Just diagnosed with ILC
Hello everyone,
I was diagnosed with a 5 cm ILC in July. They said there is no way to avoid mastectomy because of the size and because my left breast is already compromised from a lumpectomy last year for a 7cm LCIS. They also seem to be pretty sure that I will need rads but wont know about chemo till after surgery which is on august 20th. I met with the plastic surgeon yesterday and it all suddenly became so real. I walked out of that consult and it felt like everything just stood still and I couldn't stop crying...still tearing up as I write. I have never been so scared in my life ! They will be checking lymph nodes. I have been searching for info on this cancer but Im having a hard time finding much info because it only accounts for 10% of breast cancers. Fortunately I live in Boston and we have the best hospitals and docs..I chose Dana Farber. I have so many questions that I don't know where to begin. I have never felt so overwhelmed...
Comments
-
Hi
Welcome--I am so sorry you have to join us- but you are in good hands. I had ILC almost 6 years ago-- lumpectomy, chemo and radiation--- also treated at Dana Faber (surgery at MGH)... ILC seems to be a slow growing one--- there is the ILC group here-- I think it may be more like 25% of breast cancers--but I do remember an onc at MGH telling me that it was slow growing---
They do the sentinel node biopsy often during the surgery-- and you can ask for the oncotype test to see if chemo makes sense for you. I did do chemo because my oncotype was in the intermediate range--- but I know my onc was a huge fan of the hormonal drugs which I was on for 5 years...
You are in the best possible place for treatment--the Farber is great--- I really felt cared for there and still do, although I only go once a year now. Do you have anyone to go to these meetings with you? I found taking a notebook and a digital voice recorder to each meeting and always brought someone with me.
It is hard, no denying, but you are on top of it... following up, getting things scheduled, meeting with dr. I found taking ativan helped when I was anxious and I did see a therapist during the process who helped me handle my anxiety around this. It will pass, you are just in the middle of it right now. Come back here often and people will help you.
-
Hi momand2kids,Thank you for replying..they will be doing my surg at B&W. My family really isn't one that I can go to for support although my boyfriend is my main support. I don't know how I would get thru this without him ! Sometimes I worry if its too much for him, but he gets very irritated when I worry about that, cant help it. Have you read that ILC can go to GI tract and ovaries ? I have only been with DF/BW for 1 week or so and I love them !! I was at BMC...I think they dropped the ball last year which is how I ended up going to DF. How long did you have to do chemo/rads ? What kind of side effects did you go thru ? Any side effects that your having even now ?
-
ganzgirl--good advice from momand2kids about bringing someone else with you, along with a notebook and perhaps a tape recorder. When we are already overwhelmed and then the docs get talking so fast, it helps to have another set of ears. Did they put you on tamoxifen initially when you were diagnosed with the LCIS last year? (it may not have made any difference, as the ILC may have already been there and just not found; I was just wondering as I have LCIS (I took tamox for 5 years and now have been on evista for about 5 years, and do high risk surveillance, but you never know what the future will bring). y mom had ILC many years ago, did lumpectomy, radiation and tamox and is a survivor of over 27 years without a recurrence. It is thought to be slower growing, but can be "sneaky" and hard to find on imaging. Praying you don't have to do chemo.
Anne
-
Hi
I did not have any lymph node involvement and so I assumed, after all the treatment, that I was just fine. And I have been ever since. I don't read much about it because I don't expect it to recur-- I was really treated.... I had 4 rounds of A/C chemo, 33 radiation and 5 years of hormonal drugs. Like everyone else, lost my hair, but I did work through chemo and radiation My kids were 7 and 12 at the time.. it was unpleasant, but doable. They have lots of things to help people through this. the oncotype test told me that I had about a 94% chance of this not coming back. I figure those are good odds....
There are so many things that you can worry about, but I would say just stay focused on what is in front of you--the surgery then the decisions about treatment. As soon as you have a plan, this will become easier. And remember, most people do not have a recurrence or a spread---- and there is no reason you cannot be one of them.
