ILC - Old Lady Cancer?
Comments
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bc101, that is fascinating that your mind and body and your friend were all communicating to you through a dream.
The mass I felt in the breast felt long and thick, not round. It was between 5 and 7 cm long. To me, it felt like a lumpy scar that healed all bumpy and thick underneath the skin.
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I was diagnosed ILC yesterday and I'm 39 years old. I don't yet consider myself an old lady (ha ha ha!)
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Sorry to hear that, Bella, but welcome to our NAOLC - not an old lady club, lol!
Thanks for the comment, TheDivineMrsM. I owe my life to my BFF. Wish she were here to help celebrate my cancer-free-ness.
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Bella, welcome, but sorry to hear of your DX. How much do they know so far?
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bella, sorry to hear about your diagnosis. Here you will find a ton of support from ladies who are and have been where you are now and where you are going. Don't hesitate to ask anything or vent or cry. We all have! We all understand
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Bella, Welcome to the group nobody wants to join. There are some amazing ladies on this board who have "been there done that". As Mommacat has said, don't hesitate to ask, we are here to help. When you find out more, please let us know.
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I was diagnosed at 68- I too had my yearly mammograms -I was quite upset to discover that this kind of tumor is not detected by a mammo- what then is the point, I asked. I was told mammos detect other breast cancers so you still need to have them- I was determined that I was done with them and like you all I don't understand why there is not some other method of testing that will detect this type- My surgeon told me that normally this kind of tumor is not detected until it is large enough to be felt on self exam or seen in the mirror-- which was the case with mine.
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I will chime in, I believe that doctor was ludicrous. What an inane, inappropriate statement to make to a patient and her family. I had just turned 50 when I was diagnosed, but was 48 when I was misdiagnosed and my surgeon told me that the tumor (which measured 14.5 cm) had been growing for years. Maybe started when I was 45? Is that old? Seems middle-aged to me! Humph.
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I'm 41 and diagnosed on 12/9. I don't feel like an old lady.
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I, like many others here, had regular mammos that came back "clear".
I was dx'd when I was 44 and premenopausal. I found a few lumps in my armpit and complained about them to my gyno. She recommended a diagnostic mammo. During that mammo, they biopsied the largest lump (enlarged lymphnodes)and found cancer. Next up was an MRI that saw the breast lump that couldn't be felt palpably.
My MO said it was probably growing for at least 5 years. I have no family history of cancer. It was until surgery that they determined size, along with a tiny bit of IDC.
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Maybe they call it Old Lady Cancer because they take so ridiculously long to find it despite the fact that a lot of us know there is something going on with our breasts but they just don't listen. Or maybe it's because the medication we have to go on makes us feel like Old Ladies???
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It's just awful to think of having cancer growing inside us for that long of a time! I almost hate to ask my docs how long they think mine was growing. It's mind boggling to think of all the missed opportunities to find and treat it earlier. What I hate most of all is that when you're first diagnosed - in my case at least - they tell you it's good because it's ER/PR positive. Then you find out later that ILC has some very scary characteristics, like it can appear anywhere and tends to go roaming around vs. local recurrence. Plus with lobular, we have less of a chance of long term survival than other types.
I've been fortunate in that the meds I'm on do not affect me too much, well, except the loss of memory, insomnia and mood swings, lol! I know I should be grateful it was found fairly early for ILC, but it's still very scary. I tell every woman I care for about my experience in the hopes they never have to face this.
BTW, I am celebrating my one year cancer-free anniversary! Woot!!
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dstar - wow, 14.5 cm. That is just amazing. Did you have chemo before surgery? If so, did your tumor shrink a lot before surgery? I see you just had surgery last month. How are you doing?
Superfoob - love your username and profile pic! Just curious, were you diagnosed at stage IV?
I love to hear from all you survivors - but so sorry we are here on this thread for this reason
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bc101,
It's great that you spoke about this being a scary cancer. My onc described it as ninja cancer, meaning it can travel anywhere in your body and transform and mutate to that area and start growing there. For example most cancer that starts out in warm dark areas say, the breast can not survive in the lungs because they are cold and windy. This ILC can mutate to the environment in the lungs and start growing. And it's not as easily detectable as other types of cancer because it doesn't have the calcium build up that most other cancers have.
It is known as old lady cancer because usually by the time it is diagnosed the patient is beyond 65 years old. I personally don't even consider that to be old. But they are finding it much earlier now because some doctors are listening to their patients.
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BC101, No chemo before surgery. I said I wanted a mastectomy now, not chemo and a lumpectomy (possibly) later. I wanted it out. Luckily, I am tall so the cancer stayed within my breast with clear margins (1 cm and .6 cm) After, my surgeon said it was the right move. Once I understood the thickening in my breast was cancer, I got how big it was, much bigger than they thought. My whole breast was lifting up and was almost a cup size bigger that my other breast, inverted nipple, dimpling to the skin. This happened over the course of 3 months, once it gets to a certain size and continues to double, seems like it is growing fast. Seemed safest to remove it then do chemo. I am very lucky with just micro metastasis in one node and scattered cancer cells in the other. Could have been a lot worse for all the years it was growing inside me. I was profoundly scared. I am doing pretty well now, energy back up, pain down. Starting chemo on Jan 22. Mommacat is in my Jan. 2015 chemo group!
