Just diagnosed with ILC

Thank you both for welcoming me so quickly.  I am just devastated.  My life was/is so stressful trying to get along widowed.  I was a homemaker all my life and worked at home or some part time fun jobs.  Now I live alone and work 10 hrs a day in a job that quite honestly petrifies me because it is so demanding.  A "normal" woman would be thrilled to reinvent herself if her 50's but I have had the most horrendous time with my late husband's cancer that it has left me a bundle of nerves and afraid of everything.  And now this.  I have fibrocystic disease and have had mams and ultrasounds all of my adult life.  Just before I relocated 2 yrs ago to take this job my gyn told me a mam showed changes in my left breast and that I needed to see a specialist as soon as I got to my new town, which I did.  It was a calcification of cells which was biopsied and benign.  The doctor told me she would keep a close eye on me and I had mams and ultrasounds every 3 months for the next yr and ahalf until 6 months ago when they thought I could go a longer period of time between.  Being a bundle of nerves and fright I was not taking proper care of myself and think I may have done my last self exam about 2 months ago, maybe more.  With all the cysts I don't think I felt anything unusual.  2 weeks ago in the shower I was shocked that I had such a large lump in the breast that had the calcification.  Hoping it was scar tissue and having less than 2 weeks until my yearly mam and ultrasound I let it go.  The mam was normal but the ultrasound was not.  The practitioner called the doctor in who did the ultra again and was quite alarmed and graphic.  She showed me the irregular shape, the large blood flow and told me it was at least 3.5 centimeters.  She examined my underarm and said something in a medical term I cannot remember about 3 nodes which she also told the pract and her little recorder.  She said this rapid growth was typical of lobular cancer and that there was a 60-80% chance that it was cancer, however, she felt that in my case with my history that it was and went on to assure me that things have changed since my mom died of cancer, that I would have access to all the recent clinical trial drugs and took my hand and made me repeat with her over and over that "most people do not die of their cancers".  So I am assuming that it is invasive lobular simply because she feels it is in my lymph and told me she thinks its lobular, and cancer. 

Thank you for reading all olf this.  Please give me your feedback.  I would appreciate it so much.

Sharon

ReRun - It's stories like yours that get me frustrated because I can't reach out through the forum and give you a big (real) hug. 

Like Gitane, I'm shocked that the doc is saying cancer without the path report.  Her intentions may be good thinking it will prepare you for results after the biopsy but until that is done then you really don't know.  Like she said, there's a 20-40% chance of it not being cancer.  Until I checked out The Breast Book from the library I had no idea that there were so many other things that could be in the breast besides cysts and cancer.

But please don't be hard on yourself.  It was my mother's IDC dx that caused me to delay my screening.  But it really didn't make any difference because there was a rapid change so when I saw the surgeon for the biopsy consult she found the lump under my arm that wasn't there the last time I checked.  And believe me, with my Mom going through her lumpectomy a few weeks before, I checked.  I had redness that literally happened overnight and the thickening was quick to happen also.  The cysts and lumpy breast that I had for so many years made it so hard to know anything was wrong.  Nobody caught anything.  I was feeling very guilt and she assured us that we did everything right. That helped me so much.

I am so sorry that you lost your husband.  And I understand the fear about your Mom -- I lost my sister and she had the same dx as me.  Please hold strong!  Get through the MRI and the biopsy.  IF it's cancer then all this information will be so important.  But my hopes and prayers for you are that it is not.

Formykids....not bpm....one side was prophy (turned out to be pre-cancerous), but other side was ILC, stage 3 with node involvement.  I would probably do the same recon again....things have been status quo with the recon since the last redo July 2008.    I probably could have left things the way they were, but I felt that after all I had been through, I wanted to like the way I looked.  I was very self-conscious with the "bigger" implants.  My first ones were 300cc high profile....I felt like the first thing people noticed when they saw me was my chest.  My implants are now 200cc mid profile and I am much happier.  The best compliment I had was after this last re-do, one of my bff said to me that I looked more like the "old me".  My goal for 2009 was no surgeries and with only 10 days left in the year, I have made it.  I had bilat and ooph in 2006; CTS, exchange and then re-do in 2007 and in 2008 re-do again and two wrist surgeries!!! 

