Just diagnosed LCIS and multifocal ALH

Anonymous · July 2009

Hi Ladies

I have been just diagnosed with LCIS/ALH as a result of an excisional biopsy and still trying to absorb it all. I had excisional biopsy on June 26 as a result of ALH being found on stereotactic from microcalifications.I got the impression after speaking to the surgeon with the ALH findings that I could have either just watched and waited or have the 2nd biopsy to see if there was anything else lurking there. I am glad I did, although I don't think he really expected to find anything else. After waiting almost 2 weeks for the results, I had my appointment with the surgeon yesterday who really seemed to downplay the LCIS diagnosis, and feels I now just wait and do another mammogram in 1 year. This is after I was called the day before by my family doctor, who at 4:30pm told me to come in at 6pm and to bring someone with me, because she understands these results far differently and much more serious. She thought since there was marginal involvement, it would mean another surgery, probably within a week, to get clear margins as well as check for node involvement. So she was making a referral to a medical oncologist, thank goodness. I think I am understanding LCIS to be somewhat controversial as to whether or not they even call it "Breast cancer" or not, seems like so much debate on it. Even the handouts they give you from our Cancer clinic label it as one of four of the types of breast cancer you could be diagnosed with. My mom who was with me for both doctors appointments, was really confused how one doctor said I have breast cancer and another doctor is emphatically said I don't. So aside from being really scared by the diagnosis I just find it very frustrating to try to explain what I even have. Most people don't read boards like this so to try to explain to them that you have been diagnosed with LCIS, basically they are trying to be compasionate, but to them the bottom line is "So do you have breast cancer?"

I am just hoping that I can get in to see an oncologist as soon as possible and have him interpret my pathology report for me better. It is two pages long! Can anybody help me understand the results better?

Under the "Final diagnosis part it reads

-Lobular carcinoma in-situ of the classical type, multifocal with marginal involvement

- Atypical lobular hyperplasia, multifocal

-Florid fibrocystic disease with sclerosing adenosis and multifocal microcalification

On the second page in one part it says "also showing pagetoid involvement of non-occulded ducts.

Can anybody please help me with this until I can get in to see an oncologist, who I think will be the expert on all of this who can help me understand better. Right now I have two different doctors who are at the extreme opposite of each other.

Thanks

leaf · July 2009

Hi there! My pathology report is quite similar to yours, though I have 'LCIS with pagetoid spread into the ducts'.

1) About the LCIS name. LCIS was first described and named in ~1941 by 2 prominent pathologists, Foote and Stewart. They saw that LCIS looked like DCIS except was in the lobules. So, without knowing the natural history, they called it LCIS. Until about the mid-1990s, the traditional method for treating LCIS was bilateral mastectomies. Then, in the 1990s, it was found that lumpectomy + radiation patients with early invasive breast cancer had about the same survival as those with mastectomies. They also saw that most LCIS women did NOT go on to have invasive breast cancer. This made many breast surgeons queasy about doing a more invasive procedure on LCIS patients, who only have in situ disease.

The NCI website now says "The term lobular carcinoma in situ (LCIS) is misleading. This lesion is more appropriately termed lobular neoplasia. Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer. This risk remains elevated even beyond 2 decades, and most of the subsequent cancers are ductal rather than lobular. LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[1] In addition, three women developed contralateral breast tumors (two of the tumors were invasive)."

http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

What do I say when I get asked if I have cancer? Well, I haven't been entirely consistent, but I now usually answer 'no', though if I'm feeling provocative I circle both yes and no (and explain). (One neurologist complained, when I spent 10 minutes explaining my situation, which had nothing to do with my neurological situation, "But it has carcinoma in the name!") DCIS patients have this problem too, but in their case DCIS does definitely need treatment, and mastectomies are sometimes needed.

But most oncologists do NOT feel that LCIS should be classified as cancer.

It doesn't really matter if they 'got all the LCIS' or not. That's because LCIS patients are at higher risk, even in the sections of breast tissue that look normal, and even in the other breast.