I object to the use of the term "old lady cancer". Seems kind of dismissive, like if you are an old lady, it doesn't matter as much that you are sick? Because old ladies themselves don't matter much? Not to me-I hope very much to become an old lady, and you can bet I will be kicking ass and taking names like all the awesome women I know who are over 70.
Congrats on your 1 yr anniversary BC 101!
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Hi dstar and thank you for your comments about how unacceptable it is to call any cancer "Old Lady Cancer". I was an "old lady" when I was diagnosed but I sure didn't feel like an old lady until I started breast cancer treatment. My cancer was detected early (I am told) and was somewhat of a fluke...an incidental finding when they were expecting DCIS because of some microcalcifications. But so what? At any age, we are all gobsmacked by the diagnosis.
I wanted to comment about old ladies not mattering very much. I think there is a lot of truth to that statement for society at large. When I finished chemo and was in that awkward "wanting to go without my wig" stage, I discovered that no one really notices old women. Going "topless" was not a problem at all. I probably could have run around town naked and no one would have noticed me. While this was a bit disturbing...it really made me feel so uninhibited and I'm having a fun time with it. I don't mind being that wacky old lady!!!
No matter ones age, life is just not the same after BC. Losing our sense of well being is a horrible side effect. I honestly don't know how long my cancer was growing. I often wonder if it started growing 15 years earlier, would I have wanted to know that, when I was in the middle of raising my children? I just can't answer that question.
MsP
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I think that at one time, Lobular was found primarily in women post-menopause and in their 60's. Something has changed. I think one factor could be new birth control products like DepoProvera and Mirena. One of my doctors who is a highly accomplished onc said she thought mine was to blame on Mirena. She said it is the progesterone in Mirena and that it was the progesterone in the hormone replacement therapy that caused the spike in breast cancer, not the estrogen. Interesting. I'm just really mad because I was told that the Mirena hormones could not cross into my blood stream.
On the subject of lobular and prognosis, I've never heard that the prognosis is worse. In fact, sometimes it's been measured as better if not the same. I also don't know whether it's true that it can get into other places in the body more easily. I know it's sneaky in the breast and has a specifically different growth pattern. There's so little readily available info, and it's difficult for me to get any info from my onc.
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Yep I agree mary625, I've heard the short term prognoses is better, long term they're not sure about yet. It's a shame Lobular is the poorer cousin to Ductal and they don't know as much yet.
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Dstar -- I am interested in your comment about you being tall so the cancer stayed within your breast. I was diagnose with both ILC (7cm) and DCIS (1.9 cm) in the right breast in May. I had a BMX in August with no lymph node involvement and have not really given it much thought as to why my doctor tells me that I have a great prognosis because I am tall (5' 11"). What does your doctor tell you the reasoning is behind being tall and your cancer staying in your breast?
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I guess I'm the "old lady ILC" diagnosis. I was 62 when found to be ILC grade 3c with 19 positive nodes. I had BX ( DIC was found in the other breast), ACT and radiation. Four and a half years later my TM's started going up. After CT and bone scan, "thickening" was found in my stomach, colon and ovary. Biopsy by endoscopy and colonoscopy proved to show lobular cancer.
I started loosing weight about a year before stage 4 diagnosis. I couldn't eat a full meal, but otherwise felt good. Some women have abdominal pain and/or diarrhea as their first symptom. Of course, if you are in the midst of chemo, you may have all those symptoms.
Gentle hugs from the 68 year "old lady," MaryAnne
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Nomatterwhat, I believe the cancer stayed in my breast, where it could be treated, because I am tall, like you 5'11'', so have a long torso and broad shoulders so a larger area where the base of my breast tissue laid and was able to contain the cancer. The cancer was on the verge of growing outside of that zone, into the area around the clavicle, my surgeon told me, I had clean margins, but only 1 cm and .6 cm in a couple of spots with a complete mastectomy. If the base of my breast had been smaller, the cancer would have breached that breast/rest of my body barrier. ILC is so wierd, I had a stellar pattern of growth, with some smaller nodes developing (which is what I finally felt) and tendrils, some single cell, infiltrating my breast. When the cancer integrate itself into your breast tissue, it is hard to find!
MsPharoah-Thanks for sharing your experience. The writer Doris Lessing talked about getting older and becoming invisible and how it could be enormously freeing (once you get past the disturbing part). That you can do whatever you want because no one notices, just what you said. Well, I am glad you caught yours early! It is interesting that I age that I really don't feel much different, just like myself without some of the problems I had when I was younger caused by immaturity
it's people's perceptions of me that change. I look forward to being a whacky "old lady". Cheers!0 -
That's interesting dstar, thanks for sharing. Yes, I heard, too, that my cancer grew like spider legs in a single cell fashion. No wonder it blends in so easily. When I finally discovered it, the thing that really tipped me off besides the hardness, was the little lump by my nipple that seemed to pop up overnight out of nowhere. It was poking up just under the skin and hard to miss at that point. My tumor on image measured 4.1 x 3.1 x 3.6cm with extension of the tumor infero-medially (whatever that means) over an additional 1.6 cm (the tail). But the MRI image was fuzzy and one doctor said it's anyone guess as to how big it really was. My final margins after my BMX were 1.7 cm. Are you going to have radiation?
