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Topic: LCIS and Micro calcifications

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

Posted on: Jun 5, 2010 10:04AM

Sharon2girls wrote:

For the last 5 years I have been diagnosised with micro calcifications. First set biopsy through stereotactic which were benign. A year later new set, all in left breast look suspicious. I first had another stereotactic which confirmed suspicious cell and then they were removed open excisional biopsy. The final diagnosis was: atypia hyperplasia and LCIS or Lobular neoplasia. I had two follow up 6 month mammos where the radiologist was watching a new set in left and monitoring a set in right. Since unchanged I was put back on a yearly exam which I did a month ago. The calcifications on the left they were watching now have multiplied and cluster. New set found deep in right breast and also appear to be clustering. Recommendation is to surgical biopsy them as the cluster in left breast too near nipple and I have small breast and there is not much left after the last surgery and the nipple collasped. Right is pretty deep and they don't think they can get by stereo either. But that is not an option I would want to do nor more surgical biopsy as there is no guarantee that I will not be having these same biopsy surgeries in the future. So I am opting for prophylactic mastectomy, but am very nervous and need to know more from women in my situation and if they felt prophylactic was the way to go and how the recovery is. I am a personal trainer and work out a lot and want to continue after surgery. My surgeon has not decided on keeping the nipples or extracting any lymph nodes as she first wants to do an MRI with regard to the lymph nodes. Surgery in the fall. I am 49 with no history of breast cancer, but had children in my 30's. Thanks for any information.          

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Jun 6, 2010 12:33PM formykids wrote:

Hi Sharon2girls

You have come to a great place. Last July I was diagnosed with LCIS from an excsional biopsy, this after being diagnosed with ALH after a stereotactic biopsy.  Thanks goodness I had a very thorough doctor who referred me to an oncologist at that point.  I also don't have history of breast cancer in the family, had my first child at 30 and I was 46 at the time.  Fast forward to end of Sept 2009, MRI showed an area of concern BIRAD 5, which led to MRI guided biopsy, showing PLCIS. My surgeon tried to remove the PLCIS, with another excitsional biopsy, and they found 2 areas of PILC, with no node involvement (thank goodness)

I ended up having BMX, with the left side being prophylatic.  For me this was the best possible decision.  I too was small breasted and already my breast were deformed from all the biopsies I had done.  I also would not have been able to stop worrying that something would turn up on the non-cancer side. The recovery from the BMX wasn't too bad physically, I found it more emotional.  I wasn't able to schedule reconstruction immediately, so I found it very difficult going without any breast for the past 4 months.  I have just had bilateral DIEP May 2010 and am recovering now from this.  But I am so happy with my decisions.  Again for me, it was the right thing to do. I was cross country skiin 3 weeks post surgery after my BMX. and wallking 2 miles 4 days post op. If you are physically active, I think you will be very suprised how quickly you are able to do things afterwards. I had 3 C-sections, and I think they were much more difficult.

Please feel free to PM me if you would like.

This is the worst time right now, it is truly much, much better being on the other side. I kept questioning my decisions prior to surgery, but never once have I since surgery.

Take Care

Cathy

"Serenity", "Courage", "Wisdom" Nov 2009 Pleomorphic Invasive Lobular Carcinoma Jan 2010 BMX May 11,2010 DIEP

Dx 11/30/2009, ILC, <1cm, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jun 7, 2010 01:34AM kdebartelo wrote:

Hi Sharon my name is Kolette.  You have come to the right place for support and alot of information.  I was diagnosed with LCIS last March 2009 after a breast reduction.  Iam now 42 yrs old and not the type of person that can wait to see what happens.  I have a hard time waiting and greatly frown upon the not knowing.  I continued my journey by starting with my OB doctor which referred me to a breast surgeon in Milwaukee Wisconsin.  Lucky for me I live close to Chicago and Milwaukee.  I then went to a wonderful caring Dr. in Milwaukee Wisconsin at Froedtert. By the end of July 2009 I had a bilateral masectomy.   I am a nurse and also very active.  I had no difficulty with recovery and required little pain meds.  I just had my expanders removed and my implants placed in April 2010.  It took me a long time to get my exchange because I was so very busy and had to go to Mexico on vacation first.  Im planning my nipple reconstruction in Oct. 2010 and tattoos at approx.  the same time.  I will never look back for my choices I will only look ahead with my two kids! You will I know make what ever decision is best for you and every person has their own plan.  Take all the information and make it work for you.  Feel free to PM me (private message)  Best of luck to you.

Dx 3/12/2009, LCIS, Stage 0, 0/0 nodes
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Jul 10, 2010 01:36PM, edited Jul 10, 2010 04:09PM by ktdid

Hi

I had a needle core biopsy because of a cluster of microcalcifications in left breast, which found LCIS, ADH, intraductal papilloma involving ADH. AFter that had a wide excisional biopsy which found severe ADH within .1 cm of the margin and again, LCIS. Path report suggested re-excision because it was close to being DCIS. 3 weeks later had a second excisional biopsy-- two days ago.  Waiting for results.

If DCIS is found in margins, I guess that would again require more surgery. I am starting to feel like swiss cheese. If noDCIS then, surgeon said I would need yearly mammogram and clinical breast exams 1 or 2x per year.  Many of you said that you get MRIs and I wonder why they would not with me.  

