Just diagnosed with ILC (age 48)

tailspin

Help!  I am scheduled to under a double mastectomy this Friday, 11/21/08 and I am feeling extremely under-educated.  On 10/27/08 I went to my GYN because the inside of my left breast was flattening.  I was only able to see a nurse, but she agreed something was wrong and found an imaging center that could do a mammogram & sonogram that same day.   Before even getting home, the GYN office was calling to say I need to get to a surgeon and provided a couple of recommendations.  My 1^st appt. with the surgeon was on the 29^th.   She pre-diagnosed ILC and sent me for another sonogram, a biopsy and finally an MRI on 11/07/08, which all confirmed her suspicions.  The ILC is 4.3 cm @ 11:00 & I'm a full B or small C cup size.  I've seen the surgeon once since my initial appt. and at that time she only had preliminary biopsy reports.  She said the tumor was a grade 2, but that a stage couldn't be determined until after surgery.  Unfortunately, not being well endowed, she doesn't believe that breast conserving surgery is a viable option for me.  So she has recommended a single mastectomy, chemo (radiation if needed) and then reconstructive surgery.  At the time of reconstructive surgery, consider removing the remaining breast.  I haven't spoken with an oncologist, radiologist or a plastic surgeon at this point, nor do I even know the full results of the pathology report.  My brain is whirling with unanswered issues, yet I'm scheduled for surgery.  Should I get a 2^nd opinion?  Should I speak with these other specialist before surgery?  How much can chemo reasonable shrink the tumor if I wanted to try a lumpectomy 1^st?  I'm just really struggling and I don't know how you ladies determined which course of action to follow.

Texas357

Does the surgeon you spoke with specialize in breast surgery? If not, ask around. I went to the nurses who head the various BC support groups in our area and learned that my breast surgeon was one of the best in our area. You absolutely need that level of comfort with your surgeon's guidance and expertise!

I also consulted a plastic surgeon way before my surgery date. Again, get recommendations from people who work with BC patients regularly. I didn't speak with an oncologist until after the pathology report came back from the surgery.

I'm a C-cup but thin and not exactly well endowed. My surgeon was able to do skin-sparing surgery, followed immediately by an expander implanted by my plastic surgeon. I'll have chemo and presumably radiation, then finish with the reconstruction.

  

wishiwere

It would be very smart to get a second opinion and most importantly, talk with a PS BEFORE your surgery.  I was naive and unfortunately didn't do that and was told I needed the surgery now and they didn't have a surgeon available to work with the bs at that time.  SO, I went with the mast without question and now in hindsight wish I had taken the time to check out the options.  Like this site, which I didn't find till the 1st day of my chemo.

Get the second opinion and talk about your options for recon IF you go that way with a PS and with an onco about the chance to do a lump if you get chemo first.  Although, I think they say ILC doesn't respond as well to chemo...I might be wrong, but...maybe that ER/PR+?

spar2

I think it is better to wait until after chemo and your body is strong again before doing recontruction.  I would get a second opinion also.  I had invasive lobular had cytoxin and andrimyacin and I do respond well to chemo, it kicked butt.  I am now nearly 5 years cancer free.  Just had a pet imaging last month and still clean.  I did have reconstruction but not until my body was clear of the chemo, too much chance of infection.  Hope all goes well with you.  More things to think about.

Gitane

I got a second opinion and was helped by that when I decided what to do. I met with my surgeon, 2 oncologists, and ps before treatment or surgery. This worked for me.  I did things in this order:

1.  core needle biopsy, sentinel node biopsy surgery, and MRI, so I knew my stage and pathology as much as possible before the chemo

2.  chemo, AC,  then another MRI, so I knew if I responded to the chemo

3.  mastectomies with implant expanders put in at the same time

4.  endocrine therapy, Femara, ongoing

5.  later surgery to put in the saline implants

6.  surgery to do a skin graft to form nipples on reconstructed breasts 

jobu

Make sure you are seeing a breast oncology surgeon. They will do the best job.                            Be sure and meet an oncologist before you move ahead! I did chemo first (TC) and kept the tumor in. We thought my tumor was 1.7cm but in surgery found it was multiple small tumors over a 5cm area. My surgeon was fabulous...took it all out with clear margins and I have a small scar with no indent. And I am a B cup at the largest. I am doing another 4 rounds of Adriamycin to play it safe before I move ahead to radiation.

 - Keep the tumor in while on chemo tells you how effective the chemo is.

- Until you have surgery, you can't be sure about size etc. ILC is sneaky and doesn't always show everything on the scans.

