LCIS vs Invasive

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

New here. 50 yr old, peri-menopause with calcifications on mammo, stereotactic biopsy results LCIS rt breast, benign left w/papilloma. MRI suggested multi-centric, diffuse tissue that is possibly invasive. First surgeon recommended mastectomy since it appears large enough that excisional biopsy would be deforming. I went to Cancer Center for 2nd opinion and trusted Oncologist had PET scan done, which came back clear with no indication of nodes involved. He is sending me to a surgeon who specializes in Breast CA so curious what his opinion is. Oncologist says the MRI doesn't really clarify if this is invasive or not. With all the experience here, is it wise to consider more biopsies or go with mastectomy to be sure? I know it's my decision (leaning toward mast) so that I'd have less anxiety. Any help / advice is welcome Smile

brainman · Posted: Sat Sep 15, 2007 10:20 am Post subject: Re: LCIS vs Invasive

Jilly, I am so sorry that you are having to deal with breast cancer. I am sure that Nancy (Muttsmom) and others with more experience and information will reply soon. I just wanted to let you know that you are in my thoughts and prayers. The decision you have to make has to be a very difficult one. I had to make a similar decision about my cancer (brain cancer). Besides getting our opinions and advice, I will encourage you to ask all of these questions to your own medical team. They know so much more about you case than we could ever know. If you trust your doctors, listen carefully do their recommendations.

Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

Thx brainman,

I appreciate the good wishes and prayers. I've read many posts here and my prayers are sent up for all those struggling and prevailing with Cancer. I will continue to search for info regarding LCIS & if/when it becomes invasive (seems rather difficult/sneaky to diagnose and how to treat?) It is great to have a place to voice fears, questions, encouragement etc. It is rather consuming and I'm afraid my friends/family aren't saying it, but thinking "There's more to life than your cancer".

Take Care

Muttsmom · Posted: Sat Sep 15, 2007 11:55 am Post subject: Re: LCIS vs Invasive

Hi,

There is no test besides a biopsy that can tell if it's Invasive or not, unless of course it's in the bones or another organ, which thank God is not the case. I was dx with ILC (bio at bottom). Lobular is sneakier then Ductal. Lobular is prone to mirror itself in the other breast. You can have DCIS and Invasive Ductal, just like you can have LCIS and Invasive Lobular, but Lobular hides itself on mammgrams. My Ulra sound was read that I had 2, 1 cm cysts and to come back in a year. I didn't know at the time that an ultra sound or no other test can tell if it's cancer or what kind. My gut said to get it out, which I did and thank God. I was already Stage III with 9+ nodes and had just turned 43.

PET Scans are good, but they aren't 100%. They can pick up tumors smaller then other tests, but again, I wouldn't be 100% sure it wasn't in your nodes based on that test. It can also give false positives, which in your case it looks like it didn't show anything. I personally think it would be a huge mistake for the surgeon not to do a Sentinal Node Biopsy. That's where they remove about 3 and if the 1st 2 are negative, then they don't take anymore. I opted for a double mastectomy, not only because it's prone to mirror itself, but on the cancer side, there was no way to be sure if that one tumor was the only one, or if there were more small ones that couldn't be picked up yet.

I hope this has helped and please e-mail me or post anytime. I don't think I have it checked to show my e-mail and I need to fix it, but it's MuttsMom04@aol.com
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

Thanks for your response Muttsmom~

I appreciate your insight since you've been through a bunch. I agree & thought it was a bit odd that Dr didn't seem to think the nodes needed biopsy (maybe I misunderstood him?) He just said the PET scan looked clear and likely no radiation/chemo was necessary. I definitely will tell the surgeon that I want him to do a SNB though. I told Oncologist that I wanted bilateral mastectomy since I'm fairly young (50-it's all relative) Smile

strong & otherwise healthy. I would rather deal with this once (hopefully) and not have constant worry, biopsies, mammos etc to check the other breast only to end up with removing that breast later. But, then of course, I start to worry about the insurance etc...

I hope you are on the other side and doing well!! Thanks again for your help!

Muttsmom · Posted: Sat Sep 15, 2007 8:05 pm Post subject: Re: LCIS vs Invasive

MRI suggested multi-centric, diffuse tissue that is possibly invasive

This concerns me. Not that you could have Invasive, that's not uncommon, but that your surgeon is already saying no chemo or radiation, when there is no definite dx yet. You know you have LCIS, but without another biopsy or (I agree with your double mastectomy with Lobular) the mastectomy(ies), and ALL the tissue sent to pathology, you won't know what treatment will be best and that's for you and the oncologist to discuss. I truly believe I'd be going back to the 1st surgeon. The 2nd one seems to be "assuming" way too much when it's your life, not the surgeons.

I had on problem with insurance approving the 2nd mastectomy. Because of it being Lobular, and prone to mirror itself, my surgeon wrote a pretty simple letter, explaining I wanted it, why I wanted it and he agreed and thought it was a resonable request. They approved it.

