LCIS still found after bilat mx

sherry64 · May 2009

Hi all. I was diagnosed with LCIS and DCIS in Oct.'08 and had bilat mx Dec.'08. Pathology from mx showed LCIS in margins. No further treatment recommended by onc. Fast forward to this afternoon. I had my exchange surgery yesterday along with a biopsy of a few lumps that showed up near the top of my left TE. My PS called an hour ago with the path report and was concerned because LCIS was found along with the fat lumps he removed. He said he didn't see any breast tissue, only yellow fat. It appears that virtually all of my remaining microscopic breast cells have LCIS. He has already spoken to my breast surgeon's office and is sending the path report to my onc. He's thinking I should consider Tamox. I'll speak to my BS at the end of the week. My onc isn't that big on dealing with LCIS. So I'm wondering if anyone who had a bilat mx for LCIS also took tamox. I just turned 45 yesterday and have my ovaries (premenopausal) but no uterus.

Thanks,Sherry

Anonymous · May 2009

sherry----(I didn't have bilat masts, but I did take tamoxifen for 5 years for LCIS. ) Since they cannot remove 100% of breast tissue during bilat masts, there is still always a chance that any remaining tissue can contain LCIS. (although it should be significantly less, as there is much less breast tissue). It reminds me of when I lost my ovaries (ruptured)--gyn said I can still get ovarian cancer since there are microscopic cells still present, but the chances are significantly lessened. I'm not sure how they would figure out your risk level now from the LCIS, since they say it is the same whether you have widespread LCIS or only in one spot. You should talk to your doctor about the risks and benefits of tamox; you wouldn't have to worry about the endometrial cancer risk at least.

anne

idaho · May 2009

I don't know if radiation is an option after exchange? Is your LCIS estrogen +? If not it won't do you any good to take tamoxifen..... it is just an estrogen blocker. I hope everything turns out ok for you.....Tami

sherry64 · May 2009

I don't think they tested ER status of my LCIS after biopsies or bilateral mx. I haven't seen this most recent path report so don't know if they tested ER status this time either. I will definitely ask.

Sherry

digger · May 2009

Wow, this post makes me so incredibly nervous. I had my exchange 9 weeks ago after a left unilateral mx that took place in Nov 08. My recovery from the exchange has been, until recently, completely uneventful. About a week ago, however, I noticed a lump just above my left implant, and now I feel 2. I'm convincing myself they are scar tissue, maybe a swollen lymph node from when I shaved my arm, or maybe even something that was dislodged during physical therapy for my frozen shoulder. I'm really not planning on mentioning these lumps to anyone, as I don't want to go through anything more, but I'm getting nervous.

I had extensive high grade DCIS, hence a mx.

I hope others are able to give you good info on the tamoxifen, and I'm thinking of you. I didn't mean to take over your post, I'm just getting worried!

sherry64 · May 2009

digger- Please see your surgeon about the lumps. They are almost certainly benign but you don't want to mess around. My BS, PS and onc were pretty sure my lumps were just fat. We did an ultrasound first which showed nothing, further supporting a benign diagnosis. But it made sense to remove them during the exchange. If the exchange hadn't been scheduled we probably would have just monitored them since taking them out after the exchange would be a little more complicated. My fatty bits were movable and oval shaped. And I can assure you I will run, not walk, to my surgeon's office each and every time I feel a lump.

Sherry

kmccraw423 · May 2009

Sherry - NOT FAIR, NOT FAIR. Your diagnosis and surgery ran during the same months as mine. Unfortunately, my expanders got infected so reconstruction will have to wait. This scares me that you can have a bilateral mx and still get breast cancer.

Digger - I concur - get thee to a doctor!!!!!!!!!!

digger · May 2009

I'm curious, what are fatty bits and where would they come from?

leaf · May 2009

There can be a thing called 'fat necrosis', usually from injury, surgery, or radiation. http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

(near bottom of the website).

