Massive ILC tumor, not all gotten with 1st mammoplasy

Hi Chris, I am sorry--you are going through a really rough time, and I know how hard decisions can be at this juncture in the process. Try not to despair and put a death sentence on yourself--you could live another 42+ years and be around to see grandchildren! I cannot really advise you, as each person's situation is different, but if I were you, I'd pursue getting clean margins aggressively.

You will probably be offered chemo. Other than that--do you know the pathology of the tumor yet? Does it have estrogen receptors? I have been reading, and I believe it was my friend's experience, that Tamoxifen is not that effective with ILC. So, if you do have estrogen receptors, I'd ask my doc about that and what is the best hormonal treatment for ILC, esp. given your young age.

I wish you all the best, and keep posting--you will get lots of support here.

I agree that you may very well have at least another 42 years ahead of you! That said, and due to your young age at diagnosis, you may want to be evaluated by a genetic counselor at some point down the road (too much going on right now so just take one step at a time)

It also felt like bad news at every turn for me when I was being worked up. Several months from now you will have better perspective. Enjoy those kids - they can keep you busy and distracted, in a good way...

Just noticed we both have Wisconsin roots. There is a thread here under "help me get through treatment" where we talk to former residents, discuss the Badgers/Packers, etc. Stop in and say hi

Hi Chris,

I'm very sorry to read about your dx. My tumor was massive. It was more than 8 cm so I certainly relate to the fear that comes with knowing you have a tumor that large. I was treated with chemo before surgery and while I did not have a complete response, it did shrink to less than half the size by the time I had surgery. I had radiation after surgery. I also have 2 kids, now 13 and 11. I just celebrated 1 year cancer free and live my life each day. It is a difficult and challenging road but you will get through it. I did my best to focus on each step of the journey and not think too far in advance. During chemo I tried not to worry about surgery. After surgery I focused on recovery and not upcoming radiation. During radiation I took it one day at a time. I found it easier for me to break it down into segments because it was too overwhelming to consider all that was ahead. I wish you the best. May you have nothing but happiness in the next 42 years!

I was diagnosed with ILC a month ago and the wide local excision did not get it all due to occult imaging and usual story or branches not seen on imaging. I then decided on a mastectomy as advised by team meeting. I am 42 and in Aus too. I had my first chemo today 9 days post op as studies indicate chemo sooner than later has good outcomes. Mine is multi focal. I am ER/PR + HER - they want to induce menopause and use letrozole as a large study indicated lobular reacts much better with it over tamoxifen. Wishing you the best

My wife had a lump in 2008 in her breast, it was diagnosed as IDC w/ some lobular.(ILC)Stage 2B-- The 1st lumpectomy did not get a clear margin, the 2nd one did. She had a small (.3mm) in the sentinel lymph node (3mm) They removed about 6 nodes. Lobular cancer puts out fingers, and is not seen often in mammos, or ultrasound, and breast MRI imaging is needed to see extent, we were told. She had 6 cycles of TAC chemo, radiation and was on Arimidex for 5 years without recurrence, but the surgeon took a huge margin the 2nd time, I think the cancer was 4-5cm after 2nd lumpectomy.

I also have ILC and like everyone else was shocked at the size.  But as several of you have pointed out, a large area of ILC is not quite the same as an IDC lump that size.  My MO has basically said to focus on my treatment and not on the "stage" as ILC is a different animal and harder to stage accurately.  

I have a friend who was diagnosed with ILC over 30 years ago at age 42 - extremely large area and 16 positive nodes.  After a mastectomy and chemotherapy, she's here today still doing just fine.  

cyndi, the number I have seen most often for the upper limit of micrometastatic lesion size in sentinel nodes is 2mm. Larger than that is called macrometastasis. There is also a condition of lesser involvement when isolated tumor cells are observed, sometimes in clusters but no bigger than 0.2mm...

With family history and, assuming your cancer was present although undiagnosed prior to age 50, you might qualify for mutation testing. Do you have a genetic counselor available to evaluate the situation?

Chris,

I am also sorry to hear that you are going through this. It is hard to be positive in the beginning because there are too many unknowns. Waiting on surgeons is difficult, but once you are through with that and can meet with the oncologist and discuss future treatment, you will probably start to feel better. Hopefully, people in your community will be able to offer support to you and your family. I am a private person that does not like attention, when I was diagnosed a neighbor sent out a sign up for meals (I was so embarrassed) and after my surgery complete strangers delivered full meals to my entire family, I cry just thinking about the kindness of complete strangers. Many people have had cancer impact their families and they want to help others. I know your family is not close, but let the people around you know that you might need some help and hopefully they will come. I too had ILC, prior to knowing that I chose a mastectomy, my doctor wanted to do I lumpectomy, but I said no, had I not, I would have had to go back. ILC makes everything difficult, diagnosis and surgery. You and your family are in my thoughts and prayers. Be strong, you can do this.

Encouraging to hear about gals so many years out, including three decades for gkodad's friend!

Not to hijack this thread but need to remind Cyndi that there is much more out there than the basic BRCA 1/2 defects. Rearrangement testing along with several "new" mutations means a follow-up with your genetic counselor could provide another perspective and offer alternatives to others in your family if something was found...