LCIS is usually multifocal (which means there are multiple spots of LCIS) , and often LCIS is bilateral (which means it is often found in both breasts.) They know this from looking at the pre-1990s mastectomy specimens (and the post 1990s mastectomy specimens). LCIS is also becoming more common. (However, this estimation is difficult - we don't know how many women are walking around with LCIS and don't know it, because it is usually only detectable on breast biopsy, and is usually NOT detectable on imaging.) http://www.ncbi.nlm.nih.gov/pubmed/12353815

You come across the term that in a SMALL number of LCIS cases, LCIS may be a 'nonobligate precursor' for invasive breast cancer. This means that in a SMALL number of cases, some spots of LCIS MAY become invasive breast cancer, but, then again, this same one spot more likely will remain LCIS for the rest of your life.

They don't understand how LCIS puts normal breast tissue at risk. Its a weird disease.

Unless you have a severe family history (and maybe not even then), the numbers I have seen usually say LCIS patients overall have about a 30-40% lifetime risk of breast cancer. This is much lower than the risk of breast cancer for BRCA women, which is something like 50-90% lifetime incidence of breast cancer. However, our expertise at predicting WHICH individual woman with LCIS will get breast cancer (DCIS or invasive) is VERY VERY poor. This is for statistical reasons. In the famous modified Gail model http://www.cancer.gov/bcrisktool/ (which specifically EXCLUDES LCIS), one article described its ability to predict breast cancer FOR AN INDIVIDUAL WOMAN as 'better than a coin toss - but not by much'. So, there is little in LCIS that is NOT controversial.

I have a weak family history. Several women here with LCIS and nothing worse have been advised to have prophylactic mastectomies (even with a weak family history). My breast surgeon has refused to do further surgery on me. When I had a 2nd opinion at a major institution, they also said they do not advise mastectomies for me. So doctors and institutions differ.

I have the 'classical type' too. It probably is 'less agressive' than the more uncommon 'pleomorphic type'. (See the pleomorphic thread in this LCIS forum.)

nash · July 2009

Leaf gave you some good info.

Regarding the opinion you have from your family doc--there would be no reason to check for node involvement with LCIS--it is not an invasive cancer.

2mygirls · July 2009

Thank you for sharing. I am happy to learn I am not the only one who finds all of this to be conflicting information and very confusing with different docs telling me different things, different websites saying different things. Thanks also to Leaf for the very thorough explanation!

Anonymous · July 2009

WOW! Thanks so much leaf for the great information about this confusing and weird disease. I feel fortunate to have found someone like you who happens to have a similiar diagnosis to mine and who has so much knowledge. Seems like even more than the two doctors I have. Like other women who have this, to be told you have "Breast Cancer" is very scary. But in our case it is and isn't? I wish they would make up their minds. With all the billions of dollars that have gone into Breast cancer, you think they would get it straight, as if this isn't stressful enough as it is. For me it just feels like you wait, wait, wait and wait some more. Now I just can't wait to see the oncologist. For months I chose not to say anything to my children about any of this for fear of scaring them. So finally after I saw my family doctor who gave me the results, I thought I better tell at least my 16 year old son that I had breast cancer and to see the look on his face and ask me if I am going to die, breaks my heart. I would have much rather said I am just at a higher risk.

I am so glad to have found this site to be able to hear and share our experiences with this.

Leaf, how long ago were you diagnosed with this? What kind of follow up do you have?

Thanks so much

and take care.

leaf · July 2009

Most (but not all) oncologists feel that LCIS should NOT be classified as 'cancer'. Cancer is not a line in the sand. Cancer means uncontrolled growth. There are cells that are clearly normal, and other cells that are clearly cancerous. In the middle it can be difficult.

You are only at higher risk. Even BRCA women are only at higher risk.

LCIS does NOT require treatment, like DCIS does. Many LCIS women just are conscientious about their yearly mammograms and twice-a-year clinical. When I went to my nearby Major Institution (an NCI certified cancer center) for a 2nd opinion in 2007, they said their LCIS women are offered tamoxifen, and yearly mammograms with twice-a-year clinical exams. That's all they were offered.

I was diagnosed with LCIS in 12-05, after a routine mammogram showed 'suspicious calcifications'. I had an excision 1-06, which didn't show anything worse than LCIS with 'features of ALH', and pagetoid spread into the ducts. (The pagetoid just means the cells look like they are standing in a row - its one of the features of classical LCIS.) I started tamoxifen in 7-06. By 2-07, I had 3 additional ultrasounds, 2 additional mammos, and 2 more breast biopsies. I had ductal hyperplasia (not atypical) added to my breast issue list.