They cannot remove 100% of breast tissue from a person. It is also impossible to look at 100% of cells in a BPM to find out if there is a cancer there. On any biopsy or mastectomy, they have to sample.

sherry64 · May 2009

I think fat lumps can be a result of trauma such as surgery. I didn't notice them until after my last fill when my expanders were really pushing everything forward. Must have developed after the mx.

kmccraw423 · May 2009

These days I think every lump, bump or irregularity is cancer. I think that but I am not camped out at my doctor's office - of course, my sister is a doctor so I just ask her. There is no reason for my doctor to think I am neurotic. He'll find out soon enough.

I have an aunt that has been scared her whole life of getting cancer. She's 74 and so far nothing. She is constantly at one doctor's office or another's. Her brother (a colon cancer survivor) says no cancer will ever sneak up on her the way she goes to the doctor. Her sister, my Mother died of pancreatic cancer so there is cause for worry but not to the point that cancer is your only focus in life.

I've never paid much attention to my body and I make a terrible patient. I had 3 surgeries in 30 days and wonder why I haven't healed completely.

Oh well, everyone have a great night.

digger · May 2009

Sherry,

I'm wondering how your meeting with your onc went last week. Did he/she recommend tamoxifen? I'm calling the BS tomorrow about these swollen lymph nodes, which are getting bigger and more numerous. Starting to get worried a little bit...but also trying to get on with my life....

sherry64 · May 2009

digger-Thanks for checking in on me. I haven't spoken to onc or BS yet. Hope to speak to BS today or tomorrow. I had wanted him at the exchange to remove the lumps but we couldn't get all of our schedules to work out. So I want his opinion next. I'll post an update when I learn something.

Did you call your BS?

Sherry

digger · May 2009

Yep, I finally bit the bullet and called the BS and PS today. Ignoring these lumps doesn't seem to be helping them go away, so I got up the nerve to make the calls. They want me to start with the PS to see what he says, and I see him tomorrow morning. I'll let you know what happens. I'm kind of freaking out tonight thinking of all the possibilities....

Take care.

sherry64 · May 2009

Yes, there are lots of possibilities but remember that most of them are benign. It's good you're seeing your PS tomorrow.

Sherry

digger · May 2009

Back from the PS. Essentially, he and his physician assistant were feeling in the wrong place, so they couldn't feel what I was talking about it. I admit I feel very deflated right now, like I'm imagining things, but I know I'm not. I feel three or four distinct lumps. The PS said whatever I was feeling, it was likely scar tissue.

Anyway, I'm through with it, and if it is something to worry about, eventually it will make itself more evident. I just want to curl up in bed right now.

sherry64 · May 2009

I actually went to my BS twice before he felt what I was talking about. My lumps weren't easily felt without something slippery like cocoa butter. On my first visit to him I was too embarrassed to pull out the cocoa butter I brought with me. But he ordered an ultrasound. When he called with the benign US results he mentioned that he didn't feel much. But he also said that if I felt something that's what was important and it should be biopsied. We agreed on another appointment because I wanted to know that he felt what I was feeling (he even said he wouldn't charge me). So a few days later I went in armed with my cocoa butter. He was surprised when I pulled it out but guess what.........he definitely felt the lumps with it. Could you go see your BS? My PS is excellent and I love him but he really isn't interested in the pathology of all this cancer stuff. I think if it's going to worry you, you should keep trying.

Sherry

taraleec · May 2009

digger- Try to hang in there. Do something nice for yourself and pamper yourself. Sometimes we concentrate on being there and taking care of others, that we don't care for ourselves when it's much needed. Give yourself some extra care, these worrisome feelings may lessen. I too am struggling thinking I have something in my breast right now that needs to be taken care of. I will be thinking of you and praying for you.

digger · May 2009

Thanks so much for everyone's kind words. They really do mean a lot to me, and they make me feel much better. Sherry, I agree if I brought the lotion with me then he would feel the lumps. I know I'm not imagining things. At this point, the whole area is so inflamed and irritated. Maybe later this week, when I've calmed down, I'll have my husband feel them so I don't feel like a hypochondriac.

