ILC one side, with nodes on both sides

BeachyGrl

Hi all, not technically diagnosed as stage IV but I am sure it's coming. Original biopsy was for lump plus one enlarged node near it, both tested positive. They could see others enlarged. Now I've had a breast MRI and they can see nodes on the other side. No cancer that side, but I understand it could still be there with lobular cancer. Have to have ultrasound and biopsy there also next week but I suspect they are cancerous also. I see lots of good things with stage 4, but nobody seems to have extensive lymph node involvement. I'm feeling a little doomed at the moment, even though my oncologist claims I will be around for years to come. Anyone have anything reassuring to say?

BTW, the original lymph node biopsy was supposed to be fine needle aspiration but for some reason the radiologist did a punch biopsy and it scares me that it's all spreading because of that.

BeachyGrl

Sorry, thought I could delete the topic and rephrase. Here's the original post.

Hi all, not technically diagnosed as stage IV but I am sure it's coming. Original biopsy was for lump plus one enlarged node near it, both tested positive. They could see others enlarged. Now I've had a breast MRI and they can see nodes on the other side. No cancer that side, but I understand it could still be there with lobular cancer. Have to have ultrasound and biopsy there also next week but I suspect they are cancerous also. I see lots of good things with stage 4, but nobody seems to have extensive lymph node involvement. I'm feeling a little doomed at the moment, even though my oncologist claims I will be around for years to come. Anyone have anything reassuring to say?

BTW, the original lymph node biopsy was supposed to be fine needle aspiration but for some reason the radiologist did a punch biopsy and it scares me that it's all spreading because of that.

BevJen

BeachyGirl,

Sorry for your situation. I am an ILC person. I had something like 15/19 nodes positive on my L side with my original diagnosis in 2003.(No positive nodes on the R side, but hey, that was offset by the fact that I had invasive ductal on that side, removed through an excisional biopsy prior to my bilateral mastectomy.)

Try to stay calm and just play through all of this diagnostic stuff and see what they tell you. Trust that your docs know what they are doing. They will present options to you based upon what they find. Just because you have lots of positive nodes doesn't through you into Stage IV -- that requires spread outside of your breast area, to other organs. So hold your breath on that one.

For everyone, this testing time is always difficult. Ask lots of questions. Stay off of Dr. Google. And good luck.

BeachyGrl

Hi BevJen, thanks for responding. I just found out my oncotype score was 5, which apparently means chemo won’t help? Can hormone therapy help lots of nodes? Every piece of info I get seems so bleak, even just looking here where people are generally positive and staying off of google. I want to remain positive but I started a month and a half ago with “birads 4a, 2-10% chance of cancer” and then everything was downhill from there. Every. Single. Time. My oncologist said he would keep me around for years when I met him, but I’m honestly not really able to believe that at this point. It’s scaring the crud out of me. Seems like I have worse stats than anyone else I’ve seen here. Hoping there’s hope but still waiting for it to show up.

exbrnxgrl

beachy girl,

You are making an awfully big leap about the extent of your bc based on nodal involvement. Neither of us have a crystal ball nor do our doctors. Deciding that you are in dire straits because you were in the minority of those with birads 4 who did have cancer is not relevant as some folks will fall into that small percentage.

Six weeks after my stage IIB dx, my bone met was found on an unrelated PET scan. The chances of that happening? I’ve forgotten the number but it was under 10% and I’m still here. While having my port installed my lung was accidentally nicked (it did not show up on post op x-ray) and slowly collapsed over the course of 2 1/2 weeks until I had a complete pneumothorax. The chances of this happening? Less than 1% and I had no symptoms! That very same PET scan that found my bone met also found the pneumo.And all of that was nine years ago! Despite being stage IV, I look completely well, work full time and lead a mostly normal life. I am very far from toast!

I do realize that my situation is fairly unusual and I don’t mean for it to be predictive of anyone else’s experience but I think you are getting way ahead of yourself and making a lot of assumptions about what your path might be. It is hard not to project and worry about the future but it is far to soon to start marching toward the gallows. I hope for the best for you and take good care.

Anonymous

You know, there is a reason why this portion of the forums says Stage IV Only and it is asked that ladies who do not have a confirmed diagnosis of Stage IV or are in earlier stages respect that. Frankly I find the statement about "being toast" to be more than a little offensive. I get it, you are scared about the unknowns and the diagnostic process takes a while and when you meet the MO and its always bad news, its easy to think everything will always be bad news. But why get ahead of yourself? What if you are IIB, or hell, IIIA? Do you know what i would give to be a IIIA? To not have holes in my pelvis and three vertebrae eaten away? To not be stuck with this damn tumor, although slowly shrinking, still in my breast?

I am not, however, toast. I get up every day and I work and engage in society. I have hair and most people would consider me to be the picture of good health. There are women further down the treatment lines, or who can't get a treatment to last very long and yet they are living their lives the best they can. They aren't toast either.

BeachyGrl

SondraF, points taken, and I really apologize for the title. I was frantic when I posted it and tried to change it right after I hit the button but I could not find a way. And maybe what you had to say was what I needed to hear. I hate to think I offended the very people who might understand.

