Just diagnosed with LCIS
Hello! I am 49 years old and I was just diagnosed with LCIS. When I had my yearly mammogram in Dec 08, they found calcifications in my left breast (aka wonky boob). I had a stereotactic biopsy in early February and a surgical biopsy with wire localization and dye on March 23rd. I had my follow-up with the surgeon a few days ago and she told me that I do not have cancer (woohoo) and that I don't need to have another mammogram now until December 09. I thought that I would be more closely monitored now so I'm not sure what to think of this. Also, it has been almost two weeks now since the surgery and I'm still feeling some occassional throbbing. Is this normal? I finally took the surgical tapes off last night and surprisingly the incision looks great! Any information you could give me would be greatly appreciated!
Comments
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Sunflower - I am also surprised that your MD is so casual. I think you will a number of threads here that discuss the close monitoring generally suggested with your dx. I am not sure what country you are in, but most women in the US are getting bilateral dx mammograms 2 x a year or a mammogram and MRI on opposite 6 months periods. In addition, there are visits for a professional breast exam on the other quarters - essentially some kind of monitoring every three months. You may want to discuss the plans w/ an oncologists.
As for the bx, it takes a little while for the throbbing to settle down, even from a bx. I actually wore only sports bras for at least 6 weeks after my bx. I didn't like anything more on the incision.
Best wishes. - Jean
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sunflower---do you have an oncologist? Surgeons, while they can be excellent at what they do, are specialists in surgery, not cancer--oncologists are. An oncologist can help figure out your overall risk of invasive bc as well as your risks and benefits from taking preventative medications such as tamoxifen or evista and be an overall coordinator of your care with the LCIS. I was diagnosed over 5.5 years ago with LCIS (microcals on mammo, core biopsy, then lumpectomy)--I just finished my 5 years of tamox with relatively mild SEs, and continue with high risk surveillance: MRIs alternating every 6 months with digital mammo, breast exams every 6 months on the opposite schedule so that essentially I'm "seen" by some method every 3 months. It did take me a long time to get my oncologist to agree to do MRIs (he doesn't like the possibility of false positives which could lead to more anxiety and biopsies)--nearly 3 years, but I think MRIs are becoming much more commonly used now with LCIS, and that's a good thing as lobular bc is often hard to detect. I had stitiches that kept backing out of my incision, which delayed the healing, so it was tender for quite a while. Praying you feel better and better each day. (I wouldn't push for an MRI until the area is completely healed inside and out--possibly 6 months or more, ask the surgeon---as post op changes could show up on the MRI and be mistaken for something else).
Anne
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I think what is confusing everyone is you said you were diagnosed with LCIS. Were you diagnosed with LCIS or did they say you just had calcifications? If you just had calcifications that were not cancerous then yes you probably can wait a year. If you were diagnosed with LCIS then I would think you need to be followed a bit more closely because LCIS is cancer that has not spread. Better safe than sorry. Just my thoughts... Tami
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Hey everyone! Thanks for your quick replies to my post!
Jean - I agree, my surgeon is just a little TOO casual. Very nice doctor but I'm definitely not comfortable with waiting until December. I already have anxiety and waiting that long would just put me near the edge of insanity! Some kind of monitoring every 3 months seems reasonable to me. I will be scheduling an appt tomorrow with a new GYN as my previous GYN had back surgery last year and cut back her hours. Hopefully this new doc can refer me to an oncologist. I actually had a much better day today... no throbbing at all. I finally took the surgical tapes off the other night and the incision looks great! Much better than I thought it would look.
Anne, I do not have an oncologist... yet. I wonder why my surgeon didn't mention an oncologist for follow-up? Thanks for the info you provided! Oh, how do they do breast MRI's?
Tami, I'm a little confused by your comment that I was confusing everyone...lol. A radiologist told me that I had calcifications when I had my mammogram done in December. I was diagnosed with LCIS after my surgical biopsy on March 23rd. I thought that LCIS was NOT considered a cancer, but rather abnormal tissue growth that signals an increased risk of developing breast cancer later in life??? Regardless, I agree that it should be followed a big more closely!
Laurie
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Laurie---you will find there is a LOT of controversy surrounding LCIS as to what exactly it is or what it should be called; technically it is a stage 0 in-situ non-invasive bc; meaning the cells are cancerous but they have not moved from the lobules into the surrounding breast tissue. Many in the medical community still feel it is just a marker for increased risk of invasive bc in the future. Personally, I"ve decided that I really don't care what it is called (although all my docs believe it is cancer, and so do I) as long as it is treated appropriately. The breast MRIs are not bad--you lay on your stomach with the breasts thru holes in the table--it's a little noisy and you have to lay very still. No pain involved (except an IV! --needed for the contrast dye).
