Team ILC Warriors
Comments
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I wouldn't put too much faith in the CTC test. My old onc was having me do it the past couple of years which always came back zero. But I switched doctors and he was the one who told me he thought it was an expensive and worthless test. He said he had a patient full of cancer who was on his deathbed. The test came back zero. So my onc said unless the cancer cells are secreting whatever that test is looking for...you can have a false negative. I stopped doing the test b/c it was one more thing that just caused me anxiety while waiting for the results.
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Hi All
I cannot tell you how informative having all of you here has been for me. I love reading all your posts. I have some questions, I am curious about.
Is anyone brca +?
Is it rare for Stages 1-2 to have mets? I understand the process though Lymphatic invasion/nodes, I now understand this also can happen through the blood stream. Is this rare? I am so nervous regarding the MRI w contrast I have to have. The MRI showed only a bulging disc, so it is scaring me they now want it with contrast. I know better to be safe than sorry but this is eating me up inside.
I have never felt so in tune with my body. I feel like I know every hair on my head. I am so much more aware of ever twinge, ache and pain than I was before. I am sure they were always there, I was carefree and just didnt notice. Do you all feel the same?
Specail Welcome to hbfry101- I am glad you found us. xo
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hbfry101, I am so sorry about your recent diagnosis. I know how hard this time is for you. We all do. When I was first diagnosed I wanted everything done right then. I am now glad that I had great doctors who didnt allow me to rush decisions. Try to breathe and think positive and trust your doctors or find doctors that you do trust. Try not to google much. This is a great forum with alot of info. Hugs,
Galsal my progesterone was higher too. I havent found any info on how to lower that. It is definitely not treated any different.
Love everyones' posts and support. I was curious if anyone with ILC has mets to the stomach or intestines?
Hugs
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it sounds like we're definitely a minority, Melmcbee, but certainly not the only ones. That's nice to know too.
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Lemon - it is normal to have MRI with contrast if you want more detail - I had 3 protruding discs a few years ago and did 2 years intensive physio, now have no problems.....so klong as i keep up my exercise routine so the little muscles around the spine stay stable
The CTC tests I am having are different as they don´t look for specific cells, its a fairly new thing to measure levels of whatever cells are there.......sorry I don´t know how to explain it better but I chose this type becuawe of the problems your doctors identified and tumour marker tests are too unreliable too
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It's always interesting to see how differently things go for each of us. Lemon, a bulging disc and an MRI with contrast is wanted. Me, multiple bulging discs and no Contracst is wanted. I guess that may well be since they were there before BC which we know from prior Xrays and MRIs.
Lemon, I've faith all will be well!
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I too welcome but am sorry to have to welcome those of us who have joined the ILC sisterhood. Talking to all of you makes me feel better, though.
Kestralgurl, I am in Flagstaff. I had rads 10 months ago--the first three months post rads were okay--then like you I began to feel tightness on my right pectoral muscles. I go to bikram yoga regularly, and stretch before class--lying on my back extending my arms down at my sides and then bringing them all the way up slowly over my head. Then I bend my arms at the elbow and do the same thing, slowly, inch by inch. it helps. I also noticed like you that I have some slight puffiness at times on my right side--no one else would notice but me, but my bra indententations tell the story on that side vs. the other--and used the lymphatic massage I learned at p.t. last summer and it worked great. Almost immediately in fact.
question for femara vs. tamoxifen: my MO started me on tamox last April because at the time of dx I was premenopausal. I went into chemopause. I had my hormone levels checked last July and found that I was definitely menopausal. should I have them checked again, and then argue for femara? I see my MO next month.
Claire in AZ
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Claire, how's all that snow? We even got an inch or so in the middle of Tucson. Weird! I spent 20+ years in Show Low and my daughter graduated from NAU. Used to do a lot of racing in Flag.
As far as the Femara, I would definitely ask about it. Everything I am reading says it is most effective against ILC. I am hoping my estradiol levels stay down so they can switch me.
G
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Hi Ladies,
I'm an ILC survivor from 2006. I had stage1, ILC with clean nodes, ER+, PR-, HER-. My treatment was a lumpectomy, Sentinel Lymph Node, 34 radiation treatments and Tamoxifen. I had a local recurrence in 2010 which required dose dense chemo followed by a double masectomy and Arimidex. Since then I have been doing great. Like the others have said, ILC is slow growing which is in our favor. I plan on surviving for another 20 or 30 years. I'm working full time and planning my only daughters wedding in July. Life is GOOD:)
Take care,
Nancy
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I'm another ILCer and from Australia.
