New here. New diagnosis

racheal1977

Hi,

I just got my results today from my biopsy that I had done on Thursday. They had found calcification's in both breast a week ago, they recommended I wait 6 months to have another mammogram & ultrasound. I decided to go ahead with the biopsy & am glad I did.

My nurse called today with the results. My left breast is fine. My right one she said that it is high risk & that I have lobular carcinoma in situ. Was told it has not gone out of the lobe.

This is all so confusing to me & I mean very confusing. They want me to have a surgeon picked out by tomorrow. She said I will have surgery to have it removed. Gave me a list of general surgeons along with some breast surgeons

She was explaining everything really fast, so I did not get to write everything down. I understand from reading what I have on it, that it is not cancer. Which I am sure she said but I did not catch it.

I know its silly to be scared since its not cancer, but I am. I guess I do not understand the rush on picking a surgeon asap & why they want the surgery done asap.

The nurse said they will remove the tissue which is a pretty large area, & to make sure I ask the surgeon how big of a dimple I will have in my breast.

Will I have the option to just have the entire breast removed ? Is it necessary to have the surgery as quick as the nurse made it sound ?

I had a small panic attack after I got off the phone with her. & reading up on it has caused a few... Just very nervous about all of this & have been from the beginning.

**Dr called & said it was breast cancer, very beginning signs of it... Even more confused now then I was to begin with.**

keepthefaith

rachael, It's not silly to be scared! If I may suggest a few things. First, take someone with you to your up-coming appts., or record them. Get your medical records. If you are unsure of your Dr's advice, get another opinion. LCIS means Lobular carcinoma in situ, which means it has not become invasive, but potentially could. I have IDC, but have read that ILC can be harder to detect than IDC with a mammo and US. You may want to ask about getting a breast MRI also. I am not sure if it is called for in your situation, but it won't hurt to ask about it. I'm sure your mind is in a whirlwind, but take time to breathe and don't panic! Take one step at a time, find out all you need to know to be comfortable with your treatment decisions. There are plenty of threads here of others that have gone through what you are going through. I'm sure someone else will weigh in. Best wishes.

MelissaDallas

LCIS is considered a marker for being at higher risk for developing cancer, but your particular risk depends on a lot of factors. The reason they want to do an excisional biopsy is because in about 20% of diagnosed cases of LCIS they find cancer in the area on excision, but that could be DCIS or invasive ductal cancer, not necessarily Invasive lobular cancer. If nothing more serious than the LCIS is found on your biopsy then there are a lot of options for being surveilled more closely and/or taking antihormonal therapy to reduce your risk. Some women do choose prophylactic mastectomy, but that is the minority and not necessarily the recommendation

614

Dear Racheal:

Listen to what Keepthefaith said.

There is no rush. It is more important to find a doctor and a surgeon whom you like and trust than to settle for the first doctor(s) on the list. You do not have to do anything immediately. Meet with a doctor and go for a second opinion if warranted. You do not necessarily have to have a dimple in your breast from the surgery. Doctors are very good at what they do. They can usually do the surgery without any noticeable effects. If too much tissue needs to be removed than a plastic surgeon will make sure that you look fine. My daughter had an egg sized fibroadenoma removed (I don't know the cm size) and there is no visual effect from her surgery. I have had several lumpectomies with no bad outcome. The double lumpectomy that I had with my bc involved a large amount of breast tissue that had to be removed so my plastic surgeon did a breast reduction to the other breast and a breast lift. My breasts look spectacular.

LCIS is stage 0 cancer. It is cancer but it is contained within the cell so it is not invasive. That is why the nurse told you that you do not have cancer. Sometimes, LCIS is called precancer. LCIS increases your risk of invasive cancer. The problem, as Keepthefaith said, is that lobular carcinoma and LCIS is very hard to detect. That is why you want to excise the LCIS. You do not want it to become invasive lobular carcinoma. Of course you are scared and having anxiety attacks. That is totally normal.

Good luck and I am sending you hugs.

racheal1977

Thank you all for the replies. I think I just need a minute to breathe. My Dr called me a little while ago & said it is breast cancer but that its the beginning stages of it. So she is glad we caught it early.. She explained things much better than the nurse I spoke with. Said there is 2 spots in my right breast that are both very small one is 1mm & the other is 2mm. So it will be easy to remove.

