ILC - Old Lady Cancer?
Comments
-
65 at Dx and hope to live to be an old lady
0 -
Young? Diagnosed at 52, premenopausal with dense breasts. Right breast cancer ~3.5 cm total so probably there for a while since slow growing. The MRI and US prior to BMX did not reveal the cancer in my left breast.
mommacat4, it will get better. The most difficult time (for scary thoughts) is before treatment. Take someone with you to your appointments if possible. For me, it was difficult to listen closely because my mind was racing - not always to good places. If you have someone to take notes, it helps when you are making decisions to be able to refer back to them.
0 -
Diagnosed at 43. I just turned 44 and am recovering from surgery. I will probably start chemo next week. I'm still waiting to get a PET scan. My tumor was 8 cm and was detected on my very first mammogram. They initially told me it was 1cm and stage 1. The MRI told us differently. I asked my doctor how long it may have been there but she wouldn't give me a definitive answer. She did say it was slow growing. I can't help but think this may have been different had I went for a mammogram as soon as I turned 40. Another thing to obsess about....
I don't feel old. I have a 3 year old son who keeps me very busy.
I hate cancer
0 -
Hi Kimberli43, I was similar to you about a year ago only I was a year older than you. Diagnosed at 44, first mammogram ever and they thought it was only 1 cm at ultrasound. I too obsess about the fact that if I'd only gone for my first baseline mammogram at 40 it probably wouldn't have been as bad. Just a few days after my 40th birthday a very close friend of mine was diagnosed and I always said that after her experience I'd go straight away and get that mammogram. I procrastinated about it and life got busy and I put it at the back of my mind for a while. Then a few years later another friend of mine asked me if I wanted to go with her and we'd have one done together and here I am. The main thing is we can't keep beating ourselves up over it. It is what it is and the main thing is that its been found and is still very treatable at your stage. The treatments can be tough but doable and you'll get plenty of support from the ladies on this forum. Hang in there sweetie, it does get better. I'm now a year out, my hair has come back, I've lost 15kg and apart from the hot flashes from Tamoxifen I feel healthier than ever. Yes, the fear is still there but I've chosen to have a positive outlook as we can't let cancer take away all our todays. Good luck with everything. Sending healing thoughts your way.
0 -
I already posted my age in here (45). I had my bilateral mastectomy on October 24th. What was believed to be a 5 cm tumor turned out to be 7.2 cm and a grade 2. It did go to my lymph nodes. Doc removed 15 total (counting the 2 sentinel nodes) and 3 tested positive for cancer. The cancer was in my right breast but I chose double mastectomy to be proactive. Glad I did because the doc said the path report showed left breast looked fine but had changes starting that could have been suggestive of cancer beginning in it. So that one got stopped in it's tracks.
ILC is sneaky. It goes undetected until it forms a thickening lump or in my case, lump with dimpling and nipple retraction. I had done monthly self-exams and thought I felt something but being a heavy, dense breasted woman made that hard to distinguish from a lump to a "lump" that was just dense tissue. Had it not been for feeling like something was biting me under the arm and me looking in the mirror on September 12th, I would not have seen the dimpling which ultimately sent me to the dr. and then mammograms, etc.
I start chemo December 1st even though the bone scan and CT scans of my chest, abdomen, and pelvic came back clear. Doc says that one of the lymph node walls had been breached by the cancer and there is a possibility that there are cancer cell(s) floating in my body looking for a place to cause trouble.
0 -
Good luck with it all Laura. I too only had dimpling on my left breast. I saw it about 6 months before I had my mammogram. I just brushed it off thinking it was only cellulite as I had extremely large breast (E cup), boy was I wrong. That's the problem with ILC, it's so sneaky. There are so many ladies on this forum that had regular mammograms that showed up nothing then suddenly out of the blue they find a large mass. Sometimes ultrasound and mammogram don't even pick it up until it gets to a certain size. That's why I've given up on wondering what could have happened if I had gone for my first mammogram earlier.
0 -
Dx with ILC in the left breast in May 2014, one month before my 57th birthday. After follow-up MRI was found to have LCIS in the right breast. Told by my surgeon that is is very rare to have two different types of cancer in two different breast at the same time. That the less severe cancer was probably there first. Said I would have needed a double mastectomy anyway with just the LCIS diagnosis, because it is a sign that cancer may grow in the other breast.
