Just diagnosed with ILC

LoverofJesus

I also wrote in the ILC topic. But I was just diagnosed today. I have appointments already set up for next week.

This has been growing in my body for over a year. I went for a mammogram and it was negative so I thought I was good. But about 5 months ago I noticed my breast changing. It shrunk up some, I had dimpling and puckering, and it was hard and lumpy all over.

I went to a breast dr. He ordered Us and a biopsy and that is how I was diagnosed ILC. I’m so scared it has spread because of how long I’ve had it. I also need any information you can give me on what to ask my oncologist

And honestly I need encouragement!

exbrnxgrl

Hi,

I do not have ILC but did want to address one thing. Most breast cancers have been growing for 5-10 years before they are at a detectable size. Most breast cancers are slow growing. It is no surprise, and certainly no ones fault, that your earlier mammogram was clear. It was simply not at a detectable level. Take care.

Dani444

I am sorry you have to be here. ILC is pretty sneaky when it comes to imaging. It grows in a single file line, like fingers rather than forming a lump. A pathologist I work with told me my cancer had been growing “for years” prior to me finding it. I too had breast changes that led me to my diagnosis. I also had not been getting screening mammograms so who knows how long it was there. The beginning seems to be so overwhelming but I found it did get “better” after getting a treatment plan in place. Definitely keep a list of any questions that pop into your mind. Just a few things I can think of that your MO could answer would be if they are able to do the oncotype or mammaprint test to see if chemo is recommended. Also ask if they will send a sample from the biopsy or will they wait until after surgery. If your cancer is hormone receptor positive ask what treatments will be recommended and for what length of time. I wish you the very best as you move forward with treatment.

LivinLife

Just want to send support! It is true breast cancer is often growing for years before being detected. I've seen that referenced time and again on this site. It is also true that things are so overwhelming at this point and once you get a plan it will help. Focus on each step in front of you and you will get through it. That doesn't mean you won't have emotion about it or some discomfort, etc. though you will get through it. We will be here for you and you obviously have a strong faith so that will help you too....

LoverofJesus

I woke this morning completely panicked. How do I keep from being so so scared.

I know my tumor is large according to my surgeon and I am so scared it's stage Iv. You guys all seem so brave. And all I can do is cry and I'm so scared I feel like I could jump out of my own skin.

I'm so sorry for rambling. But I'm so so scared.

What did you guys do to help you make it through this hard time of waiting and fear?

You are all so brave.

exbrnxgrl

Cross posting from your other thread:

LOJ,

I understand being scared. All of us have been there. What did I do to get through the early days? I focused on reality and what I knew at the moment. I rarely let myself drift into the "What if..." mode as that was pointless and would have only created anxiety. Most importantly I decided not to waste my time worrying about what I had no control over. After all, if I was worried about cancer shortening my life why would I fill my days with over the top anxiety?

Many of us, myself included, have found that taking meds (anti-depressants or anti-anxiety) and some therapy can be very helpful. Your user name indicates that you are a religious person. I don't know the particulars of your religion but is support and help available through your religious connections? Please seek some help and support so you can enjoy life now and not waste it worrying about a future you can't control. It's ok to be sad, mad, etc., but you will need to pull up your big girl panties at some point so you can be an informed active participant in your tx. Take care

KBL

LoverofJesus, I’m so sorry you’re so scared. I’ve had Stage IV since the beginning. The cancer has never been found in my breast. I had a missed diagnosis for six years with no treatment. I’ve been on my current treatment for two years. Eight years with metastatic cancer. I’m still here and still able to function. I hope yours was caught early. I just wanted you to know that my metastasis was not an immediate death sentence. I’m still on my first line of treatment and doing well.

The beginning is very hard. It will calm down a little more once you have a plan in place.

Hugs to you

Beesie

The fear that your cancer might have already spread is a natural fear that we all have upon diagnosis. But what you should know is that only 5%-6% of patients are diagnosed with Stage IV de novo, i.e. they are metastatic at time of initial diagnosis. Because ILC is harder to detect, the percent might be slightly higher for ILC, but in searching I haven't found any studies that indicate this.

So while of course anything is possible, being diagnosed Stage IV from the start is not usual, and having a large tumor does not mean that the cancer has spread. Hopefully your cancer is contained to the breast.

LoverofJesus

Thank you so much Bessie and KBL for your replies. Your information is wealth to me.

Now I have another question.

