What's next??

JRM99

Hello again ladies. So at my mammo and US in June 2016 I heard the words "If there's anything there at all it's early and it's small". Had bx which showed ILC, low grade, classic subtype. After my MRI in July to confirm size, I heard the words "So it's slightly larger than we thought....5cm". Had right mastectomy, a total of 8 nodes removed Aug 11...... surgeon called this week to tell me some of the path was back. Total size of cancer was 8cm....got clear margins....only one node had a 4mm deposit of cancer, the others were clear. Don't have hormone status back yet but surgeon believes it will be hormone +. I am 41, premenopausal and feeling that this is very surreal. My mind is racing. One minute I am feeling reassured the next I am panicking about everything. I have two kids, 9 and 11 and can barely look at them without tearing up. What will happen next? Is this something treatable/manageable after a tumour of this size or is there a bigger risk of reoccurrence? What about distant mets with grade one and only one node affected? The surgeon said I would definitely be getting radiation and hormone therapy but she couldn't say about the chemo. Thanks for your help, appreciate it.

Momine

Blech, sorry about the shock of the path. ILC tumors often cheat the docs with regard to size. However, clean margins is good news. Only one node is also good news. Right now you need to breathe whenever you are able. Try to find one pleasant/happy thing to do each day. Once you have treatment sorted out, it will get easier. Chemo yes/no will probably be the biggest and most difficult decision. Does the hospital have a board for discussing ambiguous cases? Is there a dedicated cancer unit at a different hospital in your area where you might get a second opinion? I found second opinions to be very helpful.

JRM99

Momine, thank you for the encouragement. Hope you are well

Woodylb

JRM99,

I am so sorry you had to get such news. I know it is scary and shocking and overwhelming but it is not hopeless. ILC is a very unpredictible cancer and is very hard to detect on mammo or else. I had 20 positive nodes out of 21 and it never showed nor did my tiny tumor which was subcemetric in the breast. I was getting a mammo every six months. So do not be surprised or shocked ILC is tricky. It is also usually hormone positive. clear margins are and one lymph nodes is not bad also. Mastectomy is usually advised for ILC and so is chemotherapy when there is lymph nodes involvement followed by hormonal therapy. However, do not think about distant metastasis and let your mind wonder, it will only make you miserable. Like momine suggested a second opinion is useful. I wish you good luck and good health.

Optimist52

Hi JRM, when will you see an MO? It sounds as though you would probably be eligible for an Oncotype DX test which can predict the value of chemo for you. ILC can grow in a spider's web type pattern and that is perhaps the reason for the larger measurement. When you get more of your pathology results could you post them on My Profile and make it public so we can see more details.

Hope your children are distracting you during this difficult time.

naps

I just wanted to offer encouragement. I had my mastectomy on Aug 11 also and am waiting to hear about the next step (for me, radiation vs more chemo.) The uncertainty is really, really hard, and I can totally relate to how much painful anxiety there can be when around the kids. Mine are 14 and 10.

I am trying to stay grounded in and pay attention to each moment as best I can. I have found daily meditation and exercise to be helpful. I also am seeing a therapist for the first time in my life which has been a good outlet for me, I think. Sending warm wishes for health and strength to you . Take care!