How did you treat your ILC after BMX w TEs? Chemo? Rad?

warriorwannabe

I have a large (at least 2.5cm) Grade 2 ILC with prolif rate of 10-15%. Im having my nodes biopsy 3/23 and my BMX (skin and nipple sparing) with TEs on 3/30. Ive had no other tests. Thats right, no body scan, bloodwork, nada. BS says those are unnecessary at this point, that after nodes biopsy we know more and go from there.

I dont know of course if I will need rad, or chemo, but I know they will give me hormone blocker because Im ER+, and PR+, again AFTER surgery (I remain unclear why not NOW). I cant wrap my head around why they are not rushing me to the OR or at least giving me a hormone blocker now. Yah, I know ILC grows slowly, but still, how do I know that my nodes wont get cancer from now til then? OK, rant over.

Please tell me ladies, in your experience, what is the "normal" course of treatment for my situation? Ive read so many stories about MOs treating ILC like IDC, overtreating with chemo that may not work, and Im still unclear as to whether radiation is done after BMX. I cant even take a sudafed without feeling loopy, so can you imagine me on chemo???? WOW. I want to be ready for information when it comes time to see the MOs.

THANK YOU SO MUCH for helping me on this rollercoaster.

jojo9999

Since you are ER/PR + they they are probably planning to do a oncotype dx test. Ask about this now, ask if they will send your tumor sample out for this test ASAP. In my case, I first met with my MO 2 weeks after BMX. He ageed that I should have the Oncotype dx test. The test takes a few weeks, all in all, I got the score 6 weeks post BMX - in retropect, I felt that was way too long. Thankfully I had a low score so no chemo. As for rads, it all depends on your nodes. If they are clear, you may not get radiation. I was told that if my nodes were clear, my sum total treatment would be MX and tamox. As for not starting on tamox immediately, I am not sure. The meds can give side effects, I don't think they want you under multiple treatments at once, if problems crop up. I didn't start tamox until I was finished with rads (I had 1 positive node, micromet, so I got radiation to breast and nodes. I also think my radiation was delayed waiting for the onco score. they could have sent it out at time of bmx saving me 2 weeks. maybe there was an inusrance approval they were waiting for.)

grandma3X

I had these same questions, warriorwannabe. I was diagnosed in early November, had to wait until mid-January for surgery, then didn't get an appointment with the MO until a month later. Here it is March already and my Oncotype is not back yet because of a mixup with the lab that does the test. The earliest I'll start on endocrine therapy will be March 15th, over 4 months since diagnosis! However, I did have a chest X-Ray, CT and bone scan because of abdominal pain and rib pain before I had surgery. They came back clean and my SLN was clean as well, so my oncology team is pretty confident that they caught the cancer before it spread, in spite of its large size. I would say that unless you have other symptoms of metastasis, doctors won't routinely order other scans.

Some reasons why they don't start you on AIs or Tamoxifen right away (others may correct me if I'm wrong!): 1) they can interfere with the way your body metabolizes anesthesia used during surgery and chemotherapy meds while having chemo, 2) they stop cancer cells from growing, which may reduce the effectiveness of both radiation and chemo. I think these are the main reasons they are not given until you are finished with all other treatments.

Best wishes - the anxiety is the worst part of this process, but lessens with time. If it helps, I found that surgery was much easier than I anticipated, so much so that I've scheduled a prophylactic MX of the other side in May, just so I won't have to deal with the anxiety of wondering if and when cancer will strike my good breast. I posted a description of my "good" surgery experience in the Pain thread - just search for my login name under that thread if you are interested.

warriorwannabe

grandma and jojo, thank you SO MUCH for your reply. That does help a lot. I feel like a ticking time bomb. Every little pain and ache I get, esp on my left side, takes my mind to that dark place. I will ask about that onco test today. Im at work, in meetings, trying to resume normal life until BMX day, but I do sneak check these boards for replies to my posts!!!

vbishop

Weighing in here...

First, breathe. Easy for me to say since I've been through the big stuff already and I'm 2.5 years in.

We all want the cancer out NOW, but you want to make sure the docs have all the information they need to determine the correct treatment plan. The oncologist may or may not order a PET scan after the sentinel node biopsy - almost a definite if you have lymph nodes positive for breast cancer. For me, chemo was not completely ruled out until my oncotype score came back (7). It took 4 weeks to get the results.

Because I had BMX and no positive nodes, radiation was not in my future. There was a time when we thought we may have to go there because of a close, but negative, margin. However, the oncologist determined the risk of radiation far outweighed the benefit. Just note, that if you start reconstruction and then it is determined that you need radiation, there is a good chance that you have to stop the reconstruction until after radiation because of the damage to the skin.

I was put on Arimidex a couple of weeks post BMX. The Arimidex had no impact on my reconstruction surgery 6 weeks later.

Hang in there! It gets better!!

Chloesmom

12/14 BMX. 2-4/15 chemo. 4/15 to forever letrozole