New Here with ILC

Hi LauraW68,   I am new to lobular cancer too.  I am waiting for more scans to determine stage 3 or stage 4 before they start treatment.  Waiting is tough.  Let us know how your gene mutation test went.  I will be interested in what your chemo regimen will be too.

Be sure someone does pre-op arm measurements. Any surgery can leave you at risk for lymphedema and it's too late to get baseline comparison data once swelling begins. Hopefully you will never have to refer back to that information but it's good to have on file.

If the genetic test is only for BRCA 1/2 (since results are expected so quickly), keep in mind that several other mutations can now be detected using panel assessments. Your counselor should be advising you on what kind of additional options exist since the field has become so complex recently. You probably qualified due to being so young or maybe family history was significant. Just be aware that a negative result, while a relief, may not be the end of the story.

Laure, just writing in to wish you good luck. Know that you've got a community of sisters here if you need anything. 

Good luck!  The anticipation of surgery was the worst for me.  The recovery road is long.  The tissue expander stinks but I hear once the implants are swapped in it gets better!

Hi, 

I was diagnosed with ILC last week. I felt a lump, went to the breast clinic, refused mammogram, had an ultrasound then ultrasound guided biopsy, then an MRI. 

I have not received the results from the MRI but I have an appointment with the breast surgeon on Wednesday, Just wondering if anyone can advise me about which questions I should ask her? I assume that I will receive my path report but I don't know what to expect after that regarding ILC. Also should add I was DX with IDC in 2009 the same breast and had a lumpectomy. No chemo, No rads, Oncotype score 6, 1.5 cm. clean margins, 0/3 nodes. 

Any advice is appreciated. Thank you.

Hello everyone, I am new to this diagnosis and everything involved. I am struggling with some of the terminology on these posts but I figure I will learn soon enough. 

I think the support you offer one another is amazing. I am glad I found this website. 

I should find out tomorrow when my surgery date is. I will be having a bi-lateral mastectomy w/reconstruction.  I am very nervous for obvious reasons.

I have noticed in many of these posts that several woman have also had ovary removal. Is that typical with this type of cancer and treatments? I am pre-menaposal and don't really know what to expect. I don't even have a treatment regimen scheduled yet. I have only met with an oncologist once. 

Lvnrph, thank you for the advise on the arm measurements, I would have never thought about that of course until it was too late. Lol. 

Hi LauraW68, our dates are similar. I'm 47. I was dx same week in September and had surgery on October 23. Starting chemo next week. I just had the cancer side mastectomy and reconstruction surgery but now I'm wishing I waited on reconstruction because the tissue expander hurts and I don't want to be on pain meds until the rest of my treatment is complete.

My breasts are not reduction sized, but I thought it was funny when the plastic surgeon asked me if I wanted to be bigger after reconstruction. I just had a picture of myself looking like Dolly. It had never occurred to me that I would be asked that question.

LauraW68,

it sounds like your treatment and mine are going to be the same. They told me mine will start in January because doc wants to run some tests first.

Are you going to have a port put in or how are they going to administer the chemotherapy?

I think for me it will be better if they do the port but I will talk to my reconstruction surgeon this week about how that might effect his work.

I was diagnosed with ILC, 1.3 cm, stage 1c, grade 2, 100%ER+ 5%PR+, HER2 negative, BC on October 9th. I was supposed to have my surgery on October 21^st, but my surgeon canceled it because I have a health condition that causes nerve tumors to come on my skin and if I was to receive radiation, there is a high possibly that they could cancerous. I met with the Radiation Oncologist to discuss this issues and she told me she would never due radiation on my unless I had a lift threatening condition. I finally was able to have my surgery three weeks ago, a lumpectomy per surgeon's recommendation. He was able to get clean margins. I saw my Oncologist yesterday and she told me I had an 8% chance of reoccurrence with chemo and HRT, a 10% with just HRT, or 20% with doing nothing. I have decided not to do the chemo because it scares me too much. I decided I didn't want to do the OncoType test because I was told that if it came back where it indicated that chemo would help, I would have to do it. There is only a 2% difference and it's not worth it to me. I hope I have made the right decision with not being able to do radiation. I'm really scared.