Team ILC Warriors
Comments
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Too bad there isn't a "like" button on the forums! Love your comment, 4sewwhat!
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Hi everyone
My sister was just diagnosed with ILC 1cm Er+ stage 1. They didn't grade it yet. I'm triple pos HER2 pos and just finished TCH & rads. so it was a bit of shock that she was diagnosed. I'm trying to help her. My big sister after all.
I was surprised (she had a different Dr than me) that they didn't grade it yet. Her dr said after surgery they will.
She's having surgery on Tuesday and very freaked out. No surprise. is there anything i should be looking up. I had really research my diagnosis and knew what to expect. I'd like to help her.
Thx and I appreciate any info.
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Hello everyone, I only posted on here once or twice, but wanted to come for opinions. I was dx with ILC back in April. I completed chemo, I had a double mastectomy 9 days ago and found out I went from stage 1 to stage 3. After removing everything they measured 10cm of ILC and LCIS. I had 2 positive nodes after they told me my initial report was negative and the cancer was gone! This past Monday they told me, the nodes did look negative, but they weren't. So after only taking 2 nodes out and going by looks I have to go back into surgery on the 26th for an axillary node discection and a left papilla excursion? I'm supposed to do radiation, 6 weeks, 5 days a week. I knew lobular was sneaky, but damn!!! I had all the scans and it didn't pick up anything an was wrong with the size, it was way worst! I just turned 33, my 4 kids have been so awesome. My husband has been a sweetheart too! I had a feeling this nightmare wasn't over. My friends and family are treating me like I'm dying, am I? Lol not funny, but chemo didn't kill the cancer in the lobes so I just want to know I'm doing everything I can? So frustrated.....
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Chris im sorry that you are going thru this. Your cancer is grade 1 and chemo works best on faster growing cells. You will have a good response with tamoxifen because of your er+ status. You will probably have radiation and that will hopefully kill all the stuff that may still be there after surgery. There are lots of longterm survivors and threads about that. You should read some inspirational stories. You will be here for a long time. Healing hugs.
Shasha, Im sorry that your family is going thru this. Have either one of you had genetic testing? What kind of surgery is she choosing? Alot of ILC women choose bilat mastectomy because ilc is so sneaky. But some prefer a more reserved approach. I chose bmx because mine didnt show up on mamo. The sentinel node test they did showed negative cancwr during the frozen section performed while I was in th o.r., however final pathology showed positive for cancer with extravasation into the tissue. I had to go back a month later and have an axillary dissection. I ended up having 8 out of 15 positive nodes. I had cat scans, pet scan, bone scans and mri done before surgery and none of them picked up the positive nodes. I dont regret having the bmx because I wouldnt have trusted the follow up test results since they didnt pick it up prior to surgery. Prayers sent to you and your family. You are a great sister and I wished I had one.0 -
Melmcbee thank you for your kind words and prayers. The dr recommended lumpectomy.that made sense to me for 1cm. I only learned today she had ILC. Because of me they are doing the braca test on my sister now. I'm seeing my mo next week and will see what she thinks. I'm 61 and she's 68. They found her bc on a mammogram/ sonogram They saw something. They thought scar tissue from breast reduction but she mentioned my history. And they requested a core biopsy. She was lucky with that. Why is this called sneaky. What should we be asking??? Thx so much.
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Hi Sasha,
Best of wishes for you and your sister. Lobular is sneaky! The way I understood it is that ductal grows in clusters and lobular grows in chains so it can blend into what's around it and doesn't show up on imaging. I had a PET scan after my biopsy. The tumor was 6x6x3cm and had a marker in it from the biopsy. It barely showed up on the PET scan. They could only tell where it was because of the marker. I recall a couple of my doctors said MRI is best at detecting lobular. Also none of the imaging shows nodes very well. Mi had mammo, PET, MRI, and US. They thought maybe 2-5 nodes. Turned out to be 22 :0(
I did take tamoxifen for 7 weeks before my surgery and the doc said the tumor was responding to it. It does respond well,to hormone therapy if it is estrogen positive.
Hugs and prayers!
Lynne0 -
Thanks for your feedback ladies😊,
Just feeling overwhelmed with everything, being told one thing and be the complete opposite! I was under the impression you could not radiate a reconstructed breast? This is all a learning process. I get used to and think I'm done with one thing and then BAM, hit with more. I guess I got to look at it this way, at least they are trying everything they can to stop it. It just really stinks that after chemo and surgery, I was starting to feel good again and I know I'm being knocked back down has me down. I have been lurking for months on this ILC site and I have been inspired by so so many of y'all strong ladies, I just don't have anyone to turn to, especially my age.0 -
Looks like a very good news. Just spoke with the doctor and he thinks that it looks like just stomach inflammation. He took some samples for biopsy, but does think its mets or anything serious. Yippie. Thanks to everybody for prayers and good wishes.