I know I don't want to go through numerous biopsies, re-excisions etc.  Don't know what is going on in my right breast, could have LCIS OR ADH or both there too from what I understand. Last mammo on that was March'10.  We'll see what most recent path report says, but I am wondering about prophylactic bilateral mastecomy and when it is appropriate to begin seriously considering this.  I don't want to get ahead of myself, but also don't want to be tortured with surgeries and biopsies on a regular basis.

Any suggestions on what to do next?   Should I go to an oncologist? SEcond opinions, etc?

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Jul 10, 2010 03:43PM vmudrow wrote:

ktdid - So sorry you are going through this.  My biopsy in Jan. showd ALH, and my surgeon recommended MRI every year and sent me to an oncologist.  The oncologist wanted me to take Tamoxifen for 5 years.  After a lot of research and having my BC risk assesed (40%) I decided to have prophylactic bilateral mastecomy (May 6th) - my insurance covered it because of the ALH.  I had nipple/skin sparing and couldn't have been more pleased.  PM me if you have any questions.  The surgery isn't that bad, I have TEs in now and will have them exchanged for silicone implants in a couple months.  Get another opinion. 

Good luck,  Valerie

valerie, Diagnoised 1/24/2010 with atypical lobular hyperplasia, prophylactic NSM on 5/6/10, strong family history, 40% risk of breast cancer

Surgery 02/01/1992 Lumpectomy (Left)Surgery 03/01/1996 Lumpectomy (Left)Surgery 05/06/2000 Lumpectomy (Right)Surgery 01/23/2010 Lumpectomy (Right)Surgery 05/06/2010 Prophylactic Mastectomy (Both)
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Jul 10, 2010 03:58PM, edited Jul 10, 2010 04:08PM by leaf

I am assuming you do NOT have DCIS or pleomorphic LCIS. Most LCIS is the classic kind.

There is no standardized treatment/surveillance for LCIS.  This is what the NCI says http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

Since your ADH sounds severe (do you think this is quantity or quality? - it sounds like your pathologist thinks it is advanced enough so its close to qualifying to be DCIS?)  - you may want to get a 2nd pathology opinion whether this is ADH or DCIS.  (When I had a reread of my slides, it was $250/proceedure out of pocket in 2007 at a major NCI certified major institution.  My insurance eventually reimubursed me for much of that.  But you may want to check out costs/coverage before you embark.)

I have LCIS, ALH, DH, etc and a weak family history.  I have had 3 core biopsies- Dec 2005, Feb 2007, & Feb 2007 -  and 1 (one) excision (Jan 2006). None were worse than classic LCIS.  I had one biopsy inches away from my initial core biopsy site, which was consistent with scar tissue, so they must have gone all over my breast during the excision.  I had a 2nd opinion at an NCI certified breast center in 2007.  They said they did NOT recommend following me with an MRI because I had 'too much scar tissue'.   They did not even recommend a baseline MRI. Of course, I can't get this major institution to send a copy of this consult to my onc - I tried about 5 times including 3 in person.  At that NCI major institution, breast surgeons prescribe tamoxifen.  The NCI consult said my lifetime risk of invasive breast cancer was something between 10 and 60%, but probably closer to 10%.  To get more accurate numbers 'you'd have to go to journals'.  My onc gave me a risk of about 30%, and my genetics consult gave me a risk of about 40%.

I'm going on my 5th year of tamoxifen.    My next onc visit will be with a different onc as my onc is retiring. 

My breasts have been fairly quiet the last several years, after the first 1.5 years after diagnosis of mammos, ultrasounds and/or biopsies every 3 months. I have a lot of psych issues to figure out, and other medical conditions which could have an influence on potential DCIS/invasive cancer treatment, but certainly if my breasts start acting up, I have NOT rejected the idea of PBMs.

Assuming you do not have anything worse than LCIS, then normally people can take their time to decide what treatment/surveillance they want.   I would encourage you to get all of the 2nd opinions you need in order to make the best decision for YOU.  I learned from my 2nd opinion, even though I disagreed with it. I learned that the subject of breast cancer prediction is a very sad state of affairs. One academic journal, talking about the state of accuracy about predicting breast cancer risk of the *average* woman, said the models were 'better than the roll of a dice - but not by much. '  So you can imagine how much they know about the risk for the unusual LCIS patients.

I am a pharmacist, and I think that in general, oncs are more carefully trained about drugs and their adverse effects than are surgeons.  Surgeons know meds that are used in surgery, and know about issues right after surgery, but surgeons in general do not have the reputation of knowing routine drugs.   So if you are considering anti-hormonals, I would encourage you to get an opinion from an onc that has an interest in breast cancer.

If you are interested in PBMs, then I think it is really prudent to get a 2nd opinion from a breast doc, and, if you are interested in reconstruction, a plastic surgeon.  If you are interested in reconstruction, I would really encourage you to read the reconstruction forums.

Get as many 2nd opinions as you need, research your choices thoroughly, check out both your brain and your heart.  Some people find it helpful to ask others that are close to them, but others do not.  Do what is best for you.  Then make your decision.  If you choose watchful waiting or watchful waiting with antihormonals, you can switch to any of the other two choices.  If you choose PBMs, of course you cannot undo this action. Then don't look back at your choice.  You will have done as thorough a job as you can with the information you had.

