Accidental LCIS Diagnosis
Hello. I'm new to this forum and appreciate the opportunity to share my story and get feedback. I'm 49 YO, two children, no family history of breast or ovarian cancer. My father had testicular cancer and my maternal grandfather died of colon cancer (as did a few of his other first degree relatives). I have very dense breasts but all mammograms have been normal to date.
In mid-December I had a breast reduction and lift. As is standard process, my tissue was sent to pathology. 24 hours after my procedure I saw my plastic surgeon and he shared that he got the path results back and my right breast showed various spots of LCIS. He said it was actually good this was found and advised me to see a breast surgical oncologist, which I did yesterday. Went to University of Pennsylvania, which is really the best in the Philadelphia area. They also reviewed my slides and concurred with the original diagnosis. Was told that I need to have an MRI of both breasts as a next step to see if anything abnormal is going on (they are not looking for more LCIS--just actual cancer). Because of my surgery just a month ago, need to wait another month for the tissues to heal so the MRI is accurate. In the meantime, they told me my risk of developing breast cancer is probably double what it is for the average woman. So about 11% for an average woman and maybe 20-25% for me (especially with no family history--which also is why I don't qualify for genetic testing). They explained the tamoxifen option but i am very reluctant to take it and unless the docs strongly advise otherwise, would prefer every 6 month monitoring (MRI and Mammo).
So plan is to return to Penn's radiology center (they want me to have the MRI there) in one month for the MRI. I've been warned that there are often false positives requiring needle biopsies and that i shouldn't be overly alarmed if they have me come in for a biopsy. I've heard this is common with MRI so not worried about it.
I feel a bit like a ticking timebomb but trying to shake that sensation, as I know I have a good chance of never developing anything malignant. However, the whole thing is disconcerting and I also worry that somehow my breast surgery could have "dislodged" bad cells somehow. I have no idea though if this even makes sense or just my anxiety talking.
Anyway, just wanted to join the discussion and would love to hear any thoughts or feedback any of you well researched ladies might wish to share.
Comments
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Welcome to the BCO community marketingmama, We are sorry that your diagnosis brought you here but we are glad that you reached out to our members. there are well informed and compassionate people who offer one another support and shared personal experiences that can be very helpful to those facing and being treated for breast cancer. You may want to do some reading on our main site. Take a look at LCIS for more information. Keep us posted. The Mods
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- Welcome marketingmama!
I received my incidental LCIS diagnosis last year when having an intraductal papilloma removed. I understand the ticking time bomb feeling. For me, it took close to a year to pass. I've been through one round of MRI/ mammo follow up, and with each I needed further review. After the MRI, I was scheduled for an MRI guided biopsy of a suspicious spot. I was back in the MRI and being prepped for the biopsy the following week when the radiologist decided it was just an inflamed cyst and canceled the biopsy. Six months later, I needed an ultrasound after my mammogram. According to both the radiologist and my breast surgeon, I have "busy breasts", full of cysts. I believe that once you've been through the full cycle, you'll start to feel more comfortable about your diagnosis and recognize that it really is a blessing to be watched so closely.
I chose to take Tamoxifen. I've been on it for 15 months and am tolerating it well, but everyone responds differently. At 53, I hadn't had a single indication that I was nearing menopause before Tamoxifen. I had several months of bad hot flashes and foot cramps shortly after starting, but feel completely normal now.
Good luck with your journey, and remember that no two people follow identical paths or react in the same way.
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marketingmama---the great news is that they didn't find any invasive bc in the all breast tissue that they already removed during the reduction; I think that probably is a good indicator that you will have good results from your upcoming MRI. (as I assume they probably remove a very significant amount during a breast reduction). Good to hear that they are waiting another month to give you a chance to heal, otherwise the results might not be as accurate. I was diagnosed with LCIS over 11 years ago an my risk is further elevated by family history of bc (mom had ILC); they gave me a lifetime risk of 36.6% (and a 5-year risk fo 4.8%).. Even with that combined elevated risk (which they admitted was only their best "guesstimate"), they felt BPMs were not medically necessary. I took tamoxifen for 5 years and then took evista for about 5 years (taking a break right now whiIe I transition to a new oncologist) and tolerated aboth meds well with very minimal SEs. I continue with close monitoring, alternating mammos and MRIs, with breast exams on the opposite 6 months. (which I also think is a blessing). The great thing about tamoxifen (besides it decreasing risk significnatly by about 50%), is that it also decreases breast density significantly, making it easier to see things on mammo. And you could alsways give it a try and see how you tolerate it. There is no rush with LCIS, since it is non-invasive. So take all the time you need to make your decisions, don't let anyone rush you.
