2nd Opinion, LCIS and Lifetime Risk....PBMX?

marketingmama

Hi Ladies,

I first posted back in the wintertime when my LCIS was found after a breast reduction. I opted to go to Philadelphia's most well regarded hospital, University of Pennsylvania. Long, ridiculous wait times, less than 10 minutes with the BS and a script to get an MRI. So MRI was clear. Great news. However, I received no further guidance about prevention. So finally went for a second opinion at Bryn Mawr Hospital's Breast Cancer Center and absolutely loved the surgeon and the staff. He spent over an hour with me. Reviewed my scans, sent my slides for a second opinion  to ensure the original diagnosis was correct (which my first surgeon didn't do), and reviewed my risk and options for management. His view and he says most agree is that with LCIS your lifetime risk is about 1-2% per year. So I'm 49 and come from a very healthy family with no significant health issues. My mother is 80 and in perfect health. He estimated I'd likely live another 40 years (statistically speaking) so that brings my lifetime risk to 40-80% in the affected breast (20-40% in the other breast). He was quick to mention that he believes the lower percentages are more accurate so essentially said I should assume a 40% lifetime risk. What I failed to ask and hope some of you will know, does that mean that risk will be 40% from today onward or does it gradually increase as I age?

So today or Monday I should get my path results (second opinion). In the meantime, we discussed the standard options: MRI/3D tomography imaging on a 6-month rotation, tamoxifen (FSH panels show I'm not even close to menopause), or PBMX. I have significant worries about tamoxifen but am willing to try it if I can take with my antidepressant since he said it could reduce my risk my 50%. I am on Lexapro and have been treated for depression since age 25. It's a significant condition for me and my BS said that Tamo could reduce the effectiveness of the Lexapro. He's consulting with a psychiatrist to get additional info. Question: if one is put on Tamo, do you still do the imaging studies every 6 months? Assume so but wanted to ask.

So have been thinking a ton about PBMX. Although i have no family history of BC, I am really not happy about living on the "every 6 month" roller coaster and dealing with the lifetime anxiety and worry that the shoe might drop. I don't want to just catch cancer early. I want to never have it. Yet in all I've read (and I've been Googling up a storm) PBMX seems to be really frowned upon and not recommended unless you have a genetic predisposition/family history. Considered too drastic. Etc. If I want to bring my risk all the way down, why would this option not be seen (in the general literature) as wise? Why is it considered an overreaction or too drastic for a woman to want to eliminate most of her risk and resume life without the worry and anxiety that at some point, she could face a cancer diagnosis (and chemo, radiation, surgery, etc)? Would insurance even cover it?? I honestly have been leaning toward wanting a PBMX and my husband really wants me to do it. We lived through his prostate cancer 10 years ago and it took 2 years of every-3-month biopsies to finally get a clear diagnosis. Those 2 years were awful and the anxiety and distraction cost him his job. He still needed a prostatectomy. He's totally cancer free now and considered cured. That's a huge relief.

I am not frightened of losing my breasts and having reconstruction....and wouldn't reconstruction be simpler and carry less risk NOW, when there is no active cancer?

Sorry so long but needed to share with those who understand what it is to have LCIS. I know decisions are extremely personal around management and I respect everyone's unique situation and choices.

Good health to all!

farmerlucy

My lifetime risk was 50% but I can't tell you when that peaks. Also I know there are others here that take lexapro and a pharmacist confirmed it was ok. For some reason Drugs.com shows a moderate interaction to it and Tamoxifen. I would ask your pharmacist to check it. I take Effexor and I really like it.

I chose a PBM not only because of the risk but also because I was going broke paying for the high risk screenings. As it turns out there was a small IDC hiding in my extremely dense tissue. Not a common outcome but it happens. Best of luck w your decision

MsVeryDenseBreasts

Hi Marketingmama. I'd recommend you search the other threads to read what people are dealing with who have opted for BMX/reconstruction, and consider the pros and cons carefully before deciding. I'll admit I did not have an appreciation for the possible complications and quality of life issues if things don't go great before I read those threads. It's a one way train. You have no way of knowing in advance if you could be one of the unlucky souls dealing with months (or a lifetime) of unplanned irritation, pain or other complications. A lot of people seem to think BMX is like getting a boob job (implants). The media is likely partly to blame for the way they skate over these descriptions when celebrities go the BMX route. My situation is similar to yours. I'm pondering it, but I'm not there yet. It's a tough call. All these decisions are such a tough call and there is no perfect info. All the best to you. If you gain any helpful insight on your journey, we're all ears.

leaf

When doctors give patients information and opinion about their situation, I think it is important to not only give them the known information, but also a feeling about how well we know that information. Unless you have a severe family history, they probably don't know your numbers very well. If they have this much problem in estimating ONE WOMAN'S risk of breast cancer, think of how hard it is to estimate YOUR risk of breast cancer when we know very, very little about the long term risks of LCIS (at least an LCIS person withOUT a significant family history of breast or ovarian cancer.)

http://jnci.oxfordjournals.org/content/98/23/1673....

