Newly diagnosed

Hi Jeannie

Sorry for everything that you're going through, but this board is wonderful and the ladies and gentlemen here have a wealth of knowledge and experience.

I was diagnosed with ILC in November. From what I learned from my experience, it is hard to see and hard to detect because it does not form a "lump" but more of a "line"... It also has a slightly higher percentage rate (my BS said 20%, my PS said 30%, from their personal experience) of occurring at some point in the opposite breast. That, coupled with a few other reasons, made me decide to have a BMX. I also did immediate reconstruction with TE's (tissue expanders) and will have exchange surgery at some point this year, after chemo and radiation.

I'm 43 and knew that I did want reconstruction, lots of women don't. It's a personal decision.

Have you met with an oncologist yet? I met with mine before surgery and am glad I did. She was able to communicate with my surgeon about where she wanted my pathology done, and what testing she wanted done. It seemed to move things along quicker and was more reassuring for me.

Dear Jeannie, Sorry you joined our club.  I remeber getting all sorts of weird information during testing regarding my ILC.  It made me crazy.  Cancer is a long tough road.  Remember you don't have to be brave.  You just have to do it.  

I ended up with a bilateral mastectomy with immediate silcone implants.  I am small chested so I came out of surgery looking close to they way I looked going in (only "perkier").  I knew going in that my tumour was too big for lumpectomy so I was already thinking about reconstruction early in the game.  Turns out I had quite a bit of cancer and pre caner in the breast with the big lump and SUPRISE ! cancer in my other breast.  So, I was glad to get rid of both.

 I remember deciding on the bilateral when I realized I would need to have the "good breast" tested every six months and I couldn't imagine facing the worry over and over again.  Of course I didn't realize how many other tests I would have over and over again after cancer treatment. 

OK I just rambled quite a bit.  Sorry about that !  See if your surgeon has someone in his or her office who can spend some time talking to you about all the options.  My surgeon had a nurse who sat with us and reviewed my surgery and reconstruction options.  It was helpful.

Good luck ! 

Hi Jeanne,

I have a nearly identical dx as you, yes some node involvement, dx on 9/29/11.   Right now I'm finishing chemo (AC DD followed by 12 weekly Taxol), then radiation, then after a waiting period, bmx and recon. I'm having the bmx because of the very nature of ILC as others described--hard to pick up on mammograms. I had five regular ones over five years that were clear. I found my lump myself through a BSE in mid-August.  I also have very dense breasts which add to my belief that I'm not protected with mammograms. Even ultrasounds don't pick up our type of BC. I had my lumpectomy with clear but close margins on 9/29 and that's when I found out for sure.  

What I wanted to share with you is that if you search ILC, you'll find it has a bit more positives about it than IDC. That information made me feel a lot better. Make sure you read the scholarly studies, though.  There's a lot of crap out there that can just scare you...

Welcome to the ILC club. We're here for you.

Claire

Hi Jeanne, I'm sorry you have to be here. I wish I had found these boards prior to my surgeries, so much information and support.



MRI in Sep did not even pick up my ILC, or nodal involvement but did light up something in my other breast. US did show two areas in my left breast and then biopsy confirmed. That should have clued me in regarding the strong possibility of needing chemo.



I had bmx with immediate tissue expanders placed. I was so torn about that decision and felt a bit "talked into" it by the ps and my docs. one of my breast surgeons even had the same surgery.



I dont tell you this to sway you or make your decision more difficult, but I HATE these expanders. Had I known I would def be getting chemo that would have made my mind up for me. There are other reconstruction options, but I don't feel it is important to me. Everyone is different.



I will have mine removed as soon as I can, perhaps even before radiation if the roc suggests, and choose not to have any further reconstruction.



I do know many woman are very happy with their results so you may want to check other threads.



I declined the MRI guided biopsy on my right breast and after my bmx it was confirmed that there was a small DCIS area. So I am glad I made that decision.



Keep talking and asking questions, and i hope you have Drs you feel comfortable with.



You know yourself best, trust in yourself too.



Blessings and best of luck,



Laura

Dear Jeannie:



You are in the right place to connect with women with similar diagnoses. I had a very large tumor, around 7 cm, that was 1.8 cm by the time of surgery after chemo. ILC, of course. Did not show up on mammograms, and I found it myself. I have extensive node involvement. I'm headed now to rads and hormonal therapy after recovering from my BMX on 2/6. They did not find cancer in the other breast, but I am still glad I did it. I did not do recon. I just felt I was dealing with too much already to extend the process for up to another year with a possibly bad aesthetic outcome due to the rads.



Wishing you all the best...

Jeannie, good girl! Do let us know how it all goes.

