Whats your ILC story?
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Pat,
Still sitting here twiddling my thumbs, watching the pollen fall. Hopefully after tomorrows visit to the BS I'll at least be able to drive again.
I'm a bit anxious about the oncotype test results. Waiting is so difficult, it would be nice if it would be like a TV show, where we get test results, treatments, and cures all in half an hour.
Wanda0 -
Good morning or evening (I'm writing from Greece so we have time difference), to all of you,
I had my pathological report last Monday (the waiting was a nightmare). So my diagnosis is "classic ILC tumor mostly of it, with a little of IDC NOS. I'm comfused and I'm trying to finger out my prognosis. It was 1,5 cm and also grade 3 with 7 affected nodes of the 17. I'm a little terrified.
My surgeon and my oncologist were optimistic that is all gone and that is treatable....I'm trying hard to be optimistic and I'm starting chemo (paclitaxel- weekly dose) on Monday.
The other problem is my work. do you think I should take days off ??? will I be able to work? before all that I was thinking to change my job but now it all seems just diffucult...
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NoteRed, hey there! I am also in Greece
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Hello there, I'm very happy to find someone from here. I'm in Athens. I also see you had your surgery in 2011, so it will be helpful to share some info...so glad
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NoteRed, anytime! Feel free to PM me. Are you Greek or an immigrant like me? Would be funny, although unlikely, if we had the same docs.
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just sent you pm Momine :
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Hi everyone. It’s been a few months since Thai thread was active but I’d like to share my story anyways.
I was diagnosed on April 18 of this year with ILC at 33 years old. I went in for my routine gyno exam and my dr keept questioning this tiny spot in my left breast. Fast forward a couple weeks and I got the dreaded call, I could never feel anything abnormal! I thank my lucky stars my dr did. I had a BMX on may 21, opted for that route because I was very small breasted and the mri picked up on another spot in my breast and a small spot we couldn’t biopsy in my right. It was the right choice because the tumor ended up being larger than expected and a lumpectomy would have left me more disfigured than a mastectomy (seriously small boobs here!) I am 3 weeks out from surgery tomorrow, and am healing well. I meet with my MO for the first time Tuesday and I am extremely an anxious! I have had good news (we’ll as good as it can be when dealing with cancer ) up to now. Early stage, 2a, clear margins, 5 negative nodes, and negative genetic testing. I feel like chemo will be recommended just because of my young age, hoping oncotype comes back really l
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SLL101984, welcome to the club no-one wants to join.
It's good you found it when you did. ILC is so slow growing, but very hard to find. It is good that you had clear margins, and it hadn't spread to your nodes.
I can't comment on chemo - here in Australia it's done a bit different to the US. If there's no node involvement, and it's relatively small then chemo isn't recommended.
Good luck with your MO, and please let us know how you go.
Trish
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Oh - and forgot to add - ILC is very slow growing, and doesn't always respond to chemo like the others - IDC, IBC etc. Chemo works best on aggressive, fast growing cancers.
Trish0 -
Trisha- I like that mentality in Australia! I feel like a lot of things in the US is go big or go home, and medical treatments follow that. Of course not all the time but I do think some dr’s o over treat, of course the they could under treat too. That’s the horrible thing when dealing with cancer, you never know for sure. But I think I will definitely keep that information in mind when making a decision.
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Hi all,
Routine mammo last year, neg. Sono showed to areas one in each breast. Biopsied left, benign findings but they recommended excising it out. (radial scar) Meanwhile radiologist thought right side was breast tissue. Fast forward to pre-op for excisional on left breast, my surgeon called an said her team questioned my right breast, where the radiologist did not note on the report the findings. They suggested biopsy day later got the dreaded call. First they told me a 7mm IDC. I opted for a double mastectomy. Didn't want to go through it later on knowing my luck. After surgery pathology showed it was ILC. Don't know how they did not see it at the biopsy.
@SLL...hang in there. Hope your OncoDX comes back nice and low. Let us know
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Ladies....my oncotype score came back at 14!!!! I do not need chemo, the relief is unbelievable! I was so nervous for my appointment I have hives on my face and neck!!
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good news on oncodx. I too had very slow growing tumors, one ilc and one idc with lobular features. But my oncodx was high 34, I think it was skewed due to the high er percentage 95% and no progesterone receptors.
Nodes were clear, cancer was close to surface but no skin involved. Everywhere else in breast all normal tissue that being said I chose to do AI drugs no chemo. Year 7 no cancer.
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Meow13, I love your username, I am a cat lover too. I had a very slow growing ILC with 95% ER and can't remember PR %. I found the lump and the doctor said it had been there quite a while. Fast forward to today where I saw my MO because I, once again, found a very small lump almost in the same location as the first one.