Anne
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Hi marketingmama :
I actually received my LCIS diagnosis after I was diagnosed with ILC of the left breast. I had an MRI to make sure that everything was ok with the other breast. When I saw the breast surgeon for the surgery consultation (had a double mastectomy on July 15th), he said LCIS was a strong risk factor for developing breast cancer in the other breast. That he would have recommended a double mastectomy with that finding alone. Felt I had the LCIS before I developed the ILC.
Once I knew I had breast cancer in one breast I knew I wanted a mastectomy. I wanted a double so that I would not have to worry.about developing cancer in the other breast. So it worked out for me. Now that it has been almost six months things are better ( not ideal but better).
As mentioned above, everbody's cancer is different. You will have more information after the MRI. The most important thing is doing what feels right for you after you speak to your doctors.
Sending hugs and good.wishes your way. 😊
Barbara
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Thanks to all of you lovely ladies for posting and sharing your stories. It's truly comforting to have the support of those who understand--particularly since LCIS is not easy to explain.
Anne, I actually didn't have a ton of breast tissue removed. One breast was a D cup and the other a large C. I wanted to come down to a regular C and get everything lifted up! I'm a small person at 5'1" and wanted my breasts to be more proportional to my frame. So I wasn't one of those women with huge breasts who had signficant amounts of tissue removed. But very true that in what was removed, no cancer was found and that is reassuring.
It's funny. I'm oddly calm about the whole thing. I feel reassured that whatever happens, I'll have time and that if they do find cancer it will be early stage because prior mammos were clear (I guess I'm assuming this---perhaps I shouldn't??). I am still worried about tamoxifen. I have a history of depression and anxiety (take meds for it) as well as migraine headaches with aura. I'm sure the docs would say it's fine to take it but I hate the idea of adding yet more medication to the list of stuff I already take. And I guess mostly, I'm worried about the "instant menopause" thing. Not sure how far off I am from it as I had my uterus removed two years ago but still have ovaries. Without having a period, I can't gauge if I'm starting menopause since typically the first signs are irregular periods. Anyway, tamoxifen somehow scares me so will wait and see the MRI results and discuss pros and cons with my doc. I am reassured that I'm at an amazing breast cancer institution and believe I'll get really good guidance.
Right now, the hardest thing for me is being distracted and thinking about this so much. I'm calm but I'm definitely processing. I have a pretty high pressure job and a lot of responsibility. I find myself less than focused and definitely less "gung ho" with work --- which is far different from my normally ambitious and driven work pattern. I've only been with this firm for 2 months so I want to be sure I perform as expected (though my boss is aware of my situation and he's super supportive).
Thanks again to all! I'm so glad to have this forum.
Lesley
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marketingmama---if you do end up on tamoxifen, make sure you check with your doctor first about the meds you already take. I think Effexor is the only anti-depressant that doesn't interfere with tamox. (but I could be wrong, so definitely check with your doctor about it). As for the "instant menopause": while tamox does have some SEs that mimic some symptoms of menopause (mainly hot flashes), it does NOT cause menopause itself. (It blocks estrogen from the receptors in the breast tissue, it does not decrease the amount of estrogen you have (the AIs decrease the amount of estrogen). Everyone tolerates it differently, you could always try it and stop if you can't tolerate it.
Anne
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Thanks Anne. Really good to know because Lexapro (my antidepressant) is on the list of contraindicated drugs so will bring up with my doc next time I see her. Super interesting about how tamoxifen does not really create menopause but mimics some of the SEs. Didn't realize that and appreciate the clarification. -
There's more than one antidepressant that's ok to take with Tamoxefin. I take Pristiq, and have had no problems.