Hi Jeannie! I'm so glad to know you've got a good team of docs. That's the most important thing, besides this group of gals for support.  I had a BMX with tissue expanders in Jan. '08, with my breast surgeon and plastic surgeon coordinating everything at the same time (2 surgeries back-to-back, 3 hours each). I was in a surgery center overnight and home the next day with one drain in each side. A little sore at first, but mostly from the chest heaviness. Couldn't lay down flat in my bed for 3 or 4 weeks, so I slept on the couch at an incline and watched old movies. The most important thing for me at the time was rest and lots of interaction with friends and family. I honestly look back on it now as one of the best times of my life. Flowers, poetry, lunches brought in, hearing from old friends, my sister and mother-in-law and kids coming to visit. I was 42 at the time, but my kids were older at 20 and 19. I found myself feeling very thankful that it was me going through this an not my sister, who had young children. Odd, but I was at peace with it. Best of luck to you, and I'll keep you in my prayers!

Hello sweetie, I know what u are going thru I went thru a roller coaster ride also, I was diagnosed then got a call and siad it was a mistake and I didn,t have I called my Fiancee for thru all of this we were planning our wedding, so I called him and family and friends to say I didn,t have IT.  Then yet another call and siad that they were sorry but mix up in lab showed it was indeed me, But the names were different Phyllis(me) and Patricia Wilson do they look alike to you? Well I went on to have a total mastectomy, was given option of Lumpectomy but I figure I,d have better odds of surviving, did reconstruction body rejected it and it hardened, it was removed so u see I too went hru it, But (Praise the Lord) I am now 18 yrs cancer free, God Bless and you are in my prayers and for us ALL.   msphil    (idc, stage 2, 3 nodes involved, L mast,chemo and rads and 5 yrs on Tamoxifen) 

Jeannie- i got a bilateral mastectomy and all nodes out on one side a few weeks ago. I can't honestly say this was a decision that was easy but it made the most sense for me to have a better chance at living a long life.

I had a 9cm tumor which did not show on mammo or ultrasound 3 weeks prior to diagnosis. That scared me enough that it was found only because it grew so big i could finally feel it. I now from this site have learned that ILC hides like this and realized this could easily happen to the other breast and i have to go through everything again and hope i am strong enough to make it through surgery,chemo possibly rads  more than once. I am not so sure i am that strong physically or emotionally. So again the decision made sense to me.

I was not able to have reconstruction right away it does take a bit of getting used to but i am dealing with it. I do hope to get recon in the near future if possible.

I am sure everyone feels differently deep down and the answer may be different for each person. You have heard many stories and opinions in this thread i am sure you will do what is right for you.

You have all of us to help you through this hopefully this helps.

And yes Cancer SUCKS!!!!!!

Hugs to you  xoxoxox -Beth

keep asking questions as you go through these processes.  it's the only way I could cope...that and this site!

Jeannie

sorrry to hear that you are joinng the club... I had ILC-had  a lumpectomy then chemo and radiation--- I feared chemo most and while it was unpleasant, I was able to work and deal with my two young children--- everyone is different and no one knows what their reactions will be.  I don't tolerate drugs well so I had every expectation that it would go badly--and it went much better than I thought.  I had 4 rounds of A/C.

However,that is not where you are right now.  If you can stay focused on one step at at a time, it can be less overwhelming.  I waited about a month from dx to surgery.....

deep breaths--one step at a time.... 

hi i just was diagnosed with infiltrating ductal ca with invasive lobular ca - 1.5 - 2 cm; don't know staging, it is mutlifocal also- had mri and suppose to have biopsies if anything lit up like ca- radiologist thought there was some spots at outer quadrant but dr. said never mind to biopsies because breast needed to come off; it is estrogen sensitve - don't know if her?; have not had pet scan; don't know if in lymph nodes; diagnosed march 1st and met with her march 20th and i have questions re procedure for best results for reconstruction.  i am 47 yrs old and my husband is 7 yrs younger than me and i am worried re what he thinks.  i have decided bil mastectomy - it is not in rt breast at all- but don't want to be looking over shoulder anymore. 

 I asked for 2nd opinion in toronto, canada because think they have more up to date procedures- she was little upset with this...anyone know of anyone good re surgeon.  i was looking into Dr. McCready re Princess Margaret HOspital but he is not in till end of April and i don't know if i should wait that long?  My doctor said i should be ok for 6-8 weeks...i am questioning that and wondering if she shoud be a little more aggressive in finding me help.  i am worried more about getting help then the decision to have both breasts removed.  She was insulted that i wanted to go away but told me she wouldn't do skin sparing mast unless i was having reconstruction right away and wanted to remove just one breast.  She said she would do lymp node biopsy of sa node when does surgery - but shouldn't that be done while i am waiting , and can this be done with incision under armpit??  She said she would do sentinel node biopsy when doing mast and if couldn't get die there then would need axillary node dissection and that caused me ++++ distress because i have bad rt shoulder and can not or will not do dissection with possibility of injuring or weakening lt shoulder...lt causes me much grief- winged scapula and neck discomfort.  i am not prepared for that>....any suggestions....and is 6-8 weeks to get in to see another dr. too late??? i am concerned....i don't know stage, if in lymph nodes, and extent- she was doing this when mastectomy performed - has anyone else had done before mastectomy...she removed lump and surrounding tissue by surgery already because they couldn't get sample by biopsy- should i not have extent and staging by that???i am confused???why do i have to wait for that info after mastectomy??? seems like buggy before horse???