Never felt like an old lady until the cancer treatment (specifically the Arimidex). Although very minimal cancer was found in my sentinel node,the next three were clear. Was blessed not to have to have chemotherapy because my Oncotype DX score was 16. Have a lot of side effects from the Arimidex, feel 20 years older than I did a year ago. Know this is a great medication that studies show is very helpful in keeping the cancer from returning. So I will try to stick with it.
I don't think it is helpful to wonder what would have happened if you had gotten your mammogram earlier. I had one at 40 (baseline) and one every year after that. mine still wasn't caught as soon as it should have been. Don't blame yourself, it is what it is.
Be good to yourself and remember that healing takes time. Hugs to all.
0 -
Hello ladies, don't beat yourself up for not getting your mammogram on a scheduled routine. I had my mammogram every year since I turned 40. I am 44 now. My lump was never detected by mammogram or ultrasound. I found it myself. It was very large to my thinking. I ended up having a total of 5 mammograms, 4 ultrasounds an MRI with contrast just this year. They finally found it with the contrast.
I just had a bi-lateral mastectomy on November 17th 2014. The pathology report said the tumor was 7.5cm. And it has spread into the lymph nodes. I saw my oncologist today, he gave me some options of treatment to think about and some more testing to schedule but I am stage 3 cancer. Which that alone is scary.
I guses I just have to take it one day at a time
Right now I trying to heal from the mastectomy surgery. Which is not happening fast enough in my opinion. Lol.
Take it easy with God's speed!
0 -
Diagnosed Stage III something-or-other just after my 55th birthday, natural menopause occurred at 51. I've been having annual mammograms since I was 30 due to family history (two sisters, one 36, the other 41 at diagnosis -- no bad genes. My maternal grandmother also diagnosed but at a much older age).
With ILC being so hard to see with mammography and ultrasound -- my surgeon said it's generally only seen via MRI -- I can't help but wonder when it started and how long it's been branching out. Positive in 16 of 19 lymph nodes scooped out - surely it started well before I turned 55.
0 -
Everyone on here has asked the question of when did it start and how. Some develop slowly and others rapidly and diagnostic tests are becoming better with more sensitive equipment. There is not much to be gained by looking back, the important aspect to concentrate on now is looking at the short term future treatments, so you can have those sorted out for a life after BC.
We wish you all the best
The Mods
0 -
And then there are those of us like me who knew, went to the Doctor, did everything right, had a mammogram etc, and they wouldn't listen, didn't believe me, made me feel like a hypochondriac. I think we need to have better training for the medical professionals regarding detecting Lobular. I knew I had it, why didn't anyone listen???
0 -
Fizzdon52 I hear you. I had to fight for an MRI after I found my lump. I was told "we don't allow patients to choose their diagnostic screening methods" when they tried to send me for a mammo. I had a bundle of palpable lumps on the outside third of my breast but was told not to be concerned about them, just focus on the one solid palpable lump at the top of my breast. After an MRI and four ultrasounds it turned out they were all ILC. Went from lumpectomy recommendation to mastectomy....sigh...
Yes, something should be done. My sister just received a clear mammo with a notice that she has dense breasts but no further advice or recommendation. Because of my dx I told her to ask for an ultrasound and MRI. Yes, more follow up needs to be done especially when there is a history or HRT (which I have minimal exposure to) and dense breasts which I do have.
Moderator, I can honestly say if it weren't for the women posting their concerns about past observations symptoms, hindsight and concerns I would never have felt empowered enough to push for the MRI. I think looking back is fine as long as it's constructive and empowers us to look forward. I also think that it's difficult to have confidence in upcoming treatments when detection for some of us was so difficult and stressful. I've learned to be more proactive, trust my instincts and to question everything.
0 -
In general, the moderators do a good job, but I, too, find no harm in looking back and agree with First Wild Signs and her post. For goodness sake, we are grown women, not children. I appreciate the topic of discussion.
I was 53 at dx. All literature I read says ilc is diagnosed most often in women over 60. I had annual mammos. I felt a thickening six days after my mammo. The same day, the mammo center called to tell me they found an asymmetry on the mammo. I told them I felt a lump...it was thick andabout 2 1/2 inches long. They said, oh, the mammo does not show a lump. Well, I said, it IS there.
