Team ILC Warriors
Comments
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Lily55 yours was exactly the same too it is so weird when it just appears out of nowhere it seems. I always hear that saying early detection is so important but i did everything i was supposed to and still went undetected. There really was no symptoms before for me. Maybe feeling run down but i am a busy mom and wife i am supposed to be tired. I sometimes think my husband requires more energy than son some days..lol.. The last thing i thought was i had cancer.
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Lily55, like if it had been there sooner, we wouldn't have gotten it checked out? Seriously?!? I went in within days of "waking up with the wad" and had a mammo and u/s that came back clear. I still have the notice that says "benign breast changes, not malignant, follow up in 6 months". I made it through 4 months of worrying before I called and asked if I could come in a couple of months early.
Even then, it still didn't show up, but the radiologist had a gut feeling and did biopsies of both wad and lymph nodes. BC in the wad, lymphoma in the nodes. Sheesh!
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Mine was multifocal, no distinct lumps. There are no mammograms in the UK until age 50, I was 45 at dx and was lucky my GP referred me as she agreed with me that the breast felt harder than it should, ultrasound found both, pathology found two tumours grade 2, plus high grade DCIS in all quadrants. I am only moderate ER+, no PR or other tests. HER-. Had mx and recon, chemo but no rads. My mum had bowel cancer at 49, supposedly there is a link between bowel cancer and ILC. It was 3 years since my dx in January, seems like a long time ago, quite surreal really, it never quite goes away but it's part of my life&experience now but it does not overshadow all else like it did at the beginning. Much love to all ILC girls here!
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My ILC was multifocal too. No history of cancer in my family until my bc dx and then 2 weeks later my 66 year old older brother was dx with bowel cancer. So we did the cancer "journey" together. His was picked up very early, and after his op he had a bag for only 7 weeks before it was removed. He's now been declared cured. Only follow up is a colonoscopy in 4 years time.
I had a scare late last year when my bowel screening test came back positive for fecal blood. It freaked me out, I knew that ILC can come back in the bowel, and with my brother's history, well, you all probably know exactly how I felt :-) Luckily for me it was benign polyps. I go back for another colonoscopy in 5 years time.
Trish
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Hi there. I was diagnosed in October and surgery was late November. I am almost done with AC then off to the Taxol ride... Docs originally thought it was IDC then when the pathology came back they changed it to ILC. So, here I am! Nice to find this thread. I am on the Jan 2013 chemo thread as well. Nice bunch of ladies! I love this BCO board. I have learned so much.
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Skigirl72-i had the same chemo combo as you. I found i had alot of bone joint and muscle pain with the Taxol-helps to take alot of long baths and pop painkillers if this happens to you hopefully not. On the upside i did not feel overall as crappy as the AC part. The first part made me have nausea and weird off appetite and sleeping and pretty well everything but i found the taxol i felt much more normal like myself again. Everyone is different i know just hoping it gets easier for you like it did for me.
The best advice i ever got through chemo was - let other people spoil and pamper you with help if they offer-this is the time in your life you deserve and need it. I have always had a hard time letting others do for me i am usually the doer so it was hard for me. But then she said you would want to do the same for someone else. And she also said it can help the people around you feel better to let them do it as they probly feel helpless as to not being able to help you with cancer itself. She was right in my case. I found people close to me got busy helping out and it seemed to help them they were happier
Hugs to all
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My stomach is in knots. Has been all day. I should be finding out in two days if I need chemo or not. I'm scared but who isn't? To see people who've made it through chemo or are in the process of making it though chemo gives me hope. Hugs to all of you! There is the proverbial light at the end of the tunnel! 😊 Still praying my results don't indicate a need for chemo but I'm ready to roll with treatment either way.
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Amy- i will keep my fingers,toes and eyes crossed for you that you do not need chemo. It is definately no fun but as many people have worded it it is DOABLE and it is. It like the fear of the unknown- my first chemo was the scariest then i was fine.
But again we will hope and pray you do not need any but if you do just look at it as more ammo for your fight against cancer.
Hugs to you
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Amy - remember you also have a choice in chemo or not, it needs to be a joint decision, use your own wisdom too, after all you have lived in your own body all your life and you are unique..........
