Team ILC Warriors
Comments
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Antonia, hoping there is an easy, non-cancerous reason for the thickening.
I had chemo but a mild form of CMF. I had three cancerous nodes with an Oncotype of 13 but I always questioned its calculation since it says right on there that it's for node-negative cases. I feel good about my decision and glad it's over!0 -
Hollyboo, I am not sure where this meme comes from about ILC not responding. It is simply not true. In the neo-adjuvant setting, you are LESS likely to achieve a complete pathological response in ILC than in IDC.
However, this doesn't mean that the cancer doesn't respond to the chemo. I had neo-adjuvant chemo (FEC) and my huge tumor (somewhere above 5cm, we never got straight if it was 5, 6, 7 or 8) shrunk down to not being palpable after 2 or 3 chemo treatments. At surgery there was still some left, so we did not achieve a complete response, but it still made a difference and helped stop the cancer in its tracks.
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Antonia, keep us posted. I am getting scanned in a few weeks and my anxiety is already through the roof, so I feel for you.
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Antonio, heres praying for good results.
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My onc implied a similar thing re ILC and chemo. But it still made a 6% reduction in likelihood of reoccurrence for my example Add that to 18% or so that the tamoxifen helps so I would grab a 23-24% reduction in likelihood of reoccurrence every time All the little things add up ......then again we could be very very unlucky. But at least I know I threw the whole armoury at it first time around.
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Lynne, based on your post, looks like today is your surgery? Just wanted to send you best wishes and healing vibes. You have a fantastic attitude that will serve you well! :-)
xo --0 -
My onc said that chemo is effective for ILC. Lets hope she is right.
Did some reading on stomach mets in ILC and they are supposed to be hard to diagnose. I will be going crazy until Friday. I will let you know how it goes and thanks for support and prayers.0 -
Nocompromises voiced my own decision about chemo: I wanted every percentage (even if it was just a few points) to my advantage. I knew, absolutely knew my body would handle it and that I would have no lasting negative side effects. I don't know how I knew that--I just knew I'd be okay with 5 months of chemo and 6 weeks rads. I was. Sometimes intuition is our only tool, and you can only access that by eliminating some of the high emotion that comes with a dx, meaning I took some time after lumpectomy to talk to 2 oncologists and do my research. When I found out there were supplements to take and things I could do to minimize side effects that had worked on lots of ladies on these discussion boards, I was ready.
Claire
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Antonia! Prayers and hugs to you. The waiting is the worst. Hoping for a boring outcome to the test!
Gemini--thanks for thinking of me! Prophy left MX was this morning. I just got home and climbed into my own comfy bed with Chic-Fil-A soup ! Little sleepy and hurts a tad, but it's over and I can check something else off my Kick Cancer's Ass and put it at the curb To Do list today!
Claire--Oh my gosh I have spent so much at the healthfood/supplement store. But it has worked wonders!,
Happy Hump Day everyone! Here's to never having to wer a bra again unless it's pretty and I just want to :0)
Lynne0 -
Lynne,
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I was diagnosed very early due to my insistence on an MRI. Nothing suspicious on my mammo, nothing palpable, no family history. I just got tired of reading those "no masses seen, but lesions may be obscured by extremely dense breast tissue" mammo reports year after year. Surprise! Five suspicious areas to be biopsied, including one ILC and one DCIS. More areas of both ADH and early lobular found at pathology so I'm at peace with my decision for BMX.
My MO used both the Adjuvent Online (a statistical database) and Oncotype (which she did at my request). I had clean nodes. My Oncotype was on that blasted borderline of 18. I weighed my options and opted out of chemo. I was really undecided after the Oncotype DX, but my MO played along with my "What would you do if you were me?" game and said she felt the side effects of chemo wouldn't be worth the very small increase in protection from chemo and she wouldn't do it. But, she was supportive with my decision either way.
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Lynne, thanks for checking in! Rest up in your cozy bed and stay comfortable! Hope you heal up quickly. :-)
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Lynn, Im amazed you came online today. Try to get some rest and let your body heal.
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Thanks ladies! Rest? Not sure 4 kids are home now so homework then feeding time at zoo! Still more rest than the hospital. Food is edible and smells better here too!! Husband is on carpool and HW detail. Had to wake him from his nap for that. Made me feel bad! Really think this is worse for them than us. Watching from the helpless sidelines sucks too :0(
Little sore which I didn't have at all last time on cancer side. Don't understand that. it wasn't as extensive this time. Had a surgical resident today with my doc so I wonder who did what? Don't need pain meds though.