I am, as my best friend said, trying to "find my tribe" and they don't seem to exist here. I have scoured the boards for anyone who has had positive nodes on the far side from the cancer and I found ONE person from 2014. Everyone who responded said they had never heard of this before. The girl who posted had a 500+ post count over two years and disappeared from the boards a few months later. This seems so ominous to me, and it's hard to not have anyone to connect with. Add that mine is lobular and even she didn't have the same situation. I feel like I'm out here all alone, even on a board filled with people who have breast cancer. The only one with those parameters. It's scary and lonely.

Again, I apologize for the title, and if you know a way to change it I'd love to.

BevJen

Okay, Beachy Girl, now you've pissed me off too.

I TOLD YOU on my first post that I had a significant number of positive nodes when diagnosed in 2003, and that I am lobular. You just said that no one else was "in your situation." Hello???? Don't I count? And doesn't the fact that I'm still here 17 years later count?

I agree with everything that Sondra had to say. You are offending people now, and you are so into your own situation that you don't even see it. I have NEVER written a post like this on BCO, but I have never seen someone so into their own situation that they totally ignore the situations that other people are in.

Maybe you should move over to Facebook. We respect each other here, and try to support each other. We don't just focus on ourselves.

Peregrinelady

Moderators, can you please delete this thread? The title is disgusting.

BeachyGrl

BevJen, I meant the last post to be apologetic, so I'm not sure where the anger is coming from. I know you don't know me, and maybe I am self centered, but I don't think that's what most people would say. I would love to someday be in a position to help others on these boards. It's what I like to do.

I sure didn't mean to offend you about the nodes. I appreciate the info you gave me. My confusion is the nodes in the other side, and whether that means it is distant spread in the nodes. And what that means for my prognosis. That was the situation I was unable to find. I'm probably not handling this with the grace that I should be, and I am in awe of those who do. My oncotype is extremely low, so I was told chemo won't help. There are other things going on I haven't even mentioned. Most of the time I am flattened with fear that I have barely any time left, and maybe it is causing me to lose track of myself.

This is all new to me and I'm happy to have any guidance and reminders when I'm doing it wrong. I certainly don't think I'm the only one having a hard time here. I respect that there are people out there helping other people along, and as I said, would love to be one of them.

I'm sure not perfect by any stretch of the imagination, but I hope I am not the kind of person you seem to have decided I am. Maybe I AM so caught up in myself that I am missing it. I sure hope not. I hope that some (hopefully gentle) reminders can set me on the right track. To be honest I'm not sure what I did that merited being invited to leave the boards, but whatever it was, I apologize, and I hope as I make my way through this there are other people who don't feel that way.

BeachyGrl

peregrinelady, I apologize again for the title. I tried to change it immediately afterward. Is this possible? Please forgive me for it, I promise it won't happen again. I was completely out of my head and there's really no excuse.

if the mods could change it to “ILC one side, with nodes on both sides” that would be great.

moth

I want to cut BeachyGirl some slack here for her mistake. Don't leave

Mods, can we move this to Not Dx Stage IV but worried? And change the title.

I understand your question is how much more concerning is it that you have bilateral lymph node involvement and only a primary tumor on one side, which has been identified as ILC. I didn't see much in the literature offhand. My temptation would be to ask for screening to r/o mets now. I don't have ILC but have heard time and again it's sneaky so seems to me that looking closely for it would be advised. What is your medical team saying? What tests have you done & what you got lined up?

The other thing is that all of us have unique presentations and our own health/biology so no 2 people are going to be the same. There are some people who have really rare tumors, others who have what appear to be 'run of the mill' but which respond oddly or not at all or respond very well to treatment. I get the urge to find your clan but you're casting too tight a net.

Right now you''re just diagnosed, you don't have a staging, and you know it's ILC. I would stick to reading the just diagnosed & the ILC threads and just soaking stuff in. If you know surgery is coming up, read the surgery threads. If you know chemo is coming, read the chemo threads. Don't try to find someone who matches you exactly. Just read the general stuff and you'll find it applies more than not.

But you've just been singed by the wrath of the stage iv group. Nobody wants to be in our club. If you have to enter it we will welcome you. We are literally dying, but also *living*, month by month, week by week, day by day, until it becomes breath by breath. Nobody else on these boards is, just us stage IV - and right now you don't know if you need to be here at all.

So deep breaths. Wait for your actual staging and diagnosis and treatment plan and then let's figure out how you'll get through it - & you will

ShetlandPony

BeachyGrl, the way to change the title is to PM the mods and ask them to do it for you.

None of us are going to find another member with our exact same situation, and things often change anyway. But there is a pretty definite line between stage iv and all the rest, including worried one might be stage iv. You are asking for a lot of support from people who are much worse off than you are, so can you see why they are getting upset? The diagnosis process is terrifying, and it is perhaps natural to be consumed with one's own situation. But while the stage iv ladies can sympathize, it is not perhaps appropriate to continue asking them to carry your anxiety. There is a reason the stage iv forum is stage iv only, and maybe only the stage iv people really get why that is so, but it is important that we have this space.

From my perspective you have a lot of anxiety, and you tend to catastrophize. This is not a criticism, just an observation. I really think a therapist might help you to feel better. I suggest looking for one who helps people with health problems, and ask about cognitive behavioral therapy.

I think you need to get clarity from your oncologist as to your stage. That will help you deal with things appropriately, and will help you know the most appropriate place to post.

Sending good wishes for you. I answered your PM.

(Edit: Ah, I see moth and I were posting at the same time.)