Re-run...I agree with the other ladies...I was told that ILC was slow growing....and without biopsy how can the doctor say it is cancer....hoping he is wrong....my sympathies on all you have been through with your mom and your husband. 

Yo....the 7 months post rads was to give the skin and body time to heal.  It really wasn't so bad (maybe I can say this in retrospect as I hated the expanders and so often was ready to just yank them out) as my poor old body needed time to heal from all it had been through...bilat, chemo, rads, ooph....Exchange was just over a year after bilat.  Good luck to you.

Diane,

My heart goes out to you for the loss of your husband. You are dealing with so much right now.  Getting this diagnosis must be very is a very hard blow at any time.  That you have your sister and kids is good to hear. 

The anchors in my life are my husband, my 80 year old mother (dx with IDC in May but done with her lumpectomy and rads), my son (32) and my daughter (29).  I thought our family was close after losing my sister to breast cancer 3 years ago but the love and support that they have given me in the past few months has been beyond words. 

I echo what Gitane says.  We can get through BC.  It's a long road but so many women have been down it and are doing so well.  This site has been very helpful for me just to know that I'm not alone in my feelings and fears.  And many women have been here for 5+ years with no evidence of cancer -- they stay around to provide encouragement and hope.

You can do this.  My thoughts are with you.

Deezin- you have had a tough go of it.... but you are right-your cancer is not your h's cancer--this is so important to remember--- you have lots to be optimistic about.

Hair--it is sooooo all about the hair.  I personally found this to be the hardest part in the whole process.  Once I decided on chemo, I called a salon in my area that specializes in wigs- I went for 2 fittings--they were human hair wigs.  At the 3rd fitting, after my first chemo, she buzz cut my hair.  I had shoulder length hair that was thick and I loved it.... I cried through the first 2 visits, but when she cut my hair, I figured that I was pretty much out of tears.... I ended up with 2 identical wigs that looked exactly like my hair... because I did not tell many of my colleagues about what was going on, I needed the wigs to be as close to perfect  as possible, and they were.  It just looked like I was paying some extra attention to my hair.

 When I was going through this, I always wanted to know "how long" will I have to wear the wig...so I will give you the timeline, which may or may not be the same for you but will give you some idea.  I had my head shaved on January 22cond and started wearing the wig... I wore it all the time, except for to bed (buy cotton hats, your head will get unbelievably cold).  My own young children could not tell that it was not my hair.  

I had 2 wigs that I alternated--- I would wash one and take it to the salon every other week and have it styled--- so I was never without a fully styled wig.  I wore it through chemo and radiation--- on June 25th I had my own hair, which had started to grow back in April but was very short, colored and shaped and on July 4th I stopped wearing the wigs.... for the summer my hair was an interesting blonde (I am  brunette) but I did not care-I was SO happy to be able to put my sunglasses on top of my head, to feel the wind, sun, rain on my head-these are things that I totally enjoy even now....

My oncologist told me at the beginning "don't spend alot of money on a wig, you won't be wearing it for long", but I wore it for 7 months, which felt long to me.  Human hair worked for me, but it is more expensive and requires some maintenance.  Insurance covered about half of the cost of the first one, but none of the second one.  Lots of people use the synthetic ones and swear by them-- you have do what works for you.

They tell you that your hair will start go grow back 4 weeks after your last chemo. On the last chemo day, I had h shave my entire head (there was still some hair there) I had 4 rounds and it ended on 2/27-well you can bet I was in front of the mirror on 3/27 looking for hair--nothing!  But 2 weeks later it started to come back.

 Today, I have a full thick head of beautiful curls, which I suspect will eventually morph back into my straight hair--but I have really enjoyed them.... My hair is as healthy and thick now as it was before.... 

Sorry this is so long, but I remember so well how much I wanted someone to tell me exactly how long this would take.....  I hope it is of some help to you.  

Cathy,  For the next two days I will keep you in my thoughts.  I am sorry you are so afraid and sad.  This is so monumental, and it is normal to have these strong feelings.  Know that many of us have been exactly where you are now and have come through just fine.  Warm hugs.  G. 

Cathy, I'll be thinking of you. I hope everything goes well and that you make a quick recovery. You may have the SNB results very quickly .... hoping it's negative. In my case, the ILC was much smaller than indicated on the MRI. You have an excellent surgeon so I know you are in good hands. Best wishes. Please keep us posted. Helen