I am more scared out of my mind now than i was 2 hours ago.

MelissaDallas

My doctors at an NCI Cancer Center are adamant that LCIS is not cancer. Many medical centers are now calling it a lobular neoplasia of the breast rather than LCIS as they believe that using the term is a misnomer. It is all very controversial.

From the Mayo Clinic:

Definition

Lobular carcinoma in situ (LCIS) is an uncommon condition in which abnormal cells form in the lobules or milk glands in the breast. LCIS isn't cancer. But being diagnosed with LCIS indicates that you have an increased risk of developing breast cancer.

LCIS usually doesn't show up on mammograms. The condition is most often discovered as a result of a breast biopsy done for another reason, such as a suspicious breast lump or an abnormal mammogram.

Women with LCIS have an increased risk of developing invasive breast cancer in either breast. If you're diagnosed with LCIS, your doctor may recommend increased breast cancer screening and may ask you to consider treatments to reduce your risk of developing invasive breast cancer.

Holeinone

Racheal,

Very recently, Time magazine had the cover & cover story about ladies with LCIS or DCIS. It was specifically speaking about ladies in your situation.

It talked about over treating, over testing, too many mascetomies done.

Bottom line, you have every right to be scared, nervous, raging anxiety. No one plans on any of this. Also, if your diagnosis does not change, consider yourself very lucky. My lobular is stage 3, with a high risk of matastizing. Way too many ladies are dx stage 4, right from the get go. Heartbreaking.

Most likely you will have surgery, possibly radiation. Join the group of ladies with similar dx. They will guide you, and let you know what to expect. Good luck

MelissaDallas

holeinone, the article was about DCIS, not LCIS. Completely different situation. LCIS is NOT the lobular equivalent of DCIS and not treated as such.

She is having surgery-an excisional biopsy. They don't do radiation for LCIS. If nothing worse turns up on her biopsy she will more than likely just have more frequent exams or screenings and be offered antihormonal therapy.

Women with LCIS are actually more likely to have ductal cancer than lobular if the are upgraded on biopsy

Holeinone

Melissa, you are a wealth of knowledge....thanks....

racheal1977

Thanks ladies.

I haven't told anyone yet except my husband & mom. I do not think I am going to. So I really do not have anyone to talk to or ask questions about this. So I appreciate the reply's very much. I do not think I have ever been this freaked out ever in my life..

MelissaDallas

Rachael, I was scared at first too, but the fact is that if nothing worse is found on your surgical biopsy, the majority of women diagnosed with LCIS don't go on to develop cancer

SassyMutt

Dear Rachael,

Can you get a copy of your biopsy? Having an actual copy of it and seeing exactly what is in that report can be very helpful. It sounds like you have LCIS, but your doctor is saying you have early cancer? I'm not clear if the doctor is referring to the LCIS as early cancer (which really isn't accurate) or if the doctor is seeing something else in the report in addition to LCIS.

I, too, had a biopsy for calcifications a year ago. My biopsy showed LCIS, just like you. It was a scary call to get and there is a lot of varied information out there about LCIS so it took me a few months to muddle through it all and begin to get comfortable with my diagnosis. In the meantime, I did take the doctor's recommendation and had a lumpectomy. I have a fading 1 inch scar -- barely noticeable. And there is no dimpling for me -- aside from the fading line, you'd never know I had a lumpectomy. It's different for everyone, but I thought sharing my experience might be comforting to you.

As said previously, they like to do lumpectomies for LCIS not because they want to remove the LCIS itself, but to check to see if there is any invasive cancer tagging along with it, as happens in about 20% of case. My lumpectomy showed no invasive cancer. So, about a month after my lumpectomy, I met with the oncologist and started taking Tamoxifen to help reduce my future risk of cancer, since LCIS puts me at high risk.

From everything I've read, determining future risk of invasive cancer for those with LCIS is difficult. Generally, our risk is put at 20-30% overall, but it varies a lot by individual. And most of the risk formulas aren't applicable to LCIS. My breast surgeon calculated my current risk at 12%, and my lifetime risk at 67% (I was 40 when diagnosed with LCIS, I've never had children or breastfed, I got my period young, I have dense breasts, etc..... all kicking up my risk higher).