My CA 15-3 was at 20 down from 26 six months ago. I don't think those cancer markers mean much as someone on another board mentioned. My MO says she doesn't think it is a lump. at my first DX my PCP said she thought it was the ridge of my breast tissue! We know how that turned out. So, I think I know my body better than she does. She is ordering an ultrasound and that is what is needed. I pray it isn't anything, but I need to know for sure. She did admit that ILC is very unpredictable and can return. We are in the minority ladies with only 15% of BC are ILC. They really don't know everything about it. But if it is a recurrence, I have gotten it early. I didn't have chemo or rads the first time around because I had no nodes involved. I had a BMX so I wouldn't have to worry, well, at least I gave it a fighting chance. I also have had 6 basil cell skin cancers removed in the last 15 years or so. I have monoclonal gammopathy as well, which is the pre-curser to multiple myeloma, blood plasma cancer. Cancer- the gift that keeps on giving.
Blessings, Robin
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Hello Meow My DX was ILC with a little IDC (mixed adenocarcinoma). but I also had 7 nodes involved so chemo was for sure. Hope everything turns ok for all of
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Hi all,
My story starts with annual 3D mammo in November 2016. There was an irregularity, went the next day for US, next day MRI, and the following Monday biopsy, by Wednesday had my diagnosis. Neither I nor my BS could feel the lump, but as many of you point out ILC is sneaky that way.
I had a double MX and opted not to have reconstruction. No chemo or rads.
My family has been so amazing; and my entire medical team is the "cat's meow". I'm working with a wonderful councilor on my PTSD, fear of reoccurence. This BCO community is also a great part of my support team.
BTW I'm a cat lover too!
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Robin, I hope the ultrasound determines it is b9. I had a scare same spot after an mx. It turned out to be fat necrosis. It was found on mri so they did an mri guided biopsy. The clip is still there and I see it on my mammograms. I asked my onco if I should have a bmx he said no. I was freightened when the MRI found a question on my DIEP side. I asked the radiologist if she saw anything on the right side the real breast. She said no and it looks textbook normal, no questionable spots at all. I was relieved.
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Notered, you made it thru chemo good news for you. That first year is hard. As time goes by you will start to relax. Grade 3 tumors respond to chemo pretty well. I hate reading that hormone fed cancers can come back years later but I don't think the statistics are worth worrying about.
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bump
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hello everyone - great board! I found a lump (GP guessed about 2cm), so my 1st visit was to ultrasound. It came back highly suspicious for malignancy (5cm shadow), so next stop mammo, which found nothing. Then a biopsy which came back benign fibroid tumor, and was corrected within a day to ILC. The ILC was underneath the lump. Then an MRI (i tnink they wanted a guess at the size), but it didn't show anything). 1st lumpectomy surgeon removed a 4.5cm tumour. Margins were not clear, 2nd lumpectomy took out more. Margins not clear, 3rd lumpectomy took out more (big boobs lol). Margins not clear, so off i went to uni mastectomy and immediate DIEP. TUrns out the breast was fully involved, right into the nipple. Interesting to read about the smaller affected breast. my MRI report said it couldn't get a good reading on the left breast because it was bigger...now i wonder if my right breast was smaller because of the ILC. my oncotype was 27 - i think it's because i am PR-. My ER is not really high on the oncotype scale - but it is on the positive side. I did not have chemo or rads. My MO said ILC does not respond well to chemo. I had micro mets in 2/3 nodes, considered node negative. So, i am 2.5 years along, and so far so good. This month noticed a 'heavy', 'full' feeling in my mastectomy side, near the original scar. It is also warm there. maybe slightly pinkish? I can't tell - maybe i'm obsessing. Anyhow, my next appointment with MO is september 26, so i will monitor till then. Wishing everyone the best..
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Cats, funny, ILC is sneaky except I felt the lump and mammo missed it. The radiologist said she couldn’t believe I could feel it. Prause God I did.
I can’t remember if I told you my US was negative! They said it was a sebaceous cyst.
Robin
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I never felt a lump neither did the doctors. Thank Goodness it was detected with mammogram and ultrasound.