I would recommend finding an oncologist; he/she can coordinate your care--order MRIs, mammos, US, do breast exams, help figure out your overall risks of invasive bc and your risks and benefits of taking preventative medications (tamox or evista) if that's what you want to do.
Feel free to PM me if you'd like.
Anne
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Laurie - I've had DCIS (stage 0 cancer) and LCIS & ALH (non-obligate pre-cursor to cancer - essentially upping my risk - straight line, no decreases over time). Both required surgery, and the DCIS brought me 33 radiation treatments. I am now taking tamoxifen and alternate MRIs and mammograms every 6 months. I see my oncologist every 3 months this year.
My surgeon was pretty clear - he cuts, oncologists treat. My onc treats BC only and has a particular interest in high risk patients. To me, that was an important factor in finding a doctor. I don't plan on ever having a BC that requires chemo, and wanted someone who would respect me and the risks I have. So far, so good. Because I've had DCIS, I cannot take anything other than tamoxifen. There are risks, but overall, my risk of the really bad SEs is very, very small compared to the risk of getting an invasive BC. I am hoping that the tamox + the high level of monitoring will keep me off the invasive list.Time will tell.
I found my onc by asking the radiologist who has done all of my biopsies.
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I was diagnosed with PLCIS in 2007. I had a lumpectomy, radiation and I am a little over a year into my 5 years on tamoxifen. I know that the fact the pathology came back as a "more aggressive" type of LCIS had something to do with my treatment selection, but I played an active role in my own advocating! I felt I was given a gift of ealy diagnosis and I wanted to make sure I didn't squander it. Read everything you can (even though some of the info is contradictory) and hook up with an oncologist!
Best of luck! Tons of positive vibes!
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Good news everyone! I left a message with my surgeon today and she left me a message two hours later and said that she is going to refer me to an oncologist. Woo-hooo! I feel so much better now! I was kinda feeling left out that I don't have an oncologist. (sniff sniff). Hopefully I won't have to wait too long now for an appointment. This whole thing is really dragging me down. It's all I ever think about now. I want my old life back!!! (Is it okay to vent here too?)
Laurie
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Laurie - That's what we are here for. We laugh, we cry and we vent. This is the place to share what's going on. At least we all can understand. When I first found out about my LCIS it was ALL that I thought about too. Best wishes w/ the oncologist! - Jean
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I have an oncologist, and am happy I am seeing one. (I take tamoxifen, and I can't stand my breast surgeon.)
But FYI, when I went for a 2nd opinion at a Major Institution (NCI certified), they have breast surgeons follow and prescribe tamoxifen for LCIS patients. So different places do things differently.
I'm a pharmacist, and in general, medical docs know much more about meds than surgical docs (except for the meds that are directly used in surgery.) When a surgeon has a patient come in for surgery, (s)he usually just copies down the meds the patient is on, and doesn't handle medical issues. So I'm much more comfortable with an oncologist than a surgeon for medication issues.
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I got an appointment!! I got an appointment!! I see an oncologist on april 28th! Just three more looooooong weeks. Sigh. Everything still feels surreal. I still can't believe this is all happening. I was planning to have neck surgery this year and then this whole breast thing just happened without my permission. Now it's become my biggest priority. I think about when I go to sleep at night. I think about it when I wake up in the morning. I think about it all freakin' day long.
Maybe I just need more kahlua in my coffee.
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Congrats! I had to wait 3 months for an onc appointment. Its good to talk to someone and get questions answered.
Its normal to think about this all day long. You want to be prepared for whatever is ahead for you.
Note: there is no huge rush about deciding what you want to do about LCIS (close monitoring, close monitoring + antihormonals, PBMs. Some insurance companies may not cover PBMs for LCIS and a weak family history as the risk is substantially lower than that for BRCA.) The usual lifetime incidence I see for LCIS (for women who are at low risk for BRCA) are about 30-40% lifetime risk (though this is a very soft figure) - they are very uncertain about breast cancer risk for individuals. Since most women are diagnosed in their 40s or 50s, that comes to about 0.8-1%/year, if the risk is linear (which it probably is, although I've seen some controversy about this.)
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Sunflower,
When I got my dx of LCIS I didn't sleep for 2 months. Heck with the kahlua get yourself some Valium...lol. That's what I used at night to sleep. But only at night. Best of luck to you with what ever you decide to do. We're all here for you so vent away!!!
