ILC - Old Lady Cancer?
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Mine either! Although they did not show up much on US, MRI or PET! They all showed a "couple" or a "few" nodes involved. My Doctor sure found the Mother Load during surgery though!
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This whole thing is a scary ride. To this day I have never seen my pathology report as I think it would do me more harm than good. When I visited my oncologist back in October I was going to ask for a copy of it but then decided that I was a year out of diagnosis and just starting to feel somewhat "normal" again and reading it may set me back again. It would be interesting to know why some masses can grow really large and not spread to the lymph nodes and some smaller ones do.
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I agree. I think you're better off trying to forget about the whole ordeal. The most important thing is to move on. I know - easier said than done! I struggle with that daily. My goal is to not let cancer take over my life. You know....l Had Cancer, Cancer Didn't Have Me. My goal is to get to the point where I don't think about it all. But if I need help and support, or need to rant, I come to this site. Whether or not it comes back is mostly out of our control, but studies are showing there is actually a lot we can do to prevent recurrence - like eating well and exercising.
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bc101: Yes, I was diagnosed as Stage IV from the beginning. It think you can see my treatments in my profile. I put them there instead of in my signature line since they would make my sign off longer than some of my posts!
I have never heard of height as making any difference in risk factors. I am 5'11" and it didn't stop my Cancer from spreading
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superfoob,
how do we see your profile? How is that different from your signature line? And how do people put little sayings and their name just above their treatment lines?
Sorry for sounding so dumb but I obviously have not figured this out yet. Lol
thanks for any help.
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Hi Mommacat4!
I believe you can see my profile by clicking on my name, Superfoob, right below my picture. It should take you to my profile which includes my biography. If that doesn't work, please let me know. That's how I thought it works...
To add a post signature and an avatar, click on My Profile, at the top right of your screen. Click The Settings tab. It will take you to your profile, where you can edit your information.
Scroll down a bit to Avatar. There, you can edit and add a photo. Under that, you will find an area to create a biography. Scroll more and right before, Diagnoses, you will see a Signature area. click to edit.
Scroll down a bit until you see a section called, Diagnoses. There you can click edit and answer the questions that come up and then Save Diagnoses. That info will now appear under your signature or tag line. Right below that section, you will see a section called, Treatments. There you can add your treatments and mark them as public or private. If public, they will appear in your signature line.
That's it! 😘
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Thank you superfoob
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I was diagnosed at 47, surgery was 12/19/14. From reading previous posts, it appears that mine was caught with a smaller tumor size - my tumor was 1.6 cm. However, one of the subtypes is pleomorphic which is aggressive. I am currently awaiting the Oncotype results to determine if chemotherapy is necessary. Should have results this week and am ready to move on and get the next treatment done. Patiently waiting is hard to do!
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Good luck with it all Mm68 so sorry you had to join this forum.
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Diagnosed with breast tumor, grade 3 after 1st biopsy in the beginning of November 2013. They did a 2nd biopsy 1 week later because it had spread to my nipple. At this point, I was a 4 year Non-Hodgkins Lymphoma Survivor, seeing my oncologist every 3 months. Despite my complaining about more fatigue and back pain and her breast exams every 3 months, she saw nothing of concern. When a breast surgeon suggested a auxiliary node biopsy and a consultation with the same oncologist, I decided it was in my best interest to get a 2nd opinion and treatment options. Went for a 3 day appointment at a breast center with an "excellence" rating. Intake oncologist thought 2 biopsies were too much and ordered a PET scan. Ordered on Friday, November 29, had the PET on Sunday, December 1, found out I was stage IV on Monday 12/3/13. At that time I was 54 years old. I did have early onset menopause from the nasty chemo I had for NHL. My onc calls ILC "sneaky" and says it's not unheard of for a stage IV diagnosis to be the 1st diagnosis. I am now 55, will be 56 in July. I am ER+ and PR+, take Anastrozole every day and get an Xgeva shot every 3 months, not to mention all kinds of supplements. I have mets to sternum, cervical, thoracic and lumbar spine. At diagnosis, my breast tumor had quickly grown to 8 cm. upon my return in March 2014, it shrunk to 1 cm. PET scan in May 2014 showed NED - tumors were dormant. PET scan in December 2014 showed 1 hot spot. My onc says he has one patient that has mets where I do and he's been treating her for 8 years. I'm hoping that will be my story too. I am blessed to be able to see my son get married next November, we'll see if I can be further blessed and meet my future grandchildren.