You will get all the support you need here no matter what choice you make.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 10, 2010 04:45PM ktdid wrote:

Wow! Thanks Leaf and vmudrow and others who responded so quickly. It really helps to get a handle on this, and I am amazed at what you have gone through. I feel like I am only beginning this journey, and although I want it to be a short one, I guess we don't get off that easily.

To answer your question, leaf, the recent surgery was done to determine if there is any DCIS in the area of the severe ADH, I will find out within a week about that one.  On the LCIS I have not been told if I have pleomorphic LCIS or the plain vanilla classic kind! That will be one of my questions when I go for my post-op follow up with the surgeon.  By the way, if any of you reading this think of any questions I should ask, that would be appreciated.

Depending on what they find in this next pathology report, I may seek a second opinion on the path report.  I have learned that very little of this is an exact science, and more like an "art" for lack of a better word.

I do have concerns about the amount of scar tissue being created by the core needle biopsy and second excisional biopsy in exactly the same place, and I hope it doesn't trigger another biopsy down the road because of that ---what a morass this is!!

 I appreciate your keen insights as to second opinions and considering more than just the body, but the heart in all of these things.  I will take my time ,this next time ,and get second opinions from whomever or wherever I think is the best place.Since I truly believe in the mind/body connection I am hoping that I have some time to work on all these things, mentally, physically and spiritually, and that I am not placed in the reactive place where something has to be done right away.

My family history is also weak, no direct lines but grandmo. and aunts.  I was told I am not a great candidate for tamoxifen due to blood clot risks and minor cardiac condition I have.  Aromatase inhibitors were mentioned by the surgeon and that would have to be investigated with the high risk clinic that I may be able to participate in. The institition where the surgeon is associated is a major cancer research institute center and there are a ton of things and research going on there.  

I guess I will get a better handle on lifetime risks, etc when I talk with an oncologist.  Interesting about the range of risk......10 to 60% ........I don't think those kind of statistics offer much help because it is such a wide range.

Don't know if BRACA genetic testing is worth it for me in terms of making any future decisions, but I guess it would if considering PBMs. 

Glad to hear leaf, that you breasts are quiet now.  I laughed to myself when they first told me i had very active breasts, now I'm not laughing so hard...

Thanks for all the input....it is overwhelming at first, and you seasoned warriors have alot of helpful insight to offer, learned the hard way.

Sending you healing and healthy thoughts

ktdid

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Jul 10, 2010 04:45PM KellyMaryland wrote:

Hi Sharon. So sorry you are in this spot. I too have been struggling with: what is the right amount of time to pass before a PMB is chosen. In fact I think I googled something to the effect! (desperate!) My diagnosis of Pleomorphic LCIS and then multiple papillomas was spring of this year and I spent the following months fretting about it. Just this past week I lay in bed one morning and realized that I actually don't have a decision to make- I made it at the time of my diagnosis (call it gut reaction, instinct, whatever)- it's just coming to terms with that decision that'll take some wrapping my brain around. Perhaps it will be that way for you. I really believe what the fabulous women on this site have said to me: only you can decide what is the best way forward for you. Any route you choose, you have scores of women who've chosen the same path and will be happy to give you support. Please PM me if you want to chat about any of this--sometimes the act of writing it out can help. 

All the best,

Kelly

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Jul 10, 2010 04:48PM ktdid wrote:

p.s. i'm new to this...how to you get the edit/delete thingy to go away at the bottom?

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Jul 10, 2010 11:01PM, edited Jul 10, 2010 11:04PM by leaf

The edit/delete option occurs only on your OWN posts.  I do not see any edit/delete option on your posts because I did not write them.  They don't go away for you on your posts, but other people (except maybe the moderators) can't see the words 'Edit/delete' on your posts.  Its an easy way to make changes on your own posts.  I use it frequently, as I make lots of errors in my posts.

I've sometimes had problems with the 'preview' button; sometimes it produces double posts for me.  (I have a Mac using OS 10.6.4, using Firefox.)  Your experience may vary. 

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 10, 2010 11:26PM awb wrote:

ktdid-----I was diagnosed with LCIS almost 7 years ago, so I've been doing the high risk surveillance route for a long time now. I took tamoxifen for the full 5 years and now take evista and fortunately tolerate both meds well overall. I still do alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, so essentially am checked by some method every 3 months. I was told by my oncologist that my lifetime risk was about 37%, but I think it is actually closer to 50% (I have family history of bc--mom had ILC). but even with that elevated risk, all my docs (onc, pcp, bs, gyn) felt BPMs too drastic. Right now I'm not ready to go the route of BPMs, I do fine with the monitoring and the meds----but I will always reconsider that option if any more issues come up. Only you will know when enough is enough. 

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 13, 2010 07:13AM ktdid wrote:

Thanks Leaf about the edit/delete info.....I should have guessed that!

Waiting this week for 2nd excisional biopsy path results. It's amazing what the mind does while it's waiting. 

I keep trying to remain positive and think the path results will be fine. Another part of me says I had better be prepared if they say that they want more surgery( if they find DCIS).And then I think, no matter what they tell me, I think I can take some time to think about things and determine the next step. This has been very helpful to be on this site.

I have my post-op followup on te 19th,but should get path results by this Thursday or Friday.

Any advice?

Thanks

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Jul 13, 2010 07:17AM ktdid wrote:

Thanks for your input on this AWB.  Good to hear you are 7 years out and I assume no othe biopsies??

