Lobular carcinoma on scans

Hi there. I had stage 3c lobular carcinoma, diagnosed in 2017, declared cancer free in September. A year later I felt a lump above my clavicle. I had an ultrasound done, and it saw nothing except a few small lymph nodes. So they did a CT scan, which focused on those nodes, and said they weren’t bug enough to worry about. I moved to another state where my new doctor did an MRI, which found the cancer as wispy strands embedded in fat, confirmed by biopsy as metastatic lobular carcinoma. Then came PET scan, which showed NOTHING, not even the cancer we knew was there. My original oncologist had emphasized that lobular cancer is more difficult to find because it grows in rows of cells rather than clumps if cells. But now I’m worried about the many many little lumps and bumps. I know my original cancer showed on mammo, and ultrasound, so do I not need to worry if it is too small to detect?

[Arisgram]

I'm sorry. I have nothing intelligent to say other than my original (2010) dx was ductile and lobular. I have these weird "wrapping" pains around my ribcage but nothing ever shows up there. In the back of my mind, I think it's a lobular mass. It took them a long time to find the breast mass and it was 7 cm. If you feel something is wrong, push your doctor to help you. Best of luck. I'm sorry you're having to deal with this.

Andi

[Hidden in reply to Arisgram]

I dealt with this for almost two years before a new doctor did an MRI. That is what actually saw it. It said they were wispy lines, and I recognized that as lobular even before the biopsy. Maybe you could ask for an MRI. It is the only that worked. My original cancer showed up in mammo and ultrasound, but it had reached stage 3c by then.

[Hidden in reply to Arisgram]

My name is Sharon by the way. Nice to meet you.

[Arisgram in reply to Hidden]

Hi Sharon, it is nice to meet you as well, just sorry about the circumstances. I've had MRIs of bits and pieces of me, but not one of my ribcage. I've so many sites at this point, I'm not interested in looking for others. I've had the wrapping pain for years. My doctor told me I was being hypervigilant. I know what I know, so hopefully my treatment will work.

All the best to you. It's tough enough to have this disease....but then it plays hide and seek!!

Andi

[Lap68]

Hi Sharon,

I was diagnosed with stage IV lobular carcinoma only 6 months having s negative mammogram. They repeated the mammogram and an ultrasound only to show that it did not show on either test even at stage IV. MRI is what was used to see it. Needless to say I no longer need mammograms. I had Taxol chemo for 6 months and now Ibrance, Letrozole and Xgeva shot. I still get random pains and as someone else mentioned that “wrapping” pain and/or tightness around the rib cage that also doesn’t show anything. It’s hard for your mind not to wander every time you get an ache or pain and make you think it’s a new wispy wand forming. I get a pet scan every three months as well as a CT scan and MRI and everything has always been stable even with these random aches and pains. I get all of those tests because the MRI is used to look at the orbit of my eyes (i have mets there), the CT scan is of abdomen and pelvis (radiologist prefers comparing liver from CT), and pet scan is of course for an all over view.

Try not to let your mind wander too much with aches and pains. I know mine does and I have to reel myself back in.

Lisa

[Hidden in reply to Lap68]

Exactly, Lisa. It only showed on the MRI. It didn’t show on the PET even though we knew it was there! I also am just hoping the treatment works even on things we don’t know about! A lot of people here seem to be in the UK, which is actually where I was born. But I’m in the US now, so all those scans cost a lot of money for something that doesn’t seem to do much good!

Sharon

[KMBL_]

Hi. I can totally relate. I have Stage IV de novo breast cancer in my stomach. No primary was found. They did every test imaginable, and not one thing showed up on imaging. The only way we found my cancer is because I lost a lot of weight rapidly and was having major trouble eating. I could only eat a few bites and would be totally full. Had an endoscopy, and the gastro took samples. He was shocked when it came back metastatic adenocarcinoma. We did a repeat endoscopy. The second time they found the cancer in two places in my stomach. That was in April/May of 2019.

On my last CT scan, they found something in my omentum. That’s the first time anything has shown on a scan. Had a PET. The omentum had a shadow but did not light up. The cancer in my stomach doesn’t show on PET or CT.

I’m having a follow-up endoscopy next week. I want to see what’s going on down there.

[Hidden in reply to KMBL_]

Oh my! That is scary! I wish you well! In the movies the PET scans are the final word! I had a lot of faith in them.

[PJBinMI]

I was diagnosed at stage IV with extensive bone mets in 2004, after 3 negative mammograms in the 13 months before that! This lousy lobular cancer has never shown up on a mammogram and I understand that quite alot of us with this particular type of BC are often not diagnosed until it is metastatic. One good thing about it is that it often responds really well to anti-estrogen meds. Sharon, one thing to think about is that you are unlikely to ever be cancer free now, and worrying about where it may be or how much it may be growing just makes you a nervous wreck and doesn't help at all. As long as it can't be found on the scans that have found it in the past for you, and isn't causing symptoms, do everything you can to not worry about it! One of the worrysome things I faced down early on was a PTSD like response to needles! After diagnosis, when I went in for the first scan that required an injection, it hit me that I was going to be facing alot of needles! So I decided that I just really needed to befriend them! lol So I really worked on that. I'd had a horrible experience in the hospital when I was a young adult, when an IV infiltrated at night and wasn't discovered for a few hours and since that time, I'd gotten pretty nervous about any needle prick! Something I discovered at a BC retreat was an audio recording about relaxing during cancer. It was by a psychologist named Belleruth Naparstek and I found a place to buy it by googling her name. She has studied the mind/body connection extensively plus she has a very soothing voice. I've listened to it often enough that just thinking about it helps me relax, lol, and now my blood pressure is normal when I check in for surgery or other procedures plus I have gotten so comfortable with needles that I can actually watch one good into my skin, which I never thought would happen!! Anyway, getting comfortable with this whole cancer thing is a process and I think many of us feel alot more comfortable after a year or two than at first. Meeting others with mbc helps, whether face to face or online, helps. So does getting a good report on treatment working, even if it just slows down progression . I know that I have been really fortunate to do so well for so long, but we are living longer all the time!

[Hidden in reply to PJBinMI]

Thank you, that was very helpful. When I was first diagnosed with breast cancer, it was 99% ER positive. I have taken anastrozole for almost three years, and now this metastasis is only 2% ER positive. So it seems to have evolved or something. Anyway, my doctor is out in maternity leave. My babysitting oncologist is the one who read the report and decided on the faslodex and ibrance, but I’ve wondered if that is even the best treatment. My regular oncologist will be back at my next appointment so I will ask her. I have thought also, as long as I know I am on a treatment that works, I don’t need to worry about where else it may be hiding. Thanks,