Thought I was IDC now ILC - now what?
I've been waiting to post for a couple of weeks but felt I needed to wait until I had seen my surgeon for my pathology report. I saw her today. I was initially diagnosed with IDC on May 11th (biopsy) and had surgery on the 9th of June. The pathology report today indicated it is ILC and I was so thrown off in my meeting with my surgeon I didn't ask anything meaningful while I was face to face with her. It is so interesting to read so many of your stories because they are so much more familiar to me than the ones of the women who have had a IDC diagnosis. I found my "lump - solid feeling tissue" two years ago, a couple inches below my collar bone right on the edge of my breast tissue 12:00. I was seen immediately for a mammogram and although the area was too far up from the breast tissue that fits into the machine I asked them to feel and look at the lump. The technician asked me if I had been sick and wondered if it was a swollen gland but was told by her and the radiologist that there was nothing to worry about - although they biopsied two other suspicious areas and both came back as normal. During this process and after 10 years of mammograms I was informed I had dense breasts and had fibrocystic disease. No surprise both my mom and older sister do too. My mom was 6 years NED (breast cancer) - no idea what kind when she was diagnosed with primary lung cancer with mets to liver and died in 2005. So at that visit I was told I should have ultrasounds with my mammogram yearly and did that in my yearly mammogram in November 2009. I again told them I still had this lump and was told they were watching something else (likely scar tissue from a breast reduction) and to return in 6 months. I did that in April and after another biopsy I again asked why I still had this lump I had found two years earlier and insisted they ultrasound it. They biopsied it at the same time though the radiologist insisted it was either pannicultitis or fat necrosis and that I had nothing to worry about. He described it as a thickened area that had probably been a cyst that had got inflamed and then hardened??? Well he was wrong. CANCER ugggg. I was so mad when I found out and have had a difficult time getting past the fact I had asked them about it every time I was seen over the past two years. I had a lumpectomy because the area is so far away from my breast it would have been a totally different scar and seemed like overkill to go further. My surgeon said I was early stage and the 10 year outcomes for either were the same. So here I am - waiting to be seen by the BC Cancer centre to find out what my treatment will be. My BC surgeon says likely radiation and maybe tamoxifin? But that was when I was IDC and now that I am ILC will that change? I wonder if I should have made a different decision given the difference between the two cancer and had a double mastectomy. I feel worried about this cancer cause it seems less pervasive, sneaky, and am getting way ahead of myself about worries for the future etc - do any of you wonderful wise women have any information about this type of cancer. I realize I am quite fortunate that it is what it is but I continue to feel sick about all of this. I am trying very hard to focus on today, stay present, I'm ok now etc. but I really feel alone.
Comments
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Hi Bailey,
I don't know if this helps you, but my diagnosis in was changed in the other direction - I was ILC and then they changed it to IDC based on further pathology tests. I'm Stage III. My surgeon and oncologist both said that the recommended treatment (ACx4 2 weekly, then Taxolx12 weekly, then surgery (either lumpectomy or masectomy, depending on the chmo outcomes) then radiation, then tamoxifen, stay the same, even though the diagnosis has changed. the only difference they told me about is that ILC has more likelyhood of being in both breasts and is harder to detect. But the treatment is the same.Hope this helps, and that you find someone else in your situation who can help put your mind at rest.
stay stong,
Latte
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Hi Bailey, I have stage 2 ILC. ILC is harder to diagnose but other than that, the prognosis is just as good if not better than IDC. Look up Jan 2005 Journal of Clinical Oncology report by M.Christofanelli et al on ILC. Christofanelli is at MD Anderson and is considered the foremost authority on ILC. Briefly, ILC's tend to be more receptive to hormone therapy. Your doctor is probably right, just radiation and Tamoxiphen. Even with my 2.2 cm tumour, I did not have chemo, only arimidex. You might consider getting the Oncotype DX to see what your rate of recurrence will be. Many early stage ILC's score low numbers ( low recurrence ) on the onco dx.