I am not sure if I am a good candidate for Tamoxofen or aromatase inhibitors due to some cardiac issues that cause increased risk of blood clots (patent foramen ovale). But I guess that would all be addressed by an oncologist, and I haven't seen any one for that yet.

Any pointers on how to live with the uncertainty of all this?

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Jul 13, 2010 11:28AM awb wrote:

ktdid-----yes, no other biopsies in these past 7 years (I did have some "spots" show up on my first 2 MRIs, but they were cleared by follow up US and mammo and did not require biopsy). It's definitely a good idea to get an oncologist on board (after you get the pathology reports and you know just what your dealing with); I assume you have a cardiologist due to the PFO--that's who I would ask about the risk of blood clots due to your cardiac situation.  I do high risk surveilance where I'm monitored very closely, so it gives me comfort to know anything would probably be caught very early. That and my strong faith--prayer helps a lot. PM me if you'd like.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 17, 2010 10:17AM ktdid wrote:

Hi Leaf,

We talked about a week ago and I wanted to give you an update on the results of my surgery and wonder if you can shed some light on some questions/or understanding the path report.

Second surgery done a week ago found Ductal Carcinoma in Situ, low grade, solid an cribriform type, with pagetoid spread.

Calcifications associated with DCIS

No necrosis

margins negative (>0.3 cm)

DCIS arising in a background of ADH involving papillomatosis. 

additional findings biopsy cavity, columnar cel change, sclerosing adenoss, calcifications associte with benign epithelium and fibroadenoid change.

Imunohistochemistry : positive- e-cadherin

HER2, ER, and PR studies pending.  

So I am trying to understand all of this, and have a post op follow up on Monday with my surgeon. Also will meet with medical oncologist, and genetics counselor on Monday.

I understand I have low grade DCIS and I guess that is the best kind to have if I have to have any. 

I am not sure I will do anything beyond the surgery........must get alot more info first.

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Jul 17, 2010 01:30PM leaf wrote:

I'm sorry they found ANYTHING abnormal.

Well, I'm no expert on DCIS (since I don't have any DCIS.)  But low grade is good, and no necrosis is good.  These are associated with slower growth.   You may want to double check on the DCIS forums.

Most ductal cancers are e-cadherin positive.  To remember, just separate cadherin into Ca (calcium) - that's one of the messengers in the system, and adherin.  IDC likes to form tumors, so think of a ball needing adhering.  Most IDC is e-cadherin positive. In contrast, ILC likes to form sheets, which do not adhere together.  So most ILCs and LCISes are e-cadherin negative.

The only other thing that may put you at slightly higher risk is the sclerosing adenosis (I have that too.)  But, as in many things breast cancer, I am guessing we don't know if the risk of breast cancer from DCIS and the risk of breast cancer from sclerosing adenosis is additive.  If it was additive, then you'd add the risk from DCIS to the risk from sclerosing adenosis. Some breast cancer risk factors are NOT additive.  This can happen, for example, if the 2 risk factors really have the same cause.  Since we don't have a clear idea what causes DCIS or sclerosing adenosis, or most breast cancer, all we can do is look at people who have both risk factors, and compare them to people with only one of the risk factors.  I can't find any obvious studies in Pubmed of people with both of  these 2 risk factors that look at future breast cancer risk.

I'm glad you're doing your research, making your decision, and not looking back.  That's the responsible thing to do.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 17, 2010 02:17PM awb wrote:

ktdid----I'm sorry to hear about the DCIS. The negative margins and no necrosis are good news though. Like you said, there's still alot of info you need to find out. You definintely need to get an oncologist . And your cardiologist input on the blood clot risk would be important too. (with tamoxifen or evista)  Are they recommending any radiation?

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 17, 2010 02:22PM awb wrote:

ktdid----forgot to mention---the DCIS now trumps everything else so your treatment will be directed primarily at the DCIS, but the LCIS does put both breasts at equal risk as it is a bilateral disease. Praying for God's peace for you throughout this ordeal.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 17, 2010 03:15PM ktdid wrote:

Hi  folks. Thanks for your input, I will go on the DCIS board and the e-cadherin is now understandable.

Anyone know what pagetoid spread means???

Thanks

ktdid

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Jul 17, 2010 03:54PM leaf wrote:

I have 'LCIS with pagetoid spread into the ducts'.  I read a post from someone else who said they had 'DCIS with pagetoid spread into the lobules'. 

Here is a quote from one study in 2001.

DCIS and LCIS can have similar appearances at histopathologic examination, which further confounds management recommendations (30). Cells of DCIS can extend not only along the duct but also into the terminal duct lobular unit. When monomorphic cells distend the lobule, it can reflect cancerization of the lobules from DCIS, and it can be difficult to distinguish from LCIS. Similarly, cells of ALH or LCIS can involve the ducts, so-called pagetoid spread; both entities arise in the terminal duct lobular unit (31). When ductal involvement is present, the risk of subsequent invasive cancer increases. http://radiology.rsna.org/content/218/2/503.full

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 17, 2010 04:44PM awb wrote:

Leaf--I also have LCIS with pagetoid spread into the ducts. That last sentence (after the #31) is a little concerning about the increase in risk with the ductal involvement.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 19, 2010 02:59PM leaf wrote:

I'm sorry you also have pagetoid spread into the ducts, Anne. I was rather surprised too about that sentence.  But this is the first time I've seen somebody say that.  I've seen some people say that the risk that LCIS entails decreases over time, and others say it stays the same.  I think these things are pretty hard to measure.