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Sorry, i misspelled, it sgould be 'he doesn't think it's mets'. Still a bit confused after the procedure, just got out of the recovery room.
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Antonia that's great news! Rest up and have a great weekend with no extra worries!
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4sewwhat
Thank you for the explanation. I don't think I'm going to mention that to my sister now. She's so freaked out still. When she's calmer, and can absorbed new info. Good luck to everyone and thank you for welcoming me here.
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Hi Sasha,
I just had a whole message typed and then hit the wrong button and it disappeared :0(. So here goes again...
I would not mention it to your sister, I just wanted to give you an idea of just how sneaky it could be. I hope you guys don't get any awful surprises like I did. I went into surgery thinking with an oncotype of 13 I wasn't even headed for chemo and a couple days later with the path report I wondered for the first time if I was going to die from this?
Took a day or two to wrap my head around this new puzzle piece and then I started fighting harder and armed myself with all the information I could find.
I spotted a new thread that might help you guys. Newly Diagnosed with ILC. Maybe that would be another good place to gather info because a lot of them are just starting out like your sister.
Best of luck to you both.
Lynne0 -
Hi Cris, sorry you keep getting surprised by this sneaky crap too. Best of luck on your node dissection. We have a pretty similar diagnosis. I hope you stay IIIa though and no new nodes show up. Tamoxifen was impacting my tumor before surgery and ILC usually can respond well to hormone therapy. So even though chemo didn't seem to make a big difference there are still weapons in the arsenal. Keep trying to think positive. Trust me I know how hard that can be so I don't say it lightly.
I wanted to suggest you check out the thread September 2013 chemo group. Even though you already did chemo there are a couple of girls there your age and they have several kids between them.
Hugs and prayers for your upcoming surgery and overall well being.
Lynne0 -
4sewwhat. Thank you. she doesn't want to go on any forums. So I'm trying to understand the differences between hers n mine. I think we need to wait till after the surgery and see her path before we'll. understand what's going on. I agree that she's not ready for any more info. She so scared. Thank you all and best of luck to you
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ILC also tends to be slower growing than other cancer types.........
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That explains why her surgeon said she probably had it for 5 years.
Thx again.
Best of luck to everyone0 -
My surgeons said it was probably here 8-10 years. YUCK!
Best of luck for you girls :0)0 -
Incredible.
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My MO told me the same thing...probably started 10 years prior to dx.
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Hi ladies,
I don't know if this is the right place to post my question....I had ILC, stage 3A, ER+, PR+ HER-. Finished 4 FEC, mastectomy (left) and 3 Taxotere. Tomorrow is my last Taxotere. PET scan was clear before the surgery. The problem is that my tumur marker CA 15-3 is high. It was 129.9 at the dx, 54 after the surgery and now - after 3 Taxotere is 50.1 I don't know what's going on. Tomorrow I'll meet my onc. but I'm so scared now. Any guesswork ? The range for CA 15-3 according the lab is <=25.
Christina
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Christina, first of all, the range for the tumor markers is a percentile. In other words, they are based on where most women fall. Some women always have their markers slightly high. Mine are typically very low, but one of them only fell all the way down until I started femara. Try not to freak (easier said than done, I know).
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Thank you, Momine! I'll try to calm down.
Christina
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I was diagnosed today with ILC. I am very scared and looking to this group for support answers and people who are in the same situation .....so I don't feel so alone. Getting scanned this week answer surgery is scheduled for next week..dbl mastectomy. I am glad I chose that after reading thins forum. I don't know much about hormone receptivity yet, and I worry it has spread to other parts of my body. I had a normal mammo last year, but after reading this forum I see they could have missed it. Looking for any words of wisdom you all have.
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smrlvr, first of all welcome and I am glad you found us. As you can see many of us chose a double MX. Personally I have no regrets. When they did the pathology report on the supposedly healthy breast, it had LCIS (stage 0) and various pre-cancerous cells. I have not had reconstruction so far. My surgeon asked me to wait 2 years and I have. I am really OK just staying the way I am, and I doubt I will have recon, but you never know.
Remember to breathe. If you feel yourself freaking out too much, ask for some xanax. I never take pills, but I got a xanax script when I was diagnosed and it was a lifesaver. I only too a pill a few times, but it interrupted the freaking out enough to get me back on track. It was also comforting to have the pills within reach and not feel cornered by the fear.
