Hard week

needtotalk

Hard week

needtotalk

Hi there.  I was just (Wed) diagnosed with ILC.  what a shocker.  It is so amazing to come to this forum and read all of your stories.  I had bone scan and chest xray yesterday and I am so afraid.  From what I understand so far my tumour is small 1.5 cm and it is Grade 1.  I think that is good, but so afraid of what they will find on other tests.  Can anyone give me any encouraging news.  I am really in need of it.  Thank you and hugs to all of you.

Anonymous

needtotalk----I saw your post and just had to respond.  What you're feeling now is fear of the unknown, you'll start to feel better once a plan is in place.  My mom  had ILC--stage 1 or 2--had lumpectomy, radiation and tamoxifen, and is now a survivor of over 21 years without a recurrence!  That gives me hope (I am high risk from LCIS and family history) and I pray it does for you as well.

Anne 

bean4865

needtotalk,

I know how scary this is for you. I was diagnosed in October 07 with ILC. My mother just went through ductal breast cancer-lumpectomy and rads. She just finished with her treatment when I was diagnosed. What a shocker. When I first found out I was in shock. My doctor kept telling me that 9 out of 10 times it's nothing (biopsy).They only did the biopsy because now my mother had breast cancer otherwise he would have brought me back in 6 months. I had no symptoms whatsoever. I thought breast cancer was breast cancer. When I found out I had the sneaky one...even more of a shocker. I had a MRI that showed tumor at 8cm. (wow) the size of three fingers. I went for mammos every year since 40. I am now 42.I had my paps and clinicals every year so go figure...how could I have a tumor this size. My mastectomy was done on Dec 14. Tumor turned out to be only 2.1cm with extensive LCIS.

After the shock of being diagnosed I was just scared. I have a wonderful husband who was on his death bed twice in the last year (kidney disease) but is doing good now then all this.I also have three beautiful children ages 16-14 and 10. After the fear I got angry and thought this disease will not conquer me I will conquer it. So far I am doing good. I don't know what my treatment is going to be yet. My oncologist has been out sick for 2 weeks...just my luck! So hopefully will see him soon and move forward. I am not so scared anymore. The feeling will pass. Maybe I just don't dwell on it anymore. I was obsessed at first and I certainly learned so much about this disease on this site. These people are all so kind and helpful. Please hang in there and if you have any questions don't hesitate to ask. God Bless.

trigeek

Hi need to talk !

Sorry that you had to join the ILC gals club. But your prognosis is REALLY good, cause ILC tends to be diagnosed when the tumor is usually a lot larger I was told and 1.5  cmwith grade I is spectacular ! ( well in this situation.. at least funny how our perception of news differ overnight )

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I too had been getting yearly mammograms AND ultrasounds for 5 years(extremely dense breast tissue) and it only got caught on the radar this year .. go figure !

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I was also told that ILC is usually a lazier kind and the long time prognosis is really good ! Especially when caught early like yours.

You are going through the toughest part of this journey .. once the uncertainties are removed,  your treatment plan clears it gets easier to just go through the motions.

Hang in there and we are here to hold your hand throughout .. remember !

Linda-L

Hi Need to Talk--

Your prognosis sounds really good.  Once your scans and pathology reports are done your oncologist will go over your staging and prospects.  Take a tape recorder so you can listen to it more than once.  I have stage IIB ILC.  I had a lumpectomy first (lumps in armpit which turned out to  be 4 positive nodes), MRI that found 1.5 and 2 cm lumps in breasts, then chemo, then bilat mastectomies which showed the cancer was completely knocked out by the chemo.  (Still will do rads.) ILC tends to be slower and less agressive than some other types.  If you are Herceptin negative and estrogen and progesterone positive (will be on pathology report), your prospects should be somewhere around a 99% survival rate, based on the reports I've seen and the data my doc gave me.  I know it's really hard waiting to get all your tests done and find out what's happening, but try to relax and keep telling yourself, "Right now, I'm OK." 

needtotalk

Linda.  I woke up this morning feeling so scared, but just your words "Right now, I'm OK" hit home.  Thank you.

Anonymous

It may also help if you think of all this as another chapter in your life. This chapter will be challenging, but remember that the next chapter will be better. Alot of us here are living the next chapter, and so will you! Hang in...keep us posted...we'll help you turn the pages.

Maire67

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trigeek

Needtotalk, one of my september chemo gals (livinginboji) gave 3 quotes from a book that she read, thought I would share with you:

1. It is a strange disease indeed that leaves you feeling far worse at the completion of treatment than you did at the time of diagnosis!

2. Why waste a good day worrying about a possible bad day in the future?

3. Many women feel that bc has given them a second chance. Grab it and hold on for dear life!

needtotalk

Thank you.  those are wise words.  But all of a sudden, I am feeling so anxious.  My appt. with the surgeon is tomorrow.  My tumour is 1.5 cm and grade 1 (that is all I know at this point).  I have had a bone scan, abdominal ultrasound, and chest xray.  I get the results tomorrow and I could throw up.  I have been also looking on the internet and they say that a tumour can mestatasize at ANY size.  I thought I was safer that it was smaller.  Anyway ... I am scared

nash

The smaller tumors that mestatasize are generally grade 3, HER2 positive.

Good luck at the surgeon, and keep us posted. We're all here for you.

VBG

Okay I too has a 1.5 cm tumor grade 1 dx in June '06, 0/2 nodes.  Have any of you been told that ILC many times has muilpe focal points?  I asked for an MRI at the time of my dx and was told there were no other "spots" .  I asked for a follow up  MRI in Dec '07 there were 2 other "spots" that were found, 6 mm and 2mm that they believe were part of my original ILC. Actually they only called out one spot at the time which they removed.  My case went to the "tumor board" and they said in reviewing my prior MRI one of the spots was visible.  They also identified the second mass which they told me they now believed was cancer.  In making decisions about what to do I have now been told that grade one ILC many times does not respond to radiation.  Mine also did not respond to tamixifen.

I am now looking at a bilateral mastectomy and the possible removal of ovaries so that I could start AIs.

I am so frustrated with my Docs and the fact that they did not give me all the facts and information about what I was dealing with.  I am now thinking I need to get a whole new group of Docs going forward since I have completely lost faith in the ones I have.

They keep assuring me that the chances that this has spread is low but it is unbeleiviable to me that this cancer has been growing for the last 18 months when it could have been removed.

Needtotalk I hope that my experience will help to insure you ask lots of questions and gain lots of knowledge before deciding on treatment options!  Best of luck!