MIDDLE-AGED WOMEN 40-60ish
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sherryc - We'll have to have BIG parties for our 50th!! Mine is 10/9, so I'm hanging onto 49 for a while longer.
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Hi everyone- I got my results today and I really just want to wake up from this nightmare. I am llla, all 4 nodes positive, they found IDC, ILC, DCIS, AND LCIS through out all the tissue that she took from the lx. Both the bs and MO said they have never seen anything like this. I am flipping out right now. I don't know how to comprehend all this crap. I am seeing the ps tomorrow and scheduled for a bilateral mx on 4/11 and 4 months of chemo followed by radiation. None of this showed up on the mammogram and only the IDC showed on the MRI so there monitoring me doesn't make me feel warm and fuzzy at all. The bs is going to have to remove all the other nodes as well. I am so bummed out. I can't believe this is really happening to me. I know there are others that are worse off, but it still sucks!!!
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Happy Birthday Meece!! Hope you had a special day!!!
Dianarose - I am so sorry.... I wish there was something I could say or do to make you feel better...Just know I am here for you regardless.. And yes, it sucks!!!! (( hugs))
Welcome to the newbies.I hate that you have to be here but am glad you are.. Feel free to vent, rant, or ask any questions if needed. You have found a great group of ladies who are incredibly smart.....
Off tomorrow for a weekend at a little farm in the country. Have a good weekend ladies!!!
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Dianarose ,I am so sorry ..I dont know what to say {{HUG}} that is why I chose PBMX and not monitoring ... I am on April board for mx if u wanna come over and we can all support each other ... Luv ya girl....
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dianarose, i am so sorry about your pathology. one thing i know FOR SURE is that coming here and being supported by everyone was/is the best thing i did during my scariest and hardest times. stay hooked in here and we'll hold your hand all the way through everything. ((hugs))
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Dianarose, I'd like to say "it's alright" but I can't because that is some really crappy news. Girl, you got just about everything! If they end up finding IBC, you will have a BINGO of all five Dx's. (How can I joke at a time like this? Sorry. It's just the way I deal with it all, and no you do not have IBC because that is quite noticeable.) That's just awful, not only having the cancer and pre-cancer throughout BUT THE SURPRISE that it was THERE after hiding so well on the diagnostics. What a shocker! The world must be spinning for you right now.
Since Barbe is not around right now to write it, I will: You don't have to be brave. You just have to show up. (And know we are with you all the way.)
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Dianarose, I'm so sad to hear of your dx. The only thing I can think of on a positive note is that now they did find it and can get you on the path of proper treatment and aim toward healing. Oh Girl I'm there, holding your hand, giving you big warm hugs and we will all do our best I'm sure to support you through the process of kicking this stinkin BC to the curb. Kitty
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Dianarose- So sorry to hear your news. At least you will now be on a path to healing. Please post on here whenever you want or need to. We will all be thinking of you. Hugs.
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Dianarose, all I can do is send (((((((((hugs)))))))))))). I agree with Kitty, now you can move on to TX and show this stupid BC who is boss!! And you can always count on me to bring by a cute cabana boy to cheer you up!!
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Dianarose, your news sent a stink all across the country! I'm gettin wafts of it now. Please hold on tight to this website & this thread in particular-we are here for you!
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Dianarose ~ Somewhere along in your results post, I saw the letters ' bs ' & until I read further, I was reading it as " bullsh*t" until I realized you meant breast surgeon. I was thinking bullsh*t that this was all happening ......
Please know this is your soft place to fall, okay? I, as everyone else, am here for you, day or night.
HUGS!
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Dianarose-- I am so sorry about the pathology report. That must have hit like a punch in the stomach. Of course your world is reeling, that's a lot to take in. Remember that we will be here for you 24/7. I will be praying for you, this part of the journey is very stressful, confusing and frightening. Do you have someone who can go to the doc appointments with you, to take notes and help you remember everythinbg? That is a big help. {{{{{hug}}}}}
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Dianarose, I'm going to put a different spin on this. Think of the LCIS as the seed, the DCIS as the rooting of the seed and the IDC as the cancer starting to grow. That's kind of how it works anyway. So what it boils down to, is that they caught your cancer developing. They caught all the stages before the IDC got in total control. That might make you feel a bit better, I don't know, but it makes sense to me.