Phone sex voice is in full swing too from the anesthesia! Husband appreciates that!
Also on a different note....I shampooed last night. 5 weeks PFC and I have babies!m. Tiny little wispiness all over my head where my hair had thinned. I was so happy I cried!0 -
Lynne. Did they send you home same day ????? Well done congrats on ticking it off your list !!!
Antonia. Good luck for Friday - here's to definately hoping its a waste of time
My bone scan showed some hot spots at base of my spine but apparently it is early arthritis in coxxyx area and nothing sinister
TinaT. My path report showed ILC, DCIS and ADH too in the right breast a right mix really ....
I am def favoring an MRI at next scan just to REALLY make sure the left is clear !! BS says chances are extremely low (1%) BUT .... Easy for HIM to say - I don't have dense breasts ( to my knowledge ) - so that'll be a new piece of the puzzle in jan 14
Good luck Momine whe yr scan is due. Try not to stress too much .. You can't change anything. So try not to think about it till then - easier said than done i know - its like the waiting at initial Dx all over again
Hope everyone has a great week0 -
I wanted to come home! They make people sick at hospitals! Plus more rest here than on that rack at the hospital! The food is edible and it smells better here too!
Great news that Your bone scan was only arthritis! Wishing the same for Antonia!
I have read and my docs have said that lobular shows up best on MRI. I asked my onc why the huge tumor barely showed on e PET and he said that they are not the best at showing primary tumor or node involvement, but with ILC the PET is good at showing distant crap. Hope I never find that out!0 -
Lynne, I just read your blog. Love your attitude!
Do try to get your rest. If there's one thing I remember to lecture others about from my last surgery in January, it's to be mindful of the bowels. ;-) Pain meds, at least for me, are sooo constipating! So drink plenty of fluids and take something like colace to keep things moving along.
Hope you have a speedy recovery! Take good care!
hugs,
-- Gem.0 -
ILC isn't called the "sneaky cancer" for nothing! I started about Christmas time noticing changes in my nipple (same breast I had had lumpectomy and rads for 16 years ago - tubual and DCIS). Dr. said they didn't feel lumps. Annual exam in March - again mentioned nipple changes and stated they were getting worse. Dr. said she didn't feel anything - just changes from prevoius surgery. June - nipple seemed even more inverted, so make appt. w/ my family doc. He said he didn't feel anything, but would schedule diagnostic mammogram just to be sure. Diagnostic mammogram showed NOTHING!!! Radiologist did an ultrasound because of my persistence that my nipple had changed. Two small areas showed up (3 mm and 6 mm at 3:00 and 9:00). Bxs showed ILC. MRI scheduled and showed 6-cm tumor (my whole breast lit up!). Surgery revealed ILC 7-cm tumor with LCIS throughout and a small area of DCIS. Asked breast surgeon if HE felt it, and his answer was NO. No nodes as they were all taken with my first surgery, so am Nx.
Also, the chest wall comments are interesting. My posterior margin was positive. Since it was right at chest wall, BS said no more surgery (would have to remove part of chest wall) and oncologist disagreed. He shouldn't have told me because now I worry a tad!
I am in agreement with doing everything I can to get rid of this! I have one more DD AC (YAY!) and then Taxol (with Herceptin for HER+). Am debating at this point (and in discussion w/ oncologist) benefits of 12 doses weekly versus 4 DD. If anyone has any input, please share! I am all for using EVERYTHING in the arsenal we have access to so, as Lynne so eloquently put it, we can "Kick Cancer's Ass and Put it at the Curb."
Lynne, you're my new hero!!! I completely understand how hard it is to have others doing all the things that you normally do, especially your husband. I feel guilty, but that still doesn't give me the energy to do it.
With my first bout of breast cancer, my children were 15, 13, 10, and 9 (severely retarded). Praying that God gives you the grace and strength that you need to not only fight the cancer, but to rest. Antonia, am praying!!!
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Wow...reading all of these stories is so humbling....I am thinking of all of you brave ladies this evening!
I have kind of a trivial question, though. I see many of you list tumor size as one tumor. They had originally thought I had a 6cm tumor, but pathology showed two tumors 2cm and 3cm. So, when I talk about my tumor size, do I add them together to have a 5cm tumor or do I talk about the two of them seperately? How would that work? Thanks so much! xxoo
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I have 3 tumors and the biggest was 2.6 so thats what I use.
