Got the thermogram results--my "bad" boob is glowing in an area that I've been having a lot of pain. I hope it's just some sort of inflammation from the radiation or something. The holistic doc wants conventional imaging done before the next thermogram in February. I'm due for a breast MRI in January, plus I'll see the new onc in December, so that will work out.

I think you should make an appointment with the bc clinic. A good bc surgeon can tell a lot by feel. It's unlikely you have bc, but not impossible. If nothing else, the appointment will put your mind at ease.

Hi, Fly. I've got PILC, too. Someone can correct me if I'm wrong, but I think any time there's skin involvement, the staging is automatically IIIB. Was the tumor very close to the surface? You mom's tumor really isn't that big at 1.3 cm.

Generally chemo is done first to shrink the tumor down so a lumpectomy can be done instead of a mastectomy. But if your mom has skin involvement, they'll have to do a mastectomy anyhow, so I'm not sure why they're recommending neoadjuvant chemo. That's something to get a couple of onc opinions on.

HER2 is a protein that is sometimes overexpressed in breast cancer tumors, making the tumor more aggressive. ILC is almost always HER2 negative, but the pleomorphic variant that your mom has is occasionally HER2+. Mine was not, BTW. If by some weird chance her HER2 testing comes back positive  (there are two lab methods--ICH and FISH--so you'll probably end up seeing both on reports when you get them), then there is a targeted therapy called Herceptin that can be added to the chemo to specifically stop the HER2 overexpression. 

Oncotype DX is a test that is run on the tumor sample after surgery to look at the DNA of the tumor. You can read about it at www.oncotypedx.com. It is used for ER/PR positive tumors where there is no node involvement. You will need to find our your mom's ER/PR status. ILC is almost always hormone positive, but sometimes there are exceptions, and typically those exceptions would be in the pleomorphic variant. Back to Oncotype--the test measure how hormone responsive the tumor is, meaning how well would it respond to hormone therapy like Tamoxifen or Arimidex, vs. responding to chemo. The test gives a score--low, intermediate, high--with a % chance of recurrence.  A low recurrence score--under 18--means that the tumor should be very hormone responsive, and that chemo wouldn't help much. A high score over 30, I think it is, means the opposite, and that chemo would help a lot. Most women seem to score in the intermediate range of 18-30, which is a grey area.

My Oncotype with my PILC was 18, which was just barely in the intermediate range, but was somewhat high for an ILC tumor. My tumor was also only moderately ER/PR positive. We're seeing a lot of low scores (9-11 range) for ILC girls on this board,  b/c their tumors are highly ER/PR expressive and they'll benefit the most from hormone therapy. 

Hope that helps a little. And yes, the beginning is the hardest, and yes, you will be a pro at this really fast! Your mom is lucky to have you.

Avastin added to chemo (Avastin/Abraxane is a common combo) can be effective for liver mets.

Sorry to hear your news!  

 And here's another, more recent study, that concludes the same thing:

Young Women May Reduce Recurrence Risk with Chemotherapy or Hormonal Therapy

The risk of local recurrence in women under age 40 who have lumpectomies falls with the addition of systemic treatment to surgery and radiation, study shows

By Mary Alice Hartsock, LBBC Staff; Reviewed by Tom Frazier, MD

M. van der Leest, et al. The safety of breast-conserving therapy in patients with breast cancer aged < or = 40 years. Cancer. 2007 May 15; 109(10): 1957-64.

Women age 40 and under with early breast cancer may benefit from adding chemotherapy or hormonal therapy to breast conserving therapy, or lumpectomy, results of a recent study indicate.

Led by Marloes van der Leest, MD, and Lisette Evers, MD, of Maastricht University in the Netherlands, researchers studied data from 758 women who had lumpectomy to determine what factors decreased their likelihood of developing a recurrence.

Study Background

Breast conserving therapy, or lumpectomy, involves the surgical removal of a portion of the breast and tissue surrounding the tumor. Lumpectomy usually is followed by radiation to the breast, or high-energy from x-rays, gamma rays, neutrons, and other sources to kill breast cancer cells that remain after surgery. Other adjuvant treatments, or treatments after the primary surgery, such as chemotherapy or hormonal therapies, also may be used.

Because breast cancers in young women can be aggressive, some doctors recommend mastectomy, or removal of the entire breast, to decrease the chance of recurrence. However, removing a breast can affect body image and intimacy and prompt a range of physical and emotional issues.

