what confusion !, onco says my mets are lobular

riverinerabbit · August 2007

3rd time chemo now, 8 year survivor of ductal, but my Onco tells me the mets which presented 3 years ago, to my bones was originally lobular and probably been there for many years. Talk about a red herring. Always confused why my stage 1 grade 1 estr + spread. She tells me it's better to have lobular spread than a ductal? Any thoughts ?

nash · August 2007

I didn't vote b/c I wanted to elaborate on my response. Did your onc say why lobular mets would be better? I don't think they're more easily treatable than ductal--mets are mets, aren't they? From what I've read, lobular met are neither better nor worse, but tend to be different. They tend to go to odd places that ductal doesn't, like ovaries, uterus, gastrointestinal tract, etc.

Did they actually do a bone met biopsy on you? They must have, if they know it's lobular in the bones. And I take it they haven't found the original ILC tumor? If they did a bone met biopsy, did any other markers of your original tumor change? HER status, ER/PR status? I've heard of people who were HER2 neg then ended up with HER2 pos mets, and same thing with ER/PR.

I guess my point here is that I wouldn't worry too much whether the mets are lobular or ductal and would focus more on the ER/PR HER2 status. Bummer about the stage 1 grade 1 progressing. Just shows how inexact a science all this is.

snicklefritz · August 2007

I have looked at some of the research on ductal mets vs. lobular mets. What I have learned is that most first time lobular mets go to the bones and skin first. This is true of ductal also. However, after that, the ductals spread more often to the lungs and the brain. Both seem to spread to the liver with the same frequency. I think the major difference then is that if it then spreads to the lungs and brain, survival time is less. Also, her2 positive lobular may spread faster but not her2 negative.

riverinerabbit · August 2007

Thank you, so right about METS being mets. No bone met biopsy, but my Onco says she can trace the disease on my PET, CT, MRI scans. She was always confused about the stage 1 grade 1 ER/PR+ Ductal completely encapsulated, no glands, pathology. It came back as a recurrence in the scar, 3 years later, pathology was slightly different.It was still ER/PR + but grade 2 and still completely encapsulated.I had my first chemo then. The mets emerged in my mediastinal glands and bones, 3 years later, had a biopsy of those and a lung wash. No cells in my lungs and the biopsy was grade 2, but still ER/PR +. A grade 3 HER2 +which would have made me a Herceptin candidate.

My latest PET and one scan, 3 years later, shows bone mets active and new ones. I was put onto Faslodex for the last 5 months and it did not respond. My Onco thinks I am no longer ER/PR + and this is why the remaining cells are working overtime.

She's discussed my results with other experts and they agree that it's lobular.
I've also been told that lobular mets go for linings. Once in the organs, you have less chance of surviving for longer. I wonder If I should start another thread asking for bone met survivors to raise hands and ask how long one can live with bone mets for ? I've heard that it can be for a number of years.

So nice to be able to share this with you all. THANKYOU XXXXX

riverinerabbit · August 2007

thank you so much. I have made an extensive reply to NASH.
I started the red devil last week again.
XX

nash · August 2007

You're welcome!

I know of people who have survived many, many years with bone mets. I also know of people who had extensive liver mets and gone into complete remission with the right chemo combo. It's all a matter of finding the right drugs for you.

My mom is Stage IV with a pleural effusion, mediastinal nodes and pericardial mets. She's triple positive, but hormones never helped her. She's always had to be on chemo and herceptin, although she just switched to tykerb due to progression again.

I'd be interested how the docs arrived at lobular mets w/o a biopsy. But at any rate, like I said before, I don't know how much of a difference it makes since the disease is so unpredictable. I think starting a thread on bone mets survival is a good idea--you'll probably get a good response over on the Recurrence Board.

Good luck, and hope things go well for you.

LizM · August 2007

River, sorry to hear about your recurrences. I was diagnosed with both IDC and ILC first go round with biopsy saying grade 2 and final pathology saying grade 1 so who knows what will happen with me down the road. Anyway, would you mind sharing what anti-estrogen therapy you have used over the course of 8 years. Did you start out on Tamoxifen and if so how long did you take it before it failed you? Have you ever used an aromatase inhibitor such as Femara or Arimidex and if so, how long before it failed you? If I understand correctly, you didn't have chemo in the beginning because of stage 1 but had it 3 yrs later when you had recurrence to scar. I assume you also did not have radiation after mastectomy, am I correct? It seems that the anti-estrogen therapy is the most important for us who are ER/PR ++ and definately for those who have ILC. Thanks for sharing your story and answering my questions. Breast cancer is very complicated. Take Care. Liz

riverinerabbit · August 2007

Hi LizM, It will be a pleasure to answer your questions: No chemo 1st diagnosis at 40, on Tamoxifen. 3 years later, CEF 4 cycles, Arimadex, rads. 3 years later mets to bone, mediastinal glands and hillur lymph notes. 6 months Taxotere, 3 x Xeloda combination, Rads and Femara. Rads inbetween time until now, 23 months later. Off Femara onto Faslodex for 6 months. No joy. Mets active in bones, 6 cycles CEF, still work in progress.
XRiver

marshakb · August 2007

Hugs to you XRiver! You sound like a survivor to me! Marsha

what confusion !, onco says my mets are lobular

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