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Joellelee--my tumor was single focus and right at 6 cm. over 5 cm changes your staging. I needed up IIIc because of size and those 22 damn nodes.
I was told they stage by what has the largest measurement. You having two spots made it Multifocal. Also I bet it is why you are stage 2b/3a and then your nodes factor in.
My doc did say he preferred 22 nodes and a slow growing non aggressive tumor to a mean, angry tumor and less nodes! My Ki-67 was 9 % on biopsy and dropped to 7 after 7 weeks tamoxifen. It made a difference in my tumor in just 7 weeks so I will not hesitate to go back on it!
Hope that helps some?
Lynne0 -
I hate this cancer. For five years I did mammograms, sonograms, biopsies of cysts and all along the cancer was growing. Now, the same is with finding mets.
I hope it is something trivial, actually, anything but mets.
Thanks for prayers, Martie. Lynne, get well soon.0 -
hi there everyone, well i went in on 8/22 as scheduled had iv in all set to go and last min my bs says she understands my concerns about coming back on the left side so if i want she would do double mx on 8/27. i really did not want to reschedule at this point i just wanted it to be over but like she said 5 more days to wait as much as not wanting to go home my husband and plastic surgeon everyone saying that i should do both. just would have been nice if we had this conversation before the surgery date, but everytime had a question about doing a double the nurse would call me back not the surgeon. so i went home got a phone call the next day from nurse doing the scheduling that i would have to wait until the 3rd of sept. I could not believe had to wait another week but i made i through, and so glad i did. had the surgery on the 3rd. surgery took 10.5 hours, honesly the 1st 2nd day were pretty bad but pain was managed with morphine pump. came home with 6 drains, just had last 2 removed yesterday. the reconstuction looks really good. stomach never was this flat, still alot of bruising and i'm waiting for nipples. but my advise to anybody out there do not go through nurses if possible talk to surgeon directly. so glad i had both done if for nothing else but piece of mind. I was told 3 lymp nodes were negative at time of surgery but 2 weeks later said one did come back positive. i see oncologist on fri to see what the plan will be. so grateful found this forum very helpful thanks to everyone.
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Antonia. You are so right, I hate this crap too.. You are in my thought and prayers for NO mets! Your test is Thursday (today) right?
Thanks for the good wishes! I am a little sore but still no pain meds. And man do I hate these drains!!!
Hi Lor6027--sorry you are on this rollercoaster ride with us. You should think about asking your onc to have an Oncotype test run. It is for aggression and recurrence rates. It is just a nice piece of the puzzle to have. Just my two cents!,
Gemini. Thanks for the tips! I have the softeners covered!, big bottle from SAMs that I got for first surgery and chemo! Also have the probiotics on board because of antibiotics. Yeast is far worse in my book than waiting to poop :0)0 -
Ah, that's right ... You would have antibiotics after your MX. I wasn't given any antibiotics post-surgery after my lumpectomy surgeries -- now that I think of it, though, I wonder if any were given via IV. But you are smart to load up on the probiotics to keep those damn yeast critters away!
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Can I just say that I called 911 and rode in an ambulance to emergency because I was so constipated after surgery??? It felt like I was trying to pass a piano!!! It was horrible. My pain meds from surgery and anti-nausea meds did a # on me. I was taking Miralax and Docusate, too. Constipation can be serious. I agree that yeast infections suck, too.
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I had a similar experience to you as well 4sewhat. My ILC didn't show up on anything not even the MRI and it was huge. (They were able to finally see it on PET, but it was diffuse uptake and after biopsy so they knew what they were looking for.) Always chalked up to dense tissue. Infuriating! Glad you are doing well after surgery! Continued good health!
Kelli
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Hi ladies, I have not posted here for awhile as I have been on the chemo boards, I started on 8/15 and I am having my 3rd A/C as we speak. Well waiting for Pre-med's then comes Big Red followed by Cytoxin. This thread is near and dear to my heart, it was the 1st thread I found for ILC after my Dx, It is a sneaky beast I also like referring to it as The Mischevious Maurader. Hope everyone is having a good day and God Bless us all.
Shary🍂0 -
Go get 'Em GavinsGrandma. Kick butt and take names! And talk like a pirate too :0)
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Thank you4sewwhat, I will, Happy talk like a pirate day to everyone😏
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