I don't have any side effects now, other than some vaginal dryness that is a result of being pushed into menopause by the chemo--and that is generally treated easily. In general, I feel great. I did just have surgery for thyroid (no connection to the bc), but feel even better now because my thyroid was giving me trouble. So, overall, I feel that I was very fortunate and I don't spend too much time worrying about it-and you will get there too.
Remember, you are followed closely-- so I figure that even if something does happen, it will be found very early, as my bc was, and we will figure it out. My follow up now is 1 oncology visit a year, 1 mammogram, an MRI every other year, annual visit with my primary, with my gyn, dermatologist, and now two with endocrinologist. So lots of people are looking at me.
I think the hardest thing is not to project. Taking things one step at a time is the best way, yet so hard. We just want it to be over. But we need time to rest and heal. I had my lumpectomy on a Tuesday and went back to work on a Monday-- I was not ready--so with this thyroid thing, I took extra time and I am so glad I did. Our bodies really need time to heal, really.
I also saw a therapist during the bc time. this was very helpful, as I could say things to her that I could not say to others. I have great family and friend and colleague support, but I did not tell lots of people about the bc... so the therapist was such a great help. Ask your doc to help you find one. Whatever you need to do for yourself during this time, you should do. I tried to keep exercising (I ran) and that helped me mentally. I am a journal writer so I wrote alot during that time.... tried to minimize stress in my life, all that stuff. Meditation. Whatever you need.
I am glad your boyfriend is there for you-- are there other people who can help you as well? My h was great- but I bet sometime he needed a break.... so with this thyroid stuff, which is low level, I have enlisted the help of some friends so as to give him a break.
It is going to be fine- you just have to go through the steps. they really know what they are doing. I found them accessible and able to answer my questions. I highly recommend that you refrain from researching on google and just ask them the questions that you have... or pose them on this board. But always remember, your particular data is yours. You can have two people with the exact same diagnosis, but there are different treatments, outcomes,etc. The best judge of all of that is your team. They have all of your information. I found just focusing on me and not trying to compare myself to others was the most helpful. I did not get distracted or scared by others' situations. You are not a statistic-you are you with your own particular medical history, of which bc will be part of by the end of August. Take good care of yourself and trust in your team-sounds like you have picked a good one.
-
Thank you momand2kids for the encouraging words
awb...no they would not put me on tamoxafin last year because I am a smoker and the risk was to high. I DID go to my primary and got an rx for Chantix..started that to help quit but the side effects were horrible ! I couldn't go to the bathroom for 6 days ( if ya know what I mean lol) I was naseaus everyday and got really bad headaches. Now Im on the patch. Got to quit before the mastectomy ! Im pretty sure this was there last year when I was dx with LCIS...but they didn't find it until I had the first breast mri in June. This is the scariest thing Ive ever dealt with. I am 41 years old (40 last year when I found out I had lcis). The thing I am weirded out by is the statistics of ILC. Everything Ive read has said that women get ILC or lcis after 60 years old. I am only 41 !
I cant help but wonder if they diagnosed me correctly ?? -
ganz,
Sorry you need to be here, it all sucks in my humble opinion.
Lots of us feel the same way, how could they miss this. My lobular was found one year ago, the lymph nodes full of cancer, twice the size of the primary tumor, bursting out & matted together...stage 3, scary shit.
My guess, obviously no Dr., is that your primary tumor grew large & fast, and your nodes will be clean. They must have biopsied them last year. Prognosis is less threatening if nodes are benign.
I have read lots of info on lobular. Most data says 10% of breast cancer. I am impressed they did a MRI, my center does not do them, even being stage 3. Try to take one day at a time, do stuff that helps you relax, whatever that may be. Keep posting, asking ?, we get it, living it.
-
Yes holeinone I agree, it does suck ! They didn't check my lymph nodes last year. I wonder why ?