I actually thought in this whole dismal fight with BC, being diagnosed with ILC was a positive thing: the least of all evils.
Be well!
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Hi Bailey, Looks like your diagnosis matches mine almost exactly. As Tokyo said, ILC isn't the worst diagnosis. We're usually strongly hormone positive which makes Tamoxifen our first line of defense. I'm doing chemo mostly because the fact that I had a previous surgery which cut through the tumor (making it debatable whether the cancer got into my bloodstream). But many early stage ILC patients have radiation, lumpectomies, and tamoxifen and end up with very low chances of recurrence.
I also had a palpable lump (it felt like a pebble) and lumpectomy (2 of them, due to margins that weren't clear) and will do radiation and tamoxifen after chemo is over.
I know how you're feeling--I was there a couple of months ago. big hugs.
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HI,
I was originally dx as IDC in October of 2006 and was told it was poorly differentiated which translated into Grade 3. However, after my lumpectomy and SNB followed by the OncotypeDX it was changed to ILC, Stage 1 and my Grade was 2. The Oncotype came back a small 9 so I did 34 radiation treatments followed by Tamoxifen for 5 years. I guess the biopsy can be misleading and you sometimes don't get the right dx until after surgery. I wish you the best in your treatments.
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well,
for what it is worth-- I had ILC, lumpectomy, chemo, rads and now AI and lupron (I was premenopausal).
While ILC is sneaky, it is also often slow growing--- my risk going forward is calculated at around 8 or 9% for recurrence... and, after my treatment, my breast surgeon, who I absolutely adore told me that the vast majority of women never see this again.... so I am just planning to be in that vast majority. I also remember what she said to me on the first day I met her--- when I asked her what I could telll my mother she said "you tell her that if you had to get bc, this is the best kind to have".....
You will be fine--- come back often and we can help you through it
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I am so grateful for your responses to my posts - it was a long night last night thinking about all the possibilities. I know the radiation is really important for me as the tumor really had no margin on the underside due to it being right up against the muscle etc on my chest wall - BS said there was very little breast tissue to take - but that the radiation would take care of that. This is so scary - I also have 29 year old twin daughters and worry they may have this in their future. I have been told that in order to have the OncotypeDX I will have to pay for it - somewhere between $3000.00 - $5000.00. I think I will do it if it is recommended once i see the BC cancer Doctors. What do you all think? There are so many amazing women on this site. I am blown away by the courage and strength - you are so inspiring - thank-you for the support.
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Hi Bailey, ask your doctor if they are still recruiting people for TailorX which is the current clinical trial for stage 1 and 2 BC patients. If you qualify, your oncotype dx fees are waived. I also have a 29 year old daughter who is getting married very soon. Since, my grandmother, my aunt on my dad's side and my sis had BC, I did the BRC1 & 2 test, as well. Thank God that came back negative.
Hang in there....we all are!
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I'm just re-reading all of your responses to my post and seem to keep coming back to do that. I can't figure out why I am so anxious. After my surgery I was really confident and since meeting with my surgeon I can't seem to settle down to that post surgery relief. Reading what you all wrote really calms me down. I wish I could have you all move in for awhile. I am feeling like I did before the surgery - like the cancer is still in my body. I think it's because I am imagining the lobular cancer as having little arms and like they are poking around my chest wall moving in again. I feel ridiculous - almost like I am consciously creating more cancer. I swear I feel so neurotic and actually feel like I'm being quite pathetic. I am also feeling a lot if tightness in the area of my surgery and near my sentinel node area - my surgeon said I had a bit of fluid collecting and it seems to be tighter today - am 2 weeks out from surgery. Is that something anyone else experienced post surgery? Is there something I can do to help move the fluid - ice or something? I have been asked to return for an ultrasound because my breast MRI report identified an area in my breast that they reported looked like "blood vessels" my surgeon wasn't concerned but ordered an ultrasound to follow-up. I got my appointment today and I have to wait until July 12th. I feel like this is never going to end.