In addition to taking Tamoxifen, I am on a 6 month screening cycle that is typical for LCIS women -- I alternate MRIs and Mammograms every six months to ensure nothing is popping up. So far, so good!

I know how scary it all is! You have every right to be anxious. And while I've gotten a lot more comfortable with this over the last year, it's still sometimes very confusing and emotional. This site is such a great support system! If I can answer any questions or be of help, please let me know.

Hugs!

racheal1977

I am a little bit calmer today.. Trying not to think about it to much.

I will be having a lumpectomy. They set up the appointment to meet with the surgeon for Nov 25th. I asked if I could wait to do the surgery until after the Holidays & was told absolutely not. It would have to be done asap... That kinda sucks.

Is there any certain questions I should ask the surgeon ?

How long was the recovery for the lumpectomy ?

I am a wuss when it comes to pain in any form.

Thank you again for all of the replies. I do feel a lot better after reading them

SassyMutt

I actually thought the biopsy (I had a stereotactic core biopsy) was harder than the lumpectomy. The weirdest part about the lumpectomy was the placement of the wire they do before surgery -- while in the mammogram machine they relocate the area to be excised and insert a thin wire to pinpoint the exact spot to be removed for the surgeon. It really wasn't bad - just interesting!

I recovered quickly from the lumpectomy -- I only took the prescription pain meds the first day and switched to advil the next day and was fine. I was traveling for work by the end of the week. It was sore, but not real painful. The most annoying part for me was having to wear a sports bra constantly for a week -- it drove me nuts (I hate bras!).

Deep breaths....the great news about LCIS is it is not cancer, it's just a marker you are at higher risk. I've been trying to view my LCIS as kind of a gift..... A) it has helped me keep much better perspective on my life and what's important and because I know about it, I can take Tamoxifen and be screened more often!  If I didn't know, I wouldn't be able to do those things to be better in control of my future. So, that feels good to me.

Big hugs....and holler if you want to chat more! Keep us posted....

MelissaDallas

I agree with Sassy. The surgical biopsy was easier than the stereotactic. I don't get their urgency on the surgery, unless that is coming from your PCP and whoever already told you "it is cancer." Everything I know says this is not an emergency, unless they are thinking the mammogram looks like there could be more going on. I had sclerosing adenenosis, which is why mine was found. It is benign but can look like cancer on imaging

MelissaDallas

You do need to get copies of both your full mammogram report & pathology report. You would know a lot better what is going on

SassyMutt

Melissa, good point on the urgency for surgery -- I meant to mention that in my response. I was diagnosed with LCIS on 9/24 and didn't have surgery until 11/6.  I had a long-planning scuba diving trip to Fiji I was determined not to miss!  My breast surgeon felt it was safe to wait a few extra weeks, but she didn't want to push it any further than that first week of Nov. So, while it wasn't urgent, she also didn't want to mess around. I think it's because of that 20% chance of something invasive being found..... but some women do choose not to do lumpectomies at all and just opt for regular screenings. So, really, it's up to you!

MelissaDallas

I was going to a very busy county hospital clinic staffed by NCI cancer center staff. I had my screening mammo 11/1. They didn't get me in for diagnostic until February and I didn't get through the stereotactic & surgical biopsies until mid April & they knew I had just had (an odd) ovarian cancer. I feel confident that they would have moved me up the line if they felt it was urgent

614

I felt fine after all of the lumpectomies that I have had.  My daughter also felt fine after her lumpectomy.  The surgery is not bad.  It is tougher when you have lymph node surgery.  Good luck. 

If it gets too stressful, you can always ask your doctor for Valium or Xanax.