For what it's worth, even though I had 9+ nodes, the cancer in them wouldn't have been big enough to be picked up on a PET Scan. They only way to know not only what kind of cancer, whether LCIS or LCIS and ILC, and if you have positive nodes is by a biopsy. It's not real common to have positive nodes with ILC, but I know 5 ladies that have had ILC (only about 10% are dx with it), and even though the latest studies I've seen and they may have been updated since, said that only 5% with ILC will have positive nodes........ all 5 of the ladies I have met since I was dx, that had ILC, all had + nodes. It's so important to know if it's Invasive and if nodes are involved to know the right course of treatment.

Please keep me posted, and again, if I can help, please let me know.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

Sorry, think I need to vent here Confused

The oncologist sent me to a surgeon to talk about mastectomy. My first impression was "ok, the waiting room is full...he must be busy" (Good or bad to start?) While completing the paperwork at a table in the center of the room with other waiting patients, I can hear the person at the front desk getting my new patient chart together. She needs to get the pathology report from the sterotactic biopsy because they only gave me the final conclussion/findings, but not the actual pathology section. So, she's calling to locate this and request it~using my name, date of birth etc...(made me uncomfortable what with all the privacy/hippa papers I had to sign) Anyway...just felt like she was broadcasting my dx, name, age etc...The waiting room was very small and some people standing. Maybe I'm just a bit sensitive with all this!! Finally called in to exam room and the doc's nurse is very nice, goes over all my films, asks why I'm there etc. The doc comes in and very nice, but kind of brusque (He had all those patients in the waiting room)Ha! Well, he starts out with the LCIS is not really cancer theme and that MRI's are often False positive and show things that aren't really worrisome. He asks what my thinking is on my situation (if I'm ok with careful monitoring, maybe tamoxifan, biopsy, mastectomy etc). I explain that I want to know exactly what's in there and to remove it before it spreads. So, his advice is an MRI guided biopsy first then we can discuss mastectomy if I'm really searious about doing it even prophylactically. I can tell that he thinks I'm wasting his time and my situation is not as serious as all those others in his waiting room!! (I really am sensitive today!) Anyway, I was a bit put off by him (sort of the attitude that he "knows it all" and my questions / concerns were silly and I should just do whatever he says. By this time, though I'm thinking, well another biopsy might be good and better to have another shot at getting a true dx. So, go make the appt for MRI guided biopsy for a week later. Then, on the way home I get a call saying that they had to schedule a regular breast MRI first (I just had one 2 weeks ago) because this dr doesn't think the facility where I had the first one was the best equipment / best radiologists etc. and "their protocol" was to have an MRI at their facility before the MRI biopsy. Would that tick you off?? I understand that he has radiologists that he trusts etc. but, it just seems a bit excessive. I asked to speak to the nurse to have it explained, and she said, "Well, maybe the MRI done at our facility will mean that you don't even need the MRI guided biopsy". I'll tell you, by now I'm feeling like I want to just hide under a rock and not do anything...(I know it's just the beginning, but I felt so emotional about it)...."NOT DO ANYTHING?" Anyway, I don't even know if my insurance will authorize both the MRI and then MRI biopsy and really hate to go to yet another surgeon. But, feeling quite uncomfortable about the way this consult went. Am I just being too naive and emotional about this? Do I have to put up with it? Ha! My oncologist is kind, caring & top notch in his field, and he highly recommended this surgeon....so hate to be one of those dissatisfied patients, that complains all the time. But...it's my body/life!! Any advice or input and how would you react and handle this?? Ok...my rant is done (I think) Mad

I know you all have dealt with so much more and probably understand all of this too well. I'll try to have more encouraging words in the future Smile

Jilly

Muttsmom · Posted: Wed Sep 19, 2007 8:30 pm Post subject: Re: LCIS vs Invasive

Hi Jilly,

I don't think you are being too sensitive at all. Breast Cancer is serious stuff and he acted like you had a cold. LCIS is considered pre cancerous by some, but it is considered early (very) stage BC by others. When I had my mammogram (which missed my tumor) and the ulta sound, the surgeon that I used for my mastectomies, asked me to bring the films from the hospital where they were done. I didn't have to have a repeat test that I just had, which insurance probably wouldn't have paid for anyway. If this surgeon doesn't think they are that great, then why can't he get a radiologist that he likes to read them? Why rack up more bills for you, not to mention having you repeat the same test again??

This wait, watch and see what happens is total BS. I was told to come back in a year, since the mammogram missed mine and thank God I didn't listen.

Was this the 2nd surgeon or the 1st one? If it takes 3, it would be worth it. You need to know if it's Invasive or only In Situ. Even if it's only LCIS and none is invasive, I'd want that mass out of me. Since there is question if there is Invasive or not, I'd want that out of me and biopsied. I can understand why you're disgusted. This is your life and your health and you feel like you're getting blown off. Remember, the doctors work for YOU and if it takes another opinion or going back to the 1st one, I have no doubt that's what I would do. Of course the decision is yours, but from someone who got blown off, I know how it feels. Thank God I didn't listen and got another opinion.

