ILC with mets, Onc said no difference than IDC

claygirl · April 2010

Hi all, I am really stymied. I have ILC mets to bones (so far) and am aware of the different ways that lobular cancer cells present on a scan. I am also aware that for a metastases the treatments for ILC and IDC are the same. However, I recently met with an Onc. at a major cancer center and posed this question: Is it not important to make the radiologists aware that it is ILC, so that they can be looking for it in those "other places"? My reasoning was that if it is discovered in Peritoneum... etc. would the course of action be more aggressive than for bone only disease. In other words would we be more proactive. Her response was to tell me that I did not know what I was talking about and that it did not matter because the treatment is the same. ( Her bed side manner wasn't the greatest.) Does anyone know...is this the current thought when dealing with metastatic ILC? My tumor markers are climbing like a runaway train (well, that may be a bit of an exaggeration) but Jan scans showed minimal progression in bone. I will be having new scans next week. Is it possible that this sneaky beast is somewhere that the radiologists aren't seeing?

Thank you for any suggestions or answers you may have.

Jackie

nash · April 2010

Jackie, I get so frustrated when I hear about experiences like yours. Seriously, the docs need to learn how to use Google. Here's a good article for you to read and give a copy of to the onc:

"Metastatic Lobular Carcinoma of the Breast: Patterns of Spread in the Chest, Abdomen, and Pelvis on CT"

http://www.ajronline.org/cgi/reprint/175/3/795

I have a cousin who has Stage IV ILC that orginally presented as a mass near her intestines. The mass went away after chemo, and she was NED for many years. Now her TMs and CTC (circulating tumor count) are sky high, yet her scans are "clean". Her docs say that she has active mets that just can't be seen, and are treating her as such.

claygirl · April 2010

Nash, Thank you. My sister, daughter and I went together to that appt. (It was a second opinion) and we were so frustrated that this young woman could be so dismissive. She actually told me to stop reading about other women's experiences because it was giving me erroneous information. She even ended the appt. by telling me that she had women much sicker than I in her practice. Our mouths hit the floor... there are just so many reasons one does not compare patients. I want to give her the benefit of the doubt, she is so young, but someone needs to instruct her on bedside manner. I will be writing the hospital. In the mean time, I will try to get local onc to read the article.

Thanks again,

Jackie

nash · April 2010

You're welcome, Jackie. Good luck with the local onc--the other one you met with sounds horrible. Keep us posted, and I've got all my fingers and toes crossed for you that there's nothing going on besides the bone mets.

IllinoisNancy · April 2010

Hi Ladies,

The study that Nash is referring to is 10 years old. I wonder if there is anything newer? I get nervous when I read about ILC going all over the body. I have never had a scan and hope I never need one. Ignorance is bliss sometimes.

Kleenex · April 2010

Those are the two truths that keep me from getting the answers I seem to want:

(1) Once the horse is out of the barn, it's out. There is no advantage to early detection of mets, and regardless of the basic type of breast cancer, it appears that treatments at that point are mostly the same.

(2) Many women my oncologist sees are, indeed, much sicker than I am.

I want to think that they know what they are doing and are looking for something so that they can protect me, but the reality is that they can only protect me from new cancers in the breast by catching them early. Don't know if I'll ever feel comfortable with that - this whole bc thing has been SUCH a blow to my control freak personality!

IllinoisNancy · April 2010

Gee Kleenex...I think we could be sisters!! Maybe even twins. You sound so much like me with your dx, treatment, mental state, past history, etc.

Have a good day,

Nancy

Kleenex · April 2010

OMG, Nancy, I certainly HOPE your mental state is better than mine! Tongue out

Rivergal · April 2010

Hi Jackie,

I agree with everyone else as to you finding a nicer onc. But the reason I'm writing is that your dx is so similar to mine, & I really haven't 'talked' with anyone in the same boat as me. I was dx last July with Stage IV bone only lobular breast cancer. I never had any lump.

I've had no surgery other than the initial biopsies, first to my vertebrae which determined that it is breast cancer, then one on my breast. The surgeon removed a tumor, for testing, but I don't think they even tried to be sure to get all of it... clear margins & such. I've had no chemo, no rad, and just take a daily Femara pill & a monthly Zometa infusion.

I have no symptoms & my onc plus 2 other oncs have said I can "live for years" with this type of Cancer as long as my treatments are working. The only tumor marker of mine that is being watched is my CEA, which started at 183 & was down to 12 last month.

What tumor markers are they watching on your cancer? Something different? Is your treatment similar to mine? I've been reading all the complaints about Femara side effects, and I do have a lot of aches and pains, but I did before I started Femara or knew I had cancer. I actually feel pretty darn good... especially compared to many on this site... I almost feel guilty! Are you the same?

Thanks for any info. We live in a very small town but we do have a new cancer center & I've been told by 2 bigger Cancer centers that the treatment I'm on is the right one for me... but I still wonder... mostly because I have no one else to ask.

Take care, Toni

ILC with mets, Onc said no difference than IDC

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