Anonymous

when I had a call-back a week after a suspicious mammo, and they found tightly clustered microcalcifications, the radiologist wanted to set me up for my biopsy right away the next week. I had a family vacation all planned and paid for to europe, and we were scheduled to leave in a week. My gyn said "it's OK to wait a few weeks, just not a few months; go on the trip and have a good time". ( At that time, I think they suspected DCIS, but still said it was fine to have the SCB when I got back) So I ended up having the stereotactic core biopsy a few weeks later, day after we got back from vacation. They found LCIS and I had my lumpectomy about 2.5 weeks after that. So it was about 5-6 weeks after the initial mammo. Even though the idea of breast cancer feels like an "emergency", it is not; most bc's are very slow growing (with a few exceptions, like inflammatory bc) . There is no rush with LCIS since it is non-invasive. The purpose of the excisional biopsy (lumpectomy) is to make sure nothing more serious is in there along with the LCIS. I took tamoxifen for 5 years, now continue with prevention by taking evista, and I still do high risk surveillance of alternating mammos and MRIs every 6 months; fortunately I haven't needed any further biopsies in the past 12 years since I was diagnosed. (my risk is further elevated by my mom's history of ILC). An additional benefit of the tamox is that it has decreased my breast density markedly, so that my mammos are very easy to read. Praying you get good benign results soon.

anne

Anonymous

when I had a call-back a week after a suspicious mammo, and they found tightly clustered microcalcifications, the radiologist wanted to set me up for my biopsy right away the next week. I had a family vacation all planned and paid for to europe, and we were scheduled to leave in a week. My gyn said "it's OK to wait a few weeks, just not a few months; go on the trip and have a good time". ( At that time, I think they suspected DCIS, but still said it was fine to have the SCB when I got back) So I ended up having the stereotactic core biopsy a few weeks later, day after we got back from vacation. They found LCIS and I had my lumpectomy about 2.5 weeks after that. So it was about 5-6 weeks after the initial mammo. Even though the idea of breast cancer feels like an "emergency", it is not; most bc's are very slow growing (with a few exceptions, like inflammatory bc) . There is no rush with LCIS since it is non-invasive. The purpose of the excisional biopsy (lumpectomy) is to make sure nothing more serious is in there along with the LCIS. I took tamoxifen for 5 years, now continue with prevention by taking evista, and I still do high risk surveillance of alternating mammos and MRIs every 6 months; fortunately I haven't needed any further biopsies in the past 12 years since I was diagnosed. (my risk is further elevated by my mom's history of ILC). An additional benefit of the tamox is that it has decreased my breast density markedly, so that my mammos are very easy to read. Praying you get good benign results soon.

anne

racheal1977

You ladies are simply amazing !!!!!.

When I asked the nurse coordinator today when I spoke to her, she also said that yes it was cancer, but the early stages. so I am not sure what to believe. My husband thinks there is something they are not telling me. I told him he is worrying to much.

I am not sure what the rush is, It was suggested by both my primary physician & the nurse coordinator who is at the mammo place she even made the appt for me & while we were all 3 on the line (me, nurse coordinator.& the surgeons office) is when I asked if I could wait. and they they both said in unison no.. I have had a bad feeling about this from the get-go. and I still do.

My biopsy SUCKED. I am still very sore on one side, I felt it when he cut me & when the needle went in on one side.

The other side the steri strips are irritating me, I went to remove it & it hurt like crazy. Guess I will have to wait for them to fall off

I am glad that I will be put to sleep during the lumpectomy. I could not handle being awake during that LOL..

SassyMutt

I'm glad you are getting this support, Racheal!   I have found this forum sooo incredibly helpful over the last year.  It's nice how everyone pays it forward and shares and supports one another.

Can you get a copy of your biopsy report tomorrow? I would really push for that so you can read for yourself what is in it since you don't feel you are getting all the information. You can even just show up and ask for a copy of it. I think the sooner you get your hands on it, the more you can start understanding your diagnosis and next steps.

racheal1977

I am going to call my Dr in the morning to ask for it

racheal1977

When I meet the surgeon on the 25th do I need to take someone with me ? Or will I be ok going by myself ?

Holeinone

Racheal,

If someone goes with you, you have an extra pair of ears. Some ladies record what the Dr. Says, it's a new language & you are nervous.

Drs. Will tell you the truth, but sometimes we get overwhelmed to hear or understand what they are saying. I think you are confused ( rightly so ) on the Cancer/precancerous state of LCIS. I have several friends that had lumpectomies for that same thing.

Depending on your insurance, you might try to get this done this year, so you are not having to pay the out of pocket both years. It really is a simple surgery. My lymph node excision was problematic, but you will not need that.

racheal1977

I just spoke with my primary Dr face to face. They are getting all of my paper work ready for me to pick up later this afternoon. Its a pretty big file

She said she knows some people do not recognize this as cancer, but she said she is 100% sure it is. Said that any time the word carcinoma is involved cancer is involved.