I had a 2nd opinion at a Major Institution 7-07. I knew more about LCIS than the NP (nurse practitioner) there did. The breast surgeon said my lifetime risk for breast cancer was somewhere between 10 and 60%, but was 'probably closer to 10%.' They lost the written record of this visit, so I can't have it sent to my onc. So I returned to my local onc. I was trying to get more information about LCIS, and I didn't get that. I was quite disappointed with this 2nd opinion. I had my slides re-read there, and they came back as LCIS with ALH. Among my biopsies, I have had sclerosing adenosis,

I haven't had any further breast issues since then. I'm still on tamoxifen. On tamoxifen, I've had endometrial polyps removed. I was declared menopausal a month ago, so have had postmenopausal bleeding. The endometrial biopsy showed a thin endometrium, and the sonogram showed a thick one. I'm having a D+C at the end of this month. Tamoxifen is notorious for causing irregular bleeding. I had endometrial polyps and irregular bleeding before I had any breast issues, so this is nothing new.

I now get annual mammograms and twice-a-year clinical exams. I wish I could get at least a baseline MRI at some point. But I have other, more potentially serious health problems. After my LCIS diagnosis in 12-05, I got a new medical diagnosis every 3-6 months for the next 3-4 years, some fairly trivial, like psoriasis, on my fingers.

LeeMcC · July 2009

Hi formykids and others -- I was diagnosed with LCIS last month after microcalcifications on mammo, stereotactic needle biopsy and MRI.My LCIS is on the right and 5cm (rather large for me, since I'm small-breasted). I also have fibrocystic disease and VERY hard to read mammos.

I just had an excisional biopsy/lumpectomy on Thursday. I will get the pathology reports next week. I've googled LCIS up, down, backward and forward. There's a pathologist by the name of Dr. Sanford Barksy at Ohio State who doing tons of LCIS research. He says there are 3 types of LCIS cells: those that remain b9, those that become DCIS (I think) and those that become invasive lobular.

Even if my pathology report comes back that all of this is LCIS, I am not too happy about the watch and wait for me. I'm 48. My mother had DCIS at age 55 (17 years ago). I just keep thinking it is EVENTUALLY for me ... when I'm 58 ... or 68. One surgeon cautioned that since I'm very dense (my breasts, not my mind!) and my mammos and MRI are so hard to read, that an early cancer could go undetected in me over the next 5-10 years.

I'm trying not to jump ahead in thinking toooooo much and make myself crazy. Waiting on results next week, and then will either move forward to get rid of cancer, or begin more research and thinking about either high surveillance for 10 years or a prophylactic BM.

Lee

Anonymous · July 2009

Lee-----Our situations have many similarities; I too was diagnosed with LCIS on the right side almost 6 years ago, have fibrocystic breasts, and my mom also had bc many years ago. (ILC--she's a survivor of over 22 years now). I'm glad to hear that research is being done on LCIS---we need more of it, not enough is known about it. I'm doing well with high risk surviellance----alternating MRIs and digital mammos every 6 months and breast exams on the opposite 6 months--I finished my 5 years of tamoxifen and now I take Evista for further preventative measures. Please feel free to PM me if you'd like to talk.

Anne

Anonymous · July 2009

Thanks for sharing your stories. It is so comforting to be able to speak with women who are diagnosed with the same condition. I only personally know two women who have had breast cancer and they don't even know what kind they had, they are both the type that just do as the doctor tells them. For me, I would rather try to understand it all, as confusing as it is. I don't trust doctors too much as I have had some bad experiences.

Leaf it sounds like you have been on a roller coaster since this all started for you. Do you mind me asking how old you are? It sounds like this is quite commonly diagnosed between 40 & 50 year olds. I am 46.

Lee I hope you get back good results from your excisional and it just comes back as LCIS. When I first started on this journey, I couldn't imagine some doing a PBM if they didn't have an invasive breast cancer, now I can certainly understand it better. Although for me right now, that is not what I am thinking. Even when they say watch and wait approach, it almost sounds like you are waiting for it to happen, which seems crazy.

Anne since you have been having alternating MRI's, have there been false positives that have sent you for unnecessary biopsies? The surgeon told me, he wouldn't even do MRI's for this reason. But it worries me that things could get missed with clinical exams and mammagrams only.