There is very, very little data concerning the long term (in other words lifetime) risk of breast cancer in women who have been diagnosed with LCIS and nothing worse (such as DCIS or invasive breast cancer.) The papers they use in most papers is very small. In this paper, they looked at 20 LCIS cases with an average followup of about 50 months (about 4 years - yes they describe this study as 'long term' - at least one of the patients was followed for >15 years),

Mean follow-up was 50.3 (range, 6-212) months. Of cases excised, 1 of 81 (1.2 %) ALH and 1 of 20 (5 %) LCIS cases were upstaged to ductal carcinoma in situ (DCIS) and invasive lobular carcinoma (ILC), respectively. Only 1 of 101 (1 %) concordant lesions was upstaged on excision. Of the cases observed, 4 of 65 (6.2 %) developed ipsilateral cancer during follow-up: 1 of 51 (2 %) case of ALH and 3 of 14 (21.4 %) cases with LCIS (2 ILC, 2 DCIS). During follow-up, 2.9 % (4/138) patients with excised or observed LN developed a contralateral cancer. http://www.ncbi.nlm.nih.gov/pubmed/22847124

In the case of LCIS, almost everything is controversial because they have very little data to go on. http://www.ncbi.nlm.nih.gov/pubmed/22106556

These decisions are hard. In my case, I wasn't given much of a choice (because my surgeon refused to do PBMs). I may have chosen to not have PBMS anyway, but I would have liked to make my decision myself, and I have other issues about my breast surgeon.

As the others have said, do your homework. Find out not only what your risks are, but how sure we are about those numbers. Check in with both your heart and your head (how do you feel about getting mastectomies vs screening in your heart, and what is your real risk in your head.) There is no one 'best' solution for everyone.

marketingmama

Thanks ladies. All three of your posts make it crystal clear just how unclear LCIS is. And yes, I have done tons of reading on these boards and elsewhere. To be honest, no decision will be simple or easy. I know that for sure. In the meantime, I am expecting to get my second opinion path results tomorrow, and have been pretty ill at ease all weekend. The anxiety is tough.

I learned about my LCIS 5 months ago. I have such admiration for those of you who have been living with these uncertainties for so much longer. Time will tell what path I take. No matter what, I really appreciate the support theses boards provide

marketingmama

Hello Ladies,

I've made the tough decision to proceed with a PBMX. After a lot of soul searching, I just knew I wouldn't be able to handle the stress and anxiety of continual testing. Just not worth it to me. I know the surgery and reconstruction will be challenging but I believe it's worth it for my peace of mind. It also helped that my husband and family fully support this decision as well. I know so many of you are doing incredibly well without going the surgery route and I truly admire your strength.

My surgery date is May 21. Faster than I expected could be done but I'm honestly glad I'll have less time to dwell on it.

All the best,

Lesley

farmerlucy

Congrats on making your decision Lesley. For me the thought of surgery was much worse than the actuality of it. You got this!

marketingmama

Thank you farmerlucy. I'm scared but know I've made the decision that is right for me and my family.

hartrish

glad you made your decision and you are at peace. I did BMX with reconstruction on April 16th. I had ILC in both breast. Glad I went ahead with surgery.

Penzance

Hi Leaf

Thank you very much for another really helpful post.

Went for a 2nd opinion and am even more confused.

1st round, November 2014. Biopsy of fibroadenoma, diagnosis of PCLIS, told 50% chance invasive already. Small hospital, do gynecology/obstetrics + geriatry, don't see a lot of cancer. Young, bossy, ambitious surgeon looked at me like calf with 2 heads and insisted needed treatment urgently... after her return from holiday in January. Lumpectomy, sentinel node biopsy (I found that out from reading her note to the anesthesist, she never told me about it - how the hell I am supposed to give informed consent?) + 5-6 weeks radiation (I told her I wanted to breastfeed if I had kids one day, she never mentioned radiation would make that impossible). Didn't want me to get 2nd opinion.