I had both ILC and IDC in the same breast, which was a bit hard to take in at first. They found the ILC after I'd found a lump myself. I was due for my 2 yearly mammogram and wasn't stressing too much as another lump had been found 8 years previously by mammo and turned out to be benign. I thought this one would be too.
The lump turned out to be IDC grade 3 and very aggressive. But while doing the US, they found the ILC, so a lumpectomy for me was out of the question, had to have the mx. I did ask my bs to take the other breast too, but he talked me out of it. I wish he hadn't, as I'm always worried it will come back.
I'm 2 years past my final chemo, although only 1 year post herceptin, and I'm feeling pretty fantastic. I was originally on Arimidex for 14 months and that was 14 months of hell, now on Aromasin and it's treating me well, with very few se's.
There aren't a lot of us ILCers around, and there are even fewer triple positive ILCers. My ILC wasn't HER2+ although my IDC was. There's another lady on these boards from Australia who'se ILC was triple positive.
Trish
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Hi Warriors! I just received my pathology report and I'm hoping you can give me some insight. I'm waiting on the final report so I may not have all information.
I said earlier it's ER+, PR+, ki67 - borderline
ILC measuring up to .6 cm, Nottingham grade 2 involving smaller tissue fragment. Can anyone help me disect this? I had an MRI and it shows 2 more spots on the same breast & leftie is looking a little suspicious too.
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Lobular is normally grade 2 when found but for any real info then you really need the full report - for instance KI-67 should have a number not just say borderline
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Thanks, Lily! It says 15%
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hi, everynone glad a new thread was started for ilc sisters. I too was diag. Nov 2012 one more taxol tomorrow. if platelets behave! than reconstruction in one month....and rads for 5 weeks bc was in one breast opted for bi lateral mast.....this is one sneaky type of bc....but very curable thank goodness....stay strong everyone....we will beat this and go on to be normal again!
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A big hug and warm welcome to everyone new to this thread! Hbfry, I'm so sorry to read of your recent diagnosis. You are a warrior! Lukefrancis, wow! One more taxol treatment! I find out if I'm going the chemo route on Friday. That's when I meet with my oncologist to discuss the oncotype test result. I'm a ball of nerves! But I'm ready for whatever comes my way. I remain inspired by all of you wonderful women!
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Our group is growing! I am glad those new have found us here.
Amy- I am a ball of nerves today too, yesterday just as bad. Waiting on brca results..tick tick tick.... just torture!
Galsal- Everytime I see your smile in your pic I smile. Thank you for your kindness and that smile!
hbfry- My BS doesnt check for ki67, sorry I reply to that. As Lily mentioned I think grade 2 is normal.. my BS says I was "moderate" for growth. You will feel better with each peace of the puzzle.
Thank you ALL.. BIG (((HUGS))) Warrior sisters..
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Claireinaz-hi it does sound like things were similar with us.
The reason i was considered such high risk is because of the amount of cancer i started with and how much it spread. Apparently they cannot give me a "your cancer free" even after treatment because of this.
The cancer i had 9.2 cm tumor in breast, 17 positive nodes, 1 cm tumor in node, 2 cm in node, nodes burst and leaked cancer to a very large amount of tissue(hope i am explaining it right) and my slow growing cancer that did not show up became very aggressive and grew lightning fast and they do not know why after growing so slow for so very long.
All of these reasons definately make me high risk. I think that even if you have a few of the same as me you may be considered high risk too claire.
Take Care all
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Looks like this group was an excellent topic to be started with so many joining.
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I kept reading ILC old posts, and search the net for answers. I finally thought geez the experts (all of you) are right here in front of me. I am so glad you are all here.
Beth1965- did you have mammograms that didnt detect all that was happening? I see your also young, had you not had a mammogram? Mine of course didnt show mine, I hear that is common. How are you doing now, 1 yr post DX?
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I was just given the diagnosis this morning...grade 2, estrogen +, progesterone +. HER-2 is still pending. I'm scheduled to see a surgeon Monday morning. I'm emotionally fragile, but at least now I'm past this last 6 weeks of living in abject terror of an unknown enemy. I have gotten a peek at the dragon - now, with a lot of help, I can plot its' demise.
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Bari - your stage is more important than grade with ILC as nearly all ILC is grade 2 when found as it lurks and is sneaky and hard to find and often missed by mammogram. Also whether nodes or vascular spread - good luck x
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Bari, you are probably reeling. Try to stay calm and focus on all of the promising treatments for breast cancer. It's very hard at the beginning but you'll see that once you have a plan it I'll get easier. I was dx w ILC 2.5 years ago and thank god am doing fine, taking my Femara daily. Had a unimx, no reconstruction, yet. If you haven't had one yet, get an MRI as ILC shows up better in them. We are with you. Many ILC survivors here.