Right now I am sitting with information from a family doctor and the surgeon, who are at both extremes of each other. One saying more surgery and checking the nodes within a week and the other brushing it off and do nothing except a mammogram in 1 year. I can't wait to speak to an oncologist who I am hoping will take a better approach, from what I am understanding will probably be somewhere in between and closer to what you Leaf and Anne have been doing.

As you follow these boards and probably have for some time, have you seen many women here who started with LCIS and then went to ILC or IDC. Is it correct in thinking that it could move to either?

Thanks again with your help in understanding this.

Take Care

Cathy

leaf · July 2009

Hi there Cathy. I was 51 when diagnosed, and am 55 now.

Unless you have symptoms or imaging that shows something suspicious in your lymph nodes, I would highly consider NOT letting them surgically remove any lymph nodes. If you have nothing worse than LCIS, it should be contained in your lobules and ducts. Lymph node removal carries the risk of lymphedema.

Yes, for the LCIS women who go on to get a worse invasive cancer, most of them are IDC. (This varies from study to study, of course, because the incidence of LCIS is low, and few of the LCIS women go on to get invasive breast cancer.) But LCIS women get a much higher proportion of ILC than the average woman. Most studies I've seen suggest that of the women with LCIS who do go on to get breast cancer, about 60% of them get IDC and about 40% of them get ILC. (These are rough numbers.) In the general population, about 10-20% of women who get breast cancer get ILC.

http://www.ncbi.nlm.nih.gov/pubmed/17380381

http://www.ncbi.nlm.nih.gov/pubmed/16604564 (You can get the full article of this by clicking on the button on the right hand side of the page, then clicking on the PDF or HTML links near the top of the page.)

There have been several women who have gotten invasive after LCIS here. However, you have to be very aware that the people who post here are not necessarily representative of the LCIS population as a whole. There have been studies that have shown that people who join on-line support groups are not representative of the general population. It takes energy to be on on-line support groups. Many women with invasive cancer post while they are in treatment, then stop posting after they have finished treatment, unless they have a recurrance or something goes on.

Anonymous · July 2009

Cathy----I was also 46 when diagnosed. It took me nearly 3 years to get my oncologist on board with MRIs----he was leery of them for the same reasons--too many false readings. But I would rather take the risk of false readings than miss something serious, so I pushed for them and over time it seems that he agrees with me that it's a very wise idea. I had a few "spots" on my first 2 MRIs that they deemed "probably benign"--I had f/u mammos and US that were clear; no need for biopsies; my last 2 MRIs have been completely clear. There's no need to check lymph nodes with LCIS as it is non-invasive; there's no need for clear margins since it is most often multicentric/multifocal/ and bilateral (meaning it's generally widespread, but your risk level is the same regardless of one spot of LCIS or many). I would go with the recommendations of the oncologists--they are the specialists in cancer treatment.

anne

upcreek · July 2009

LCIS is not so black and white. My pathology report was very similar to yours. The treatment decision is up to me: watch and wait, tamoxifen or bilateral mastectomies. I'm still undecided.

Read all you can and see as many doctors as you need to arrive at your treatment decision.

All the best

Anonymous · July 2009

I just thought I would share my latest frustrations with you. Today I spent a good part of the morning trying to find out if the referrals to the oncologists had been sent by my family doctor and the surgeon. They did receive the one from my family doctor, (who is the one taking this very seriously) but they had not received the referral from the surgeon, (he doesn't seem to think too serious, and this based on his experience of ONE other case of LCIS) When I called they said they were waiting for the report from surgeon. I tried to explain how I have two doctors right now that are on total opposite ends of the spectrum, and I feel I really need to speak to the oncologist as he is the specialist in this field. I know the surgeon is now on holidays, so who knows how long it would be before he sends the referral, so I am glad I called and explained the situation.I now have an appoint for next Monday, with the Cancer Centre's chief oncologist. I will let you know what his opinion on this is compared to others. I would suspect the recomendations will be similiar to yours Leaf, AWB and upcreek. I hope he believes in MRI's and very close follow up, and not just a mammogram 1 year from now. Interestingly the surgeon doesn't even think it is necessary to start mammograms until you are 50. Knowing what I know now, that is scary.

upcreek, what kind of follow up have you been told ie mammogram vs MRI, ultrasound etc?

