So scared and confused

Hi Julie,  I see that you have posted the very same questions I had in the early days.  If you do not want to wait until Tuesday to talk to your surgeon, perhaps you could request a phone consult.  

It's common, as you have probably found reading posts here, that we find out our tumor is "larger" than the mammo first showed, or there were "foci" of cancer cells in the nodes that no one expected.  This is especially common with ILC.  This was what happened to me, too.  

As to "what it all means?" ... I guess it means you will need to gather information now.  What do your doctors (surgeon, oncologist) say would be the best treatment(s) for you.  You may want to get second/third opinions on this, too.  I did and it helped me.  I would like to say, though, that their opinions are based on statistics based on large numbers of women.  YOU are unique!!!  Trust yourself to decide and don't look back.

By reading about all of us and our experiences, you can learn how we have come through this and are O.K.  For me, I will be 8 years out from my diagnosis this summer.  We can support you, and you will be supporting others, too.  Please keep in touch with us.

Warm hugs.  (BTW I was born in Bethesda.)  Gitane  

Julie

It's true - not knowing what lies ahead is the most traumatic time.  Once you know what your treatment plan is, you will feel a bit more at ease.

Have a look at the bco pages about different types of breast cancer (you can find it on the front page of this website) ILC is different from IDC in that it is a lobular cancer that forms differently.  IDC - or Invasive Ductal Cancer (or Carcinoma) forms in the milk ducts.  IDC is the most common breast cancer, and ILC is not quite so common. ILC is typically slow growing and ILC is usually slow growing.

I had both - in the same breast.  The fact that two of your lymph nodes were involved, means the cancer was starting to spread - but was contained in the lymph nodes.  It's worrying that there was cancer there - but not the end of the world.  You only had 2 involved - not 24 - that's good news.

It's really hard to not focus on worrying about things, that worry will be with you for a long, long time.  You have to learn to take things one day at a time.

There is so much knowledge and information on this site, you will slowly gather information and after talking with your surgeon you'll be better able to see the road ahead.  You will have dark days too - it's not easy staying cheerful and positive all the time.  This is scary stuff. I just got through each day, by focusing on what was happening at the time, not thinking ahead.  Most of the time I was positive, but there were lots of days when I was depressed and angry and confused.  That's normal.  Knowing that it's normal helps too :-)

You will find a lot of support here - so ask anything, vent away and seek help, you'll get it here.

Trish

xoxo

Julie

You can keep this thread running while you are still trying to sort though things, or you can join in other threads that are talking about specific things, or you can start a new topic with something specific.  You can also pm members (private message) although as a new member I think you are limited to the number of pm's you can send until you reach a certain number of posts.

There are many threads about many different aspects - you are in the ILC page, which is probably a good place to start and connect with other women with ILC.  Once you know the hormone receptor and HER2 status of your tumour you can also get good information from pages that deal specifically with those subjects.  You are also very young - there's a page, or thread somewhere for younger women who might be able to support you too.

Be prepared when you see your surgeon to be told your homone and HER2 status - that along with the size of your tumour and lymph node involvement will dictate the type of treatment you'll need - ie just hormone inhibitors or chemo etc.  Once you know that information you'll probably feel overwhelmed again, but that's normal too :-)

Sending you ((((hugs)))) from down under, and stay in touch.

I reread what I'd put in my last post - and I meant to say that ILC is slow growing, usually, and IDC is generally a faster growing cancer.

Trish

xoxo

Julie

you just put one foot in front of the other--and think about all the good things--- I made a list and carried it around in my pocket-- so your list might be :  already had surgery, have an appointment next week, very little node involvement-so your nodes were doing their job, catching it, you are healthy, the cancer is "gone" since you have had your surgery, you have beautiful and talented children, and xanax is your best friend for the next week.

my girls were 7 and 12 when I was dx-- and the single most frightening thought I had was that I would not see them grow up.  Now, mind you, there was nothing in my dx that indicated that, but I went straight there.  But, I gradually came back.  I had tape recordings of all of my dr. appointments where everyone was so optimistic and helpful--- the only really bad news I ever got was that I had bc... everything after that was upbeat and positive and language like "cure" was used---so I decided that was what I would believe and I do, to my core, believe I was cured. 

This probably sounds far fetched now, but I am almost 5 years out and I really mostly forget that  I had bc.  I come here for information now and then and I also try to reach out to people who are at an earlier stage.  My gyn described ILC as slow and lazy-- and I think that is true.  Whatever you need to do, say, believe to get you through this, do it.  This is so much more a mental challenge than a physical one.  What we say to ourselves is what we believe.  I am not suggesting that you become pollyanna-but I figure we can be positive or negative.  Positive just works for me.... may not work for everyone else.  

hug your kids, take the xanax, get some sleep..... as things become more clear, you will feel more in control......

keep us posted.

Julie, The initial shock of the diagnosis is really tough. I can remember waking up every morning for months and having about 5 seconds of feeling good before remembering that I had been involuntarily transported to "Cancerland." It was the worst- can't emphasize enough how bad it was for me. I never would have believed then that I'd be alive today writing this to you- or all the things that have happened, many of them wonderful, since diagnosis and treatment. 

Time helped, walking helped, taking control of the things I could control helped. The ultimate magic bullet was starting Lexapro in fall of 2007, when I was finishing radiation and emotionally at my worst. Within a week my obsession with metastisis, death, etc., was gone and has never returned. I still take Lexapro because 1) I never want to think/feel like that again and 2) I experienced other benefits- huge- like losing my lifelong fear of flying and as a result having fun new experiences that otherwise never could have happened.

Not that all of this would apply to you but maybe something in this may help you. Hang in there and keep reaching out and talking. Paige

Dear new ILC members,

I remember feeling the exact same way. Xanax was my friend for the first few weeks after dx. You wake to the nightmare and sleep to forget it, yes.  But you will adjust to this new normal, and all of these awful feelings are mostly temporary.  Don't worry about spending time forcing yourself to get to a "positive" place yet. You are still in shock. 

Eventually you'll understand that you are here, you are alive, and with whatever tx you choose you are giving yourself the best opp to live a long, long life. 

Word of advice:  don't go to Dr. Google until you feel calmer.  I did, and the old, outdated stats and research scared the h*ll out of me.  Inform yourself, but don't allow internet crap to frighten you--you are already there.

Hugs,

Claire

Hi Just-julie,

How are you doing today?  Just wondering about you.  In my world--the sun is shining, my husband is healthy, I love my fur children, and I'm looking forward to a long life.  I hope you can find something in there that will inspire you, too.

Remember:  empower yourself. Every good choice you make for your body, to me, is a defiant gesture to cancer.  Every walk, hike, yoga practice, weight-lift, healthy meal, laugh, hug...it's all kind of like flipping the bird at cancer (forgive for the crude-type reference).

Hugs,

Claire

Julie - Lot's of good responses already. I'm another one who relied on Xanax those first few weeks while I was waiting to come up with a plan. It's amazing how much easier everything seems once that's in place. Remember to make time for you while your going through treatment. I found that I really felt better during treatment if I exercised each day. As moms, we tend to everyone elses needs. It's important to make time for yourself too! (((hugs)))