MaryAnne, so sorry to hear of your recurrence. I can't imagine what that must feel like. I think I'd be a total basket case! I appreciate you sharing your symptoms as I'm sure like all of us, I'm always on the lookout for things to report to my docs.
Yep, it really does seem like the whole world is young, doesn't it? All my docs were young men and women, with the exception of only a few. I didn't hold that against them, lol! My team are all dynamos and I'm glad they're on my side in this fight.
Just wondering, how many of you ladies had the Oncotype test done? MrsP I see that you did. Mine was 10, so no chemo or rads for me. Sometimes I feel guilty that I didn't have to go through all that and then other times I wonder if I should have. Oh well, onwards and upwards!!
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bc101 , I had chemo before surgery. I think you get chemo if you have a high KI-67 (mine was 63) which makes you a high proliferator and a luminal b. Lobular with a high KI responds well to neo-adjuvant chemo. I also have read that survival is good 5 years out but declines after then. The way I see it is most get a break from treatment and the time should be enjoyed. I also worry about its return but try to cope and keep active with other pursuits. Thinking too much about death is like grasping the idea of infinity- it's overwhelming.
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dstar, thanks for the information. I have asked why the cancer didn't spread to all my doctors and they tell me I was lucky. Really? No kidding. When you have a 7 cm mass and your pathology report says you have "large and bizarre formations" you bet you are lucky to have no lymph node involvement. The same day I felt the lump was the day I looked in the mirror and wondered why rightie was hanging lower than leftie. I just thought it was age. Wow, how stupid was I.0 -
dstar I think I was lucky too, but I don't trust them. My mass was 3.5cm and I had no nodal involvement as well. But how do you really know? I read that it can be hard to find in your nodes, just like it is hard for them to find lobular at all, anywhere. I even told them over 1 year before my diagnoses that I had something in my breast and they wouldn't believe me. I just don't have much faith in anyone in the medical profession anymore. They told me I didn't need chemo either, I know I am lucky - but am I ??? This cancer thing is certainly character building, so people tell me, just like when anything bad happens, "it's character building". I've just found out they found LCIS in my pathology report as well. What does that mean? Despite me asking a breast cancer nurse and an oncologist for my pathology report they have never sent it to me. I only saw the bit about LCIS because in my last Oncology visit the Oncologist put it on the notes to my Doctor. I am certainly going to quiz them about it next time I see them. Sorry for my rant !
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Rant away, fizzdon, get it out. It can be frustrating understanding all the information. LCIS, is, from my understanding, lobular carcinoma in situ (site), which means that the cancer has not yet breached the walls of the milk gland (s), where the cancer is located. So I don't know if you had an earlier development of cancer that spread though out the breast and a later one that stayed within the lobular gland? That is a good oncologist question. My surgeon said the pathology indicated that my tumor all originated from one place. Uhg.
Gotta get back to work. Hand tough everyone, it's character building!
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I could be wrong, but I think it's pretty common for those of us with invasive tumors to also have LCIS and/or DCIS present (I know my pathology report listed both). I figure rads took care of any in-situ cells and that hormonal therapy will help prevent anything from growing ... Fingers crossed! :-)
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Yep I'm pretty sure it is as well as having the 3.5cm tumour. Since my diagnoses 1 year ago I've had 2 x MRI's. I think they keep their eye pretty closely on those of us with Lobular in case it is in the other breast too. So far so good
But the shock was they didn't tell me. It creeps me out knowing I have this sitting in my boobs just waiting to pounce. I just hope the medication I'm on keeps it away. Thanks for listening ladies 0 -
nomatterwhat - yes, I think that recent studies have shown that basically it does really all come down to luck - good luck or bad, depending on how you look at it.
fizzdon - I think examining nodal tissue pathologically is pretty straightforward, but I know - I worry, too. My MO says that the AI's are more powerful than chemo for my type of diagnosis. I find that very reassuring.
You can really creep yourself out by reading those reports and thinking about it all. I prefer to focus on the good stuff - the fact that my tumor was pretty much dead in the water as far as tumors go, so we know that the AI's are working. And my ki-67 score was 0.5% - just about the lowest they've ever seen. My Oncotype score was 10. All really positive things to put ahead of the creepy stuff.
I know what you mean about trust. I had a bad experience with my first doc, but changed providers midstream and ended up with a great team who I trust implicitly. I try to be "positive" most of the time, but yes, it's tough because there are no absolutes. Ranting helps. So does being here on this site.
Hugs to all!
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They had no problem finding cancer in my nodes!
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