I can really relate to your current distraction/fixation. When I was diagnosed last year, I found myself spending several hours a day researching, reading and printing every relevant article I could find on-line. I still search weekly, but it's no longer all consuming and I can go days without even giving it a thought. I also have a high pressure job and my focus eventually shifted back to the work at hand.
Jeannie
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Hello ladies. Could use your advice and thoughts. As I posted above, LCIS was accidentally found when I had a breast reduction. I saw a breast surgeon at the Hospital of University of Pennsylvania---their breast center is very well regarded, as is the hospital itself so figured I couldn't be anywhere better. The surgeon recommended I get an MRI to see if anything abnormal and told me I'm now considered high risk. So I had the MRI and all was unremarkable. No areas of concern were seen. So great news! Doc's nurse practitioner posted the info via their patient portal and also they posted my test results (again, they were fine). The nurse later wrote to me saying the Doc said I should plan to come back for a mammogram in 6 months. No other comment.
I am thrilled that I"m fine but was a bit surprised that the doctor didn't even talk about whether I should take tamoxifen. I can only assume that because I have no family history, she doesn't believe I need to do anything more than be scanned by MRI and mammogram on a 6 month schedule. What do you all think? Should I also talk to an oncologist? I'm inclined to just try to forget about my LCIS until my next mammogram but don't want to put my head in the sand.
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If you feel there is a possibility you may want to take tamoxifen, then I think its totally reasonable to talk to an oncologist. I hear that at some places, breast surgeons prescribe tamoxifen to LCIS patients. While my breast surgeon did not offer tamoxifen, I felt much more comfortable going to an oncologist.
I went to an oncologist for my tamoxifen, because in general, oncologists are trained more in (nonsurgical) medications than are surgeons. (I should say that in general surgeons do not have a great reputation for handling non-surgical issues, just as medical internists/oncologists do not have a great reputation for handling surgical issues.)
I took 5 years of tamoxfen, and I was on sertraline the whole time. At my 2nd opinion NCI-certified cancer center, they said that their LCIS patients are offered tamoxifen.
Since we have little if any idea how LCIS increases the risk for breast cancer (at minimum when LCIS is not clonally related to a subsequent breast cancer), then I think we can't be sure how tamoxifen decreases future breast cancer risk in LCIS patients.
I'm no expert, but I gather that its still somewhat controversial how important the CYP interactions are, particularly since many people are not tested whether or not they have the CYP2D6 wild-type enzyme. (I certainly was not tested, and I don't read much about people's CYP2D6 status on this forum.) http://www.ncbi.nlm.nih.gov/pubmed/14652237 I chose to select sertraline for my mental health issues as its not as strong a CYP2D6 inhibitor as paroxetine. It sounds like the drug interaction message has not always hit clinical practice though, at least in this study in the Netherlands. http://www.ncbi.nlm.nih.gov/pubmed/23760858 Note, also, that for most drug-drug interactions, only a PORTION of patients get the interaction; not everyone experiences the interaction.
Also, it may be less relevant whether or not you have the correct level of the tamoxifen metabolite, because tamoxifen is not ESSENTIAL for LCIS treatment, but is 'only' an option.
Since they can't agree as to how much LCIS increases one's risk of breast cancer, at least for any one particular individual, then the relevance of interactions becomes less well known too. When LCIS patients go on to get breast cancer, the breast cancer often occurs at a place in the breast that looks totally normal on imaging. So tamoxifen may work in a different way for LCIS patients than it dose for DCIS or invasive breast cancer.
So, what I'm trying to get across, is that, like in almost everything concerning LCIS, there is murkiness or controversy.
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Thanks Leaf. Really appreciate you taking so much time to respond (as always). I am conflicted because I honestly don't want to take Tamoxifen if I don't need to...and I'm not sure that anyone will be able to tell me one way or the other. I'm under the impression that with a 6-month cycle of imaging, if cancer is to occur it will be caught very early. Am I crazy to make this assumption? I'm struck by your comment "When LCIS patients go on to get breast cancer, the breast cancer often occurs at a place in the breast that looks totally normal on imaging". Can you elaborate? If it's not apparent on imaging, how is it actually discovered?