2nd opinion, April 2015 (couldn't get time off work). Huge research hospital. 3D mammo, ultrasound scan + macrobiopsy (Mammotome). No MRI as luteal phase. Results identical except fibroadenoma decreased in size by 30% & plain LCIS, pleomorphic not found again.Professor visibly took his time over very detailed reports + not the laid back, happy go lucky type. Insisted that was in situ, not behaving aggressively (otherwise there would have been changes), could remain static all my life. Recommended watchful waiting with 3D mammo + ultrasound scan + MRI at least annually. Was walking on air when left.

3rd opinion, May 2015. Posh private hospital, do a lot of self-funding overseas patients (UK, Middle East etc.). 15' interview with very important and super mega busy surgeon. Talked all the time (including to a friend on the phone while looking at my biopsy reports) and interrupted me whenever I tried to say something. Spent 5 minutes arguing about the fact that I hadn't waited since November 2014 to get a 2nd opinion as he coudln't see the April 15 report under his very nose. Then he erupted: I think he's had a disagreement with that hospital in the past, unless it's jealousy issue. He repeatedly asked me how I was expecting to be followed by 2 different hospitals (phone? email? snail mail?), then insisted the lobular was probably invasive by now because of the delay, that in his experience if you opened a woman with a biopsy report of LCIS what you found was ILC and that the subtype I had (pleomorphic) was extremely aggressive. He kept saying I was in denial and that if I had hoped to avoid treatment I had come to the wrong place, that his job was to treat people, not to tell them what they wanted to hear. He wanted to book me in for a MRI the next day (tough luck, back at work) and surgery (mastectomy) the next week and said I would need chemo (I thought lobulars were supposed to be oestrogen positive?) because I had waited so long. He made derogatory comments about my job,. saying he couldn't see how anyone could risk their life for such a crap job.

Will not see that chap again as am not a calm person and he is just adding more stress. Thinking of having MRI sooner. Has anyone had a PLCIS which then turned out to be plain 'normal' indolent LCIS?

That 3rd surgeon also made harsh comments about the 'extreme' density of my breasts + the 'huge fibrocysctic lumps' which 'would have to go' (I guess implants make nicer breasts?). I have looked at reducing coffee intake and taking primrose oil supplements, flaxseed etc. to make those breasts less lumpy as I do appreciate they are a challenge for radiologists, and I am not doing it (dense, lumpy breasts) on purpose to annoy people. Any other tips?

At least I'm lucky in that I saw this chap last. If I had seen him just after the 1st surgeon, I would probably have cancelled the 2nd appointment, and booked surgery asap.Am having pbms at work (HR think wanting to have surgery is the same as 'not wanting to stay' or wanting an extended holiday...) + need to find new digs (renting...). Am really confused now and looking at Leaf's post about the lack of data (I did stats at uni ) really, really helped.

marketingmama

Penzance,

I really feel for you right now. How incredibly confusing to be getting so many differing opinions and most importantly, not being treated with dignity and respect. This is all hard enough without having to deal with docs who are unsympathetic jerks.

The whole LCIS thing is very confusing. In talking with my plastic surgeon about my two opinions, he said "and if you get a third opinion, you'll likely get yet another opinion." As has been pointed out by so many on this Board and as my Breast Surgeon just told me, there simply isn't enough data on LCIS because we don't realistically know how many woman have it.

I think the decision one must make about next steps post-diagnosis is extremely personal and one that in part depends on your own makeup and inclinations. For me, anxiety over testing and just feeling like I had a cloud over my head was the number one reason for opting for PBMX. Secondary to that was a strong view that I wanted to take control over my own future and this felt like the best way to do so (again, FOR ME). I have lost too many loved ones to cancer or seen others suffer from treatments. I simply wanted to eliminate this one particular risk (knowing full well that there will always be others). All this being said, I completely understand NOT opting for the mastectomy and I greatly admire those women who have the emotional equilibrium to move on with their lives regardless of LCIS, Tamox or testing.

I think our healthcare providers must help us make the choices that are best for us individually and I truly hope that you find someone who will help guide you to a decision without judgement or harsh words.

Wishing you all the best on this journey.

Lesley

leaf

Of course, almost everything in LCIS is controversial.

