Team ILC Warriors
Comments
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omg.. so beautiful, where are you in Greece. I grew up in Ireland and have travelled all over Europe but never made it to Greece, it was on my list when I came back from Canada.... but I stayed lol, Visiting Greece is on my bucket list for sure.
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Well, the first pic is a random pic from one of the islands. I picked it because it is classic sort of Greek prettiness. It is probably from Santorini.
The last two pictures are from the old town in the center of Athens at the foot of the Acropolis. We live on the edge of the old town and when I go for a walk, with or without my dogs, it is usually around the walking streets in those photos.
Ireland is pretty too, though. I went there with my parents when I was a kid, and I remember thinking the children looked like angels.
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Welcome to the new lobulitas!
Kestralgurl, I can't believe that they did this to your DH when he was less than 1 year away from retirement. I've heard of this before in different coporations and it's a dirty trick to rob loyal employees, I think. It's hard not to panic but my husband lost his contract work the same week I was let go from a non-profit admin position (this happened about 7 years ago) and it was okay, although I was devastated for a while.
Momine, what lovely photos. I always wanted to travel to Greece.
Tomorrow hubby and dog and I will go to the Sedona St. Patrick's Day parade and then go for a hike. We had about 15" of snow last week in the high country and it is supposed to be 68 degrees here today (typical no. Az March weather--dramatic) so we think there will be ephemeral waterfalls and streamlets running, unusual for the high desert. We hope to find some of them!
Question: I heard ILC was slower growing, then I found some research that seemed to disprove it. Given that my ILC was 2 c., 6/11+ nodes, but grade one, what do you make of that? Do you think I had it for a long time before I discovered it?
Hugs to my LLTas...
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Lemon68
My late husband (oral cancer) had bone mets, and he did have constant pain in his spine and ribs before we figured out what happened. I also read somewhere that ILC tends to met to soft tissue places (ovaries, digestive system) rather than bones. I know that's not much, but I hope it helps you somewhat.
I'm guessing you'll be found to be all clear. Let us know, the lobulitas are here for you.
Claire
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Claire.. my lobular is a grade 2 but the mitotic count was high, one more and I would have been a grade 3. I think that on average it tends to bea grade 1 or 2 but it can be a grade 3 . And dont forget also that if highly hormone positive irregardless of grade it still have the ability to grow fast
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Thanks, Lobulita's, for your supportive responses. It means a lot that there are people who care.
Claire is correct. It is a dirty deal from corporate America. DH will be finding out the details of his severance package today and we shall know what is what. I was laid off a year ago and have been working part-time since. Have no idea what the future holds, right? Insurance is obviously only one of the things we have to worry about.Momine. the pictures of Greece are gorgeous! Jealous that you are near the water. One bad thing about the Southwest.....no water!
It's always surprising to me how different dx's can be. I had a large tumor (over 6 cm) and grade 2, but negative nodes. Although they did find isolated tumor cells, so I am not sure how that changes things. I have done several stage calculators and some put me at 2b, others at 3b. Asked the MO and was told it didn't really matter with regards to treatment, only that prognosis would change. I did tell them that prognosis was kinda a big deal for me.
Off to a staff meeting on another beautiful sunny day!
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Welcome Antonia! You've found a wonderful group of women here!
Gail, I am so sorry to hear about your husband losing his job. That just sucks! You are in my thoughts. Hopefully he can find something new quickly. My husband's company was just bought out and everyone is on pins and needles. I keep telling him to hold on to his job until I get through treatment!
Momine, I love the pictures! Thank you for sharing! I was in Athens three years ago on a girls weekend with my daughter. It was so lovely. I could not believe how blue the water was!
Kim, I'm sending you calming thoughts and many hugs! You are stronger than you know....
Lobulitas! What a fantastic name! Puts a smile on my face. Lovely lobulitas, I hope you all have a happy Friday and a wonderful weekend!0 -
I might be dim but is the mitotic count the same as your KI-67?
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My ILC was apparently very ER/PR+ I'm not surprised, though, since I suspect that I suffered from estrogen dominance for years. In 1997 I had a myometomy to remove 6 uterine fibroids; in 2009 I had another to remove 87.
I've had problems with ovulation, etc. for years and had to get progesterone shots and take it by mouth sometimes so that my period would be regular.
I menstruated first time at age 11, and was still ovulating regularly in 2011 when I was dx. It was a great day when my gyno confirmed that chemo put me in menopause
I'm only sorry that alcohol, wine in particular, seems to drive the estrogen machine. I do love my red wine at times, and do feel pretty darn guilty when I drink any, anymore.
I know 80/20 like Kestralgurl says...but I am still wondering if I did something to help my cancer along. I'm not one year out from finishing even chemo yet, and I'm still very fearful at times. PTSD I guess.
