Team ILC Warriors
Comments
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Hi ladies- I am the lucky one my friend Jeannie is referring about with the dam ovary issues. My MO didn't think I needed them out. He wanted to give me a shot to keep them asleep. I insisted they go. I sent my path report to my daughter who is a nurse in NC. She had the doc's there go over it. The good news is it is not in the ovaries, the bad news is that it is on the outside of one ovary and one fallopian tube. Now I am a mess wondering how many others are floating around. My cancer has been so small that most of it is only being found once in the lab. I have an appointment at 10 to see what the next step is. These mets were 100% er and pr and the new thing is it is now her2 positive. My breast cancer was her2-. I have an appointment this month to start an AI. I wish they put me on that at the beginning instead of waiting for all other treatments to be done. I know he will want a pet scan, but this f'n lobular doesn't show up for me even with that.
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Kiss, yes, we are neighbors. I don't know if it makes a big difference whether you do 4 or 8 chemos before surgery. As I said, my docs did it the same way your docs are planning to do it.
Paris is pretty far. If you need anything here in Greece, feel free to send me a private message.
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Diana, have them double-check that Her+ thing. I know this was an issue after my surgery and that they had 2-3 labs go over it, before making a final conclusion.
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Thank you, Momine!
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Momine- was the initial report correct or did the results change after the other labs took a look at it?
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Diana, my biopsy was HER-. Then I had 4 chemos before we did the BMX. The path from BMX showed weak HER+, but when they double-checked, they concluded HER-. Since it has serious implications in terms of treatment, I would want to make sure.
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Hi Ladies,
I am posting on this thread for the first time, I think. I was diagnosed with ILC 4/29/2013. I have had two lumpectomys and port planted for chemo-see the oncologist for the frist time on June 14. Reading through your posts I am now wondering if I need to be worried about my ovary and uterus-One ovary was removed years ago along with fallopian tube due to an ovarian cyst- I am 68 yro-no one has mentioned having any kind of investigation done other than the breasts.Is this something I need to be concerned about?
Thanks...
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Sarajanevans- my pet showed a cyst on my ovary last fall. I had them removed one week ago today and it indeed was cancer and not a cyst. lobular is sneaky. little bastards.
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Thanks Dianarose : my yearly physicals with my primary the last two years can best be described as sparse at best- I think it has been two or maybe three years since I have had a pap smear- seems I was told, at my age, they are not of necessarily warranted any longer. I have not had any scan other than when I had the dye injection, and today i am not too sure about that one.. So I guess I need to ask my surgeon or oncologist about this too...
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Hmm, I had a cyst on my ovary that showed up on PET scan and subsequent trans vag U/S. They did a CA125 test and the numbers were fine.......do I still have to worry? I talked to my RO (who I really like and trust) and asked her about removing the whole mess, and she suggested that doing so would open me up to other issues.....prolapse, etc.....and that she didn't recommend it.
Now I wonder if I can trust any test!?!?! Scheduled for a chest x-ray and bone density as I made the switch from tamoxifen to Letrozole this morning. Will have a PET again in the fall. Is it possible to be watched this closely, scanned this much and still have sneaky lobular moving around? Sheesh.
My sister was talking last night about an older (80-ish) friend who just passed away. She was diagnosed with some type of aggressive cancer and was gone in a couple of months. I have to say that it might be easier to find out like that rather than this drawn out worry for the rest of my days. Sigh.
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Not to add to your worries, Kestrel, but the CA125 doesn't always catch early ovarian cancer. Also, I believe Diana's cancer on her ovary is lobular breast cancer which I don't think is measured or caught by CA125.
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Hi warriors,
I have a question. Did you make blood test for Circulating tumor cells and on which stage ot the treatment?
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Kiss, I don't think I had that test. I do get tested for tumor markers, however.
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Kestrel, I don't have any words of wisdom but I'm right where you are worry wise. I was tested CA-125 2x in about 3 months (not because there was any suspicion: my gyno tested me and then my naturopath did as a work-up) and my markers were low low low...they said.
Now I wonder if I should have MY ovaries out....I asked my MO about this before, and she said no. I'd like to know how other ladies have faired with their ovaries removed, those either taking tamox or letro.
In addition I'm very ambivalent and apprehensive about my upcoming surgeries. Really? I have to be physicalized (my own word for being touched, poked, prodded, incised, de-sized, etc) by multiple doctors and nurses and technicians all over again?
Kestrel, let me know how the letrozole journey goes. I'll be switching soon myself.
Hugs to all
Claire
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I would never have my ovaries out...causes a host of other major problems...this is what my onc had said...
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Claire, so far I have had no special symptoms from having the ovaries out. I have some problems, but those are because of the sudden menopause, augmented by letrozole.
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Joellelee,
What problems did he mention? I'm curious...
