Newly diagnosed with ILC

Hi Fighter,

So sorry to hear you are going through this. I went into surgery thinking I was stage 1, possibly 2 and came out stage 3a. Had 6cm ilc tumor, positive margins, (will have re-excision surgery at time of implant exchange) which will be after chemo and radiation. Lymphvascular invasion present, as was perineural (still not sure what exactly that is) and 4 positive nodes with extranodal extension, which means cancer cells were spilling out of the nodes into the surrounding tissue. Highly ER positive 95% and PR positive 50%, KI-67 5%, which means it is slow growing. Grade is also a 2. I can't say that I know what it all means...I honestly don't understand how it can be grade 2 and so slow growing (perhaps the wise women on this forum can help me out too)they truly know their stuff and they help me so much. I don't post a lot but i feel like i know every single one of them so well because I read everything they write. lol. I just wanted to share my diagnosis and let you know that my doctors are very optimistic and use the cure word for me, which gives me peace. I also had a PET CT scan, which was clear. I just finished my dose dense AC and will get Taxol on Thursday. Am doing very well so far with little to no size effects (praise God). Come to these boards often, as these wonderful ladies will be along shortly to answer your questions. Love and Hugs to you,

Karen

I never got lymphodema the first time and so far my arm is fine after my most recent surgery. Had 7 nodes removed this time and 4 the first. Time will tell. I have recovered very well after both mastectomies, in fact this surgery was easier. Reconstruction with my tram flap looked awesome, you could not really tell unless you were right up close that they weren't my original breasts. Reconstruction can be amazing these days, both flap procedures and implants. I'm not sure what the implants will look like but so far I'm not too scarred and I filled the tissue expanders really well (knock wood). The tissue expanders are a bit uncomfortable, but short term. With regard to your question about nodes and lymphadema, I think we all vary in the number of nodes we have, but i think we all have an abundance of them. Perhaps the body replenishes them when they are taken out? I never thought about that before. After my second mastectomy I still had a sentinal node in my breast so was it in there after my first mastectomy, or did i develop a new one? crazy question, but seriously how did i get a node in my remaining breast tissue after my first mastectomy? anyone??? I will be taking tamoxifen when I'm done with treatment. Right now I am half way through chemo. Things will get less frustrating as you go step by step through your treatment process. It is so overwhelming, especially with young kids. Hugs to you. Lol

Hi fighter, I had a T4 (because the tumor had grown into the skin) and 7 positive nodes, so I got the whole works, scans, chemo, rads, hyster (I am older than you, I think, and was on the edge of menopause anyway) and am now taking an AI.

Like you, I decided on BMX so I wouldn't have to go through aggressive surveillance on the other breast. The first doc wouldn't do it, so I got another doc. My "good" breast had a bunch of pre-cancer junk, LCIS, hyperplasiastic cells etc. I have no regrets.

I did not do recon, at the recommendation (insistence actually) of my surgeon. He wanted me to wait 2 years, both to make follow-up monitoring easier and to allow my skin to heal from the rads.

It is all daunting and upsetting, especially in the beginning, where you are now. Allow yourself to freak a bit, but also do not be afraid to ask for help. This is not a normal life challenge, it really is harder than the average stuff. I had a xanax script in the beginning. I only took a pill a few times, but it made a huge difference. It allowed me to sleep and nipped the anxiety and freaking out in the bud, before it became a way of life. A psych or support group or both may also be helpful and then there are the great ladies here. Don't try to be a hero.

As for lymphedema, I had 22 nodes out on the cancer side. I have Olive Oyl arms, so at first the docs did not believe me when I told them I had swelling. For me it started in the armpit and at the top of the arm. I started PT about 6 weeks after the surgery and got weekly lymph draining massage all through the rest of my treatment. I also wore a sleeve and glove all the time that first year. 6 months after the surgery, thanks to these interventions, my arm was back to normal, and it has stayed normal size so far.

I can't recommend PT warmly enough. In my opinion, all women going through this should get immediate and regular PT as a matter of course. There is some indication that prompt and proactive PT can prevent problems.

There is also indication that staying active and at a healthy weight can help prevent lymphedema. Since this is also helpful against the cancer itself and the side effects of treatment, I highly recommend doing some sort of exercise daily, even if it is just a half-hour walk. I went back to the gym after finishing treatment (during treatment I just walked a lot), and I wear a sleeve and glove when I work out. If you start gently, gently and work up slowly and regularly, you can do a lot. I am probably stronger now than I have ever been.

Very surprised that fighter did not have MRI prior to the lumpectomy. I thought that was standard of care in the US - perhaps she lives somewhere else? 

So sorry that the news seems to be going from bad to worse. I wonder if a second opinion, from an academic medical center with a team approach would be helpful. 

The body does not make new nodes (doctors are experimenting with surgical transfer from another location) but some people have a "stronger" lymphatic system and do not swell even when many are removed. Almost impossible to predict who will be affected. Momine gives good advice. Insist on having pre-op measurements done and do not raise your arm above your head for several days, give the disrupted area a chance to heal a little.

Good luck on Tuesday Fighter. Sending you good healing vibes and positive thoughts. 

I have just been diagnosed with ILC 5 days ago - horrible shock. Getting scans, etc done this week and seeing my surgeon Thursday, partial mastectomy and SN on Saturday. Scared stiff. Wondering if I should discuss bilateral mastectomy now. Would think about no reconstruction as couldn't face the recovery time, is this too soon to think like this?

my younger sister, 49, had right mastectomy with reconstruction on monday, 8/19. she was dx on 7/15 with ILC.

surgeon reported to us that 2 of 4 sentinel nodes were positive so 15 axilary nodes were removed. we have to wait 10 days for path report.

my sister and all of us are scared, worried, nervous...you all know the feelings.

I'm happy to be able to come to this forum and meet others who are/have gone through this.

It's so good to come to this site while my sister navigates through a dx of ILC. healing well after R mx w/ immediate reconstruction. preliminary path showed 4 areas of lobular cancer and 3/23 nodes + for tumor (these are surgeon's terms). two of the nodes are benign (? not sure what this means) and one had microspecs. final report is still not back so there will be much more to come. Anyone that can comment on the two nodes which are benign?? if this has been the case for you, I'd love to hear what you think it means. Thanks to all.

Fighter I just wanted to say I'm sorry you're in this club.

I just finished a masectomy with expanders 70 days ago. Honestly, the surgery and recovery were the easier parts of all of it.

The anxiety of what's to come, the waiting, the second guessing, all the Dr appts, the work family issues, money etc. it's all so hard.



Get into a support group if you can. Ill never forget my first meeting all these gorgeous women who'd made it through told me I could do it. It made a world of difference. No matter how supportive and loving your family and friends are, no one knows better than a fellow survivor.



Just do it one day at a time. Right now I'm struggling with my cancer meds but I can do it just for 24 hours at a time.

Fighter, I am so sorry that you are going through this. I hope you are healing fast and have no pain.



Pretty, i know you are worried about your mom. Do you live close to her? If not then is there someone with her that can explain whats going on that is confusing to you. Healing hugs going out to you and your mom

Ladies, good luck to all. The shock in the beginning and all the tests. Ugh.. Everyday you get a new piece and have to figure out where it fits in the puzzle. but it will come together and you will make it through!



Big hugs!