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beth1965- hows the tamoxafin going? I have heard about bone/muscle pain and neuropathy with taxol. I am having very few SEs with AC. no nausea or anything, just tired and no taste buds... oh and how could I forget... no hair. I go for my last AC march 8th (I am on the 3 week plan). Taxol will be every week. I am planning on having treatment om Mondays. I am hoping that I will be able to work Thursday, Friday and Saturday. How was it for you?? When did you have your port removed??
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Beth and Lily, thank you for the encouragement and advice! 😊 Hugs!
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Hi Beth-
I had mammo's since age 30, 13 yrs of mammos! I had microcalcifications this time in Oct. Had a stereotactic biopsy came back B9. I was given the option of waiting 6 months or surgical biopsy. BS told me not to worry as he wheeled me into OR, only 10% chance its anything.. I was not worried, I guess that will teach me to follow my gut. Although I have to say mine was 2 mm. very small, I dont think it could have been detected. Told me that the micro calcifications were more like dead cells in front of the cancer, I havent read this anywhere so not sure if that is accurate. Good thing is they found it. My MRI a couple weeks ago was at my insistance, clear on both sides, but MO made sure to tell me there could be cancer there, they just cant see it.. I was like are you fricken for real?? Couldnt you have let me enjoy some CLEAR results even for a minute??>?!!!
So, the answer to the Family Cancer questions- for me I was adopted, I have no history. My bio mom was 17 and unwed when she had me, I imagine she was sent to "grandmas" for a trip, had me and came home. I somehow in my head think in 1968 the choice was not hers to make. Strangely when I was 17 and again at 21 I had 2 different psychics tell me my mom passed away at a young age. I said nope she is home right now, but I always wondered if they meant her. I havent been to a psychic since but sure did beleive back then. My parents are wonderful so never felt any need to look for her. In Ohio records are sealed, If I sign and she signed at some point they could match us up. Emotionally at this point I dont want to know. I find some peace in knowing if she is gone I am sure she is watching over me. By giving me up she gave me the greatest gift anyone could give, a loving family. SO.... BRCA waiting for results and I have NOTHING to base it on, no clue, it could go either way... Today is 1 week... its getting to me, I feel it gnawing at me as the days pass.. I keep saying I am at peace with whatever the results, but honestly I just might lose it if +.
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I had my mind set either way with the BRCA test. I was prepared to remove both breasts, ovaries, uterus... all of it! I know that doesn't guarantee that it wont come back, but, I was willing to remove everything to better my chances of survival. My test was negative. I went with my first instinct and had one removed and rebuilt with my belly skin/fat. I do fear that at some point it might come back. I signed up for chemo/rads/Tamoxafin/more LN removal... I am considering having my uterus/ovaries removed anyway. I want to live a very long time and I don't need BC getting in the way of my long life. So, take a deep breath. The results will help you decide. At least that's how it worked for me...
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The waiting sucks, doesn't it?! I'm sorry you're going through it. My appointment for the BRCA counseling isn't until April 15! More waiting but at least my treatment will be in full swing by then, whatever that may be. Keeping fingers, toes and everything else crossed that it's negative for you! 😊 Hugs!
Family history - what cancer don't we have? My dad had a sister who had gall bladder cancer but she died during surgery to remove it. She was also quite old when she passed. My mom had cecum cancer which spread to the liver, she is fine and in remission but it was a very scary year for her. She had 13, yep 13, surgeries between April and August the year she was diagnosed in 2010. Mainly due to infections. Her sister (my aunt) had breast cancer at age 42 and has been in remission for 15 years. She was a part of the other 10% of breast cancers - not IDC or ILC. She went through chemo and radiation and DID NOT lose her hair! Oh, my mom also did not lose her hair from chemo. Maybe I stand a chance?! My maternal grandmother had endometrial cancer and passed from that. My maternal grandfather had cecum cancer but was in remission and passed from a kidney aneurysm. My maternal great grandmother had ovarian cancer which spread and she passed from that. My maternal great uncle had leukemia and he passed from that. No other uncles (3 of them) on my mom's side or aunts (4 of them) from my day's side have cancer. My brother remains cancer free. I think that's it! Sorry for the book.0 -
I have very little family history of any kind of cancer. My maternal 1/2 aunt had breast cancer and my maternal uncle had lukemia and that is it. No other family cancer.
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Lemon, thanks for starting this thread. Interesting to be on dif points on the timeline so that we can help each other.