I don't know if it would be possible to pin down more clearly whether you have classic LCIS or PLCIS. Did you get a 2nd/3rd opinion on the readings of your first _slides_ (that were interpreted as PLCIS), in other words, a pathology 2nd opinion on the first PLCIS slides? It took several months for me to do this, but I had my slides/sample sent to a major cancer center, and had them re-read my slides. In my case, it came back very similarly (my original report was classic LCIS with features of ALH; the 2nd opinion said classic LCIS with ALH.) There was a total of about 15 words on the 2nd opinion. This was back in about 2008 or so, and at that time the 2nd opinion cost about $300 per biopsy. It took about 3 months to get my 2nd opinion, even though my 2nd opinion was only about 20 miles away from my first opinion. My insurance ended up paying for most of it. I would sent it to a top notch place. I sent them to an NCI- certified center, but it wasn't Harvard or MD Anderson. (Assuming you are in the USA, I don't know if the top-notch pathology place would be Harvard, MD Anderson, or someplace else - that has seen lots and lots of LCIS/PLCIS.)

If I'm reading your post correctly (I'm notorious for reading posts wrong), it looks like consult #2 used a 2nd biopsy? Of course, it is definitely possible to have classic LCIS in one place and PLCIS in another.

The reason why I think this may be important is that if you get a surgical consult, they are looking at the pathology report (if there was just one.) Personally, I would certainly lean towards another type of treatment if I had PLCIS vs if I had classic LCIS.

Of course, there is the problem if pathologists are using different definitions of LCIS vs PLCIS.

The most long term study I can find about LCIS is this study from Chuba in 2005. http://jco.ascopubs.org/content/23/24/5534.long . Unfortunately, it doesn't specify if people had LCIS or PLCIS, whether or not any groups took antihormonals, etc. Especially in the earlier cases, probably PLCIS was not recognized as a category and/or was misclassified, and even around when I was diagnosed in 2005, different university websites differed in their definition of LCIS (If I remember correctly, they differed on how full the lobules had to be filled with atypical cells, how many lobules were affected, etc.) There definitely are studies about how different pathologists differ in their opinion about diagnosing pre-invasive breast cancer. http://www.ncbi.nlm.nih.gov/pubmed/24948027

This is very confusing, but luckily even PLCIS itself is not life threatening. There are always other people who have it worse. I remember one young woman (?in her 20s?) who was interviewed on ?Charlie Rose who had such an unusual invasive cancer that there were only records of a handful of other cases. I think all of these had died, so she not only had a life threatening unusual cancer, they also had no idea what treatments might be better than another.

Penzance

Hi Leaf and Marketing.

Thank you very much for your answers. Great advice as always, Leaf!

The pathology centre who worked on the first biopsy are willing to send them to another centre, provided they have a letter/fax/email from a doctor there. I will therefore ask the second place (a really big hospital, who do nothing but cancer) to have a look at the first biopsy. I think I'll have to ask them for another appointment though.

All 3 surgeons I've seen were in France where I'm from but I work in the UK. I have been going back to France whenever I needed medical treatment as it was usually of the non urgent kind (glasses, dental checkups, ultrasound scans of my dense but otherwise apparently healthy breasts etc.). However my employers are being very difficult (basically they don't want someone with cancer among their staff), have been trying to make me resign, and are refusing to let me go to France for medical appointments or personal stuff (family issues etc.) even though I am using my holidays. They have told me they couldn't accept a diagnosis from a 'foreign' doctor, even if a NHS GP vouches it is not bogus. Both the surgeon and the radiologist at the second hospital publish and attend conferences, and guess what, the language is English. I had a similar issue last summer when I got a MRI in France for a suspected herniated lumbar disc (thank God I did - when this bc issue cropped up, I worried like hell that the symptoms might have been caused by a secondary): I was told there was no evidence the scan was of my back... So I have had to ask a British GP to refer me to a British hospital (a small one... you can't choose which hospital they send you to) for a fourth, British opinion. I just hope they are willing to use the biopsy samples and pictures from November 2014 and April 2015: I don't want another biopsy so soon, especially as in the UK they are rather heavy handed. In France, we are more conservative, especially with young women. Am having MRI next month (in France). I don't want to be followed by x doctors either, I had rather stay with the ones I trust (the big cancer centre which ironically was at the very bottom of my list as it is the least convenient to get to, but they have superb facilities and staff).

Leaf, it is classic LCIS you have isn't it?

Best wishes to you two and to everybody else.

Penzance

MRI done (usual radiologist, not specialist hospital). Dr told me he needed a couple of days to study the pics and kept all the past exams for comparison. Advised me to go back to spec hospital with results, and do MRIs there as well, as they deal with bc all the time (the patients usually have a diagnosis alreadye), he does a lot of screening so only sees it in some of his patients. At least having the MRI with a Dr I've known for years was less anxiogenic and he made me laugh! Really friendly nurse too,did a good job with the catheter.

leaf

Leaf, it is classic LCIS you have isn't it?