It had to be there awhile undetected. Maybe for years, in which case I would have been younger that 50 when it started. Maybe the science behind ilc is flawed. Maybe they only think it is a disease of older women because it can remain undetected for so long.
The lump was in the six o clock position. I have large breasts, about a 36d. Imo, the mammo pressure caused that lump to finally 'pop' out and make itself known. I have read that mammos don't do that, but you'll never convince me.
0 -
I was diagnosed a few months ago at age 50, premenopause. The doctor saw microcalcifications on a routine mammogram and followed up with more mammograms, ultrasound and finally a biopsy. I hadn't noticed anything, although I've always been bad about remembering to do self-exams. It had been about 3 years since my last mammogram.
I had a Mirena IUD for a few years before diagnosis and the cancer is ER+/PR+, with a high percentage for progesterone, so I suspect that had some influence. I see that there have been some other threads about the MIrena here as well.
0 -
Hi lilmouse, and welcome to our Community. Were you diagnosed with ILC? You can use the Search feature to find more discussions on the Mirena as well, but here are a few to start with:
Mirena IUD correlation with breast cancer
Thinking of you All,
The Mods
0 -
Thanks for the kind welcome! Yes, I was diagnosed with ILC, stage 1A, in September. I reread my post and realized that wasn't really clear---time to go figure out how to do one of those informative sig lines! I included the bit about the Mirena because I wonder if that had anything to do with my developing breast cancer at this point in my life. It's possible I would have gotten it anyway, but the progesterone probably helped it along. There is no way to know for sure so I try not to dwell on it, but it is discouraging to wonder if this mess could have been avoided.
0 -
Diagnosed at 46 with ILC (previously misdiagnosed with benign lump at age 43). My ILC is ER, PR and HER2 positive, which seems to be rare and very scary.
I am trying not to be so angry about it all. Just finished chemo, 12 more months of Herceptin - now looking forward to surgery in a week or so.
0 -
I was 42 when diagnosed with stage two, nodes clear
0 -
I was DX at 51 pre-mennopausal. I was in fantastic shape playing tennis 5 days a week. I had bi-lat mast 5 days before my 52nd birthday.
I wonder if the norm age is dropping?
0 -
I was 57 when diagnosed.
vbishop, your oncologist needs to be updated. I think most docs would disagree that ILC is "old lady cancer" and that your daughter does not have to worry about breast cancer. Maybe you should show him this thread! There are so many misperceptions about ILC. One thing is clear - it cannot be detected well on ANY kind of imaging, including MRIs. Plus you can't feel it.
Moderators, your comment about not looking back is a little off-putting. I thought the purpose of these threads were to share our stories, discuss our feelings and fears, whatever they may be. Sometimes it's hard not to look back and wonder, especially for those whose comments here have made it clear that our concerns often go ignored by their doctors. The fact that the medical community refuses to deal with the obvious problems that occur over and over again with diagnosing lobular cancer is very concerning. Maybe if we sued our practitioners after our cancer goes undetected for years and years by their ineffective tests, they might sit up and take notice. It's every hard to get doctors to realize that lobular cancer IS different. Something needs to change.
I had annual mammograms every year since I was 40. None of them showed anything concerning and I still have all my letters saying I was good to go. My history includes cysts and dense breasts. Thank goodness the laws are changing requiring women to be notified of this so they can be on guard and demand further testing (see http://www.areyoudense.org/about/). Testing is just part of the problem, though. I believe lobular cancer needs to be approached differently when considering treatment. I had a BS who insisted that mastectomy was over treatment. It may be for some women with other kinds of cancer, but not with lobular, as many women's stories here so well illustrate how ILC lurks undetected.
I wholeheartedly agree with First_Wild's comment:
"I also think that it's difficult to have confidence in upcoming treatments when detection for some of us was so difficult and stressful. I've learned to be more proactive, trust my instincts and to question everything."
So Yes, ladies, for now until we have better care - Always Question Everything!!
0 -
Bc101 - I most certainly felt my lump. I could grab it between my thumb and finger. I pushed for a year before finally getting my dx.
0 -
I also felt my lump, although it felt more like a small semi soft sausage. But what do you do when no-one believes you???