Thankfully because of where I live I have the opportunity to go to a research Hospital. They have a specialized place for just breast cancer. The place has surgical oncologists, MD Oncologists, access to MRI, Scans, and. Chemo all in one place specifically built and studied for breast cancer. My thoughts on this is that if that is all they see and do and they have access to top Drs because they are a research hospital, would that not be better than just a cancer center that treats all cancer? Would it not be better to be in a place that specializes in what I have??

KBL

I am at a place that does all cancer. I do have somewhere I could go that has a breast center, but I’m not willing to travel to it. The traffic here is horrible. I would say if it’s convenient, definitely try it out. A lot of people say go to an NCI-designated center. I am not at one at this time, but my second opinion is an NCI, and they agreed with everything I was doing and my diagnosis.

AliceBastable

I go to a breast cancer center because it's just a few miles from my house. I also like the one-stop shopping. It's a smallish but comprehensive hospital, affiliated with one of the huge teaching hospitals, so there's some shared medical staff. There's also another teaching hospital in our city with a top gigantic cancer center not far from me, but I didn't feel like navigating something that size.

HersheyKiss

I am seen and treated at a small-ish cancer center (eight oncologists, two oncology radiologists). The doctors also serve as adjunct faculty at an NCI medical campus an hour away. I chose to go to the cancer center as it was highly recommended by my PCP (she has had family treated there, and her best friend is currently a breast cancer patient). It's located across the street from a community hospital where my surgery and procedures were/are performed. It's closer to my home, the commute is a breeze, and parking is plentiful. It has worked well for me.

LoverofJesus

Hello everyone,

Is there anyone with a large mass and ILC? Does really large means is spread? Mine seems to cover my entire breast.

Thank you guys for being patient with me. As I walk out this journey. Your prayers and encouragement are always appre

KBL

Hi, LoverofJesus. Can you explain what you mean by active? Active as in doing things or active as in in the disease department of Stage IV and not no evidence of disease?

LoverofJesus

oh I’m sorry. I mean active on here. I just have not seen many ILC recent members. And that maybe just because I have not seen them. That is why I asked because I wanted to meet more with what I was dx with to be able to ask questions. I didn’t active quite like you meant. I should have been more specific. I’m so sorry for the confusion.

KBL

No worries at all. I was just trying to understand what you meant. I agree, there aren't that many ILC members, but I am one, so feel free to ask me anything. I do have to say I know nothing about a mastectomy, though, because it was never found in my breast. I have occult de novo ILC, not found in the breast, Stage IV from the beginning.

I would think that having a large mass doesn't definitely mean it's spread.

Can you possibly add your diagnosis so I can see it. I’m definitely not a doctor. I just think it would help others to understand your diagnosis as well.

AliceBastable

LOJ, from what I've read on here, ILC cells spread out flat rather than in a cluster, so the dimensions are larger but it's not as three-dimensional as IDC. So it might be 10 cm × 7 cm × 1 cm for ILC and 5 cm × 4 cm × 4 cm for IDC, in which case the IDC is larger in mass. I hope one of our more knowledgeable members will come along with a better explanation. Mine was a mixed type so it probably looked like a blob of melted Silly Putty.

LoverofJesus

Hi everyone. I went to the oncologist yesterday. Really do not know a lot more. I have a a bone scan and a CT in a couple of days and I’ll know staging and stuff then. I am of course still so scared. I feel like most days I can’t even think or breathe. And honestly mornings are the worst. Seems like the only time I get a break from all the emotions is when I’m asleep.

I’m sure this is what everyone goes through when being diagnosed. I just love any support or advice of anyone out there. ILC seems so scary.

Praying for everyone on here

OnTarget

Hi LoverofJesus,

I have ILC. The mass looked pretty big on MRI, but ended up being 3cm of ILC, plus a bunch of LCIS and DCIS and other stuff.

The waiting is absolutely the worst. There is nothing you can do besides research like a crazy-person and worry. I sort of calmed my worry down a little before my surgery, and then I felt a huge relief once I got my BMX! Trying to concentrate on work was almost impossible, and I was also towards the end of a second bachelor's degree and I had to try to get through those classes while my mind kept circling back to cancer.

Once you know more and they make a concrete plan you will be able to feel a little better.

I like to take things one step at a time, and just try to get through each part. In all it seems like a lot, but broken down into small steps they are all do-able.

Sending good wishes!