Best wishes for a healthy future!

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 19, 2010 07:10PM awb wrote:

Leaf--everything I've ever read states the risk with LCIS remains elevated  over time, up to 2 decades. My own oncologist  feels it increases every year with age.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 20, 2010 11:57AM janetschulman wrote:



From today's New York Times 
 
July 19, 2010

Earliest Steps to Find Breast Cancer Are Prone to Error

Monica Long had expected a routine appointment. But here she was sitting in her new oncologist’s office, and he was delivering deeply disturbing news.

Nearly a year earlier, in 2007, a pathologist at a small hospital in Cheboygan, Mich., had found the earliest stage of breast cancer from a biopsy. Extensive surgery followed, leaving Ms. Long’s right breast missing a golf-ball-size chunk.

Now she was being told the pathologist had made a mistake. Her new doctor was certain she never had the disease, called ductal carcinoma in situ, or D.C.I.S. It had all been unnecessary — the surgery, the radiation, the drugs and, worst of all, the fear.

“Psychologically, it’s horrible,” Ms. Long said. “I never should have had to go through what I did.”

Like most women, Ms. Long had regarded the breast biopsy as the gold standard, an infallible way to identify cancer. “I thought it was pretty cut and dried,” said Ms. Long, who is a registered nurse.

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

There is an increasing recognition of the problems, and the federal government is now financing a nationwide study of variations in breast pathology, based on concerns that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. Despite this, there are no mandated diagnostic standards or requirements that pathologists performing the work have any specialized expertise, meaning that the chances of getting an accurate diagnosis vary from hospital to hospital.

Dr. Linh Vi, the pathologist at Cheboygan Memorial Hospital who diagnosed D.C.I.S. in Ms. Long, was not board certified and has said he reads about 50 breast biopsies a year, far short of the experience that leading pathologists say is needed in dealing with the nuances of difficult breast cancer cases. In responding to a lawsuit brought by Ms. Long, Dr. Vi maintains that she had cancer and that two board-certified pathologists at a neighboring hospital concurred with his diagnosis.

Yet several leading experts who reviewed Ms. Long’s case disagreed, with one saying flatly that her local pathologists “blew the diagnosis.”

The questions that often surround D.C.I.S. diagnoses take on added significance when combined with criticism that it is both overdiagnosed and overtreated in the United States — concerns that helped fuel the recent controversy over the routine use of mammograms for women in their 40s.

The United States Preventive Services Task Force, an independent panel that issues guidelines on cancer screening, found last November that the downside of routine annual mammograms for younger women might offset the benefits of early detection. The panel specifically referred to overdiagnosis of D.C.I.S., as well as benign but atypical breast lesions that left undetected would never cause problems.

D.C.I.S., which is also called Stage 0 or noninvasive cancer, was a rare diagnosis before mammograms began to be widely used in the 1980s. Until then, breast pathology typically involved reading tissue from palpable lumps. The diagnoses — usually invasive cancer, a benign fibroid tumor or a cyst — were often obvious.

Today, D.C.I.S. is diagnosed in more than 50,000 women a year in this country alone. The abnormal cells, which are encased in breast ducts, are removed before they develop into invasive cancer. There are estimates that if left untreated, it will turn into invasive cancer 30 percent of the time, though it could take decades in some cases.

Concerned about the accuracy of breast pathology, the College of American Pathologists said it would start a voluntary certification program for pathologists who read breast tissue. Among its requirements is that the pathologists must read 250 breast cases a year.

“There’s no question there’s a problem, and that’s why we’re starting this certificate program,” said Dr. James L. Connolly, director of anatomic pathology at Beth Israel Deaconess Medical Center in Boston.

While the program has not started yet, it is still controversial.

With hundreds of thousands of breast biopsies performed in this country a year, some pathologists stand to lose business, Dr. Connolly said, if doctors and patients demand that their slides go to a certified pathologist.

Cases like Ms. Long’s may be extreme examples, but tracing her story shows why doctors increasingly say that a woman’s initial reaction to a diagnosis of D.C.I.S. should be caution rather than a rush to disfiguring surgery or potentially harmful radiation.

Dr. Dennis Citrin, the oncologist at Midwestern Regional Medical Center in Zion, Ill., who told Ms. Long that she did not have D.C.I.S., said efforts to identify cancer at its earliest stages could benefit patients but also create problems.

“We’re now trying to move the goal post if you like,” Dr. Citrin said. “We’re trying to make a diagnosis at an earlier and earlier stage. There are going to be patients where there’s confusion or difference of opinion in this spectrum of changes, the earlier that you move in the process. So that’s why there are cases like Monica’s.”

‘Shock and Disbelief’

Tiny Cheboygan Memorial Hospital, a 46-bed facility in rural northern Michigan, is far from any major cancer center. Its patients are mostly elderly and suffering from cardiovascular problems and diabetes. Monica Long helped take care of them, working as a nurse on the night shift.

In March 2007, Ms. Long, then 49, went for her annual mammogram, which showed a shadow of about one centimeter in her right breast.

A biopsy followed and the results were sent to Dr. Vi, the only pathologist at Cheboygan and, in fact, in the entire county. Dr. Vi had started at Cheboygan in 2003 after a journey that began with medical school in Vietnam, where he grew up.

