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Hi--I was dx'd with lobular and was Her2+ I was dx'd in 3/01--initially with stage II lobular. B (9 mos. after a supposed normal mammogram) Within a day or so of that last mammo I noticed a hardened area in my upper chest. I showed my ob-gyn who flippantly reminded me that my mammo had been normal. 9 mos. later I developed a severe burning pain in that breast; 10 days after my nipple started changing (sinking, quite rapidly, into the aereola). I went in and had a new mammogram. I saw the surgeon that day who did a biopsy--was told it was stage II lobular. Because of a bad family hx, I opted for a bilateral. I had wanted immediate reconstruction but that was wrongly denied (was told I had to lose wt first--I was about 25/30 lbs overwt--but not obese. It turned out our non-profit HMO did not have the facilities/staff available to do an immediate bilateral). So, I just had the surgery. The pathology from surgery indicated more involvement than the initial biopsy pathology. I did have a stage II lobular tumor--but it was pleomorphic invasive lobular which is a rare, aggressive variant of lobular with a relatively short, relapse free survival time. However, it was found that I also had high grade dcis with extensive necrosis and, in addition, a separate tumor in the nipple with dermal lymphatics (which was a rare presentation of IBC--inflammatory breast cancer). I was also ER+ and Her2+
I had surgery 23 days after the biopsy. 4 weeks later I started chemo and had 4 cycles of AC, then 5 weeks of radiation, then 4 more cycles of chemo--2 Taxol and 2 Taxotere along with a year of weekly Herceptin. 2 mos. later I started Arimidex. 2 mos. after that I had 3 attacks of acute pancreatitis (out-of-the-blue), each 13 days apart. 5 weeks after that last attack I suddenly became hypothyroid and also started having severe burning pain (like I had in my breast at time of dx) and my blood levels went 'whacky.' I had a complete abdominal hysterectomy and oopherectomy one month after last Herceptin. 3 mos. after that another blood level started to rise but I had also started taking Celebrex and Doxycycline in addition to Arimidex.
I am not going to bore you with further details -- BUT--wanted to say that I feel that I am alive because I was allowed to have HERCEPTIN out-of-protocol. I do believe that is why I am still here today. There are some situations where Herceptin is being given in the neoadjuvent setting (before surgery) and surgery is being avoided and/or done later.
Have you gotten a second opinion? If so, has it been done at a major cancer center? I recently had a new full body CT scan done by a radiologist whose wife also had lobular. His comment to me was that not enough is known about lobular (by the professionals--although they should know more). They are just starting to learn more or educate themselves about it better. There are some who see lobular breast cancer as a very different type in that it has a different pattern of metastases. It is more likely to metastasize to the gastro-intestinal and pelvic areas, although it can also also metastasize to the same areas as ductal. One article I read described lobular cancer in the breast by saying in cases of lobular that the breasts should be looked at as a single organ with 2 mouths. Lobular metastasizes in a similar way that it appears in the breast--in sheets rather than tumors. I once read lobular brain metastasis described as "spotted throughout" rather than being in tumor form.
Lobular breast cancer, still, is being treated by most in the same way as ductal. IIt does respond to that treatment. There is no protocol to treat it differently at this time. Usually, though, it is slower growing and prognosis may better in terms of overall survival time. However, I am nor sure what % is Her2+. But being Her2+ makes you a candidate for Herceptin. Again, if you have not yet done so--you may want to get a 2nd opinion (or a few 2nd opinions) at major cancer center(s). Take care and wishing you the best!
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