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Hi Bailey, it is normal to have fluid accumulating around your surgical sites, creating tightness. I was having fluid aspirated every week or so for at least 6 weeks. It's painless and your surgeon can do it. Have you started your gentle arm lifts and stretches? Movement should help. It's been 3 months after my mastectomy and even with yoga every other day, I still have some tightness. It's getting better though!
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Hi, Bailey!
My cancer location was similar to yours - at 11 o'clock on the left breast, outside of the area they normally compress and scan with mammography. I found it and thought perhaps it was a cyst, as it changed size and sensitivity along with my menstrual cycle. My gynecologist thought it was a rib, but suggested I have a diagnostic mammogram. That tissue didn't fit in that particular machine, so we used the sonogram and it was BiRads4 and required a biopsy...
I had a lumpectomy, because it didn't even seem like breast tissue way up there, so why take off breasts? (I did toy with the bilateral idea briefly, because everyone likes to freak you out about ILC and I live in Texas, one of the "more surgery is better" hotbeds in our country in the south.) Very close margins, because the tumor was smooshed in between my chest muscle and skin. I had an Oncotype DX score of 11, so I had radiation and now am being Tamoxified. Did you have an MRI prior to surgery? They gave me one to see if there was anything else in there, which there apparently wasn't.
Insurance will often pay for the Oncotype DX test if you make a scene. They save a LOT of money if you don't do chemo. If your tumor is highly er/pr positive, you'll likely have a low-ish score and Tamoxifen or an AI will be the preferred treatment...
It's creepy to have had a globule of evil on your body and totally icky to have surgery. You don't have a concrete plan yet, so it's natural to feel a bit discombobulated. You will feel MUCH better once you meet with an oncologist and formulate a treatment plan. You are NOT alone - that's the magic of bc.org (my daughter calls it "booby facebook"). We were or are where you are, and we get it in a way that people in your "real life" might not! It's an adjustment - I think we all walk around thinking we'll live forever or just fall asleep one day at 99 years of age and that'll be it. This diagnosis changes that only in that it's a reality check that we're mortal - but with an early-stage diagnosis like yours (ours), all that's different is that you know ONE thing that MIGHT get you. Odds are in your favor that although you'll enjoy a festival of fun treatments, you'll be here a loooong time.
Recovering from even "just" a lumpectomy is a pain. Make sure you do whatever stretches and movements your surgeon recommends. Nerves will return at some point and feel really weird - soft cotton shirts felt like sandpaper for about a month or so somewhere in there. My tumor was on my lefthand side, so when I drive, the seatbelt crosses right over it. I had a little pillow from the surgeon's office that I used for perhaps six months to keep the seatbelt from pressing on me there, and even now the seatbelt can still be annoying.
Good luck to you, and I'm glad you found bc.org!
Coleen
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Thanks Coleen and TokyoSing and all of you who responded to me. I am going back to have an ultrasound to follow-up with an area of concern on my breast MRI. My surgeon feels it's nothing and I am trying to focus on her good instincts so far to get myself through to July 12th. I have been assigned and have an appointment to meet the radiation oncologist on the 19th of July. I had a good cry today and feel some relief. It really helps to hear your story Coleen and I am really trying to pull it together. It really helps to have women who have gone through this because I know no one who has had breast cancer. We have provincial health care in Canada and the Oncotype test is not paid for - I am considering paying for it myself or joining the study TokyoSing mentioned if it is offered to me. Thanks again to both of you for your suggestions and all of you for sharing your stories of diagnosis - they really calm me down.
Sonia
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Hi, Sonia -
I hope your "area of concern" on the MRI turns out to be nothingness. MRI's are famous for lighting up for all sorts of things that turn out to be nothing, while at the same time they're allegedly the "gold standard" for finding ILC...
I think there's a Canadian Survivor forum on here somewhere - perhaps that might be a good spot to learn what you might be able to do about the Oncotype DX issue...
Crying is helpful. I also really got into reading, because so much of this can be left to us as patients to figure out - I particularly like Dr. Susan Love's The Breast Book. Hideously detailed, but it really lays things out.