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Hey everyone! I am just days out from the official diagnosis. I am still trying to process everything. My story starts with trying on swimsuits. I had noticed my nipple on the right side was looking a little off. It appeared that it was being pulled up and inward. So I was trying on swimsuits and I caught a glimpse in the mirror and saw what I thought looked like a bruise! Nope, it was a shadow from a pretty big indent just above my nipple, I turned to the side and it looked like the front of my breast had been flattened. I then did a self breast exam and found a hardened area at the 1 o'clock area of my breast. So I made the appt with an OB GYN. She did a quick exam, and sent me for an immediate diagnostic mammo and US. So the tech came back in after the ultrasound was done and said "the radiologist wants to do a biopsy" I asked her what they had seen on the images, she showed me two cysts, and said "this area is what you are feeling and what we will biopsy" She then said at least 3 times "but your lymph nodes look really good" I then had the Dr.'s office upload my report to my patient portal. I got a BIRADS 5 score so I figured where this was heading. It just seemed odd to me that no doctor really discussed the results of the US and mammo with me. I honestly did most of my research on this site. Had my biopsy on a Thursday, then got the call on tuesday from the breast center that "cancer cells were present" they had already set me up an appointment to see a breast surgeon for the next morning. That is when she gave me the pathology report. I am terrified, but trust in God. I have an appointment for an MRI on monday. I keep hearing that this type of cancer is "sneaky" and I heard that from the surgeon. I am so far on track for a lumpectomy with whole breast radiation. Thanks to all for listening.
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Hi Dani444
I had the same type diagnosis. Went in for my annual mammogram and got called back for a sonogram. Sonogram showed that there was architechtural distortion and etc etc. Needle core biopsy recommended. Everything seemed to move so fast I could hardly believe it. Next thing I knew the report was being sent to my primary care doctor and my gyn . I was immediately referred to a Breast cancer surgeon and he did the needle core biopsy and said it was very suspicious. Next I had an MRI and it showed more than the original lump. Turned out to be 2.9 MM. They put me on Letrozole immediately for two months and then I had a nipple sparing Mastectomy and immediate implant. I'm 6 months out from my surgery and in December go for a mammogram of my left breast. I don't know why since ILC does not show on Mamo. Last week I was told I have a suspicious spot on my face there needs to be removed by a plastic surgeon because it could be a melanoma. I am a nervous wreck. I've lost 10 lbs since then. Good luck to you. I know how hard these initial stages are. If it appears that I could get this on my left breast I am telling them to just take the breast off. I asked if they could do that when they did the first one but the doctor said no insurance would not cover it unless there was a reason. Well for me living with the nightmare that it could be in the other breast is a good enough reason to take it off. Take care and keep us posted.
Bonnie
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Dani444 and Dakrock, I opted for a BMX for that very reason. I didn’t want to look over my shoulder for the other shoe to drop. Insurance should pay for it. My surgeon recommended BMX because I had ILC. Plus with reconstruction, you get better results. Radiation is so destructive. To the skin and makes reconstruction harder to achieve a good result.
Hang in there and we are here for you.
Robin
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Hiya! I was recently diagnosed with Stage 3 ILC over 6 cm+ in both of my breasts. (The smaller breast had a smaller tumor. The tumor was 4.5 cm in that breast.) I am ER+ PR+ Her2- and grade 2. I'm only 19 years old. (Soon to be 20.) I am quite shocked over my diagnosis. I didn't think BC could happen to someone as young as me, let alone ILC. Here is my ILC story. Back in the beginning ofMarch, I was taking a shower and noticed a thickened area on the upper outer quadrant of my right breast. I always did my BSE's every month. But I shrugged it off at the time since I was taking birth control pills, and I figured it was hormones. I went on with my life until a few weeks later when I woke up in the middle of the night with itchy breasts, I also had horrible pain in both and my armpits swelled and hurt. I took some IBUPROFEN and hoped the pain subsided. Luckily it did. I looked down at my breasts and noticed a pink spot on my aroleas, and redness of the breasts, due to the intense itching. The following morning, everything went away, except for the spots. Silly me went on Dr. Google and looked up "Natural ways to treat dry skin on breast." It had came up with Pagets Diease of the breast and Inflammatory breast cancer. I freaked out and told my mom about it. She examined my breasts but didn't think anything was wrong. She took me to the doctors anyway. My OBGYN gave me a Clinical breast exam and explained to me that breast cancer is very rare at my age. She said that pagets and IBC was even rarer. She prescribed me cream for the itch and told me to use it. I took her advice and used the cream, but I had decided to quit birth control after my pill pack was gone. A few months later in June, I was laying down on my bed and I had decided to give myself another BSE. I found that the hardened area in my breast was still there. I felt around in my other breast and I couldnt feel anything like that. I decided to call my PCP, since I was due for my yearly check up anyway. She felt around and didn't think there was anything wrong since I was young. But she referred me to get a ultrasound. The following couple of weeks I went to the ultrasound and everything came back normal. I decided to just forget about it... until the very beginning of August. I had given myself yet another BSE and noticed indentation/dimpling under both aroleas. I felt another hard area in my left breast. I felt that something wasn't right. I went back to my doctor. Because of my age, and lack of family history, I had to fight to get my MRI. At the end of August I had spots lighting up on both breasts. The Radiologist wanted to Biopsy them, just in case. She told me "it's probably nothing." At tthe beginning of September, I get a call telling me that it was positive for ILC.