Thanks for the links to those websites Leaf. They are very informative and seem to be more current than the information that I had been reading earlier.

Thanks again ladies and Take Care

Cathy

upcreek · July 2009

Hi Cathy: I have had mammograms and ultrasounds yearly for the last 7 years because of fibrocystic breasts. BSE do not shed much light as I have so many cysts.

I just had mammograms (3 months post lumpectomy) and the follow-up as suggested by the Radiologist was mammograms in a year.

Medical Oncologists recommend BPM's as well as my family doctor. Surgical oncologist will not advise me as to the correct course of action other than the three treatment choices previously mnentioned. I am not interested in Tamoxifen and its side effects. I am leaning towards BPM's but find this whole situation very stressful. I am not able to work, my anxiety is better but am mildly depressed. I see the plastic surgeon in a couple of months and will make a definitive decision then.

I don't know if I can "watch and wait". All the best

leaf · July 2009

I have found instances where the medical doc is supportive of surgery, but the surgeon is not. If the surgeon doesn't want to do the surgery, it won't happen.

Yes, this is a complex, stressful situation. Luckily there is usually no rush. For the average group of LCIS (and nothing worse) women, the incidence of something (DCIS or invasive) happening is roughly 1% / year .

Anonymous · July 2009

Cathy--sorry to hear that your docs are in opposite directions on this (doesn't surprise me though, as there is still to this day a lot of controversy surrounding LCIS--what it truly is, what it should be called, how to manage it, etc...)---but glad to hear that you got a referral to an oncologist and will be going soon. You shouldn't need your family doc and surgeon to both send referrals-----one should be sufficient) I always make sure I have a list of things in mind to discuss before I go for my appointments, as I will invariably forget something once I get there. Ask about your 5 year risk as well as your lifetime risk of invasive bc; this of course varies from person to person as we each have our individual risk factors (as well as the LCIS) which affect our overall numbers. And just keep in mind, statistics are just statistics for general populations, what happens or doesn't happen to an individual may be very different. And be sure to discuss the risks and benefits of tamoxifen for prevention for your individual situation. I've tolerated it very well and now am taking Evista (I'm post menopausal now) for further preventative measures,

anne

CAZ · July 2009

There's a wealth of knowledge in all the above posts. After my DX in 1/08, I was offered high risk surveillance with or without Tamoxifen or "risk reduction surgery" aka prophylactic bilateral mastectomy by a Breast Center. As nervous as I was for the compression mammogram and biopsy results, I knew I'd be a wreck every 4-6 months waiting on the other shoe to drop. I had a PBM in 6/08, and have been very happy despite minor set backs. I feel like I've gotten on with my life. This is just my experience. You must choose the path that is right for you. Best of luck to all who are faced with it.

Carol(AZ)

Anonymous · July 2009

Thanks for your response CAZ. I am just curious if after your diagnosis of LCIS, was this by an excisional biopsy? Did they do an MRI after that? And what if anything did they find in your BPM.

For me right now, I am not ruling in or out PBM, I just don't feel like I have all the facts just yet. I am concerned that the surgeon was taking a very conservative approach to all of this, and may not have taken a large enough biopsy on the excisional. I had LCIS with marginal involvement,as well as more ALH and more microcalifications. I understand that they could just keep getting LCIS if they were to take more out, as it could be throughout the breast, but what if it is an indication that there is something else besides LCIS there. It almost seems like too many little red flags. I would think at the very least then they would do an MRI, because as I understand it ILC and/or IDC doesn't necessarily show up on U/S or mammogram, and so far I haven't had an MRI. It sounds like there are some here who don't have MRI's as part of there screening.

Thanks for everyone's help in trying to understand this.

Cathy

leaf · July 2009

You may not agree with this position, but in this 2007 paper, the American Cancer Society neither recommended for or against MRI screening for LCIS women. http://caonline.amcancersoc.org/cgi/content/full/57/2/75

"While lifetime risk of breast cancer for women diagnosed withLCIS may exceed 20%, the risk of invasive breast cancer is continuousand only moderate for risk in the 12 years following local excision.⁴⁶Only one MRI screening study has included a select group ofwomen with LCIS,⁶¹ which showed a small benefit over mammographyalone in detecting cancer. This benefit was not seen in patientswith atypical hyperplasia. MRI use should be decided on a case-by-casebasis, based on factors such as age, family history, characteristicsof the biopsy sample, breast density, and patient preference.