Claire
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My onc had said it could cause heart problems, dementia and parkinsons possibly...we NEED some healthy estrogen in our bodies...it's unnatural to deplete it...we just need to balance it. Which is what i am trying to do with Dr. Wong...here is a quick article I ran across, haven't researched it completely as it's just my personal decision/belief and not something I really want to debate...
http://www.sciencedaily.com/releases/2007/08/070829162824.htm
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I've heard that hysterectomies do cause a host of problems (including heart disease as we both mentioned), ovaries in or not. That is why I chose to have two myomectomies for fibroids over the years instead of a complete hysterectomy. Vaginal prolapse is a painful and horrible thing (my mom has it). Of course I had the myomectomies before I was dx.
My MO says I shouldn't have my ovaries out...and I'll have to trust her. I trust sciencedailynews too; thanks for sharing.
Claire
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But against that is fact ILC can go to ovaries and lurk undetected.........i still have at least one ovary apparently but nothing shows up on MRI.....I would feel happier withoutbthem but do have same belief as Joellelee that its hormone balance that matters and we have good and bad oestrogen......we need the good
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Jeannie,
Thanks for the information. No worries about adding to my worries.....I think I have used up my quota already.
I am working really hard at doing the research needed to manage my condition and care, but also not wasting time and energy on things that don't improve my quality of life on this day. One thing that my diagnosis has done for me is to help me truly commit to enjoying every day I get. For that I am very grateful.
Cancer is random. Life is random. All I control is my emotions and response.....better to be happy.
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"I am working really hard at doing the research needed to manage my condition and care, but also not wasting time and energy on things that don't improve my quality of life on this day. One thing that my diagnosis has done for me is to help me truly commit to enjoying every day I get. For that I am very grateful.
Cancer is random. Life is random. All I control is my emotions and response.....better to be happy."
Wise words from my Southern Arizona sister, Kestrelgurl. hugs.
Claire (girl from the North Country!)
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Kestrel, wise words!
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Hi ladies,
I was initially told on the 4th of this month that I had IDAC but the full path showed I have ILC when it came back on the 6th. Talk about switching gears! The MO (whom I did not like) that BS #1 sent me to, told me the news needless to say that was not a good appointment. Just one of the lucky 10% I guess! It was after that appt. I decided to get a 2nd MO and after I met with my PCP and his wife who had BC and treated 2-3 years ago, I decided to get 2nd opinions for everyone.
I also felt that although very helpful both emotionally and knowledeably I wanted to see the other 10%'s view. So I searched ILC and found you guys. I was playing catch on all of your posts, but quickly felt that I had to respond to Lemon's post on her MRI. So please forgive me if you've already talked about this.
The 1st BS I went to ordered an MRI. I have to say that an MRI is good place to start but now think that it is not the be all and end all for gathering information that I was first lead to believe.
So I'm putting this out there so you ladies can tell me what you think. Maybe I'm in denial about being emotionally ok and am still in freak mode. Who knows for sure about anything these days right?
If you ladies would be kind enough to help me out with some advice on this I'd really appreciate it. Here goes, would any of you feel secure with some guy you never saw before read you your results stating and I quote " some people have glandular tissue which makes it difficult for the MRI to get clear pictures through. Unfortunately you're one of those people, so we are not able to size your tumor from the MRI pictures. Your sonogram shows that you do have a tumor so we have the size from that (but I was also told the MRI would be more accurate since you can't see all of the sides of the tumor the sono). The pathology report says it's cancer so we know that something is there which needs to be dealt with." THEN IN HIS MOST POSITIVE VOICE, he says "good news is we saw no new macroscopic spots on the left or right so it has not spread."
Now I'm not the brightest bulb in the bunch nor the quickest for that matter. And in my defense, I'm really trying to look at things positively so not to worry more than I already have and am. But I have to admit that the news did not sit well with me. But my friend who took me so I could be looped on xanax for the MRI, said that's good news they didn't find anything new so I went with it. At least until what I now call the b*tching hour (middle of night when brain races faster than your heart does after an hour at the gym) when it dawned on me if you can't see the supposed 1.2cm elephant in the dang room, then how can you possibly expect to see something macroscopic and then tell me it's a good thing? I just don't get it! I feel like they're telling me one thing but thinking another and hoping that I don't call them out on it. Just give me the dang info straight and let me process it accordingly. They're dealing with someone who has BC NOT with someone on the dang ledge ready to jump. I won't be plunging off some building, but I WILL be jumping intomthis fight head first kicking butt and taking names!
Thanks for starting the 10% Club! I've always wanted to be in the top 10% and never made it in HS or college but look at me now! Woo hoo!...lol If we can't laugh at the irony who can? I'd much rather laugh than cry. Besides crying jacks up my sinuses and usually gives me a monster headache and I really hate a monster headache!
Sorry about being long winded, but THANKS for listening!