Please let me know what you decide and what happens. I was pre menopaual at 43, so I'm assuming you're in your 30's or 40's since he's mentioning Tamoxifen?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Muttsmom · Posted: Wed Sep 19, 2007 8:35 pm Post subject: Re: LCIS vs Invasive

I just reread your 1st post and see that you are 50 and peri menopausal. I most definitely still feel the same way I did. They seem to blow off ladies in their early 30's to early 40's, but you're still in the young catagory as far as BC goes. (I'm 48 now, so I don't mean that 50 is old except when it comes to BC Smile

I don't know when some docs will get it. Age doesn't matter.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

Hi Nancy,

Thanks for listening to my rant. This is the 2nd surgeon, the first one was on my previous insurance plan. The nurse said she'd call me tomorrow after she clarifies with the dr if it's indeed necessary to have a 2nd MRI done at "his facility". I thought the whole idea of MRI guided biopsy was that the MRI (at that time) is what guides the biopsy site and isn't that what he needs to get a tissue sample of the most enhanced area of LCIS? And, I agree with you that even if that doesn't come back as invasive, I want to get the LCIS out to be sure. I guess though I should have a true bc dx in order to consider a bilateral mast or my insurance might not cover it. Anyway, thanks for your encouragement and advice! I did think of you when listening to the doc today. I don't want to let anyone convince me to wait / watch for something worse!! It might already be "worse"!!

Thanks again~it just helps to get it off my chest (did I just say that? Smile

brainman · Posted: Wed Sep 19, 2007 10:49 pm Post subject: Re: LCIS vs Invasive

Jilly, I am very sorry for the confusing situation you are in right now. I can understand your anxiety... not knowing is way worse than knowing. I totally agree with all that Nancy has said. Certainly, that mass (whatever its final dx is) should be removed. Whether a mastectomy (one side or both) or even a lumpectomy is best for you is between you and your medical team. I will be thinking about and praying for you and your medical team as you try to figure out what needs to be done.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Muttsmom · Posted: Wed Sep 19, 2007 11:45 pm Post subject: Re: LCIS vs Invasive

it just helps to get it off my chest (did I just say that?

Too funny. You've got the right attitude. It seems like the 1st surgeon listened to you more and was supportive of your decision to have bilateral mastectomies. Is he not on your new insurance? When I changed, I was so glad to see my surgeon on the list and all the oncos, medical and radiation are all on everyone's list, so that was great.

The part that they are thinking is Invasive, needs to come out. Taking a little piece is for the birds. If there is a lump, they need to remove it. Why leave any in??!!!

I would have a problem with the 2nd surgeon and his attitude like you do. Not to mention his front office not respecting your private info.

If you want to get another opinion, a few more weeks isn't going to hurt anything, it's the 6 months and 12 months of waiting and watching which is a crock.

Vent anytime!! Believe me, I did when I was 1st dx, but I was lucky and had a great surgeon and oncos (still have them), but was going through a divorce at the same time, so there were days that it was best for everyone to stay away..... Smile

My dogs and cats looked at me like, she's got an attitude again, let's go play in another room....haha

Post anytime and you are more then welcome to e-mail me anytime.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Jilly · Regular Joined: 15 Sep 2007 Posts: 13

Just an update~I went to another surgeon and I really liked him (whew!!) I wish docs were more aware of the impressions they create in first consultations. Also, in a perfect world, the office staff would be aware that the image they project makes a patient either more or less confident in the Dr.!! Ha....I guess I'm just too critical!!

I do feel more confident with his recommendation to have a wire localization excisional biopsy. I want the tissue out and pathology done to know what we're dealing with!! This should happen in the next 2 weeks and it is such a relief to be moving forward.

I will post the results and hopefully it will be something to cheer!! At least, I hope that if anyone is in a similar situation, they will be motivated to seek the doc that listens, takes time etc. and gives you the chance to follow your gut instincts.

Sending thoughts and prayers and hugs to everyone~Jilly

Muttsmom · Posted: Sat Sep 29, 2007 11:50 am Post subject: Re: LCIS vs Invasive

Hi Jilly,
I'm so glad you found a surgeon you liked. It's so important to have confidence in the person that we trust our lives too. I'm glad to see that he's proactive and wants to find out for sure if it's Invasive and In Situ or just In Situ. That makes a huge difference in the treatment plan. The wondering does no one any good, just stresses us out more. I'll be waiting to hear what you find out. And, I don't think you are too critical at all. The 1st radiation oncologist I went to was all gloom and doom. I knew I was Stage III and high risk because of my age and all the nodes I had involved, but I wanted someone that was going to fight with me, not put me in a deeper state of depression. Needless to say, I changed.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

bella coola · New User Joined: 13 Sep 2007 Posts: 4

Jilly,
Just my 2 cents. I live in a remote town 6hrs+ away from any specialists/surgeons. I found a lump in my breast last July and my family doctor sent me out immediately for a mammogram and an appointment w/ a surgeon. The results of the mammogram were negative and I am only 40 so the surgeon was very reluctant to do a biopsy. I'm sure it was only the notes from my family doctor that persuded him to do the biopsy. Thank god he did, of course it was cancerouse and a grade 3 Her positive one that could have been a disaster. He was rather sheepish as he gave me the news a week later. Trust your own instincts and do what you feel needs to be done, and don't ever feel silly about it.
Clare

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