Long Live Lobulitas
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Claire - I am an oestrogen dominant person too, convinced that my BC was partly caused by an unavoidable hysterectomy for fibroids which affected my breasts and made them huge (oestrogen I suppose) along with the rest of me......next stop BC a few years later - i am now 40lbs slimmer and fitter etc etc, but PTSD is there. Even thinking of anything to do with BC has me churning and shaking and feeling like I´m about to do an exam and i am coming up to my first anniversary of year from hell
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Hi lily.. no mitotic count is not the same ki 67.. mitotic count is used in grading.. if you look at your path report it should show over all grade and then a breakdown.. three categories given an number from 1-3. The standard grading is the nottingham scale if I remember correctly.
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Just joining in for the first time. I was diagnosed at age 34 back in October. One lumpectomy, followed by a double mastectomy, and TC chemo later, I finally found this forum. Happy to make folks' acquaintances. Very excited for your guidance and support as I transition to survivorship. Yeah!
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Those pictures are beautiful, thank you for sharing them!!
Claire that does help, thank you for sharing. I am sorry you lost him and happy you found love again. If you have your phone/camera snap some shots for us this weekend on your hike.
I had my trial run for rads this morning. I had to give blood for a clinical trial I have volunteered for and next to me came a woman and her DH, she was getting her 1st dose of chemo. She was petrified and crying as was her DH. I wanted to hug her so badly but I am sure I would have freaked her out. I got into my changing room and sat and cried. I was thinking about all of you that had to do the chemo and it broke my heart, your so strong and brave! I keep thinking about her hoping she is okay tonight. I wonder if I am going to be traumatized everytime I go there.. I am so emotional anymore.
ILCJD- welcome to our newest lobulitas, we are glad you found us. Age 34, I hate to see that. How are you doing now?
xoxoxxoo
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This is my Histologic Grade:2
Nuclear score-2 Tubule score:3 Mitosis score:1
Highest score on tubule, I have had a hard time finding a clear meaning of this online. Nuclear and Mitosis I found easily.
We are all like mad scientists! Always disecting everything.. or it is just me? LOL.. some how I know its not.
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Welcome, ILCJD! Glad to see more Lobulita's joining the fray.
I just pulled out my path report and while it showed Grade II, score 6 on the Nottingham grade and Grade 2 on the modifed Black's grade, I didn't see any other numbers. I also found a Ki67 of 10% or not elevated, but not sure what that means either.
Was 90% ER/PR positive, which should me I will be very receptive to hormonal therapy, right? I have been tolerating the tamoxifen and plan to switch to Femara soon.
I have had no real ob/gyn problems and didn't start menstruating until 14. Had two kids before 30 and breastfed both for many months. I did go in for a hormone check about 5 years ago, during the bio-identical craze, and the doc was shocked by my sky high estradiol levels. Hmmmm, if I only knew then what I know now.
The bad news is that DH's severance package is no great shakes, but the good news is that my boss at my part-time said that I could get more hours and they could get me insurance. Then she gave me a hug and told me not to worry, that they were going to help.
Small, family owned business. Goes to show.Off to have dinner with an old friend and I will be having a margarita.......it's required with Mexican food down here.
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Mad scientist lobulitas !! hey my mom always said the devil is in the details.
I was overall grade 2 with score of 7 ( 8, 9 would be grade 3, where as 6,7 is grade 2).
Tublar differientation is nearly always a 3 in lobular I believe, it is a defining factor in lobular which is why some pathologist believe lobular should be graded differently than IDC. Anyway the nuclear category looks at the variation in size of cell nucleus, and then the mitotic count put simply is how fast the cells are dividing . I know my individual score were Tublar 3, nuclear 2 and mitotic count 2, but I know if they had count one more cell division it would have been considered a 3.
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Lily - didn't you say elsewhere you have been on thyroxine for years. I read that it might cause breast cancer.
http://www.canceractive.com/cancer-active-page-link.aspx?n=1671
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Thank you suzie - no one ever checked my Urine for iodine, have been on thyroxine for 15 years and every member of my family who has had BC was also hypothyroid.....so now what do i do?
Have started taking low dose iodine and will increase that but it seems this makes me 20 percent more likely to Get BC on top of my already high risk of recurrence which i was told was 80 percent !
I am allergic to iodine contrast and topical iodine so taking it slowly but i don't want to Get fat as already gaining weight with no change in diet .....0 -
Lily - I have a large goitre (2 1/2 inches in size) and have refused to have it removed so far - I do not want to take that drug. Now that I'm over all the drama of the breast cancer, I do feel ready now to talk to my surgeon about getting it removed, but I will ask if I will have to take anything. I had been taking kelp tablets but ran out recently - must get some more. Also our bread has iodised salt in it and I use only iodised salt. Funnily enough, my thyroid function was supposedly within normal range. I actually blame HRT for my BC and the birth control pill, which is 5 times the strength of HRT.However, I do believe in a link between bc and thyroid problems - you will see many many women here with thyroid issues.
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Dear lobulitas,
Happy St. Patrick's Day! Who's wearing green today? It's my favorite color and always strikes me as the color of hope--and spring begins later this week, so I'm wearing it definitely!
Kestralgurl, so glad you have a good place to fall in your own place of employment. I agree margaritas are de riguer with mexican food. I used to love to eat at this place on Grant--can't remember the name but Bill Clinton ate there in the 90s and had a chimi, I think.