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Lemon68
Yes looks like we are around same age i was the same nothing showed up on mammograms or ultrasounds. I have been having mammo's for about 10 years (started early my mom had many lumps about 11 all not cancer) and nothing showed on them or more recent. And ultrasound showed nothing. i always feel abit angry when i think about this as my cancer was bulging out top of my beast and no one could find anything- thank goodness i found it on my own.
1 year past DX i am doing pretty good much better than they thought i would. I am still a bit rough around the edges from treament but feeling much stronger and hopeful. As many people say time does help.
Feeling like a WARRIOR
Lemon how did you end up finding your cancer was it you that noticed it
Bari and Hbfry-take a few deep breathes you will make out fine. It is always the scariest in the beginning. As Sgreenarch said MRI's are the best compared to mammo and US
And as Lily said your stage and node involvement etc... is most important for your treatment plan.
Hugs to all
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Beth,
I feel the same way......with the same visible tumor at the top of my breast. You could literally see it from across the room! But the mammograms and ultrasounds showed nothing. Thank goodness that a radiologist eventually saw the need for biopsy.
I had been having mammos and u/s for years that showed dense breasts with lumps and bumps, but nobody ever seemed concerned nor explained to me what that meant. BS and MO told me the cancer had probably been there for 8-10 years! When it finally "popped" it seemed to appear out of nowhere.......woke up one day with a huge wad on my chest.
In retrospect, I really don't know much I could have done differently.......that's the really scary part.
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Kestrelgirl-yes,yes exactly the same as me the very visible lump that could be seen just looking at you. They said my cancer might have been there for 8 years too-crazy isnt it. Especially when no one notices it for that long. And mine seemed to have popped out of nowhere.
One thing i really wonder about -6 months before my DX i had quit smoking (to live longer and be healthy what a joke) my husband and i wonder if me becoming healthier might have actually made my cancer become aggressive and grow like it did. Like my cells etc becoming stronger and whatnot.
Just wondering if you made any lifestyle changes near your time of DX.
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Mine also appeared almost overnight and you could then see a clear distortion in my breast from across a room - I was actually told off by a doctor who said just look at it you can see it across the room, tsk tsk tsk ......and clearly did not believe me that it appeared within a few days, maximum 2 weeks like that!!!
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Beth - Not really, although I was under a ton of stress due to job issues. And I had two back surgeries in the 3 years prior and often wonder if all that got my immune system down enough to let the BC run amuck.
Crazy stuff, huh?
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Hi, Guys,
Since we are a group of ILC women, we can do our own informal survey. This question comes up now and then, but I'm curious about how many of us have/had family members with cancer, even without the BRCA genes. My mom had lung cancer (is a survivor) and my Dad had leukemia and prostate cancer. He survived the first leukemia dx, and died last year of a recurrence, 21 years later. (May have been a whole new leukemia, not a recurrence. Don't know.) The prostate cancer was so mild it wasn't even treated, just watched. My grandfather died of stomach cancer about 25 years ago. Lots of distant cousins w breast cancer, all BRCA neg. They say ILC behaves genetically differently than IDC. I wonder.
Though there's no profit in going down this road, I can't help myself. I feel as if I just knew where this came from, how I got it, I could prevent it from coming back? impacting someone else in my family? I had a meeting w a well known geneticist and she thought I was low risk of having gotten this genetically even though there's so much cancer in my family.
So then I go down the environmental road and there I find the probable answer...my Mom took DES when she was pregnant with me. Raises the risk for breast cancer for DES daughters between the ages of 40-50 (that's me) by I think, 50%. Of course, don't blame Mom. She took the meds her dr prescribed. But I was awash in hormones in the womb for most of the pregnancy. Can't prove any of this, but it sure makes me angry. One of the reasons, I guess, that I am so careful now with food. No pesticides, hormone free dairy and meat. Control what I can. Shrug my shoulders about the rest.
Thanks again for listening.
Shari
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No history at all really. 4 Siblings and no cancer. I am the "healthy", athletic one and I get BC and Non-Hodgkin's Lymphoma.
Have no idea wtf went wrong....
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I am the only one with any type of cancer at all in my family as far back as we can go. Most family died heart,stroke and old age.
Shari i think it is good tha we can do informal survey as i am sure we all have questions lingering on our minds. I find it interesting to read the answers.
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