Coleen
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I hope so too. It came up before my surgery and my surgeon didn't seem concerned enough to cancel surgery. I recognize it must be done if I am to stop imagining something there. I think I've decided should there be more in the breast that I would just have a double mastectomy. Mostly, just need to chill out until I know something. Sometimes I am able to really see myself finished treatment and moving forward into the rest of a really long and healthy life - I can have moments when I feel very positive about my future being free of cancer. I read some of the amazing posts by women who have so much more on their plate than me and it inspires me to be stronger. I read "The Breast Book" and it was really helpful but scary too. Today I picked up a magazine at the BC Cancer Centre that had 10 reasons for optimism in the battle against cancer and the first one gave me lots of hope - Cancer is moving towards becoming a chronic but not fatal, disease. Drugs are being developed that enable people to manage their cancer and continue to lead productive lives. I am holding on to that right now. Are you feeling well Coleen? Where do you find yourself now - other than be a wonderful support person for others?
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Hi Bailey, I'm in BC too. I wrote a longer reply but it seems to have disappeared. Anyway I wanted to give you a link to the BCCA guidelines deciding treatments It mention the TailoRx trial to get the Oncotype DX.
In your case if chemo hasn't already been recommended then you most likely don't need it. The reason to have the test is to see if suggested chemo would not be of any benefit over and above five years of hormone therapy
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Bailey - your question made me think - how AM I feeling? I had a friend ask me "how is your cancer?" I said, "I hope it's dead and gone, thanks for asking!"
I'm actually pretty darn good. I have some annoying side effects from Tamoxifen, but they're mostly just things I would've started to experience soon anyway, and I'm happy that there's something I can take and that it's obviously having an effect on my body. Summer is hard due to hot flashes, but I have ALWAYS hated being hot in the summer. Everything related to surgery and radiation is all healed up and just fine - I have a sort of "divot" where they removed tissue (the entry scar is farther down on my chest), but I don't think many people notice it. Some days I wish I'd really worked some trashy cleavage before the surgery, but we never know, do we?
I would say that I am adjusting well to my "new normal." I have friends in my life who have experienced things that put this in perspective. One developed appendix-based cancer two years before my breast cancer diagnosis. Virtually untreatable, as it's only diagnosed once it has seriously spread and compromised many abdominal systems. She passed away after 18 months and left FOUR children, 13, twin 15 year olds, and a 17 year old. Another friend has Lyme disease, which totally has destroyed her quality of life. Physicians argue about whether it even exists and how to treat it. Some think 2 weeks of antibiotics and you're good as new, some think years of antibiotics, etc. It's a nightmare. Makes my little divot and my perimenopause-enhancing medication look like a walk in the park. She actually said to me that she'd RATHER have breast cancer, and frankly, I agree it's a better deal. Everyone has something to deal with, and there are worse things out there.
I know that I personally hate surprises and I firmly believe that knowledge is power. We as women owe it to each other to help out when we can and share our many common experiences. So I try to put in my 2 cents here and there when it seems it might make a difference, just as women did that for me two years ago when I crossed over to CancerLand from HealthyVille. I have NO boundaries, so if you ever have any questions about anything, just ask and I'll tell it like it is from my perspective...
Thanks for asking!
Coleen
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Thanks for responding Coleen. It's nice you have such a positive perspective and I appreciate hearing how it feels to be two years down the road I am destined to follow you on . It's so strange being here in this treatment land - wishing it was over but not wanting to wish time away. So much about my life has been perfect. I've had such blessings and feel bad about feeling bad. My closest friend has lived with chronic illness her entire adult life - she has been so sick at times I wasn't certain she would live. She is currently battling sarcoidosis which is a horrendous illness and can barely manage a few words without coughing. She is one of the most beautiful, hopeful, positive people you could ever be blessed to know - I don't think she has ever complained about her condition. I had a wonderful day today, I am blessed with good friends, a wonderful man and great kids. I thank you for sharing with me, for stopping by to connect and for giving me encouragement. You are appreciated tonight by me - thank-you. Enjoy the weekend. Sonia
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Hi Bailey,
I would strongly recommend the OncoTypeDX test. The cost is $3,000 and in the states, most insurance will cover some or all of the cost. Not sure in Vancouver but they have interest free payment schedules available and you can apply for payment assistance. If you are node negative, ask you doctor for their contact information and talk with them about your options. Mine was done over a year ago and I don't have their information anymore.