She is very concerned about there being 2 spots, believes there could be more & believes the surgeon will take out a little more than just around the 2 spots, Said she spoke with the surgeon this morning. and will be keeping in touch with her. When they did the biopsy they took two samples where the calcification's were & she wishes they would have taken more.

She has been my Dr for 15 years & I trust her 100% if it wasn't for her I would have not had the biopsy to begin with, considering when I got the mammogram they told me I could wait 6 months to a year to have another mammogram & did not recommend the biopsy. She called me from home that night & told me under no circumstances am I to wait to have the biopsy & she had already put the forms in for me to do it.

I now wish I had went some where else for the biopsy, When I told the nurse coordinator I would not be going through them for the surgery she did not understand why. ( long story short they are a small hospital & messed up with both of my sons.. I am really kicking myself over this one.

I think I am going to try to not think about it anymore until I speak with the surgeon. Easier said than done. We are supposed to get some storms today maybe that will help

My hubby asked off for work & they laughed at him, because of what day it is. So there is no way he will be getting it off. I am more than ok going by myself.

I do not want to ask anyone else to have to take off that day. I did not even realize it was the day before Thanksgiving until my husband said something LOL.

GRRRRRRRRRRR I am so ready for this year to be over. It has just been 1 thing after another.

Thank you ladies again, this crap is so scary & I do not have anyone to talk to really about any of this,

SassyMutt

Hi Racheal,

What did the biopsy report say?  If it is truly just LCIS and nothing further, it is not considered cancer, at least not INVASIVE cancer (and that's an important distinction). Yes, technically the cells are noninvasive abnormal/cancer cells, but because it rarely if ever becomes invasive (hence, the "in situ" part of the diagnosis meaning "in place") and in and of itself doesn't hurt you. Additionally, when it's found in one spot, it's often in other places -- perhaps in both breasts. But again, it's a marker for future risk, not considered "cancer" per se so even when they excise they aren't concerned about clean margins or anything with LCIS -- they are just looking to make sure there isn't invasive cancer lurking nearby.  

And as a result, most doctors have agreed that it's not considered a cancer and doesn't require the same level of treatment.  I learned a lot by googling LCIS (lobular carcinoma in situ), you may want to do that and look at reputable sites for info. It's kind of a confusing diagnosis I have found and I spent a lot of time reading the first few months after diagnosis. LCIS is considered part of a condition called Lobular Neoplasia and many doctors have argued it should be referred to as such to avoid the fear that comes with the "carcinoma" word since LCIS isn't invasive, etc.

Are you seeing a surgeon who specializes in breast cancer? I would really encourage you to talk to a specialist in this. I'm sure they can help guide you -- and perhaps if your primary doctor is concerned they didn't take enough samples, talk about that with the breast surgeon and see what he/she thinks and if it's needed they could excise it during the lumpectomy.

Don't kick yourself!  You have only just received some initial information -- it sounds like you have the opportunity to get a lot more info, talk with the surgeon, etc. to ensure you get the right treatment!   

I like the suggestion to record what the doctors/surgeon tell you. Most smart phones have that capability. Then you and your husband can review it together after the appointment to make sure you didn't miss anything, and so he can hear exactly what the doc says too.  I found bringing someone with me was really helpful because I was really nervous and found it hard to take good notes and keep everything straight. If I couldn't have brought my husband, I would have asked to record it.

Hang in there!

 

racheal1977

I did not end up making it back up there I am going to go today. The surgeon I am seeing is a specialist at a breast center about an hour away from us.

When I was speaking to the nurse coordinator she mentioned that they would be doing something with clean margins but I did not understand what she was saying.

I will most likely record everything. & I think my mom is going to go with me.

racheal1977

OK so it says Final diagnosis.

Breast right , Lobular Carcinoma two foci 0.2 and 0.1 cm ( not sure why I thought mm )

Proliferative changes

Microcalifications present

Molly50

Clean margins means your surgeon will excise tissue surrounding your two tumors to make sure they get everything. The pathologist will check the tissue to make sure the margins are clear of cancer. If you have clean margins then you don't need anymore surgery. In my case there was invasive cancer throughout the vascular system and she could not get clean margins so i had to go back for a mastectomy after I healed from the lumpectomy.