Although there have been several trials reported looking atthe accuracy and positive predictive value of MRI and mammographyin women with high breast density, all of these trials havebeen conducted in women with known or highly-suspected malignancieswithin the breast.^71–74 To this point, there has beenno Phase III randomized trial reported that has shown a reductionin either mortality or in the size of diagnosed breast cancerwhen comparing breast MRI with mammography in women with highmammographic density."

Anonymous · July 2009

Leaf you sure seem to be the master at finding and referencing these studies, and I thank you. We are very lucky to have someone like you on these boards.

I had read this study and the reason I think for me I would want to have the mri done, and I hope they will do one right away, is because what if there is already something else there? So far I have only had mammagram and U/S. Even by this study it shows how there were cancers detected in women with LCIS that were not seen on anything else.It appears that often when invasive cancers are found, there is also LCIS found as well. It sounds like ILC is a sneaky one, and like LCIS is found less often and perhaps they have less experience with. I also noted in this study that the women they did find invasive with MRI only, it was found at stage 0-1 vs stages higher when found on mammagram. Hence catching it earlier and that would be much preferred. I just think there would be a better comfort level with having MRI screening included. If cost is the rational for not wanting to do MRI's, I would think that would be a mute point if then women go on and have PBM, which would be much more costly not to mention invasive.

Initially I though that LCIS if/when it lead to invasive breast cancer it would be ILC, now I have read that it can lead to either, is this your understanding?

Thanks and take care

Cathy

nash · July 2009

Cathy, you're right--since LCIS is a marker for increased risk of bc, one could potentially develop any type of bc, not just ILC.

The only caveat here is that the researchers think that possibly pleomorphic LCIS evolves directly into pleomorphic ILC. My PILC was surrounded by PLCIS, which would seem to support that theory. On the other hand, I chose to go with a lumpectomy and therefore left the PLCIS in the breast, and the PLCIS has been stable for 2 years.

Anonymous · July 2009

Cathy----women with LCIS can get either ILC or IDC, but I think the risk is higher for ILC. It took me nearly 3 years to get my oncologist on board with MRIs--he felt like that would "open Pandora's box" and possibly create unecessary biopsies and anxiety (that seems to be the reason some docs are against breast MRI in addition to being more expensive than mammo or US). My feeling is that I would rather take that chance than have something invasive missed, so I pushed for MRI and he came around. Now I think he's changed his opinion of MRI over the last few years after reading some studies that have come out on the value of MRI for high risk women and now he's very glad I'm having them. It always pays to be your own best advocate. And as it turns out, I haven't had to have any more biopsies since starting with MRIs 3 years ago.

anne

JannaC · July 2009

Hello. I am 57 years old and was diagnosed with lobular cancer in Feb., had a lumpectomy in March and then a reincision 10 days later to get a clear margin. After the first surgery, that's when my LCIS INSITU and hyperplasia was discovered in both breasts. (I also had a breast reduction during the first suregery, DD to a B, so both breasts were checked) Anyway, both my surgeon and my oncologist still advised against a mascecotmy. I do not consider LCIS cancer and the latest info I've read seems to be leaning in that direction of thinking. I had 25 radiation treatments and am now on Femara for five years. My oncologist said that the Femara should quiet down the LCIS. Who know how long I've been walking around with LCIS. It doesn't show up on a momogram. Just follow your breasts closely, you will be OK.

Anonymous · July 2009

Hi Ladies

I am so happy that I finally was able to see the chief oncologist yesterday. This after getting the opinions of a family doctor and general surgeon, who had exact opposite opinions of what she happen now since my diagnosis of LCIS and ALH. One saying more surgery to get clear margins/ node biopsy and the other saying a follow up mammogram in 1 year. The oncologist, like so many others here said LCIS is not breast cancer, but he suggested I have a MRI to rule out something more invasive. I thought I had felt a lump at the bottom of the breast that I had surgery on and he felt it as well. I was getting really worried, not knowing if this is because of the surgery or that something has developed. Even though it is far from where my incision is. He said there could be something there and it needs to be checked. Unfortunately, we do not have a breast MRI at our facility, so I will have to travel approx. 1000 miles to a centre that does have one. That is fine with me, I just want to know if I am dealing with only LCIS or is there something else going on. From studies I have read, sometimes things get missed on mammogram and U/S. He is also sending me to be tested for the BRCA1 and BRCA2 gene. My sister came with me and reminded me that we have a great Aunt on my Dad's side and a cousin on my mom's side that had breast cancer. I am also happy about this, as the more information I have, the better informed I can be about treatment. He also mentioned taking tamoxifen, but since I have a 30-40% narrowing of the cartorid artery this is not an option for me due to the risk factors of stroke. So no decision to have to make there.