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Wow good for you for being persistent in checking things out. It seems now days we have to be our own doctors. I too went for mammograms yearly and was always told I had dense breast and would be called back for a sonogram. Sonograms always looked the same dense breast they said. This year I had a lump in my right breast. They called me in and said I needed a biopsy. Sure enough I had ILC. I am six months out from my mastectomy and reconstruction. I am worried about my left breast now because they was dense also. In addition I have just been told I need a biopsy for a mark on my face. Could very well be melanoma they said. I will have that removed the 24th of September. I asked my oncologist if it could be from the ILC. She said I can't say it is not possible but it would be rare but has happened. We will find out when they do the biopsy. Hang in there. I only wish I had insisted they remove the left breast at the same time. Good luck and keep us posted.
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RyansMomma, I'm so sorry that you have to go through this at your age, cancer really sucks, big time!
I'm so glad you persisted and got someone to listen to you. I don't have any wise words for you, but know you are in my thoughts, and I'm sending you very warm and gentle ((((hugs)))
xoxo
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I'll chime in. I felt a lump in early June, 2018. My mom has had bc twice (1994/2015), and I have the dense, fibrous breasts, so I'm religious about the mammos and self exams. Had just had a clear mammo in Nov 2017. The day I went to to OB their mammo machine was down, so the OB sent me to the diagnostic center next door and ordered an ultrasound at the same time on the left, so I wouldn't have to make a second trip if there was something suspicious. Thank God she did. US found a 5-6 mm mass and biopsy confirmed ILC.
Annual mammograms were always clear, except for a biopsy in 2014 which came back benign. Lo and behold, however, the ILC was between the two clips from the 2014 and 2018 biopsies. They may have just missed what was probably LCIS in 2014. MRI confirmed no other suspicious areas and size of 6-7 mm.
After lumpectomy, the actual tumor removed 7/27 was 12 mm. In addition, there is LCIS in one margin and ALH in two others. I had mastopexy/reduction on both breasts in the same procedure as my lumpectomy. The tissue from the reduction in the left breast had LCIS, the tissue from the right breast was clear. For the first time in my life I have perky breasts, though this isn't how I would have chosen to have them.
I developed a MASSIVE hematoma 2 1/2 weeks after surgery (and after my follow up appointments with both the oncology surgeon and the plastic surgeon) that filled my chest from my clavicle to my ribs below my breast on the non-cancer side. It was terrifying as it filled up in the 15 min it took to get to the ER. Back to the OR to get all that mess removed. My PS said the chances of it happening were infinitesimal.
Right now I'm trying to decide between continuing the bct/rads/tamoxifen (I'm perimenopausal) path or mastectomy with prepectoral reconstruction. I'm not a good candidate for any kind of flap reconstruction (not enough tissue), so my surgeon recommended I make the decision about mastectomy prior to radiation. She felt double mastectomy was medical overkill, but said she'd support it. The good news is that the plastic surgeon said the lift/reduction was a great step as I now have the perfect skin envelopes for NSM and prepectoral implants. That was the best news I've had in 2018.
My gut was that BCT/rads isn't enough, but double mastectomy feels too extreme to me also. One thing I've learned so far is that having sexually functioning breast(s) are important to me. So when it occurred to me I could have a unilateral mastectomy, take the dreaded tamoxifen, and still have one breast with sensation, it felt right in my gut. I saw two oncologists in one day: one supported that plan after I explained why I believed it was the right choice for me, the other insisted I go with double if I chose mastectomy, even though there is no evidence of atypia on the right. The second did NOT like that I questioned the BCT/rads plan.
One thing I realized after talking with both of them is that their goals and my goals are different. They are focused on keeping the BC contained in my breasts. As long as it doesn't metastasize, and they can keep removing it, they consider it curable. My goal is to not have another BC. They keep giving my 10 year survival recurrence numbers which is not nearly long enough-I won't even be retired at 59. I have a two inch binder full of medical journal research. I get that BCT/rads and mastectomy have the same overall survival outcome-but BCT/rads closes the door on reconstruction for me. And I'm not willing to close that door yet.
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Bonnie-I don't know what insurance you have, but I have been working with a case manager with my insurer. I wanted to ensure that NSM and prepectoral implants would be covered as they are newer procedures. They reviewed my case, and basically the answer I got back was that they would cover whatever I chose as long as it was supported by my doctors. The National Cancer Guidelines clearly state that prophylactic double mastectomy is a treatment option for ILC. I don't think what your doctor said about no insurer covering it is correct.
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