Diagnosed with 2.1cm ILC, now MRI shows 5cm mass

Starlings

I am so scared. I couple of weeks ago my life was normal, and now all I seem to do is wait for test results. Every test result seems to be worse news than the previous one. It seems that treatment options are being taken away at every step, and I have another 2 or 3 weeks to wait for the next test results.

This week I will need to tell my 10 year old daughter what is going on, and I am a single parent, so it will be a lot for her to deal with too.

I'm not able to function at all, struggling at work, struggling at home to do basic things. Doctor prescribed ativan, but it's not much help. I don't know how I will cope over these next few weeks.

Smurfette26

Thinking of you and sending hugs Starlings. It may not seem like it now but it does get easier.

Lobular is sneaky and it often turns out to be larger than it originally appears on imaging. My largest tumour was thought to be less than 2cm pre surgery but turned out to be 4.2cm.

My children are grown so I have no advice to offer on telling younger children but have read here that there are some good books around. Some major hospitals may offer support groups or social workers that may be of help.

Wishing you the best. Donna.

Optimist52

Hi an MRI can more often overestimate the size. Mine was sized at 6.5 x 6 on MRI but was actually 4 x 3. I don't know why this happens but I've seen several others post about this. It's very stressful at this point but will improve for you when you get a treatment plan.

MFalabella

I am so sorry, waiting is the hardest part of this journey.

Licata519

I just told my kids this weekend. I had to wait until I could get my head wrapped around my new normal, and I treated it as matter-of-factly as I could. I thought they took it okay, I'm only a little worried about my daughter off in college. I needed to know what my plan might be (although I still don't know really) to tell them something concrete.

Good luck. Hugs to your daughter

Scotland219312

I told the parents of my daughters' closest friends before I told my kids, as well as a couple of their teachers. I wanted their support system to be in place before I told them

Frill

All I can say is ILC is extremely sneaky and that I would pay no attention to the initial size. My journey and DX at start had no resemblance to what was found at surgery. DX was a 1cm tumor, and that was 6 months after LCIS DX and 5-6 biopsies. At surgery, I had a 10cm and a 1cm, with some cancer in sentinel node. aka I had cancer 6 months prior.

With very small tumors, there are decisions like do I want a MX or a lumpectomy. Even with the 1cm eventually I decided I never wanted to go through the stress, get rid of this business. I have dense breasts, no history of BC in family. No real history of cancer in family.

My MRI didn't show anything different from initial DX, US didn't show any lymph node involvement.

Huge hugs. I will hold tightly to my crown as reigning queen of longest lasting BC treatment. You'll prolly be in rads before me, if you even have to have it! Sending you tons of good thoughts!!!!!!

Lisa123456

Frill, may I ask how they found your ILC ? Was your LCIS embedded in it and they discovered ILC during lumpectomy for LCIS ?

Frill

I was scheduled for a 6 month mammogram after the LCIS DX. They wanted to do *more* biopsies. They just happened to run across it in one of the biopsies. I took my DX and ran off to the largest cancer center in the country, which is what I wish I would have done when I found out about the LCIS.

Nanpop

Starlings how is everything going? They thought my Lobular was 5 cm from MRI. But after surgery, it was only 3. So the MRI tests are not always accurate.

I accidentally told someone I see very rarely see. She became my closest support person. When I came home from the hospital for surgery, she had dinner ordered in for me. You will be surprised who steps up and who doesn't. I take xanax when needed it's quicker than Ativan. I also drink a lot of camomile tea. It really works

Starlings

Hi Nanpop,

The actual size was 4cm x 3.5cm x 3cm, and sentinal node was positive, so they took an additional 9 lymph nodes. I'm now dealing with lymphedema, and just started radiation last week. Initially the oncologist wanted me to do 4 rounds of chemo before radiation, but then ordered the oncotype dx test, which came back with a recurrence score indicating that chemotherapy would not reduce my risk of recurrence, so at least that's one less thing to deal with. I switched to xanax too - much more effective. My brother flew out to help me for the first 2 weeks after surgery, but now it's just me and my 10 year old again. Most of my close family and friends are thousands of miles away, so it is tough sometimes. I'm so happy for you having support nearby. I have found a lot of local resources, like yoga and nutrition classes that have been very helpful.