To those who are waiting to find out chemo or not, I remember that period to be tough. When my oncotype came back at 17 (no chemo) I was releived but also concerned. Took 3 onc opinions to reassure me that hormonal therapy was enough in my case. (Or that the risk vs benefit of chemo for me wasnt worth it.) Chemo is an unknown but most seem to say that it was easier than they expected. So if its recommended I would go for it. If borderline, get another opinion.
Re waiting for brca results, that was also tough. But I know a bunch of brca+ ladies who are doing fine. I've already had the hysterectomy and the ooph so the only thing I would have done dif was to take off the other breast. Think it gets you a yearly MRI, no arguments from insurance:) at least that's true here in israel. Being brca+ is common here.
Thanks for your cancer stories. I was helped by having a dad who was a long time ca survivor.
Re tamoxifen, I have switched to Femara but the first 2.5 yrs on tamoxifen were fine. Joint pain but omega three and exercise help a lot.0 -
Greenarch, just about everyone in my dad's family has had or has died of cancer. They typically have the cluster that recently was associated with lobular: prostate, bladder, skin, kidney, bowel, testicle. My paternal grandma died of bladder cancer. My paternal aunt died of melanoma in her eye. My paternal grandpa had a stomach ache, they opened him up thinking appendix and found all his intestines "glued together" at which point they closed him back up. At the time (50 years ago) they said it was caused by childhood vitamin D deficiency (rickets), but it sounds an awful lot like lobular mets to me. Paternal grandma's sister died from breast cancer, but I don't know what kind. Dad and dad's twin have had between them prostate, testicle, bladder and skin cancers, as well as pre-cancerous conditions of the bowel and kidney.
My mother had ovarian cancer 5 years ago, which she survived. My mother's sister was DXed a few years ago with 3 separate, primary cancers of the breast, lung and endometrium. A year ago she developed mets, but they are not sure which one of her cancers metastasized. She is fine for the time being. Both of them are BRCA-negative.
Soooooo, I always figured I would get cancer one day. It just didn't occur to me that I would get cancer long before turning 50. I was 47 at DX, but given the size of the blasted thing, it must have been brewing for a long time.
By the way, I too had a cancer that could not be felt or seen that suddenly formed a palpable, large mass. I don't think it is because it suddenly grew. I think it is because of the weird way in which lobular grows.
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This phrase below from Momine is really key to lobular women as at seems to be so typical and it means we should all listen to our intuition and insist on all the tests and scans until we as reassured as possible......and it really is nothing then a sudden appearance, and rthis is part of what makes lobular more scary for me, its like silent prowler lurking in the shadows on a moonlit night
I too had a cancer that could not be felt or seen that suddenly formed a palpable, large mass. I don't think it is because it suddenly grew. I think it is because of the weird way in which lobular grows
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I have a good friend whose Mom dreamt that she had a tumor! Tests failed to find it but she insisted. In the end she had a 10 cm lobular tumor. Way out story but she was smart to be so determined.
I'm not convinced that lobular is as hard to find as they say. Rather I think there's a vast range in quality of mammographers and ILC is rare and not what they're looking for. I was dx by a woman who found it right away, on a mammogram. confirmed that day by US. I had switched mammography places and think the place I had gone to for the past three years just wasn't as good. You don't read about this much, but not all mammographers are equally good.
Momine, that's quite the cancer history. Does your family all live inthe same area?
Went to oncogynecologist today for a check up. All good, wanted to sprinkle good news here, too!
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Kestralgrl, snow is melting quickly
I love Tucson, went to U of A for a while before transfering! Beth1965, I was told I am also high risk. My tumor was 2 c. and my path says grade 1 but I think it's borderline...I asked why I was high risk and was told it was because of my node positive status. I hate having that hanging over my head and get depressed when I see so many others with a 0/2 or 3 or 4 node status...
I have no cancer in my family other than my aunt, who died of it 2 months after I was dx. She was exposed to above ground radioactive fall out like me in the 1950s/early 60s, and died of stomach cancer.
I didn't dream I had cancer, but I had this "feeling" for months...like something that felt a bit like doom--hanging over my head. I found my lump sitting on my couch, doing a random breast exam while watching a random episode of Sex in the City where the character Samantha is told she has a lump and that it's cancer. I swear I'm not making this up
True story.I'm going to talk to my gyno today about female issues. I know that we are more at risk for certain kinds of gyno cancers, and I'm not sure what I should be aware of. I'm also going to ask her to check my hormone levels so that when I see my MO next month, I can prove I'm post-meno now, and talk to her about Arimadex instead of Tamoxifen.