So, in effect, you have ILC and IDC which will be treated the same anyway. Having all those other initials just makes you look like a smarter survivor!!! Kind of like being able to put MBA, PhD after your name...eehehehehhehehe
(elimar stole my thunder so I had to come up with something else)
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Dianarose - sorry that you got such a crappy results. Know that you have great support and prayers from everyone here. I think that barbe's explanation makes sense and hope that it does give you some comfort also.
((hugs))
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Dianarose - you definitely got the alphabet soup DX and I'm so sorry, but if this is the bottom, you can only go up from here! We'll be here for you throughout....
Barbe - as usual, your analogy is spot on. GREAT explanation.
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Thinking and praying for you dianarose. Know that the gals here will support you anyway they can. They were a huge lifesaver for me as I went threw all of this. Post whatever you need, someone will be here to get you thru it!
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Dianarose so sorry for the crappy knews that you got. Wish I could make you feel better. My breast also like to hide things so I am not comfortable with monitoring either I am having a BMX on MOnday for that very reason.
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madp, I like that term "alphabet soup" Dx! I think I have heard that when people have those multiple degrees after their names too.
Dianarose, Like Barbe said, you are gonna have one heck of a Dx line. As you roam around this site, you will come across others now and then with a whole slew of B/C types. There's a few of you out there.
Ooooh, lookie, lookie...Paula66 and Ceez have new avatars now...la-ti-da!
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On the subject of different types of cancer...
When I got my biopsy, it said IDC with Lobular features. I never really had that "Lobular features" explained adequately, was told it wouldn't make treatment different, and by the final pathology, Lobular was never mentioned again, although I had a small bit of DCIS. Unfortunately, I was not a member on here until after my surgery, so for that time, I wasn't sure if I had one or two things going on.
Has anyone else had a confusing biopsy like that? Or know what IDC with lobular features is?
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Eli just had to show the new do off minus the chemo curls, lol! I for whatever reason hung on to those curls as some kinda security blanket, weird I know but thats just me. I finally said enough was enough and wanted them gone.
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IDC or ILC (or IBC) always trumps LCIS and DCIS so those get dropped from your info. Same as the ADHP that most of us would have had as we developed our cancer.
LOVE the new avatars!! Noticed Paula's but Ceize slipped by me..looking good ladies!
My pic is from last Easter, so I'm going to get a new one this year. I like seeing the progression of "me" in my profile pics. I'm a big girl now!
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Ceezetheday love your new avitar
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Hi Everyone, thank you all for the love and support. It makes me cry. I am trying to pull myself together today as best as I can. I went to see the ps this morning and I really liked her. I will be getting the expanders when they do the mx and she said that the left breast that had the radiation yrs ago was in good shape and not going to be a problem. We are even going to go a little larger than my almost b cup.
I do need some input from who ever can help. One is one the lymph nodes. They want to go in and take the rest. I am freaking out about it. I asked if they could radiate them instead and she said I need to talk to the MO about it on Monday. Is this even an option or is it worse than having them removed??? I am right handed, work as a pastry chef, and I do oil paintings.
The other thing is about the oncotype dx. I know they don't want to do it if there are more than 3 positive node (the 4 she took were all positive) but my thinking is cancer is cancer and if the test will tell if it will even respond to chemo what the hell do the nodes have to do with it??? I could potentioally go through chemo and it do absolutely nothing for me other than cause me to be sick and lose my hair, eye lashes, etc... Can I insist on a test or will they just down right refuse me.
They sent a sample out for the ILC to be tested to see if that one is ER positive as well as the IDC. I won't know that until the end of next week
I really appreciate everyones help. I want to have as much information as I can before I committ to anything.
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Dianarose--you can certainly ask for the oncotype test, but your insurance may not cover it. I don't know how much it costs, but it may be worth it to you to pay out of pocket. Research shows no difference in the length of time to recurrence or death if the lyphnodes are all taken out or not. The biggist reason the lymphnodes are taken is to help with staging. So having that done won't change much for you, so you may want to talk to your surgeon, med onc and a radiation doc before making a decision. There are side effects to both the surgery and the radiation, and both leave one at risk for lymphedema. Find out the long term effects of both procedures before you make up your mind what you want to do. Getting all the info is best thing you can do for yourself. Keep asking those questions!
