ILC Journey

I was diagnosed June 6 after I had my implants taken out as I thought my implants had gone south but, in fact it was cancer that everyone missed. I was 41 at the time. My left breast had multifocal tumors 2.4 cm and 1 cm with axillary node involvement. I met with he breast surgeon and opted for a mastectomy (I wanted a BMX but he said not a great idea) so my left came off after I got my drains out from my implant removal. Mastectomy was June 21. Port went in a couple weeks later. Chemo started after I healed, July 30. I finished chemo 2 weeks ago. I start rads this month. Then I will have the right breast off prophylactically. Not sure if I will do tamoxifen or go for ovarian shutdown with an AI. I had 2 different opinions from 2 oncs. I opted for no reconstruction as I was pissed no one could figure out that I had visible and palpable cancer and breast implants.


I had my mastectomy and I did NOT have clear margins. Cancer went to my chest wall. Although my surgeon said he dissected it all out. Thus, insane chemo and now rads for 6 weeks. Since I had node involvement and did not have clear margins they didn’t do an Oncotype. My Ki67 was 10% but then I’m pleomorphic so my grade shot up to Grade 2. I have since requested an Oncotype (I’m on the cusp with 3 positive nodes).

betterdazeahead- I will admit my recovery from BMX was longer than I thought it would be. I ended up having two revision surgeries in November.

My Ki-67 was high on the grade 2 tumor and low on the grade 1 tumor. They used the grade 2 tumor for the MammaPrint.

hi, my tumor was grade 2. There were 2 tumors, they said same cancer. The bigger one (1.4cm) was the one that they ran the oncotype and Mammaprint on. The other one was fairly small, I think about 5mm. I had a VUS in my genetics for palb 2 as well as I emotionally didn't handle the news very well and could not imagine living with my boobs after all this. So I hadn't bmx

My nodes (3 of them) were completely clear. As a side note, I have 3 kids and breastfed all 3 for over a year. I had just finished nursing my third. It broke my heart to have masectomy but I am on my journey now and trying to put the pieces back together. I wish you all the luck and if you can have your doctor run both tests. I found the Mammaprint to Be very reassuring

Oh and I’m stage 1a

I was 53 and postmenopausal at dx. The biopsy showed 2 ilc tumors 1cm kind of close to skin and nipple, multicentric possibly multifocal. There was a suspicious area on MRI. I did a single mx on left. The pathology showed 1 ilc and 1 idc 1cm lesions but they were separate occurrences one grade 1 and other grade 2. Er 95% positive but Pr 0% so negative, her2 negative. The suspicious area turned out normal. No nodes but oncodx was 34, not sure which tumor was tested. I didn't do chemo but AI drugs for 4 years. I am 7 years out no cancer.

I did DIEP reconstruction. Still remain in excellent health but have lingering joint pain from drugs.

DIEP results were excellent.

vlnrph, how are you doing on faslodex and versenio? What dose and how are the side effects?

Glad to know Jenkins addressed the possible genetic issues especially with her mother having had disease - but nice to be a 20 year survivor.Good luck on starting chemo. I found TC to be pretty easy. Have you thought about using cold packs for your hands in an attempt to avoid neuropathy?

Meow and I are quite similar except my white pet was a poodle! And she lasted 4 years on aromatase inhibition while I couldn't tolerate the side effects. The alternative anti-estrogen I'm currently on (Faslodex injections) seems to be giving me night sweats so I guess that tells me it's working. My tumor markers are down to double digits.

The Verzenio dose had to be decreased to 100mg twice a day when the first week messed up my gastrointestinal system to the point I couldn't eat or drink enough and became dehydrated. I now use FiberCon to manage the diarrhea instead of loperamide. I'm hoping for a nice long run on these agents, along with IV Zometa every month.

vinrph

Yes I am doing genetic counseling now.  I had 36 genes  tested but have not gotten the results back yet.  I had surgery for ILC and MX on my right breast In February 2018.   About 5 months later I developed a melanoma on my face.  Had to have a plastic surgeon remove it and then margins were not clear enough so had two surgeries for the melanoma.   My breast surgeon suggested I have the gene mutation test done.  I am waiting for results.  He said it is rare but it does happen that melanoma and breast cancer can carry the same gene or whatever they carry.   Hoping they are not they same. 

I was diagnosed by biopsy only found ultrasound. Diagnosed initially with IDC but after surgery it was changed to ILC also with DCIS and LCIS. 9mm I had chose to do a BMX. No chemo or rad. I do take Tamoxifen and so far not too bad of side effects. Mostly dryness and little dizziness. I had genetic testing done, everything came back negative. I'm one year out and so far so good. Guess I'm lucky with the side effects of tamoxifen

Betterdazeahead - My first round went well. The nurses were wonderful and very patient. Feel okay today. Not 100% but managing. Mostly the steroids causing this. No shots. I had a partial hystercomy in 2013 and have my right ovary left which is still producing estrogen. My oncologist is hoping chemo will throw me into menopause. If not we will discuss after I finish chemo of having it removed or block it with hormone therapy.

I was diagnosed at 41 and premenopausal. I have no genetic mutations. My family had one case of BC (probably) but she was a great aunt in her 80s and she did nothing about it, or so I’ve been told. She has been deceased for decades so who knows. The geneticist said I wouldn’t have any mutations when I met with him and he was correct. I was shocked how inexpensive the testing was and how quickly I got my results back. That was a nice change.

Just found out yesterday now I will have 7 weeks of radiation (instead of 6 weeks) starting Monday. I hate this 🤬 BC

Too many physicians are simply sending orders for testing instead of referring people to genetic counselors first!

The issues are so complicated, you really need an expert at your side. Most busy gynecologists will not have time to fully understand and explain options. Even if current analysis reveals no known mutations, you want to have a relationship with a master degreed professional who stays up to date and can revisit your situation in the future.

Not all companies look at the same genes which means somebody should figure out the best lab to get your sample and provide the data you will rely on. I am aware of certain ethnic nationalities who have rare but higher risks (not just Ashkenazi Jewish folks with BRCA - their statistics are pretty well recognized everywhere by now)