and if you make the decision for PBM in the future.

Take care~ 

LCISgirl 

"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Oct 15, 2007 10:23AM - edited Oct 15, 2007 10:26AM by leaf

I do **NOT** think you are being silly. I, for one, am scared to death of bc. When I go for my screening, I'm afraid they aren't screening me enough, and if they are, did they miss something.

I am really angry at my bs for not being open to *my* feelings.

I have other issues I have to deal with before I make a decision about PBMs, which will probably take me years. Then I will have to find a surgeon who will do them. So I expect to be on this board for some time...

Luckily, unlike our bc sisters, we usually have some time to decide.

One of the many reasons why I am interested in PBMs is that I have a very, very shallow support system. For example, if I got bc and couldn't drive or otherwise get to my treatments, I probably couldn't get transport there. It took major finaggling to get 2 co workers to take me home after my last operation (which was not breast related.) My facility does not allow you to take a taxi or hire a medical transport company to take you home after a surgery.

I was diagnosed 1-06, I've been on tamoxifen since 7-06, and had 2 biopsies 2-07 (while on tamoxifen). I never want to go through that drill again. One of the biopsies was because they 'may have mislabeled your ultrasound as scar tissue', and this potential error was missed by 2 sonographers, 3 visits to the bs, and 2 radiologists. I was terrified I could have had ILC that had been totally evident by us for 9 months. The biopsy was read as consistent with scar tissue, and DH (not atypical.)

It so helps me to know that others are going through these decisions too....

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 16, 2007 04:45AM csp wrote:

LCISgirl,

I don't think any of the women that have a much more invasive/serious issues think any of us wanting to stop this in it's track is being silly at all ! My experience has been tons of support

from the other ladies and one of them being my sister. I too was just dx'd a couple of weeks ago, and from the get go I want a bilat. I have

multi focal LCIS w/ ALH and ADH and  as one lady put it a hodge podge of other cell changes going on. This was my 3rd biopsy.

I want off the biopsy merry- go- round !

I feel everything you are feeling, worried I am going to have a fight

with my insurance company, wishing they would have insisted on a

PBM . Explaining to my family if it is not invasive why do you want

the bilat.  To me it is obvious. I 'm scared and I want it out.

I go see the oncologist on the 24th. My doctor said we need to satisfy the Insurance company so they pay. Good grief !!!

Hugs,

Carrie

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right
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Oct 16, 2007 06:52AM LCISgirl wrote:

Thanks Carrie for your reply, it does help knowing that there are others out there who understand what I'm going through.  So far, every friend & family member has been of the same mind-set "Be aggressive, why wait & worry?"  I see the oncologist today.  I saw him before the surgical bx, but at that time we were talking in vague "what ifs" terms.  Todays visit will be specific based on the pathology & er/pr results. I am curious what his recommendation will be.  I then go back to surgeon in a week, so in the meantime I'm on this board and online reading everything!  I'm curious if your dx is bilateral or all in one breast?  When you had your first biopsy was it LCIS then or beginning with some of the other stuff and progressing with time??  Or were all three biopsies on different areas etc??  I'm sorry for all the questions....it just helps me to understand what others go through and a bit about how this develops in others.  I don't have any of the other dx ALH or ADH, but in the other breast have calcifications and an intraductal papilloma which is dx as benign....I'm a bit nervous about that too, since lobular's risk is bilateral.  I'll be thinking about you as you have tough decisions to make too.  Can I ask your age?  I'm 50...so relatively young :)

I hope you continue to let us know what develops. I'll be so curious to find out how your docs/insurance etc...deals with your request for PBM.  I'll check back often and maybe we might have interesting insights that could help each other on this journey.  It sure is a welcome thing to have someone in the same stage, mind set (sorry you're here though!!) 

Take Care~

LCISgirl

"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Oct 16, 2007 07:17AM LCISgirl wrote:

 Sorry Carrie....I just read your other post above that answered my questions about your dx.   I agree with you about not

wanting the stress and multiple biopsies.  My needle localization bx went very well, the worst part was the mammo/wire placement etc...but I don't relish the idea of doing it ever again!!

Keep us posted!

LCISgirl

"I have set before you life & death, blessings & curses, positive & negative; therefore God says choose life" Deuteronomy 30:19 Dx 12/2007, ILC, Stage I, Grade 1, 0/4 nodes, ER+/PR+
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Oct 16, 2007 10:33AM csp wrote:

LCISgirl,

They never told me what  er/pr results were? hmm maybe the onc will ? I am 49 and started this when I was 48. My sister was dx'd at

46. I don't want any more wired needles or bx surgeries either !!

 The surgery sites are all in the upper outer quadrant of my left breast. I go back to the surgeon  in 2 weeks. I will keep you posted and I will be looking for you too. It is nice as you said to have someone understand . I do have some family that is on board , but  my daughters are concerned because I want to  be aggressive. They are young 25 and 30 . I forget they don't know all that I know about

breast cancer. I assumed they would be behind me with no doubts

because of all that family members have been through including my sister.