0 -
I was 45 when I was dx, stage 2b. 3 months after my yearly Mamo I noticed some dimpling on my left breast, close to my areola. I thought it was cellulite because I had never heard that dimpling is one of the signs of breast cancer. I thought, great you hit your mid forties and you get cellulite on your boobs too.....I didn't think to even touch it. I noticed in another 3 months that the dimpled area was a slightly bigger, I reached up to have a feel and whamo....the rest is history. Mine was slow growing and my doctors said it had been there for 6-8 years. I've gotten yearly mamos since my 20's because I had Lymphoma when I was a teen. ILC is sneaky and it is NOT old lady cancer!
0 -
I guess what I meant was...you can't feel it until it's large and even then it's different. It's not a lump - it's more like a sheet. I have always had dense breasts with cysts, so I didn't do SBE's. I didn't discover my tumor until it was quite large, in fact I found it quite by accident. I had a dream about my best friend who died of breast cancer over 20 years ago. In the dream, she tried to speak to me, then I woke up, touched my breast and - whamo! It was like a hardened mass, and when I looked in the mirror my nipple was inverted, so I knew right away something was wrong.
Just curious...did most of you do SBE's, or did you have physical exams where your doctor did breast exams?
0 -
I did SBE's in the shower which is where I first felt mine. I didn't panic because it didn't feel like a pea sized lump which is what I thought breast cancer felt like. As it was still there a couple months later I went to the Doctor, the first time.
0 -
Yeah, the things you learn....so sorry to hear that no one believed you, fizzdon. That is so sad, but I'm glad you were diagnosed at stage 2 and not 3 or 4.
My one year cancer free anniversary is coming up next week. It's been a rough road, but I'm just so grateful to have found it "early."
srp - I wish you all the best with your surgery!
0 -
I had a history of cysts in my right breast and had an unrelated rash that, I think, caused very slight swelling around my armpit and breast. I had had similar swelling/firmness years ago. It went away but I mentioned to PCP a few weeks later at annual physical. She send me for ultrasound and diagnostic mamo " just to make sure" and it showed up on the ultrasound. The BS later said it showed up faintly on the diagnostic mamo but they were specifically looking for it and I have small breasts. Was 1.5cm. The tech doing the ultrasound managed to feel something when all the gel was on but I really couldn't and neither could PCP.
0 -
I am 54 and did SBEs but found mine as I was turning my car into the driveway. It felt like a pea on the side of my right breast. The mammogram showed a 1.9 cm DCIS on the top of my breast, but I was adamant that I felt it on the side of my breast. After several biopsies, an ultrasound and an MRI the doctor decided to do a lumpectomy. After the contrast was shot in the right breast it was found that the breast was 75% full of cancer and needed to be removed. So I had more testing and as bad luck would have it, I had both DCIS and a 7 cm ILC mass in rightie and the pre cancer cells in the left. The surgeon thought the ILC had been in that breast for probably 7-8 years.
0 -
bc101, I agree with most everything you said. Except that you can't feel it. I felt mine but I used to put my phone in my bra on my right side in the upper part of my bra where the strap and the breast came together. I thought because I was large that it was just my breast tissue being distorted from the heat of my phone. So I moved my phone to the left breast side and would massage the right. The lump never went away. Usually had my mammogram in January so I would know it was done for the year. I had gallbladder surgery in January of last year so my mammogram was postponed. I was dealing with my ailing mother so it was April before I did my mammogram. I got a letter in the mail saying all was clear and good. I wanted a second opinion so I went to my pcp. He agreed about a second opinion. He sent me to a breast Surgeon. He requested MRI with contrast and 3D mammogram and ultrasounds. None of these tests showed my ILC until they added the contrast to the MRI. Then it only showed that the contrast hit something and flowed around it. The bs requested a biopsy. That's when they diagnosed me with ILC. I had no TX before my bmx. My tumor was 7.5cm and was not detected by conventional methods. So I agree that something needs to be done to get "early detection"
thank you for letting me vent.
0 -
I, too, had yearly mammos. I had a routine check up at the gynecologist in October of 2010 who did a breast exam then and felt nothing suspicious. My mammo was in December of 2010. Six days later, while lying in bed waking up, I reached under my pajama top to scratch my midriff and the top of my hand rubbed against the mass in the left breast, which was in the six o'clock position. I can still recall the life changing chill that went thru me as I shot up out of bed.
0