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Thank you Sharon! I believe you will see those grandchildren. My hubby and I have 4 girls between us and one of the oldest just informed us that in 3 years she plans for children. She has a bf but I guessing she'll be planning a wedding in 2 years so I will need to stick around and keep a cash cushion on my bank account.
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Sharon, thank you for sharing your story. I am so sorry you are having to go through this. It's just so not fair. Yes, ILC is sneaky. And it doesn't help that doctors don't listen. Glad to hear that the tumors are shrinking.
Check out this article. I just logged onto Facebook and saw this article from Mayo Clinic.
It's too late for us, but I'm glad they are (finally) coming up with a way to spot cancer in dense breasts. That is how my cancer hid from view for so long. Like most of us, our annual mammograms didn't find the sneaky beast.
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Dear BC101,
Thank you for the dogged investigation you have demonstated in ferretting out ILC news and sharing it.
Until late October 2014 my breasts were little more than small decorations on my 5'10", 65 year young thinnish body. Then in early Nov., W-O-W!!!-- a diagnosis of ILC & LCIS in rt breast.
On 1/14/15 I had lumpectomy & SNL/w/dissection on rt side & excision of papillomas on rt & lft breasts. On Mon. 1/26/15 I'll have post-op and hopefully enlightenment since no results have been posted. My attitude is: whatever is, is and I shall do my best to assist in the most positive outcome that I can.
I note that you wrote that the new info re MBI is too late for you and I wonder if you realize how much you are appreciated. Perhaps there is an unrevealed therapy which may not be too late for you.
I would consider myself honored to have you as a friend.
It is my wish, like so many others here, to see my (as yet twinkles-in-the-eye) grandchildren, but I have several surrogate grandchildren, so that need is comforted. If this life doesn't allow it, I shall be a fairy grandmother--so much easier method to travel. I'm getting too silly now, so I'll stop.
I've never been a joiner and I mostly read avidly. But I felt it important to send my great thanks to you, Ms. BC101. This BC has been the most intensive, interesting (although not really an elective) and compelling course I have experienced--ever. Who of us, at whatever age, thought we would ever wake up in such a selective classroom?
Since all human beings will someday reach a "final," until that time I shall be cramming.
Again, many thanks and warm embraces to you and to all.
~ Hygeia
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Sharon, I am so happy that you are having positive results with your treatment. Those experiences help us have confidence that the AI that we are taking is a powerful treatment.. So sorry that you are having to deal with this cancer beast. We are here for you! I do not have dense breasts but my ILC was still found incidentally, but obvious when confirmed. I decided to keep my breasts but I do challenge the radiologists monitoring me to make sure they don't take any shortcuts. I recently moved and will have 3-D mammography available in my new facility. All evidence is that it is better than regular mammograms so fingers crossed.
MsP
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Aww, thank you Hygeia! You are so sweet! I'm honored to have you as my friend as well.
I could say the same - I've never been a joiner and prefer a night at home curled up with a good book and my cat (and my dear hubby). This is a very exclusive club, but here we are. I find myself coming back to these threads all the time in search for some common ground, especially with ILC. I wish you all the best. I'm sure you will do well, my friend. Enjoy the journey, as they say.
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Thanks, BC101. This journey began with a jolt which knocked me down on my bum, but now I'm up and at 'em, Madam.
My best to you, cat and hubby too.
~ Hygeia
PS: This IS an exclusive club and the dues are accordingly high. I hope we ILCrs don't have to resort to selling pink ILC-logo pencils on street corners.
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Sharon, thank you for sharing your story with us all. You create hope and a light at the end of the tunnel for all of us.
I too one day am looking forward to some grandchildren. I have 3 daughters and 1 son. None are married. 2 are too young still to be married. (Under 18). The older 2 are just planning on getting their own apartment together.
Again everyone, thank you for being friends here. It means a lot to me.
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I was diagnosed at 51, premenopausal. I had my first mammogram 21 years ago for a lump I felt in the exact same spot. It started throbbing about 1.5 to 2 years ago so I had another one and diagnostic u/s which found nothing. Pain worsened and kept me awake at night and the shape of my breast seemed to be changing. Is it possible it started 21 years ago? Could it be that slow growing?