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My bad. I meant to say 'When LCIS patients go on to get breast cancer, the cancer often occurs at a place that lookeD normal on imaging (when the LCIS was discovered).'
Clear surgical margins are not considered essential, based on the fact that subsequent invasive cancer can occur in either breast. -http://www.cancernetwork.com/oncology-journal/chal...
You are right: the object of the screening for LCIS is to detect breast cancer early.
I am one of the unusual LCIS patients in this forum (I gather) in that I only get twice-a-year clinical exams and yearly mammograms (This is what the NCCN recommends (with or without antihormonals, or bilateral mastectomies; unlike awb I have only a weak family history.) I completed 5 years of tamoxifen. I started out with imaging every 6 months or so for the first few years, mainly because at my institution, even if a biopsy is benign, they want to follow up with imaging in 6 months.
They often do much more frequent imaging at first because its difficult/impossible to detect breast cancers early on that may be present in a different location at the time of the LCIS diagnosis. They estimate most breast cancers (with the notable exception of the rare inflammatory breast cancer) have been in the breast for some 5-10 years (not a typo) before they can be detected by ANY means. Since I was diagnosed with LCIS almost 10 years ago, if I had invasive breast cancer present when I had my LCIS diagnosis, it would almost certainly be detectable by now.
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Hello Marketingmama,
I'm sorry your finding yourself in this situation. I know how hard it is to make a decision with so many unknowns! In response to your comment about looking normal on imaging, Ill share my experience. I was diagnosed with LCIS (also an incidental finding after having a cyst removed). I had an excisional Bx which showed it to be a variant of LCIS called pleomorphic. Margins were not clear. I struggled with the choice to have a PBM or watch and wait. I have very dense breasts which are fibrocystic. After waiting 6 months I decided to go ahead with the mastectomy even though I had just had a "clear" mammogram. My instinct was to go ahead with the mastectomy because of all the information I was reading regarding pleomorphic lcis. After my mastectomy the pathology came back positive for a 1.5cm area of invasive cancer( along with a very large area of pleomorphic lcis). The Dr. was very surprised. It had not shown up on any of my exams or imaging. My situation is different than yours in that I had a more aggressive form of LCIS. I wish I could give you clear advise. There just is not any "right" or "wrong" decision. You have to do what is right for you and your situation. With a good medical team, they can help guide you. What I will say though is be well informed and follow your instinct. Don't let anyone else make that decision for you.
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Since you've had your uterus removed, blood tests can tell you if you are pre or post menopausal. If you are post, than AI's (aromatose inhibitors) are another option, so you may want to research those drugs also. If you chose to not do any drug, there are natural ways to try to reduce your estrogen such as losing weight and avoiding plant based estrogen such as soy. There's a thread on here on this topic.
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Thanks all. I've given some more thought to this and really want to avoid meds. So I'm going to proceed with the imaging program. My weight is normal but will start avoiding soy. I'd read about soy a while back so appreciate the reminder. Sushi won't be the same! -
Hello everyone,
I was diagnosed with LCIS 2000 at age 37, I had a screening mammogram that showed micro calcifications and the subsequent resection showed the LCIS. My 41 yr old sister developed invasive DCIS at the same time. We are both well after 14 years however another sister developed DCIS and invasive papillary carcinoma currently. My first sis was tested for BRCA and was neg. My second sister is going to have genetic testing also so we will see where we will go from there. Incidently I have an older brother that passed from Prostate cancer and our father, age 71 of pancreatic.
Since I was diagnosed with LCIS I chose to step up survillance, have yearly mammo's had one MRI about 8 years ago and am vigilant about self breast exam to pick up any changes early. I chose to not take Tamoxifen. The first few years were nerve wracking but it got better with no problems as years moved on. I would recommend being informed and continued close monitoring.
Best of luck everyone!
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Thank you so much Lee.
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Thanks very much Lee!
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