Hugs
Mo0 -
Molinda,
I COMPLETELY understand your frustration. My ILC did not show up on mammograms or ultrasound scans. Once I did have an MRI it showed a tumor of about a cm and a half. And no node involvement. Biopsy came back grade 1 and with no node involvement I was looking at stage one. BS suggested lumpectomy and radiation and to just "closely monitor" the breasts in future. I initially agreed but at the last minute decided to have a double mx.
And thank God.
Final path , not one but three ILC tumors two of them more than 2 cm in addition to some in situ. None of which was picked up by MRI. Oh and that "no node involvement" that the MRI indicated? WRONG. annnnnd now I'm in the middle of chemo. Then they were telling me the good news is there was nothing malignant found in the other breast. So yeah I could have kept that one and just constantly ( every three months) monitored it... But with what??? The same technology and equipment that didn't show even half of what was going on with me?
Lobular is a sneaky bastard. Be ready for that sucker.
Kay0 -
Hi Molinda,
I too understand your frustration. I had an MRI completely miss my 6cm ILC tumor because of exactly what your tech said to you. I was sent on my merry way telling me to relax and have a glass of wine because nothing was lurking there. I am still dealing with anger from it all, but it taught me that I cannot rely on scanning technology. I have to go with my gut and sometimes, for me, the invasive tests and agressive treatments are the only way I get peace of mind. Sending good wishes your way! I would actually have liked to have had a doctor or technician tell me that MRI's aren't always reliable instead of being told that it was the end all/be all and would show if anything was there.
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Molinda, unfortunately your thoughts at the "bitching hour" [may have to steal that
] are on target. Going into this cancer rollercoaster, I had some vague idea that modern medicine had all these fancy scanners that could detect anything and everything. Well, not so much. They can see a lot, but there is also a lot they can't see. ILC is notorious for being difficult to nail down.
With me, the cancer was quite advanced, and they could feel 2 lymph nodes being enlarged, so they assumed I had lymph node involvement. However, no nodes showed on any of the scans. Of the 2 they could feel, one turned out to be benign, but 6 others that could neither be seen or felt had cancer in them.
Point being here that in the beginning this freaked me out completely. Then somewhere along the line, I decided that if nothing can be seen and I have no symptoms of anything being wrong, then for all practical purposes, I may as well consider myself cancer-free until something forces me to change that sunny outlook.
As far as the docs, they all have their faults. Try to find someone you can communicate with and that you can trust.
Where are you at this point? Did you have a biopsy or a lumpectomy so far?
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Kay, Wow your experience certainly strengthens my initial gut reaction to do a BMX...still waffling between a SMX & BMX. I totally agree with you about a lumpectomy, it just doesn't give me anything to feel good about. I really don't want to wait for results and then turn around and be told that I have to have an MX after all. And the fact that ILC is so sneaky does not leave me feeling warm and fuzzy about anything.
Kar, So you were told not to worry, so what tests were you able to trust? How did you find out that you actually did have a tumor and why did your doc do pre-chemo, it's size? I'm assuming that you knew how big it was before your BMX, so what test told you? This is all so new to me so forgive my ignorance.
Momine, steal away with my compliments! So far I have had a mammogram and sonogram, biopsy and MRI. They don't think my nodes are involved, but from what I have been reading, their guess is as good as mine. So yes I am now aware of the tests' and the doctors' shortcomings. But I will NOT be told by anyone that if I choose to have a BMX that I am going overboard and making an emotional and irrational decision, no matter how good his dang credentials are! Who does he think he is? It's not his breast much less his life nor his decision or future, it's mine! I am claiming God's promise trusting that he will lead me to the correct doctors and choices. I think as soon as I can get some real answers to make my decisions with, the better I will feel. At least then I will have a glimpse of what I am dealing with and can then make a plan to get rid of this monster within.
Thanks to all of you for your advice, it helps to hear what others have experienced and learned. The more informed icam the better.
Mo0 -
Molinda, the first surgeon I saw flat out refused to do a BMX, because "they could just follow the good breast really carefully."
The next guy told me that he was honor-bound to tell me that there is no evidence that doing a BMX improves survival, but if I wanted it, he understood and would do it.
So, we did it, and there was stage 0 lobular in the other one too, along with all kinds of pre-cancerous this and that. Other doctors have STILL told me that what I did was overkill and unnecessary, because the LCIS might never have turned into anything. Although that may be true statistically, I really doubt it would have proved true in my case, since I had already earned my cancer-growing credentials.
It has to be said that my cancer was more advanced than yours, we knew ahead of time that there was mostly likely node involvement, even if we couldn't see it, and there was no chance of saving any of the "bad" breast. So my starting point was the certainty of an MX on the one breast anyway.
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Ha! I understand what you're going through. The docs assured me my nodes looked great from scans and even lumpectomy and BMX but pathology showed BIG cancer in three nodes on the cancerous side. Thank goodness it hadn't broken out of them. Even pathologists can screw up, though. Both my lobular friend and I had to have things run through twice because of confusion. Her tissue was mismarked as someone else's! And we go to a renowned cancer center. Still, I trust path more than anything else.
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