-
Hi
i was 48 at dx-- so I don't think it is limited to people over 60--- but I do remember one of the onc at MGH telling me that it was likely that it had been there for a long time and grew very slowly----- and was missed on the mammogram 6 months before--- so now I have regular mri's as well as mammograms...
There does not seem to be rhyme or reason--- I think the focus forward is what might be helpful-- working on the plan with your docs, working on the smoking. You could spend alot of time trying to figure out "why" but the fact is that this if I have learned anything, it is that these things are so random.... and that "everyone has something".... doesn't make this any easier, but again, if there is any way you can put your mind at ease, it will make things a little better during this time between now and the surgery.
It is hard to believe but this will eventually be in your rear view mirror.... and your every thought will not be about bc... honestly...
-
I cant wait for this nightmare to be over momand2kids, I feel like Im going crazy since this whirlwind began. I have a positive attitude...just very scared, as everyone on this awesome site is or was
Every site Ive been to, including NCI ACA and even well known hospital and teaching scholl sites such as DF and Harvard...all say that this is more common in geriatric population...Im not just making things up as I go
-
Big hugs to you.
I do hope you can find some peace--I do know how hard it is... I remember it well and wish there was something I could do to help you. Please keep us posted
all the best
-
if you join the lobular section on here you will find many of us are way below the geriatric!! I think it is more to do with menopausal hormone uphea val myself
-
Lily65 thank you...how do I "join" ? Ive been in that forum but I didn't know you could join. You think its something to do with menapuase ? But Im not in menopause...I had a hysterectomy over 10 years ago but I still have my ovaries. I see that you have the same thing I do..even the same size tumor ! Did you have to have chemo ?? That's the thing I think Im the most afraid of..
-
Hi
it really is not related to menopause-- there are many different types of breast cancer-ILC just happens to be one. It is entirely possible you will not need chemo... you will want to ask your onc or surgeon to have the oncotype test done post surgery--that will help you in making a chemo decision. Everyone does not need chemo, everyone does not choose chemo. You get to choose-- but it is easier to make an evidence based decision about it when you have the oncotype score and other information about your particular situation.... but you won't have that information until you have the pathology from your surgery--
A good question to ask your doctors as you are going through this-- "If I was your sister, what would you recommend I do?"
Hang in there-- this is really the hardest part....
-
ganzgirl---I was diagnosed with LCIS at 46, my mom with ILC at 57. Everything I've read about LCIS says when it's found is usually in the 40's; DCIS in the 50's; invasive bc is more commonly found after age 60. I wish you the best on quitting smoking.
anne
-
ILC IS the breast cancer type most likely to be hormone positive. Many of us were diagnosed at same stage of life, peri menopause or menopause, and some of us had hysterectomies a few years prior, I kept my ovaries too. Bodily change is also a systemic stressor in the sense that it requires adjustment in all bodily functions......cancer seems to occur at times of imbalance
-
hello ganzgirl! What can i say ? Sorry for you have to be here and thanks all of the girls to make this community for as to fall on in gratest time of need. I was diagnosed resently still coming to terms. I am 36..... well.. yep.... singl mother of 8 year old boy... hope all goes well for you. My cancer was 4.2 cm and.. lumpectomy... spread to one lymph node 0.7 cm and no chemo was advised... scary staff... was crying today at work again.. sucks..
-
i am 36 and was very balanced and fit! Where did tnis stuff come from have no idia!
-
evgeniya that's great that you didn't need chemo !! I hoe I don't need it either...just the thought of it makes me cry. Im just want it done and over with..and it's only just the beginning for me. This site is definetly helpful and encouraging tho -
hi ganzgirl - I was diagnosed with ILC last December. I was 43 at diagnosis. My tumor was very large at 8 cm. I did chemo first which shrunk the tumor to 3 cm. I had a UMX in June (no node involvement) and am now halfway thru radiation. I am so sorry you have joined us here. No matter what your treatment plan turns out to be you will get through this. I never thought I could get through chemo but I did. I have 2 kids, 12 and 11, and they never saw me really sick. I did lose my hair but it's growing back now and it already seems like a distant memory. We are here for you.