He ran the hospital’s pathology department even though he had not passed either part of the exam to become board certified until 2008, a year after he gave Ms. Long her diagnosis. In a deposition, Dr. Vi said he had taken one portion of the test “several times” before passing, but he did not remember how many.

Of the hundreds of thousands of breast biopsies that are performed every year in the United States, many are conducted in community hospitals. Like Dr. Vi, many general pathologists in small practices do not have extensive exposure to D.C.I.S. and other atypical breast lesions.

Just over a week after Ms. Long’s biopsy, the pathology report from Dr. Vi came back as ductal carcinoma in situ.

“I was in shock and disbelief,” said Ms. Long, a whippet-thin workout fanatic and divorced mother of three daughters. “Everybody thinks it’s not going to happen to you. Then I got kind of scared. You hear the word cancer. When people are told you have cancer, I swear they look at you differently.”

Ms. Long was given two options: a mastectomy or a procedure called a quadrantectomy — removal of one-fourth of the breast — followed by six weeks of radiation.

“I decided to do the quadrantectomy, and hope for the best,” she said.

Before Ms. Long’s surgery, Dr. Vi sent her slides for a second opinion to pathologists at Northern Michigan Regional Hospital in the larger nearby town of Petoskey, Mich. In a brief interview, Dr. Vi characterized D.C.I.S. diagnosis as a “gray zone” and declined to comment on the Long case.

The Petoskey practice — including a board-certified pathologist named Dr. Noel Ceniza — was already fielding complaints from another patient, Barbara Stachak.

In 2005, Dr. Ceniza reported that Ms. Stachak’s biopsy contained cells consistent with breast cancer, prompting a chain of events that led to the removal of a large portion of Ms. Stachak’s breast.

After that surgery and further testing, Dr. Ceniza revised the diagnosis to a less serious finding. “I just felt so violated,” Ms. Stachak said recently. She lost a lawsuit against Dr. Ceniza in 2009, after his lawyer argued that he had not departed from the standard of care.

When the Petoskey pathologists got Ms. Long’s slides, they partly disagreed with Dr. Vi.

He had found two forms of D.C.I.S., called solid and cribriform. In solid D.C.I.S., cancer cells completely fill the affected ducts. In cribriform, there are gaps between the cells.

Dr. Ceniza and a partner instead found another form of the disease, in which the cells are arranged in a fern-like pattern.

A lawyer for Ms. Long, Brian McKeen of Detroit, said that Dr. Vi “could easily have sent the slides to any number of known and notable breast pathology specialists for a second opinion.”

Asked in a deposition why he did not send Ms. Long’s slides to a breast specialist, Dr. Vi hinted at financial constraints. When a pathologist sends out a slide for consultation, the hospital, not the patient, is frequently billed. The Petoskey doctors had agreed to provide free consultations.

In a statement, lawyers for the Petoskey doctors denied that there was any malpractice in Ms. Long’s treatment, citing reports in medical literature of a “wide array of variability” in interpreting breast pathology. “It is not a breach of the standard of care for one pathologist to have one opinion and another competent pathologist to have another opinion,” the lawyers said.

In June, six weeks after her surgery — the removal of one-fourth of her breast — Ms. Long began radiation treatments.

Misdiagnoses Identified

In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.

For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.

Yet some pathologists have found the response to these types of studies slow and inadequate.

“To recognize the problem requires you to acknowledge that there’s room for improvement and that some of your colleagues are not really making the correct diagnosis,” said Dr. Michael Lagios, a California pathologist who was a consultant on the Komen report.

To diagnose a breast cancer, pathologists look at slides mounted with thin slices of breast tissue. The slides are stained with a purplish dye that highlights patterns of circles and dots, each representing a cell, its nucleus and membrane. The diagnosis turns on the appearance of these cells under a microscope.

At larger hospitals, the findings are often presented to a tumor board, in which a team of doctors from various disciplines reviews the pathology report and develops a treatment plan.

A number of pathology practices around the country also specialize in rendering second opinions.

Dr. Lagios, a pathologist at St. Mary’s Medical Center in San Francisco, reviews slides for women who want a second opinion. And what he finds concerns him.

In 2007 and 2008, he reviewed 597 breast cases and found discrepancies in 141 of them, including 27 cases where D.C.I.S. was misdiagnosed. Dr. Lagios says that based on his experience, microscopic core needle biopsies of low-grade D.C.I.S. and benign lesions, called atypical ductal hyperplasia, or A.D.H., may be misread 20 percent of the time.

Beyond diagnostic errors, there are different schools of thought about what constitutes D.C.I.S. Variations in diagnoses may depend partly on where a woman is treated.

In San Francisco, Dr. Lagios uses a criterion that says some breast lesions under two millimeters are not D.C.I.S., even if they have the other markers of the condition.

At Beth Israel Deaconess Medical Center in Boston, also renowned for its breast pathology services, those lesions are considered D.C.I.S., according to Dr. Connolly.

Dr. Lagios says he frequently talks to patients who are struggling to make sense of several different opinions.

“This leaves the woman totally confused,” he said.

Response and Regret

Fear compounds the confusion, and even though D.C.I.S. is 90 percent curable, there is growing concern that women and their doctors opt for more aggressive surgery, radiation and drug therapy than is needed.