Sorry about the late reply; I'm finally pursuing other paths in my life, and want to pursue other things in my life, at last.

Yes, I have 'garden variety' classic LCIS, I assume type A (according to the website below)although my pathology report doesn't specifically say. I think most experts believe that LCIS variants may pose higher risks than classic LCIS, so there are undoubtedly some women with LCIS that have a higher breast cancer risk than I do (even though we may have a lot of trouble in giving a number to that increased risk.)

Here's the best site I've seen for classifying LCIS and its variants (at least according to this pathologist) at UCSF in 2012. Since almost everything in LCIS is controversial, I do not claim that everyone agrees, but at least its one classification system. http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh... When I was first diagnosed in 2005, different prominent website had somewhat different LCIS criteria, and even if everyone had the same criteria, there can be disagreements between pathologists, particularly for non-invasive breast conditions.

In this study of pathologists, in which diagnostic interpretation was based on a single breast biopsy slide, overall agreement between the individual pathologists' interpretations and the expert consensus-derived reference diagnoses was 75.3%, with the highest level of concordance for invasive carcinoma and lower levels of concordance for DCIS and atypia. http://www.ncbi.nlm.nih.gov/pubmed/25781441

I think humor is a great way of handling stressful situations, as long as its reflecting the attitude of the patient. The vast majority of us can't choose our breast cancer risk, and the vast majority of doctors are handling patients as well as they can.

Best wishes on whatever path you choose.

Adctd1

I am pretty much in the same situation. One breast mammogram three years ago showed ALH and ADH. Now LCIS and ADH and flat epithelial atypia. I have no family history of cancer but...PBMX or repeat mammograms and worries. Don't want tamoxifen for sure. Im overweight and I could not bear it if I ended up having one cancer whilst trying to prevent another.

MelissaDallas

The risk of uterine cancer for tamoxifen is almost statistically insignificant-only about 1

614

Dear Penzance:

The wondering and not knowing is the worst.  Do not ever go back to the 1st and 3rd doctors!  The second doctor that you saw sounded amazing.  There is nothing wrong with getting a second and third opinion.  No one has the right to denigrate your job.  I am sorry that your employer is making your work enviroment so difficult and stressful for you.  Yes, you do get many opinions when you see many doctors and it is very hard to decide which doctor is correct.  It is a personal decision and only you know what is best for you as far as your treatment is concerned.  However, that being said, you MUST be your own advocate!

After lumpectomies, my pathology report showed that I had Pleomorphic Invasive Lobular Carcinoma and PLCIS in one lump, and  PLCIS with ductal involvement and invasive tubular carcinoma in another lump in the same breast.  The first lump is where my malignancy was detected as the malignancy had grown in a lump that was previously biopsied and was found to be benign.  I was extremely lucky because I believe that this is why I was able to be diagnosed, since the lump changed.  (Lobular Carcinoma and LCIS is extremely hard to detect and it is "sneaky".  Pleomorphic is also rare.)  The second lump also was previously biopsied and was benign.  Nothing showed on the mammogram or sonogram regarding this lump but after the MRI, they decided that I should have a second biopsy of that lump.  The biopsy came back benign but the name changed from fibroatenomateous hyperplasia to flat epithelial atypia.  I had both lumps removed.  The second lump turned out to to have the PLCIS and tubular carcinoma.

I live in Florida so my oncologist is in Florida.  I had my treatment (surgery and radiation) at MD Anderson Cancer Center in Houston, TX.  ALL of my doctors are FANTASTIC and they saved my life.  I trust all of them. No one is threatened by the second opinion or the fact that I am seeing doctors in Florida and in Texas.  My doctors at MD Anderson Cancer Center stated that I did not need a bilateral mastectomy because doctors would be watching me after my treatment and I would be taking Arimidex/Anastrazole.  Luckily, I did not need chemotherapy because my oncotype test was low.  I had the double lumpectomy and radiation.  I also had an oophorectomy because I was not in menopause (not even close, although I was 49 at diagnosis), and I needed to be menopausal to take the Aromatase Inhibitor.  (I couldn't take tamoxiphen because I am a poor metabolizer.).  I was diagnosed in June 2014 and I have completed my treatment.I will have mammograms and sonograms every 6 months and MRI's as well. 

I wish you the best with all that you are going through.  Good luck with your doctors and with your medical treatment decisions.  Are there any breast cancer support groups in the area where you live?  That may be helpful for you.

GOOD LUCK.