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right
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Oct 17, 2007 04:28PM nevaeh wrote:

New here and seeking guidance and advice

DX Stage 1, 1.5cm ILC with LCIS, ER+ PR- HER2-, BRAC -, waiting on Oncontype dx, mother twice age 36 and 41, 3 of 4 sisters, dense breasts, age 55, post-menopause, LCIS left after re-excision

I cannot make heads or tails out of the information about LCIS or how to calculate my risk factors for recurrence.  Trying to decide on the path to keep this little "boobie" or do PBM

One part of me says take the conservative route that will incur possible chemo, for sure: radiation and hormonal treatment; another says get some new perky little guys that won't give me worry or pain.

How in the heck is a person to decide this?  What can we ask of science and our doctors.

My husband says take conservative route; my brother and others say, it's not worth the risk.  I am so very confused.

TIA for any insight.  My prayers to all. 

Look Well to This Day and Trust in God Dx 8/1/2007, ILC, Stage I, 0/1 nodes, ER+/PR-, HER2-
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Oct 17, 2007 05:56PM awb wrote:

Your situation is  actually very different from LCIS by itself (stage 0, non-invasive bc), since you also have the invasive type---ILC. Your overall risk will be determined more by that than the LCIS, but by having LCIS both breasts are at equal risk.  I would have a long discussion with your oncologist who should be able to help determine your individual risk and treatment options. When you had the BRCA testing, did you speak with a genetic counselor? (sounds like you have a very strong family history despite testing negative, so something else genetic could be going on). Good luck with whatever you decide--but make sure you always make your decisions out of knowledge, not fear.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Oct 19, 2007 08:25AM - edited Oct 19, 2007 09:40AM by leaf

I agree with awb that LCIS with ILC is probably a different story than LCIS alone. Your Oncontype dx will give you some numbers with which to help you make a decision.

There may be some controversy about PBMs in women with ILC and LCIS (diagnosed at the same time.)
This 2006 paper found a 14% recurrance in women with IBC + LCIS and a 7% with IBC alone.

Int J Radiat Oncol Biol Phys. 2006 Oct 1;66(2):365-71. Links The impact of lobular carcinoma in situ in association with invasive breast cancer on the rate of local recurrence in patients with early-stage breast cancer treated with breast-conserving therapy.

Jolly S, Kestin LL, Goldstein NS, Vicini FA. Department of Radiation Oncology, William Beaumont Hospital, Royal Oak, MI 48073, USA. PURPOSE: The significance of lobular carcinoma in situ (LCIS) associated with invasive breast cancer in patients undergoing breast-conserving therapy (BCT) remains controversial. We examined the impact of the presence and extent of LCIS associated with invasive breast cancer on clinical outcome in BCT patients. METHODS AND MATERIALS: From 1980 to 1996, 607 cases of invasive breast cancer were treated with BCT. All slides were reviewed by a single pathologist. Positive margin was defined as presence of invasive carcinoma/ductal carcinoma in situ at the inked margin. Multiple clinical, pathologic, and treatment-related variables were analyzed for their association with ipsilateral breast tumor recurrence (IBTR) and true recurrence/marginal miss (TR/MM). Median follow-up was 8.7 years. RESULTS: Fifty-six patients (9%) had LCIS in association with invasive cancer. On univariate analysis, positive final margin, positive/no reexcision, smaller maximum specimen dimension, and the presence of LCIS predicted for IBTR. The 10-year IBTR rate was 14% for cases with LCIS vs. 7% without LCIS (p=0.04). On multivariate analysis, positive margin (p<0.01), positive/no reexcision (p=0.04), and presence of LCIS (p=0.02) remained independently associated with IBTR; positive margin (p<0.01) and LCIS (p=0.04) were also associated with TR/MM failure. When examining only cases with negative final margins, the presence of LCIS remained associated with higher IBTR and TR/MM rates (p<0.01). CONCLUSION: The presence of LCIS was independently associated with higher rate of IBTR and TR/MM after BCT for invasive breast cancer. LCIS may have significant premalignant potential and progress to an invasive IBTR at the site of index lesion. The adequacy of excision of LCIS associated with invasive carcinoma should be considered in patients undergoing BCT.

Sorry, I can't get the entire abstract to post, its some glitch. I got abstract from Pubmed.

Cancer. 2001 May 15;91(10):1862-9. Links Lobular carcinoma in situ increases the risk of local recurrence in selected patients with stages I and II breast carcinoma treated with conservative surgery and radiation.