A mastectomy is sometimes offered as an option for D.C.I.S., although experts say it is usually not advisable unless the D.C.I.S. is large or appears in several sites in the breast.

Yet more women who are faced with the diagnosis of D.C.I.S. become so fearful that they elect to have both breasts removed, often against their doctor’s recommendations.

“The patient gets paralyzed with a fear of cancer,” Dr. Masood said. “They want the breast off.”

Among women who had surgery for D.C.I.S., the rate of double mastectomy rose to 5 percent in 2005, from 2 percent in 1998, according to a study last year.

Dr. Ira J. Bleiweiss, chief of surgical pathology at Mount Sinai Medical Center in New York, said that ideally, all breast cancer diagnoses would be referred for a second opinion. He warns patients and their doctors: “Don’t rush to the operating room.”

That is just what Stacie Hintz did after a diagnosis of D.C.I.S. in Colorado Springs in 2004. After both her breasts were removed, she was told that her initial pathology — which found an aggressive type of D.C.I.S. — was incorrect.

“I was pretty scared at the time,” said Ms. Hintz, who cares for disabled adults. “My daughter was 2 years old. The state of mind that I was in was saying, ‘I need to live to raise my daughter — just do what you need to do.’ “

Ms. Hintz later moved to Denver and, like Ms. Long, sought follow-up care at a larger facility, the University of Colorado Health Sciences Center, according to her lawyer, Linda Chalat.

To manage her case, doctors at the University of Colorado asked for slides from her previous doctors. Several weeks later, Ms. Hintz received a letter from her new doctors.

“It said we’ve reviewed these slides and we’ve found no cancer,” she said. “I’m standing there, in shock.”

Ms. Hintz later reached a settlement with the pathology group that had given her the diagnosis.

Dr. Masood says that since there is no mechanism for reporting errors, some women find out by accident that their diagnoses were wrong.

An exception is Janice Fenwick, a retired asset manager for the Marines, who was told she had D.C.I.S. in April 2009. That summer, after she had a partial mastectomy and began radiation treatment, the V.A. Medical Center in West Palm Beach, Fla., told her the diagnosis was incorrect, Ms. Fenwick said.

In her case, though, there are questions whether that notification could have come sooner.

After the surgery, both a Quest Diagnostics laboratory and the Armed Forces Institute of Pathology in Washington were unable to find any cancer in the portion of her breast that had been removed, she said.

As early as June 9 — before Ms. Fenwick began radiation — the Armed Forces Institute of Pathology asked to see the slides from the original biopsy, according to information she obtained.

Ms. Fenwick said she had completed two-thirds of her radiation treatments by the time she received a telephone call from her oncologist. “We have troubling news to tell you,” her oncologist said. “You don’t have cancer and you never did.”

The institute disputed the original diagnosis, conducted at the West Palm Beach V.A. Medical Center, she said. “I was kind of beside myself.”

Ms. Fenwick, 50, said a V.A. official later apologized and said the agency would look into using outside experts for breast biopsies because the hospital did not treat many breast cancer cases. Sean Cronin, a lawyer representing Ms. Fenwick in a lawsuit against the V.A., said he was troubled that she had received radiation even after questions were raised about her diagnosis.

The hospital would not comment on Ms. Fenwick’s case. Its director, Charleen R. Szabo, said in a statement: “Medicine is not an exact science. Treatment options are based on information available at a period in time. When additional information comes to light, altering the course of treatment may become necessary.”

A Nurse Is a Patient

Just as the course of history can turn on minor events, Monica Long’s life — and her status as a cancer patient — was altered by a high school reunion.

She rekindled an old flirtation at the gathering, then followed her new beau to Illinois from Michigan, where she went to work as a nurse at the Midwestern Regional Medical Center.

As an employee at the hospital, a division of Cancer Treatment Centers of America, Ms. Long decided to follow up her breast care with Dr. Citrin.

Following hospital policy for new patients, doctors reviewed her pathology and saw no evidence of D.C.I.S. For confirmation, they sent the slides to the Mayo Clinic, which also found a benign condition.

When Ms. Long appeared in Dr. Citrin’s office two days later, he told her about the findings.

“What makes you right and them wrong?” Ms. Long demanded.

Dr. Lagios, retained as a plaintiff’s expert by Ms. Long, also found the lesion to be benign.

In fact, a pathology expert hired by the defense agreed, but said the misdiagnosis was reasonable, given the difficult nature of this area of pathology.

Since her surgery, Ms. Long has struggled with a range of emotions — relief, anger and guilt.

As a nurse in a cancer hospital, she encounters many people who are caught in the disease’s maw. Ms. Long says they provide constant reminders of how fortunate she is.

Yet, there is another reminder every time she takes a shower — the disfiguring results of her surgery.

“I think you could handle the disfigurement a little bit more if there’s a real purpose for it,” Ms. Long said. “The tough part is to find out later that I didn’t need it, and I never did.”