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I sometimes wonder that, too - about long it can grow. I keep meaning to ask my doc, but then forget everytime.I suppose it could have. I had symptoms of cyst-like growths and years ago had a needle biopsy although can't remember which breast it was. Either way, it's probably not a good thing for us to focus too much on.
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I hope not just old ladies get this. I have been having issues for 2 yrs but mammogram was normal. I was told 4 days ago at age 32 and I just turned 32 in January that I have ILC with a mass over 6cm and just had a mri to find out exactly how big it is. Also no one is my family either side has had cancer. I am thinking because the kind i have fuels off hormones it happened because of a mirena iud i had a taken out a few yrs ago. Plus I have been off and on bith control for yrs to help with my endometriosis that I come to find out no longer had after my surgery in 2002.
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Dx ilc 55 yrs....but stopped periods at 45! FYI...no family cancer history
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hi there - I was diagnosed last year at 48, am currently on anastrozole and Gosaralin presurgery, as well as in a Mayo clinical drug trial. I think my cancer had been around awhile before diagnosed. There is so much unknown about our cancer, perhaps he calls it the old lady cancer because it is so sneaky that it's not detected until either large enough to find or biopsied...
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Hi Terri and welcome. So sorry you have to join this group.
I did neoadjuvant hormonal therapy, too, but I couldn't tolerate the side effects of Arimidex. I was on it for about 2 months or so before I had crippling joint pain and had to switch to Aromasin. I've not heard of Gosaralin. Is that part of the trial or what are you doing for that? The Mayo clinic is awesome - you are in good hands!
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I'm 46 with this one.
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DX at 40. Just a few months ago. Had at least 9 tumors (largest being 2.8cm) in my left Breast and right Breast was clear. I too felt my 'lump'.
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Here is a recent member of the celebrity "Old Lady Cancer" Club. She has an interesting story.
http://www.people.com/article/rita-wilson-breast-cancer-double-mastectomy-reconstruction
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I was 47 when diagnosed with ILC. Premenopausal and still am.
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Hi all I was diagnosed with ILC in Aug 2010 Age 53 I had sharp pains that would come with no rhyme or reason in my left breast - 11 oclock area.. My mammo was scheduled so I told them i could feel a pea size lump with sharp pains Mammo showed nothing. Ultra sound showed nothing . So I went to a general surgeon to have lumpectomy to rule out what I knew was cancer. He wanted to aspirate the area I insisted an a lumpectomy. It was the tissue that came out with the lump that was ILC not the pea size lump. He said if he would of aspirated they wouldnt of found it.. My mom died at the age of 54. I was only 4 at the time. I've always wondered if she had her cancer when she was pregnant with me. ?If this could be genetic?. In the late 50's early 60's they didnt know as much about cancer.. By the time they diagnosed her it was iin her lung ,breast , lymphs and spin. so sad. And I also have wondered if blood type has any thimg to do with cancer. Both my mom and I are AB. I pray for the medical profession to make big advancements on early detection of ILC (with it bieing so very hard to detect until it is large enough( and for all types. I have a thickening in the left upper breast/clavical now. I have a bad feeling again but I dont want to waste money on a scan if its not the RIGHT SCAN that wont detect ILC...? I have one more week b4 my appt praying for the right scan I also have bone pain but I think its from the Arimidex and Osetoporosis-ugh.. Its in my left shoulder, legs and lft foot.... I am reaching my 5 year soon. from what I have read the MRI with contrast is probably my best scan to read ILC is this what most of you think??? I am so thankful for everyone here and your support
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DX at 47, Pre-menopausal. Have since had bilateral-salpingoophrectomy for borderline LMP ovarian tumor. Instant menopause! Solid tumor was found when ultrasound for abdominal pain showed 12cm ovarian cyst-likely caused by Tamoxifen. It's been a long ride, not quite old lady yet.:)0
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I was diagnosed at 49 and pre-menopausal. No one in my health care team ever referred to it as "old lady cancer"; in fact, I just joined this site and this is the first I've heard of ILC referred to that way. That said, I hope to be a happy, healthy old lady someday. Best wishes to you all and thank you for sharing your stories. As a relative newbie, I am learning a lot of beneficial information.
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