Sasson AR, Fowble B, Hanlon AL, Torosian MH, Freedman G, Boraas M, Sigurdson ER, Hoffman JP, Eisenberg BL, Patchefsky A. Department of Surgical Oncology, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19104, USA. BACKGROUND: Lobular carcinoma in situ (LCIS) is a known risk factor for the development of invasive breast carcinoma. However, little is known regarding the impact of LCIS in association with an invasive carcinoma on the risk of an ipsilateral breast tumor recurrence (IBTR) in patients who are treated with conservative surgery (CS) and radiation therapy (RT). The purpose of this study was to examine the influence of LCIS on the local recurrence rate in patients with early stage breast carcinoma after breast-conserving therapy. METHODS: Between 1979 and 1995, 1274 patients with Stage I or Stage II invasive breast carcinoma were treated with CS and RT. The median follow-up time was 6.3 years. RESULTS: LCIS was present in 65 of 1274 patients (5%) in the study population. LCIS was more likely to be associated with an invasive lobular carcinoma (30 of 59 patients; 51%) than with invasive ductal carcinoma (26 of 1125 patients; 2%). Ipsilateral breast tumor recurrence (IBTR) occurred in 57 of 1209 patients (5%) without LCIS compared with 10 of 65 patients (15%) with LCIS (P = 0.001). The 10-year cumulative incidence rate of IBTR was 6% in women without LCIS compared with 29% in women with LCIS (P = 0.0003). In both groups, the majority of recurrences were invasive. The 10-year cumulative incidence rate of IBTR in patients who received tamoxifen was 8% when LCIS was present compared with 6% when LCIS was absent (P = 0.46). Subsets of patients in which the presence of LCIS was associated with an increased risk of breast recurrence included tumor size < 2 cm (T1), age < 50 years, invasive ductal carcinoma, negative lymph node status, and the absence of any adjuvant systemic treatment (chemotherapy or hormonal therapy) (P < 0.001). LCIS margin status, invasive lobular carcinoma histology, T2 tumor size, and positive axillary lymph nodes were not associated with an increased risk of breast recurrence in these women. CONCLUSIONS: The authors conclude that the presence of LCIS significantly increases the risk of an ipsilateral breast tumor recurrence in certain subsets of patients who are treated with breast-conserving therapy. The risk of local recurrence appears to be modified by the use of tamoxifen. Further studies are needed to address this issue.

However, in this study, again with about 65 patients, Cancer. 2006 Jan 1;106(1):28-34. Links Is lobular carcinoma in situ as a component of breast carcinoma a risk factor for local failure after breast-conserving therapy? Results of a matched pair analysis.

Ben-David MA, Kleer CG, Paramagul C, Griffith KA, Pierce LJ. Department of Radiation Oncology, Cancer and Geriatrics Center, University of Michigan Medical School, Ann Arbor, Michigan 48109-0010, USA. BACKGROUND: The goals of the current study were to compare the clinicopathologic presentations of patients with lobular carcinoma in situ (LCIS) as a component of breast carcinoma who were treated with breast conserving surgery (BCS) and radiation therapy (RT) with those of patients without LCIS as part of their primary tumor and to report rates of local control by overall cohort and specifically in patients with positive margins for LCIS and multifocal LCIS. METHODS: Sixty-four patients with Stages 0-II breast carcinoma with LCIS (LCIS-containing tumor group, LCTG) that had received BCS+RT treatment at the University of Michigan between 1989 and 2003 were identified. These patients were matched to 121 patients without LCIS (control group) in a 1:2 ratio. RESULTS: The median follow-up time was 3.9 years (range, 0.3-18.9 yrs). There were no significant differences between the two groups with regard to clinical, pathologic, or treatment-related variables or in mammographic presentation, with the exception of a higher proportion of the LCTG patients who received adjuvant hormonal therapy (P = 0.01). The rates of local control at 5 years were 100% in the LCTG group and 99.1% in the control group (P = 0.86). The presence of LCIS at the margins and the size and presence of multifocal LCIS did not alter the rate of local control. CONCLUSIONS: The extent of LCIS and its presence at the margins did not reduce the excellent rates of local control after BCS+RT. The data suggest that LCIS in the tumor specimen, even when multifocal, should not affect selection of patients for BCS and whole-breast RT.



The decision whether or not to get mastectomies is a very personal, individual decision.

You will make the best decision for yourself, whatever you choose.

The women on the ILC forum may know more, and you may want to post there....Best of luck with your waiting and decisions.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 19, 2007 09:01PM Poppy wrote:

Carrie, I love you and miss you! You know, since the board changes I have been lurking in unusual places. I think there was a reason for that because I came across your post about being dx. I'm so sorry Sweets. I will be thinking of you and praying for you. You've got superhero fighting genes though so I know you will be just fine.

PM me if you want.

Love always,

Erica

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Oct 20, 2007 04:32AM jetj wrote:

I fully understand your concerns, it's very difficult dealing with risk. 

I must comment from my experience of being diagnosed with IDC, DCIS after an LCIS diagnosis and having the LCIS/ALH in both breasts, is that it can be found early enough to need minimal treatment apart from bilateral masts and reconstruction.

Life's good after BC too.

Janette 

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Oct 20, 2007 06:08AM csp wrote:

POPPY !

I sent you a pm .  Laughing

Hugs,

Carrie

Radiation Therapy 10/1/2010 Surgery Lumpectomy: Right

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