Ann
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Leaf - Wow, three months is a long time to wait for an appointment! I thought 6 weeks was bad when I was waiting for my appointment with my Neurosurgeon! Question... what is BRCA and how do I find out if I'm a low risk or a high risk? There are only two people in my family who had breast cancer. My paternal grandmother and my mom's half-sister's daughter. Would I be considered a low risk since my maternal grandmother, my mom and my sister never had breast cancer??
Ann - Ooooohhhh... valium! Good stuff! I've only had it once when I had an MRI for my neck last year. I'm actually on Ambien and that seems to help quite a bit. Just 1/2 pill will knock me out in 30 minutes. Before I got my dx of LCIS, I hadn't taken an ambien for over 3 months. I didn't want to get addicted to it but now I don't really care if I do! So I'm back on it now and I'm sleeping well. Just wish I could wake up and not start my day off thinking about bc every single day!
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I just got back from the BS today. Having the prophylactic bilateral mastectomy on April 23. I am really happy and relieved to have made it through the hoops to go with my gut instinct on this. I was lucky because I had a strong gut instinct and know I can live with the result.
But the reason I am saying this here is because I was really struck again today by how totally different the oncologist's opinion was from the breast surgeon, even though they are colleagues and obviously have to work closely together. The BS really didn't want to do the PBM and the oncologist basically said, I would never talk you out of it. I can't take tamoxifen, have had my three kids, am 52 and it looks like a while until menopause. So this is the best for me. I wanted to keep my ovaries and just go through menopause normally (seems to happen very late in my family).
I finally could get my house cleaned up tonight after months of being just stuck. Also took me about 4 mos to get my way through everyone else at the clinic to see the chief oncologist.
Best of luck and don't lose sleep. The great thing is there's no hurry with LCIS. I'm a teacher, though, so I really wanted the whole summer to heal.
Ellen
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Laurie---Once diagnosed with LCIS you are now in a high risk catagory (fortunately you don't have any primary relatives with bc--mother, sister, daughter--which adds another whole demension of risk). The oncologist is the one who can take all your individual risk factors into account and try and come up with an overall assessment of your risk of invasive bc in the future (I say "try" because they don't know exactly how much risk LCIS actually confers, although it seems to be in the 40 to 50% range (8 to 10x the base of 5%). The oncologist can also tell you your risks and benefits of taking a preventative medication such as tamoxifen or evista. Good luck with your MRI--praying you get good results soon.
Anne
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Anne,
I had no idea the risk for invasive cancer was so high after an LCIS diagnosis. Is there anywhere online where I can figure out what my pathology report specifics, regarding my LCIS, mean?
Thanks!
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Just sent you a PM. Statistics vary, I've seen as low as 25% (which is still consider "high risk"), but personally I think it's more in the range of 30 to 50%. But having also had DCIS, your treatment would've been directed at the DCIS, which is the more serious of the 2.
Anne
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Sorry I'm a little off date in reading your post- but I strongly believe you are correct in your understanding of LCIS and that Tammi is a little off mark. My surgeon at Sloan Kettering described it as a marker for where cancer could appear down the road. It is in no way a cancer now. In fact, she said the medical field is trying to change the name to neoplasia to get rid of the 'carcinoma' word. I am going May 21st to see what the oncologist says about what to do- I believe they are bending towards Tamoxifin because they found a very small section of DCIS along with the LCIS in my last surgical biopsy. I'm not sure what I will do. It is interesting to see that many opt for the double mastectomy. Radiation is also an option... although you can only do that once in that area and I am 39... hopefully a lot of years left!
Thanks for the post and I'd love to know what you end up doing.
Penguin
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I bounce back and forth in my understanding when reading these posts. Very true there are different opinions in the field. My path clearly states LCIS. Lumpectomy tested positive for cancer, not a marker, cancer cells, as confirmed by my med onc. I'm at a loss to understand how it is not cancer when the cells test positive but it just has not spread. My med onc classed it as stage 1b because of the positive test and size of tumor, 1.2cm. So what am I missing? Someone had PM'd me when I first signed on that I should be stage 0 but my med onc clearly said no, stage 1b. I'm halfway through rads and 7 weeks into arimidex, no fam hx.
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Well, I've heard that most, but not all, oncologists consider LCIS benign. So I can see controversy on that area.
I've never heard of anyone with LCIS and nothing worse told they have anything but stage 0. Did your excisional pathology report say you had anything worse than LCIS?
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Patoo, if your diagnosis was cancer, then you should have been diagnosed with ILC (invasive lobular), not LCIS. LCIS is not cancer, nor should it be treated with radiation. There is no way LCIS would be staged at 1b. The stages of 1-4 only apply to invasive cancer.