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NativeMainer- holy crap batman--- I just looked up the cost of the oncotype dx and it is $3975.00 but the site said they do have some financial assistance. It is still cheaper than chemo if the score is low. I don't know or feel I can trust all of the doctors involved. After all it is how they make their pay checks.
Another question- if the cancer that is in my lymph nodes(which is the ILC) is ER positive will the tamox help in the nodes as well or only in breast tissue? If we can block or starve it in one place does work the same somewhere else? I really didn't have any tumors so to speak. It was like someone took a pepper shaker and sprinkled the breast tissue.
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dianarose, i think that if you're lymph node POSITIVE, the oncotype dx is not for you. here's a website for the test:
http://www.oncotypedx.com/en-US/Breast/PatientCaregiver/IsOncotypeRight.aspx
i was eligible and my insurance (medicare!) paid for all but $10. your insurance might pay, but, of course, i don't know. you haven't included all your information about your diagnosis, so it's hard to know what's going on, but personally, i would think that with 4 positive lymph nodes, chemo would be recommended. that's just my opinion, though. if you're HER2 positive, you'll be doing herceptin and it has to be combined with chemo at first. i might have missed something in the posts, and if so, i'm sorry.
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yes, my understanding of the onco testing is that it's for node negative.
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Dianarose, I still have problems holding up my left non-dominant arm for any length of time. That's where a couple nodes were taken out. I can't imagine how much worse it would be if they took a whole tier of yours! (Apparently, most people have 2-3 "tiers", each holding approximately 9 nodes) They should leave SOME nodes in to handle lymph fluid. Otherwise, your odds of lymphadema go from 30% to 100%!!!! There has been a LOT in the "news" lately about nodes. Don't let them take them out unnecesarrily!!!
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My MO said it could be done with 3 pos. nodes or less. I guess what I am trying to say is what difference do the nodes make when it comes to the testing to see if the chemo would help you with the cancer. If I did not have pos. nodes and had the oncotype done and my score was 4 they would not reccomend chemo, but because I do have positive nodes they want me to have chemo without even knowing if my cancer would respond to it or not does not make sense for me or anyone else. The cancer that is in my nodes is the same that is in the breast so if my cancer was to get a low score how will it help me just because my nodes are positive? I just think they are to quick to put us through chemo without knowing if it will work when we now have the technology to know prior too. I hope what I am saying makes sense. I have learned to question everything now. Our family lost a 3 yr old to brain cancer and found out later that the surgeon who did the emergency surgery was not qualified at all and he is now in jail and was found responsible for the deaths of 5 children including Jeremy.
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Dianarose, I think the biggest factor when nodes are invovled is that it is proof positive that your cancer wanted to spread. If it was in the nodes, it very well could have moved beyond. Not to be scary, here. Chemo is almost a given when the tumor is large, or in your case, there are multiple foci and several different types involved (meaning the ILC and the IDC could have different pathologies,) plus it has gotten to the nodes. Although, like with everything, they don't give any guarantees with chemo, it is another tool to fight B/C with. With aggressive cancer, they are most likely to use all of the tools at their disposal.
Can you fill in your Dx line? Do you know if the B/C is ER+ or not? Her2 positive or not? What is the Grade? All those things figure into whether chemo would be most beneficial too. For instance, chemo is very effective against fast growing Grade 3 cancer. I know it seems arbitrary that the docs are drawing the line at three pos. nodes or less, for ordering the Oncotype test; but I think they have looked at your pathology and based their decision on that already. It is not a question of will the chemo work, but how much benefit you will get vs. the risk. In your case, they already know the benefits would be substantial.
The Oncotype is for B/C of <2 cm, ER+, with no node involvement (or less than three, which is a more recent standard of care.) I'm not sure you qualify on the size either, don't know about the ER status, and for all we know it could be in more of the nodes. I know you hear a lot about the Oncotype test, but it is really a tool for those whose cancer treatments are more of a challenge to get right. The docs are telling you that your chemo is not "questionable." Believe me, you don't want to skip something that can do you some good, as long as you are able to handle it, healthwise.
I know your mind has to work through it. We don't mind answering questions as you go through it.
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Elimar- how do I put in all my info. When I go to my home page and try to edit it only lets me choose one type of bc. I see others are able to write other things in as well. I am computer dumb.
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