Recently diagnosed and losing it fast

ryland19

5/5/2016 had a ultrasound and was told I had 2cm ILC, had MRI today and found out not 2cm but 8cm. I thought I was handling this well till my anxiety hit and im a complete mess. How does one not allow this to consume your every waking moment? My HER test results came back neutral so have to wait 5 more days on final stats. I am a complete wreck, was handling it ok and now im a complete mess. I had my yearly mammogram 6 months ago, was told everything was good, and then found a "ridge"

ElaineTherese

Hi!

I don't have ILC, though I've heard it can be sneaky and difficult to detect. I'm with you on the "news just kept getting worse" trend, though. When I was first diagnosed, I was told that my cancer was 3 cm. Then, it was 3.9 cm. Then it was over 5 cm., and one node wad involved! It just kept getting more serious with each scan. I'm here to tell you that it WILL get better. Once you have all of the information, your doctor(s) will propose a plan for you. In the meantime, you might want to look into some anti-anxiety meds to keep you sane. I have a bottle of Ativan around for emergencies. I don't take it often, but it's there if I need it.

Take it easy and find something to occupy your mind -- anything! Binge watch a new show. Clean a dusty part of your house. Plant some new flowers. Anything so you don't end up fixated on all of the unknowns.

Best wishes!

ryland19

Tthis will ease.hank you Elaine, I work from home and wish I had a job to help keep my mind off of this. I already was taking anti anxiety meds before this, so this has put me right up and over....not good. I am exhausted and cant sleep.

Optimist52

Hi ryland,

Here's a link to a recent thread very similar to yours with some hopefully helpful comments incl. mine.

https://community.breastcancer.org/forum/71/topics/843979?page=1#idx_13

Optimist52

Hi ryland,

Here's a link to a recent thread with very similar topic. Hope it's helpful.

https://community.breastcancer.org/forum/71/topics...

Lucca06

Ryland, as Elaine said ILC is sneaky and doesn't show up well on scans. I was told there was nothing on my mammogram on the day I was diagnosed and then it was picked up on ultrasound. I think quite a few ladies with ILC were given a size on initial diagnosis only for it to change quite radically after either an MRI or surgery, me included. MIne ended up being aprox. 12 cm but it was like a spiders web not a hard lump and I had 9 positive nodes. 5 years later post treatment I am happy and very healthy.

Good luck with treatment.

Smurfette26

It's a really frightening place to be ryland19. Hugs. But it does get easier.

Lobular cancers often turn out to be much larger than they appear on imaging.

I had multi focal ILC and the largest tumour turned out to 4.2cm. More than twice as large as it appeared on my imaging.

Thinking of you and wishing you all the best. Donna.

CandyHB

I can identify with what you ladies said. I felt a lump in my left breast. There was no doubt that it was there. Took a few weeks to get in to see my primary care physician. Then the mammogram and the ultrasound - I could tell by the ultrasound technician's manner that it wasn't good. I had a lumpectomy of a 3.6 cm.lump. Now I have to go for chemo and then radiation. I am nervous about chemo. I will have 4 treatments. I was freaking out on the day I went for the biopsy. I kept telling my husband how scared I was. So you're not alone. At times I dwell on it and other times I'm happy playing a game on my computer. It keeps my mind occupied. Good luck to all of you.

KammyMN

I can relate to much of what you've shared. I also found a ridge in right breast just 6 months after a callback mammogram/ultrasound that indicated dense tissue. Biopsy revealed 2 small IDC tumors, but during my double mastectomy on 4/6/16, it revealed a 10 cm ILC tumor plus the IDC - & lymph node spread (1 macro/1 micro). So - my surgeon told me I was now stage 3A, & I had to wait a week to get a PET scan to see if it had already spread. The anxiety was so overwhelming then - it's hard to even revisit it now. I've completed 4 dense dose AC cycles and am 1/2 through my 12 weekly Taxol treatments - then chemo. This journey has been terribly emotionally challenging - I carry much fear as two of our 3 kiddos are on the autism spectrum and my recurrence numbers are not good. Yet - I do have glimpses of hope and plenty of good days when I feel much more present in my family life. I wish you well wishes on your treatment journey

Chemist

I think I'm about 4 months ahead of you in this game, same diagnosis, facing double mastectomy next week. I wish I had a great answer, but I don't. Here are some small things that have helped me a little. First, arrange something that's going to completely take your mind off the cancer for a few days, if you can. Maybe it's a big project at work, a mini-vacation, ... something that absorbs all your attention. I think you need that. And when you can't escape it, just surrender to it. There's not much you can do, especially when you're caught up in the medical vortex of tests, diagnosis, treatment, and that barrage of information coming at you. When I'm in that stage, I cry alot. Finally, I have been helped by Reconnective Healing sessions with a trained practitioner. They help me connect with something that is much much bigger than myself, and I always feel calmer and more peaceful afterward. None of this is a magic bullet, though. I wish you the best.

Footballmom52

Hi, I am in the same boat. 7/26/16, I was diagnosed with ILC. I've had mammograms every year since 2007 and nothing has ever shown up. At first I was told it was about 2 CM. So, I had a lumpectomy on 9/9/16. When I went back to the Doctor for a follow up, they said that the pathology report came back with cancer in all 3 lymph nodes that they took out and not clear margins with at least a 5+ CM tumor. Now my surgeon is saying I need to go back in for a mastectomy. So, now I've just had a PET scan and I'm waiting on results. I'm a complete train wreck. I'm 44 years old with a husband and two sons. I can't seem to focus on anything. I'm thankful for this forum because it's so hard for anyone else to understand.