I do agree with bringing a note taker or recording your early appointments. There will be so much information. I found myself referring back to my notes often in the beginning.
-
Hi ganzgirl I was diagnosed with ILC in October last year, scary stuff. Aged 44 at the time and pre menopausal. What can I say, the whole thing sucks. There is so little information around about this type of cancer and the appropriate treatments for it. Some studies say that chemo is ineffective and others say it isn't, hard to know which one is right. I guess you have to go with what you and the doctors think is right for you at the time. My doctor's advice to me was to go with chemo because I had positive nodes, 1.5 cm of cells in 2 nodes, I had 4 rounds of AC but was told I could stop at any time if I couldn't deal with the SE's. I managed to make it to 4 finding the last one probably the worst with nausea, high temps etc. The treatments can be hard but as the other ladies have stated they are doable. Once you've finished treatment, things seem to start feeling a little better. Hope it all goes well for you. -
hello there! Its friday how everybody is doing?
-
hi how are you today?
-
Yes it is Friday ! Im always good on a Friday
-
I have a brand new appreciation for TGIF. Just finished rad #17 of 28. So happy for the 2 day break from rads each Friday brings
-
I was diagnosed in May with what the testing showed was a small 1.2 cm lump in my right breast. After my lumpectomy, the doctor informed me that due to the "blue dye" they injected into the right breast that she was pretty sure there was a mass "of significant proportion" in that breast. Actually it was a 6+ cm mass in the right breast, which was never picked up on the mammogram, MRI or sonogram. The best part was that there were no lymph nodes involved (how lucky can I get). After several more tests on my left breast, the doctor suggested a double mastectomy, due to the fact that the left breast had pre-cancer cells in there also. I was never so scared in all my 54 years of life!!! Surgery was on August 4 and the pathology report shows clean and clear margins and my oncologists suggests only 4 rounds of chemo as a precautionary measure. I still have lots of questions and still cry at the drop of a hat, but I am going to get through this and you will too. Remember to take it one day at a time, one step at a time.
-
Hello Nomatterwhat! You are 54! Which makes your first 54 years cancer free! Lucky! I am 36 wich i wish i l make it to 54 wich is 18 years away! And you had it easy worry free! You are lucky! Your kids probably all grown up and strong and guess what? Now thay strong for you to! My son is 8 and i have to be strong for bouth. Enyway welcome darling to our circle. I am sure that if we face this crup togethef it will be easier and not as scary.
-
Bthw how your sergery went and after sergery reab? How r you feeling? Did you have drain remooved? Did you get in touch with local support group? Keep us posted. You have a good prognoses. I hope you well.
-
Ganzagirl, I was also diagnosed with ILC last year at age 42. Mine was kind of mix of things. Through the biopsy they found DCIS and IDC. I went for a lumpectomy and came out with unclear margins as well as some ILC. Knowing I had to go back in for clear margins, I decided for the DMX since ILC is so sneaky and hard to find. My initial research also came up with the fact that it's mostly found in older women or post menapause. My own personal theory is that since it's so sneaky and slow growing it's often hard to detect and not found until it's much bigger. Chemo was not recommended for me because of clear nodes and low onco score. I was just thankful to get it all out. I'm now on Tamoxifen with blood work from the oncologist every 3 months. I know you are my August surgery sister and you are going to do great with your surgery. Hang tight. It's all going to work out.
Xxoo
Susan
-
Iwannaseeyoubebrave....I just cant wait to wake up from this nightmare ! How did your surg go..how are you feeling ?
-
Ganzgirl, surgery went great yesterday. It was a piece of cake. I feel so good that I have to remind myself that I just had surgery. I take my first shower today after surgery so it will be my big unveiling. I'm going to try and keep an open mind. ;-)
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team