 

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Jul 20, 2010 01:37PM, edited Jul 20, 2010 01:40PM by leaf

To try to document that at least one author  mentioned that post-LCIS diagnosis breast cancer incidence may go down, I did find these sentences:

Page et al.27 documented that in two thirds of women in whom invasive cancer developed, it did so within 15 years of biopsy. In a separate study, in over 50% of patients in whom cancer devel- oped, it did so between 15 and 30 years after biopsy, with an average interval of 20.4 years.29 This extended time span may have significant implications for planning patient follow-up.http://www.eusoma.org/doc/LCIS.pdf

To me, this would imply that in the Page et al study, if 2/3 of the women who were diagnosed with 15 years of their initial biopsy, then 1/3 were diagnosed later.  This might imply in this study the risk rate may have gone down, particularly since most women are diagnosed with LCIS at between age 40-50.  I would be surprised if the death rate (from all causes) of LCIS patients was 30% at age 55-65, which might be another way to account for a lower risk as one ages.

Most authors that I've read opine the risk does NOT go down with age, and I think that's the consensus opinion of experts.  But, there is little about LCIS that is NOT controversial.

I wish everyone the best of health.

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 21, 2010 03:39AM RobinLM wrote:

Hi

Hope you don't mind me chipping into this debate? I havebeen diagnosed with LCIS and an assortment of other dodgy cells. I have read somewhere that 30% of ladies who are autopsied (a good cross section maybe) have LCIS. Most ladies won't even know they have it. These ladies are not included in the statistics.

Robin

Robin

Dx 4/2010, LCIS, 0/0 nodes
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Jul 21, 2010 11:13AM awb wrote:

Robin----I had read that statistic about DCIS, but not LCIS---I was told it was a much more rare condition, less than 10%.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jul 21, 2010 01:21PM leaf wrote:

This 1975 study said that 40% of their sample had DCIS - but the abstract isn't very specific how randomly the autopsies were selected - almost half of the breasts had cancer either in the same or contralateral breast. http://www.ncbi.nlm.nih.gov/pubmed/169369

In this 1987 study of 110 consecutive biopsies done for medico-legal reasons,  Malignancy was found in 22 women (20%) of which only one was known to have had clinical invasive breast cancer (IBC). At autopsy 2 women had IBC (2%), the remaining in situ carcinoma (in situ BC) of microfocal type (18%), i.e. 15 (14%) intraductal carcinomas (DCIS), 4 (3%) lobular carcinoma in situ (LCIS) and one (1%) both DCIS and LCIS. www.ncbi.nlm.nih.gov/pubmed/28... Again, I don't know if these would be representative of the general population.

In this 1988 abstract,Based upon recent Danish autopsy studies, it has been estimated that about 25% of all women will develop in situ carcinoma, predominantly in the form of DCIS. Only a fraction of these lesions will evolve into a clinical manifest form, however.  http://www.ncbi.nlm.nih.gov/pubmed/2851303http://www.ncbi.nlm.nih.gov/pubmed/2851303

This 1991 abstract looked at mastectomy specimens of women who *had already been diagnosed with breast cancer*, thus they are at increased risk already. www.ncbi.nlm.nih.gov/pubmed/18...

This 2003 abstract claims Autopsy studies indicate that CIS is frequently occurring and it was estimated that about 20% of all women will develop CIS during lifetime. Only a minor fraction is ever diagnosed, although the incidence of DCIS is increasing, especially related to mammography screening. http://www.ncbi.nlm.nih.gov/pubmed/12874968

That's all the Pubmed entries I come up with doing a search for "autopsy LCIS"

If you're going through hell, keep going-Winston Churchill

Dx 12/8/2005, LCIS, Stage 0, ER+/PR-Hormonal Therapy 07/15/2006 Tamoxifen
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Jul 21, 2010 02:55PM RobinLM wrote:

Thanks for that Leaf....It's very interesting isn't it. The Stats are probably totally unrealistic.

I wouldn't have known if I didn't have an enormous fibrocystic lump with microcysts and calcifications.....I've had that 12 years or so.....B9 in 2003.

Robin

Dx 4/2010, LCIS, 0/0 nodes
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Aug 26, 2010 07:36PM maryabb wrote:

I am 46 and my case sounds very similar to yours, except after hearing all the news early in 2010 I opted to just be proactive and go ahead with the prophlyatic BM.  I felt haunted by what might be. I have a big family HX of BC.  I opted for immediate reconstruction with tissue expanders and am still dealing with complications of the left failing but I am hopeful I am done before long.  The surgery was painful and the drains a pain.  I had seromas on each side which were not painful but irritating. Right side seroma had to be drained several times after the drain was out.  The most pain came from the burning, almost like your chest wall had been "sanded".  That lasted about 3 weeks off and on.  The TE's were uncomfortable following each expansion for a day or two.  I now am having troubles getting my insurance co. to pay for the TE's themselves. I cannot wait to be complete and more comfortable. I do have to say tho that through all of this I don't regret my decision to be healthy and not fret over what might be changing inside me.   Best of luck to you!!

maryabb

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Aug 27, 2010 02:37AM RobinLM wrote:

Hi Mary, nice to meet you.

Our cases are indeed very similar as I will be having a BMx with immediate reconstruction on tuesday. The B9 lump is still benign however while poking about checking the micro calcs in it they found LCIS. This diagnosis was in April. Two lots biopsies then an MRI scan. Scan was totally clear so nothing visible on it - recommendation was to be monitored but I don't want the stress I've had this year to be a regular thing. Because of that, I've had to have a psyche evaluation, and then do a bit of waiting for a long time slot. So here I am, waiting to go in on monday. Good luck to you too Mary. Smile

Thank you for sharing your post Op experience, I'm hoping mine goes smoothly but who knows.

Robin

Dx 4/2010, LCIS, 0/0 nodes

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