You will start feeling better and more in control when you have some answers and a treatment plan.
Big hugs.
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smrlvr,
I am sorry about your bad news. But I am glad that your scans and surgery date are in near future. This way, you don't have to wait too long to get all the details. After the surgery the pathology report will show the size and the stage and the lymph node involvement. I asked for a PET scan when I was diagnosed. I too had double mastectomy with no resconstruction. These two weeks will be the hardest weeks because of the unknown. Hang in there and be strong.
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Welcome to the club no one wants to join, newcomers. You are in the right place. ILC is a bit different from the more common IDC and often docs don't truly understand that tx options need to be approached differently. I've found so much helpful and protective info on this forum and these boards in general.
Today I am scared. Really, really scared and depressed. It's been nearly 2 years to the day since dx and I'm going to see my oncol for my 3 months checkup day after tomorrow. Every ache and pain has manifested itself and grow into "what is that? Is that the c. back again"? I can't concentrate and can't sleep. I don't know what happened. Last year at the same time I was happy, ecxtatic, elated to be alive and well. Now two years later I feel completely differently.
Claire
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4sewwhat, my story is just like yours. Mammo and US July 2012. IN april 2013 went in for reduction. Did not like look of dense tissue. Had another mammo in Mar 2013 still no ca. PS was supprised and did a biopsy or I wouldn't of had another mammo till later and probably still no ca. How do your expanders feel? I am looking for info on expanders and how they should be looking. Have appt. fri. too see if normal. They think the absorbed the fluid from my body and will need to be drained. I see you also have rads. Will need too stay in touch I am very interested in your outcome and what works to preserve your skin. Many with rads and no one I know had any trouble. You do hear bad stories but the good ones are very common
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Hi Jasper,
Sorry to hear they missed yours too. This lobular stuff is just so sneaky. I just had a prophy MX of the left breast a week ago. Pathology came back clean but final diagnosis was "atypical lobular hyperplasia". That is when the cells start to over multiply amd become not healthy. Mutated so to speak. That is how the thickening starts. Then they can turn to cancer. Would they have turned? Not way to know but boy am I relieved they are gone!
I don't regret two mastectomies one bit. My BS did not even recommend lumpectomy. He said lobular is so sneaky with a lumpectomy there is no way to be sure you didn't leave something behind because the cells can look so close to normal and hide between the good cells. Mine was also grade one and really hard to tell from normal cells. All my scans and tests showed 2-3 nodes. Sure not the 22 they found.
Expanders are not bad at all. Do I want them permanently, no! But they are not bad at all. I will PM you win my contact info. I don't mind sending pics if that will help you. I have never heard of expanders absorbing fluid from the body? That's a new one on me and doesn't make sense. I have held sample expanders in my hand and they are not porous.
I start rads on Monday and saw the PT lady my surgeons sent me to today to get ready for that. She also massages and helps stretch me and monitors the expanders and my progress. I am not worried about rads. I am sure the worst part is going to be the daily drive! My doc and PT lady recommend pure aloe, even said to grind a plant. Also had me get something called Life Flo melatonin cream from amazon. It is similar to something they use in
Germany that we can't get here yet.
I have been blessed with an outstanding team or doctors and I also over educated myself about this crap. The docs are used to my questions by now though. The PS actually complimented me yesterday about being so organized and on top of everything navigating my way through treatment. I assured him this was the first time I have ever been this organized! I am no doctor, but I will be happy to share whatever I have learned and experienced.0 -
I started chemo may 8th. had 3 tx and tumor did not shrink so dr it has too come off. I opted for double. That was on Aug. 12th. Had 4th chemo last Wed. 1 every 3 weeks, 2 left. I woud appreciate a pic. Mine are like an A cup. Only the PS nurse has looked and I will see him Fri. I can't believe they absorb fluid either and have been online constantly looking for info on this. Found there actually is an expander that does do this but not usually used for breast. I am so glad I found you. So nice when someone else has similar experience. You can also just describe your expanders. Would have gone today but they were in surgery. Tomorrow was not an option.
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Did you have drains after surgery? I just PMd you. I am busy for a couple of hours. 4 hungry kids! And hubby is out of town. But I would be happy to talk to you tonight. I am a night owl ago depending on what time zone you are.....
I am not surprised chemo didn't shrink tumor. My onc said it probably wouldn't which is why I had surgery first. Lobular responds well to tamoxifen and the others if it is hormone driven. Do you know your tumor specifics?
I can email or text pics and we can talk0