Roseann
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I have my first appointment with the radiation oncologist on July 19th. I am making a list of questions to ask and the OncoType test is one of the things I will enquire about. I am nervous waiting and wondering what my treatment will be. I ultimately can't even guess until I know if there is something they will identify through the ultrasound on the 12th. It's crazy reading one of the threads about how ineffective ultrasounds and mammograms are with dense breast tissue and that MRI's are the gold standard for finding breast cancer and now I am waiting for an ultrasound to follow-up on an MRI. I feel like you need all three test to be completely certain they are seeing everything. Sometimes I wonder if just have a double mastectomy is the way to go. I'm so tired of waiting.
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Hi Bailey
There is one difference between ICD and ILC that hasn't been mentioned in this discussion which is relevant. Statistically ILC has a slightly higher chance of occurring in your other breast. IDC has about a 15% chance of occurring in your other breast in your lifetime, whereas for ILC it's about 20%
< Dixon, Anderson, Page 'ILC - an evaluation of incidence and consequence of bilateral disease' British Journal of Surgery>
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Hi Everyone,
I was called to go into the Cancer Centre sooner then I expected and I had my first meeting with my radiologist oncologist today. She had my pathology report redone and feels confident with my grade 1 tumor that radiation and tamoxifen for 2.5 and then an AI for 2.5 years will be sufficient treatment. She also seemed quite certain the ultrasound scheduled for the 12th was just to reassure the doctors who missed my tumor for two years they were doing the appropriate follow-up and her take on the MRI was that it was nothing to worry about - especially given it didn't pick up or identify my cancerous tumor that is now out of my body. The radiation schedule in Canada appears to be different than in the US with 16 treatments plus 4 boosts to the tumor site in my case. I asked her about getting an OncoType test and she said she would arrange it for me but felt I would be a low number. She also said I could join the Taylor X study and get it done for free. I know from reading other women's posts about this on the board that they can come back higher than the Doctor expected. I feel conflicted because of other people's testing higher than their doctors expected but my gut is saying given the research about er+++ ILC not being as responsive to chemotherapy and highly responsive to hormone therapy to trust my instincts and just do the rads and hormones. Have any of you thoughts about this and do you have any knowledge about the difference in radiation treatments for Canadians and Americans?
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Hi Bailey I had the 16 treatment course of radiation in May - definitely the way to go!
There was a study published in the NEJM in February this year comparing the results of a short course with the longer course after 12 years followup. Both were equally effective, but the shorter course was of course much more convenient. BCO covered the story here:
http://www.breastcancer.org/treatment/radiation/new_research/20100210b.jsp
I was expecting when you said your first appointment at BCCA was with the radiation oncologist that this meant you didn't need chemo. The only reason it was suggested for me was that I had a positive node, and even then it was only after lot of reading and soul searching that I agreed to go through with it. (The BCCA librarian was very helpful in sending me the full text copies of any studies I requested). It might have been only one node, but the cancer tumour in that one node was 1.5 cm, only slightly smaller than the tumour in my breast.
Anyway now that I'm finished chemo and radiation I will be on Armidex for the next five years.
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Right. I was told that fact on the way to surgery. That's why I had a bilateral mastectomy despite having .7 and 1.7mm of ILC in right breast. The 'clean' breast was full of atypical cells so I made the right decision after all.
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I did QiGong after PT and that helped me regain range of motion. Have since moved on to Tai Chi as well. Worked better for me than yoga or stretching class. Am grateful to nurse who recommended.
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