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I will see med onc in a few weeks, after rads completed and will clarify. You all are probably correct but I just pulled out my reports. It only says "right lobular breast cancer" which is what my BS told me, and med onc confirmed. Since SNB and AX nodes neg perhaps I concluded LCIS on my own? I had asked my med onc if there could have been any chance it was not cancer and he said "no chance at all" that it definitely was cancer.
So Nash, I believe you but then where does the "invasive" come into play? Guess I better get to reading some more.
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Patoo, if your path report says lobular breast cancer, then you have invasive lobular bc. If there was LCIS left over in the margins, then the path report should state that. Mine did. Negative nodes have nothing to do with whether the cells are LCIS or ILC. The nodes being positive or negative affect the staging of the ILC, however.
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Nash, oh my word! You're right!!!! I just put my path report about 3 inches from my face and went through it and, Oh My Gosh! I had been focusing on the "Operative Report" which has pre and post operative diagnosis of right lobular BC. Between that and the neg SNB it was me who thought LCIS Then I go a few pages in and read again the "Microscopic Diagnosis" and right there #1 says "Infiltrating lobular carcinoma, pleomorphic variant". Then various comments at bottom: "Foci of LCIS present", "infiltrating and in situ carcinoma approach but not at deep margin" "differential dx includes infiltrating LC and infiltrating DC". So when I've read it previously those comments didn't mean much to me. Not my BS fault because she wasn't sure what the med onc was going to recommend, chemo and/or rads. The med onc only answered whatever questions I asked, which with my limited knowledge, weren't many. He said I was in a gray zone and sent for the oncotype (13) and ruled out chemo. I had absolutely no idea. Good grief.
So, you can see I've changed my signature.
I'm so grateful for all of you. Reading I was wondering why I was having radiation when everyone said I didn't have cancer according to my misunderstanding of LCIS. Now at least I know. Guess I'll now have to stalk the ILC and IDC boards.
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Patoo, I'm so glad you got things cleared up. Now you're officially a PleoPal, which is what we've dubbed the pleomorphic ILC gals over on the ILC board.
There aren't too many of us--pleomorphic ILC is an unusual subtype of bc. But the Oncotype of 13 is terrific news--most PILC scores about a 19 (mine was an 18)--so rads and AI are definately the way to go for you.
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Hi Patoo, Good luck with everything, I'm sorry to hear of your dx. Most people are surprised/shocked to hear that I had radiation for a lump which was over 5 cm in my left breast. LCIS, along with Atypical Ductal hyperplasia, Atypical Lobular Hyperplasia, Radial scar, Columnar cell change and Sclerosing Adenosis. But my ONC, GYN and surgeon say LCIS IS cancer, but it hasn't broke thru tissue yet. My Oncologist recommended the radiation. Since then I've had 2 other lumpectomies (both were over 2 cm+ ) in my Right breast. One which had some of the same things which were in the left. And the most recent didn't have any type of cancer cells. So 3 surgeries in less than a year and now they're recommending mastectomy for me. They say the LCIS or something worse will occur in my Right breast. It's good you have your diagnosis now and hopefully you can somehow focus and choose the best options for you. I'll keep you in my prayers. Tara
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Tara - You have a beautiful picture!!
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Hi JO-5, I'm still not 100% sure how/when to have it. I met with another plastic surgeon, who doesn't think my left breast is too damaged from the radiation, that I may be able to have expanders. He also suggested using back tissue and muscle. He said I don't have enough in my 'belly', to make 2 breasts, so I guess I'm glad for that. He didn't have all his supplies/samples and pictures here yet, he just opened practice here, but is from here originally (OH). So I'm going to meet with him again. And I think I just want the court/custody issue to settle down some, tho' I know it's never going to. And even tho' I'm financially strapped as most are right now,I've decided to take 2 trips. I wanted to do this before my ex gets any visitation so that I can take my son. We're going to California next week for 5 days, to see my brother/family for my nieces birthday. Then in July we're going to TX, I used to live there, to visit relatives & friends I haven't seen in 13 or more years. I just feel that I need/want to do this since I don't know when I'll ever have the opportunity again, with custody/visitation. And to do this before I decide on when/how to have major surgery. How are things with you? I hope you & your family are well.
Hi Jean(Mykidsmom), Thanks for the compliment! How are you? Are you feeling well? Have things sort of gotten back to normal? (Not that we'll ever have it back to normal after BC). I hope you're well.
I'll be praying for everyone.
Tara
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Tara - I am doing very well, thank you. I had my exchange and the implants are SO much nicer than the expanders. I have started my own business and am very busy. So no complaints here. Have fun visiting family and friends! - Jean
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