Any other folks with ILC and HER2+?

Googler007

We are looking around the community in search of folks diagnosed with ILC/HER2+. In the 2005 mother had DCIS/ER+ with single mastectomy and reconstruction. 12 years later now diagnosed with ILC/HER2+ in the other breast. 6+ cm, stage IIIB with 3 nodes positive on scan. She's had 3 months of chemo-Taxol, Perjeta, and Herceptin-and will stay on Herceptin for a year. Luckily, she had a complete response to chemo -no cancer found in breast or lymph nodes.

Now the oncologist wants the surgeon to do a radical mastectomy and removal of all sentinel and axillary nodes. As far as they know, chemo has already cleared the cancer completely -for now. She is also on Herceptin for a year and will be doing radiation. It just all seems too extreme to me to take her pectoral muscles and all her lymph nodes. And she is also 76, a pianist, and her husband died two months ago while she was in the middle of chemo.

Consequently, we're wanting to compare notes with other people who are also ILC/HER2+ to get a sense of treatment options. She wants to weigh all possibilities before taking that big of a step.

I want my mother to be as fully functioning as she can be and have the best quality of life as possible. I am concerned because if she becomes even more debilitated from treatment and can no longer play piano, without her husband, I fear grief will overtake her and she will give up.

Any advice would be greatly appreciated.

Icietla

We are so glad she has had good response to her Chemotherapy and Targeted Treatment.

Are you sure that the Doctor/s said Radical Mastectomy and not Modified Radical Mastectomy? I think she should contact them to make sure she is clear on what surgery type is recommended.

https://community.breastcancer.org/forum/131/topics/858540?page=1#

Mojojennijo

I am 41 and I also have ILC and her2+. And also a 6cm+ primary tumor (7.3cm). I find out Tuesday what meds I will be given for chemo. I have 6 months of chemo then herceptin from what I understand. Then I'm planning on having a bilateral mastectomy. Tomorrow I'm having clinical staging done via scans and such. Won't know lymph status because I don't get to have surgery first. But tumor size alone gives me a 2b. My MRI showed lymph involvement but from what I understand pathology is the only way to know that for sure.

Will my ct and bone scans give them lymph info?

I'll update when I get more info.

Mojojennijo

just wanted to add how wonderful it is for your mom to have such a caring advocate! I'm so sorry for the loss of her husband :

unicornhorns

Hi All,

Googler007, my mom is also 76 and ILC HER2+. She had a very small palpable lump biopsied (carcinoma measures at least 8.5 mm in this biopsy tissue) - we don't know yet if it's spread to other areas. Her mammogram showed a few suspicious spots in her other breast. She will have a bilateral MRI in 5 days as well as first visit to an Oncologist in 9 days. We are not sure of staging at this point but hope to know soon. Her tumor is Grade 2. She is ER+ (100%) and PR+ (15%). I will keep you posted on her status and what the doctors recommend. This is my mom's first experience with BC but hopefully any info will be helpful for you and your mother.

Thank you all for sharing, it brings me a lot of comfort to know what may lie ahead for us.

Beatmon

I'm so sorry that your mom is going through this. Is there a NCI close by to get a second opinion? I would certainly think it would be a good idea asthey are requesting such a big surgery. I can imagine that it would truly be a big set back for her not to be able to find joy and solace in her piano.

unicornhorns

Googler007 I hope you will update us on what decisions have been made regarding your mom's treatment. It's very tough to know what to do, especially at her tender age, I feel for you and your family.

My mom (age 76 and ILC/HER2+), appears to have a simpler case, as her bilateral MRI showed nothing abnormal in right breast, nor in lymph nodes in and around chest, and no evidence of "bone marrow infiltrative process in the visualized portions of the thoracic spine", nor invasion of the chest wall.

We met her Medical Onc who said even though her tumor is 1.1 cm, stage 1, she will need chemo regardless bc she's HER2+, and of course Herceptin and says the Surg Onc may either have the entire left breast removed, or a lumpectomy with radiation. I feel as though 1.1 cm is so small, do we really need to take the whole breast? My mother doesn't want chemo.

Med Onc seems concerned because my mom is still losing weight and is underweight, so MO has ordered PET scan. Is it common to lose weight like this when BC is caught at an early stage and without starting treatment yet? Med Onc told us to come back after PET and after we meet the Surgery Onc (appt in 9 days) and "see what he says" because apparently they can truly tell ILC staging after the tumor is removed (?). We are waiting for medicare insurance to approve mom's PET scan, I guess if they do not we will forgo this.

My mother's case is different from your mom's but hopefully this helps you in some way.