Studies have demonstrated that lumpectomy works as effectively as mastectomy in reducing the risk for recurrence among women with early-stage breast cancer. Most of the studies, however, focused on women over age 40. Researchers in this study sought to determine when lumpectomy is a safe treatment for women under age 40.

Study Design

Researchers examined data from 758 women age 40 and under with stage 1 or 2 breast cancer who had lumpectomy followed by radiation in hospitals in the southern part of the Netherlands between 1988 and 2002. Of these women, 329 (43 percent) had adjuvant systemic treatment, or treatment that affects the entire body by traveling through the bloodstream. Systemic treatments include chemotherapy or hormonal therapy. The researchers did not specify the types of chemotherapy and hormonal therapy the women used.

Study Results

After eight-and-half years of follow-up, 95 women had been diagnosed with a local recurrence (the breast cancer returned near the original site), and 59 women developed a breast cancer in the opposite breast. After follow-up periods of five and 10 years, 9 and 17.9 percent of women developed a local recurrence, respectively.

Women who had systemic treatment were 50 percent less likely to have a local recurrence or develop a cancer in the opposite breast than women who did not have systemic therapy.

The researchers said systemic treatments such as chemotherapy and hormonal therapy should be considered in women age 40 and under undergoing lumpectomy. However, they did not specify whether some medications were more beneficial than others, and they did not discuss whether any systemic therapies were unhelpful or had adverse effects.

What This Study Means for Me

This study was a multivariate analysis, meaning the researchers analyzed more than two factors that could have contributed to a recurrence. More research should be conducted to confirm these findings; for example, a helpful study would directly compare the recurrence rate of a group of young women with stage 1 or 2 breast cancer who receive lumpectomy and radiation to a group that also receives adjuvant treatment.

The researchers noted that larger studies are needed to examine the types of adjuvant systemic treatment that reduce risk of recurrence for women undergoing lumpectomy. These studies may uncover whether certain treatments are better or safer than others for young women undergoing lumpectomy and whether the benefits of the treatments outweigh the adverse effects.

If you are under age 40 and have been diagnosed with early breast cancer, your doctor can help you learn about your options for surgery and further treatment. This study may help you weigh the risks and benefits of adding chemotherapy to your treatment plan, in addition to some of the new tests like Oncotype DX, which can help you determine your risks for recurrence if your cancer is ER+.

You should also be aware that certain types of chemotherapy and hormonal treatments can impact your fertility. Sharing your plans about having children with your doctor may help you to design a treatment plan that is effective for treating your cancer yet will help preserve your fertility.

Read more about the young women, lumpectomy and recurrence study.

I don't know about chemo and local recurrence--I've only heard of radiation as a measure of local control. I'll be interested in what the onc says--keep us posted.

I think often MRI can show cancer in the nodes, but of course, biopsy is the only sure way to tell.

This was posted by Jodi's father over on the mets thread:

 Thank you all. There will be a memorial service for Jodi on Saturday, November 29 (her birthday) at 3:00 PM at the Bethlehem Lutheran Church, 925 Balour Drive, Encinitas, CA 92024. You haven't heard from her since August as she entered the hospital at the beginning of Sept, was out for only a couple of days. She came home last Monday, saw Zoe, smiled, and then became comatose. She passed away on 12 November at 8:46 PM. She was a fighter. I too hate this disease.

Love to all,

Jodi's Daddy

I unfortunately will be out of town for Thanskgiving and can't attend the service. Wanted to make sure you guys knew about it, though--it would be nice to have a bc.org contingency there, offering respects.

Jodi's Daddy--thank you so much for coming here and letting us know about the memorial service. I wish I could come--I'm in San Marcos--but will be out of town for Thanksgiving. I'm sure that there will be a contigency of San Diego bc.org ladies there to offer their condolences.

I'm glad that you found your way here, so you could read the posts and see how Jodi touched so many lives of other breast cancer patients.

I can't even begin to imagine how hard it is to lose your daughter. I wish I could say or do something to make it all better.  

Here is Jodi's obit. It was in two papers, but no mention of services. I'm posting it b/c there is a link to a guest book where one can post condolences to the family. 

Jodian Ellen Squire, 35 11/29/1972 - 11/12/2008 ENCINITAS Family requests donations be made to the American Cancer Society in her name. Sign the Guest Book online obits.nctimes.com