I'll see if I can't load up some photos from our hike yesterday. How do I do it? I've never posted them in a thread before.
I am hypothyroid and have been taking increased doseages of levothyroxine for at least 10 years now. I didn't know of the link b/t bc and thyroid. Going to see this naturopathic oncologist tomorrow and you can bet I'm asking him about this.
Hugs to my lobulitas and welcome to the newbies. I wish we all lived closer so we could have a real get-together soon, because I feel close to all of you already!
Claire
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Claire,
I have no idea how to get a picture in here, I just tried and didnt figure it out. I feel the same, wish we werent scattered all over the country! If there comes a day to get togethor count me in I will be there!
Kestrelgurl- Great news on your job stepping up. I hope it is helping to releive some of the anxiety caused. Doesnt seem right that an employer can do that with only 1 year left till retirement.. our country is not what it used to be in many ways.
I have a goiter also with 2 nodules.. There has got to be a connection with so many of us with Thyroid issues. I am going to ask tomorrow to see my rads mapping. I want to know how close its coming to the thyroid, lungs and ribs. I am BC on right so I am not in fear for my heart. Tomorrow is Day 1.. Mark is going with me which makes me feel better already. Keep telling the kids I am going to the BBQ'ers.. Havent seen AmyinMI this weekend but she also is due to begin tomorrow. I know my nerves will have me walking in a scared mess, but I will walk out a Lobulitas Warrior!!
xo
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I could copy and paste this but it didnt work for a picture. This is from I think Gail that mentioned "breast cancer, but doctor I hate pink" on FB, thank you for sharing that I am enjoying reading her posts. If any of you are on FB send me a friend, I am Lemon Courey there. I have not come out on FB, I do more reading there than posting.0 -
Hi all!
Lemon, I'm with you! I go in at 10:30. I can't wait. I'm going to think of it as laser tag. Gonna go zap the bad guys. Sounds more fun. And I think my 7 year old would approve. ;-) I'll look for you on FB. We could easily arrange a visit. I'm an hour from Toledo. :-)
Kestrelgurl, I'm so glad your job is helping you out! And that they'll give you insurance!
Happy St Patty's Day! Yes, I'm wearing green. :-)
Hugs and love to all Lobulitas!0 -
Lemon and Amy good thoughts and vibes coming your way for your rads tomorrow!
Kestrelgurl, sorry about your husband and his job situation. It sounds as if you are in a very good place with your job and very fortunate to have such a caring employer.
Claire, I would be very interested to hear what your naturopathic oncologist has to say. I would like to go to a NO, but there are not any around here where I live.
Momine, you live in a beautiful place.
Wishing everyone a good week!
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Hello everyone! I would love to join this group. I was diagnosed with ILC in 2011. March 25 is the 2-year anniversary of my diagnosis. Tamoxifen has been making me slightly crazy. I have had a lot of problems with insomnia, hot flashes, fatigue, and weight gain with bloating. Anyone else struggle with trying to lose weight?
I had to have an endometrial biopsy a few weeks ago. The pathology report came back clear (yippee!) but I have a feeling it won't be the last biopsy I have to have. I also have ovarain cysts now. Anyone else have ovarian or uterine issues after a diagnosis of ILC?
I am reading all of your posts. What a great group of ladies! I hope I can offer some support and words of encouragement. Have a great week everyone.
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Deelaw, when I was diagnosed, they also found 2-3 huge fibroids in my uterus. Because I was close to menopause anyway and my mother has had ovarian cancer, we decided to raze the whole business. I still have my cervix though.
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Hello Everyone,
May I join? I was diagnosed with ILC four days ago and am still trying to get my head around everything. I think I may still be in shock. I'm 46 and had some benign cysts removed ten years ago - but nothing else until now. My MRI is scheduled for Thursday and I have to admit I am a little freaked out. Just reading the other posts here makes me feel better. You are giving me a ton of information - so that I can be ready with questions I never would have even known to ask.
I'm so new to this all, please forgive me if I don't have all the lingo down yet. The decisions, the medications, the receptors, the positives, the nodes - it's all got my head spinning. Fingers crossed and thank you.
Kay
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Kay, welcome and sorry for what you are going through. Everyone will tell you that the first weeks are the most hellish. It does get better, slowly, slowly.
Any questions you have, we will do our best to help.
Lobular is usually ER+ and usually grade 2 (that is the agreessiveness scale, not the stage). It is good that they are doing an MRI, the more info the better.
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Hi y'all. I was diagnosed with ILC in June following my PBMX for LCIS. My ILC was very small-wasn't even picked up by MRI the week before my surgery. Other than the BMX, my oncologist is not recommending any further treatment. I was ok with that in the beginning because i just wanted to move on with life, but now I'm starting to wonder if I should have pushed a little harder. Still trying to navigate all of this and still finishing up reconstruction .
Thanks for sharing your stories.
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Lori, hi and welcome. How old are you? Your cancer was indeed tiny, but I would probably ask for a second onc opinion somewhere just to be sure. I would think some oncs might want to put you on hormonal therapy.
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