I am so relieved that at least now I feel like I am be followed by the proper person. This is his specialty, and would certainly know alot more than my family doctor or the surgeon. I am quite upset by the whole opinion quite frankly of the surgeon. I just wasn't feeling like all the facts aren't in quite yet.

Take care

Cathy

leaf · July 2009

It makes such a difference to be followed by someone you trust. I can't stand my breast surgeon either - I haven't seen her for about 2 years, and get followed by an onc.

I found it very valuable to talk to a genetics counselor. I learned much from her, though I opted not to be tested. (She said my chance of having BRCA is low.)

It takes some time to find out what you choose is the best approach. It takes time to find out more about your body. If something doesn't work for you, then try something or someone else.

covertanjou · July 2009

Cathy,

I am so glad you are being followed so closely by someone you trust. Please let us know the results.

I am going in for my excisional biopsy on Friday (ADH/LCIS with columnar cell changes, etc. found on stereo biopsy). I, too, do not particularly like my BS, but I know that he is very good. I plan to wait till I get the results of my biopsy, and then get a second opinion with another top BS where I live.

I find that I have been on this rollercoaster of biopsy after biopsy for about 2 months, and I can't wait for it to be over. I NEED the surgery over, the biopsy done, so that I can then weigh my options. I feel that it has been the summer from hell. I can hardly sleep and am hoping that within 2 weeks, all the tests, surgeries will be done, and I can (hopefully) know what I am dealing with and go on with my life.

Is this realistic? For all of you who have posted, can you move on after this? Can you make a decision (tamo, vigilance) and go on without being obsessed with what may be happening in your breasts?

Sorry for venting, complaining. Lack of sleep and worrying is making me crazy.

upcreek · July 2009

Yes, you will be able to make a decision when you have all the information. I found that it took about four months before my anxiety/pre-occupation/lack of focus settled down. What you are going through is normal.

I am still in the process of making a decision but my mind has settled down and feel almost normal again.

LeeMcC · July 2009

Hi Ladies -- I'm back with a final pathology report. There's co-existing DCIS and LCIS (some pleomorphic) in 5 cm area extending to all edges of the segment excised. There also was IDC 4 mm, which they got clear margins on. The pathologist used the words "this is a complicated case" in the report. My surgeon is sending my slides to Vanderbilt, and he's presenting my case to the cancer board at the hospital on Friday. I go back to see him on Monday.

I'm not sure, but I think I may be looking at a node biopsy or a re-excision to get more. Maybe he'll talk about going straight to mastectomy (which, in my mind means PBM).

I'll keep you posted ... looks like I'm going to be hanging out with you girls for awhile!

Lee

upcreek · July 2009

Hi Lee: Sorry to hear that there was "more" in you report. We are here for you!

cleomoon · July 2009

((((Hugs))) Lee

Anonymous · July 2009

Covertanjou I will be thinking of and saying a prayer for you on Friday and hope you get good results, very soon. Keep us posted!

I know how you are feeling and can't wait for this roller coaster ride to end. For me it has been going on since February, and I just want to know what I am dealing with, and then go on from there. Have you met with an oncologist yet? I did find this really helped me. They are the expert on this. If you haven't, maybe you could asked for a referral? I couldn't believe how well they treated me, as I now fall under their umbrella at the Cancer Centre. They gave me an orientation package, books on breast cancer, a personal journal etc. They also had me fill out a questionaire asking questions about how you are feeling emotionally, and somehow just writing it down seemed to help, if that makes any sense (even though I thought they might admit me onto the mental health unit).

Lee I am so sorry for your news. Sending you an cyber hug! I imagine Monday cannot come soon enough for you to get more information and where do you go from here. Take care and my thoughts are with you.

Cathy

Just diagnosed LCIS and multifocal ALH

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