In the meantime, I did finally get off the sofa, went to Dunkin Donuts to get one of my favorite donuts (Boston Kreme....I figured I deserved it...), then got a manicure and a pedicure.

Thanks again.

digger · May 2009

Just came back from my physical therapy, and the PT definitely felt the lumps. So, at least now I feel like I'm not this huge hypochondriac. I'll figure out what to do; she said if I'm worried about them, then get an ultrasound, talk to my BS (not my PS, like I did). I'll think about it. But, at least now I don't feel like this crazy hysterical woman who is making up things.

Mykidsmom · June 2009

Sherry - I am so very sorry that they have continued to find LCIS. Let us know what you decide to do. You and I had our surgeries at about the same time. I will be thinking of you.

Digger - Did you go to the doctor???

digger · June 2009

Mykidsmom,

Thanks for asking. I decided to remain blissfully ignorant of the lumps for the summer...I have an appointment with the breast surgeon in Sept and will bring them up then. I just don't feel like dealing with any of this anymore.

Mykidsmom · June 2009

(((Digger))) Sometimes enough is enough. Best wishes!

lene17 · June 2009

I, too, developed lumps - in an area above each breast. My PT suggested I call my doctors and we, then, waited 6 months to see if the lumps absorbed - with lots of massaging the areas. They didn't. BTW, I had a bilateral mx with tramsflap recon. in Sept. of 2008 - so the PS says the fatty necrosis is from where the flap didn't get enough blood supply. The PS is removing both lumps (fatty necrosis) on June 26. Both my onc. and onc. surgeon felt it was ok to leave the lumps in. I am voting with the PS - just to make sure there is nothing there - and to take away future worry. I must admit I feel very uncertain that I am subjecting myself to something that both oncs. say is unnecessary.

Mykidsmom · June 2009

Lene17 - I have a friend that is considering a unilateral mastectomy and modified tram flap. She is looking for others that have had the procedure. Are you happy w/ your results? Can I hook her up w/ you?

sherry64 · June 2009

Hi Jean. Thanks for asking about me. I'm not doing anything further re. the remaining LCIS. There really aren't enough breast cells left to warrant Tamoxifen, even if all the remaining cells have LCIS. I'll just keep up my self-exams and get to my onc and/or BS once a year for a professional check. I can't remember from other posts, but are you having nips done? I'm scheduled August 10th and am having a tummy tuck at the same time. I'm pleased with my implants (650cc round, smooth silicone). They definitely look better than my original equipment.

Digger-I'm glad you have an appt. in Sept. Just make sure you keep it!

lene17-I would definitely have the lumps removed. No one can be 100% certain what they are until they come out. I think you're doing the right thing.

Sherry

lene17 · June 2009

Mykidsmom: absolutely tell your friend to contact me - I don't know how to do it on this site but I'll try to learn. The trams procedure was awful - but the results are beautiful and really do (even without nipples) look and feel like they belong to me. I don't know if I thought the procedure was so bad because I was in a REALLY bad place at the time of the surgery - even had a total meltdown - which was not like me at all. The women in my support group that had the single tramsflap report being almost normal in a matter of weeks. Looking back over the last 8 months, I guess, if I had to choose, would probably go with the tramsflap again....and I can't believe I'm saying this. I was just so blown away by having cancer, having to stop teaching after only 2 weeks into the new school year, and tons of other family issues, that I was not in a good mind set for major surgery. But I'm back to normal - and that means doing everything!

Sherry - thanks for the words of encouragement. I have been asking everyone's opinion and it's good to know someone agrees with me who has had BC and has my same fears. I just had my pre-op appt with PS and hospital - and I am feeling so much more positive and healthy going in to this second (really my 3rd) surgery.

Mykidsmom · June 2009

Sherry - Yes, I am going to go in for nips as well, but not until the weather gets cold again. I want to be able to truly enjoy my summer. And I agree, my implants look better than my original girls as well.

Iene - Thanks for the offer. My friend was able to find someone here that had a tram and has decided to go forward with the surgery. I am glad that you are pleased with the final result. Hugs.

LCIS still found after bilat mx

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