Hugs to my ILC sisters.
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Greenarch, they all live in the same small country (Denmark). On my dad's side, I am sure it is genetic, because it is generations of it.
On my mom's side it is a bit more iffy, although her grandmother's sister also had breast cancer. There is no strong cancer history, but it is also a very small family, so who knows. It does seem a bit weird for my mom, me and my mom's sister to all come down with cancers of the reproductive system around the same time. I keep thinking Chernobyl, but again there is no real way of knowing.
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ILC ladies--question for you. I know that ILC, if it metastasizes, likes ovaries and digestive organs. I'm high risk with my positive nodes. I just say my gynocologist who is checking my hormones to make sure I'm post-meno, but I also asked her about the CA - 125 test for ovarian tumors, and she said that normally she wouldn't request it, but because I'm high risk and I'm ILC she thinks I should have it done. She acknowledged that like many other tests (circulating tumor, etc) they aren't fail-safe--many things can cause a false positive- but she still thinks I should have it done.
I'm scared. But willing to go forward with it. She said if she sees anything "off", I'll have to have a pelvic ultrasound right away to rule out anything. That's not a problem, but this test thing really freaks me out.
Have any of you done this?
Claire
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No, but I am having my 2nd trans-vaginal u/s tomorrow morning. My last PET scan (they do this to keep tabs on the lymphoma as much as BC) showed something on my ovary which the 1st u/s showed was a simple cyst. My MO didn't suggest any follow up, but my ob/gyn said she wanted to check to make sure it was gone. I may ask her about the test if I see her tomorrow. Between the ILC and tamoxifen, it probably pays to be cautious.
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Claire, I had the CA 125 test at the beginning. Was normal. They also did a baseline tranvag US. Before starting hormonal therapy. I've since had an ooph so no need for these any more.
Claire, I'm afraid you might drive yourself crazy. Are you/have you done chemo? That's usually recommended for node + ILC. I know women who were node+, had chemo and are fine years later. We are all at risk for these mets w ILC but if you've done all you can, and you're being followed closely, it doesn't help to sit and wait for abdominal mets. Belive me, I'm no hero, and my mind wanders there, but being nervous all the time means cancer is getting the upper hand by punishing me all the time. Trying to just live my life, healthy as possible, without focusing on worst outcome. I say to myself that I hope to be one of those women who had Bc but then lived til 100 and died of natural cause. Either way is possible for all of us. Why suffer mentally while you're living?:)0 -
Momine, (figure youre on a similar time zone, cool!) it is frustrating to not be able to figure out the big why. Especially when there are genetic and possibly environmental triggers. I had none of the risk factors that they normally mention and even breast fed four kids for long periods. Breast cancer was so not something I worried about...
How are you doing on Femara? I just switched to it and am doing ok overall but am having the most intense fatigue. Onc says it is a known SE, and that I should exercise. Am doing that but sometimes need to go swim to wake up. Am less efficient at work, home. Oh well:)0 -
My stomach is in knots! Trying to take deep breaths. Going to meet with MO this morning to discuss oncotype result. 😰
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We are in your pocket.......remember you do not need to make a decision on the spot, whatever the news, taking some time to decide will not change your prognosis at all as ILC is very slow growing
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Lily, i know ILC is slow growing, but does that include mets as well? In other words, does ILC take years to spread to mets?
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I don´t know for sure but I believe that any mets are slow growing too - however after about 10 years most hormone positive cancers change their status and become hormone negative so we need to keep the blighters under control and not just rely on anti hormone treatments in my humble opinion....
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Sgreenarch, I did lumpectomy, chemo, rads, and am getting a bmx in June. I did DD ACT and 12 taxol, plus 33 rads. I am frightened at times but not all the time, but I look at most of what I'm doing as proactive, which makes me feel empowered. Thanks for the reminder to live, but I feel I truly am and not only focusing on what might happen. But I'll never be able to completely forget about all this, since if I did, I feel I'd leave myself open for mets and recurrence. I look back from time to time, but I don't stare
Thanks for the info on the CA 125 test. I feel in my heart and soul there isn't anything there right now, and I plan to keep it that way if I can!
Hugs!
Claire
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