- Bottom line, talk to your whole team before you move to surgery.

 Good luck to you. Jobu

Little-G

I agree with the other ladies..get the second opinion.  And don't rush into anything.  You do have some time to decide on which way you want to move forward.  Make sure you are comfortable with the choices you make.  I wish you best of luck thru this.

g

karen1956

Tailspin - are you still schedule for surgery on the 21st.

I don't think I decided on the course of Tx - onc did most of that as  did surgeons. After Dx saw surgeon and onc (not sure where PS fit in this order).  This was after mammo, ultrasound, biopsy Dx), MRI and more biopsy.

1. bilat (at recommendation of both surgeons I interviewed, but it was something I was thinking of after Dx).  I was not a candidate for lumpectomy as too much cancer in breast.

2. TAC chemo

3. Rads

4. AI's

5.  oopherectomy

6. exchange from expanders to implants (silicone) - have had 2 revisions since.

I hope that you have been able to get your questions answered and feel good about your course of Tx.

tailspin

I want to thank everyone for responding.  This has all moved so rapidly.  But yes, I am still scheduled for a double mastectomy on Friday, Nov. 21st.  Less than 48 hours to go and counting.  I did meet with the surgeon again on Monday to discuss everything that I had been reading on the web, and what others were saying on this blog regarding their treatments.  My surgeon is with a breast surgery office that resides within a hospital.  She seems very compassionate and more importantly competent.  I work for an investment management firm and one of the firm partners happens to sit on the Board of Directors for this hospital.  He solicited a number of recommendations before providing me with her name.  Basically, although she understands my groping for alternatives, she is firmly convinced there really isn't any alternate course of action for my situation.  The MRI lit up my left breast from 12:00 - 7:00, although without another biopsy she can not be sure the entire section is cancerous.  But the mass is larger than expected and two lymph nodes are now suspicious.  It's funny...I never thought much about my breasts historically, but now all of the sudden I've become very attached to them.  Small, but I always thought at least they were symmetrical and kind of perky.  As it turns out, they are dense, fibrous and hide things very well on mammography.  That's what really ticks me off.  I keep hearing and reading that ILC is notorious for not showing up on mammography until it is pretty large.  So, I thought I was doing the right things, with all of the precautionary checks, got clean reports and then BAM.  So I've been telling everyone that will listen, to not just feel for a lump (which is the only symptom I thought I was looking for) but to look for visible signs of change... flattening, any minor dimpling, or in my case what started with a nipple that began to sink on one side.  The bi-lateral mastectomy was my option.  Although not diagnosed as cancerous (yet), the right breast is deemed highly suspicious.  Because of my family history, age, etc. she has guesstimated a 40% chance of cancer in my right breast during my lifetime.  Those are not exactly great odds.  So, I will have the surgery on Friday, cry a lot at some point, and periodically feel sorry for myself and then move.         

Lory75234

You educate yourself, get opinions from professionals, make a decision and Don't Look back.

Gitane

Everybody here has said it better than I could.  We can't help but feel angry when we know better methods existed for detecting this and we didn't know about them.  Now it's time to move on, Tailspin.  You've got great support in your corner.  Please come back here after surgery.  We will be thinking of you tomorrow.  HUGS.

Jasminn

Tailspin - my thoughts and prayers are with you right now as you undergo this surgery.  Please let us know how you are doing.  I'm 43 and was just diagnosed a week ago and am having a bilat (left side prophylactic) the week after Thanksgiving, I'm scared to death!  Counting on you for some good and encouraging news!  :-)

mattscot

Tailspin-

I am thinking of you .. it was just early September when I got the suspicious mamo ...I had a left masectomy  (thought of doing the bilateral but chickened out) although the invasive tumour was thought to be 1.7 cm at the time it was the 5 cm of lesion composed of LCIS (turns out pleomorphic variety) I had two opinions that breast conservation was not an option --  I tested for BRCA prior to the surgery but did not wait for the results...have since found out that I am BRCA 2 so I will end up having the second one done when I have the expander and implant switched.  

Hang in there

VBK1944

Hi, I hope your surgery went well. Like you I am just diagnosed with ILB >2cm and have opted for bilateral mastectomies and immediate reconstruction with tissue expanders followed by silicone implants. (I am small breasted). I want to maximize my survival rate and minimize recurrance AND look good afterwards-I can choose my breast size!. I am 64.5 yrs old, no family history, normal weight and only risk factor is hormone replacement x 8-10 yrs. I anticipate chemo and would like to know how others had it given, e.g IV once a week followed by 2-3 weeks off. Also, how others managed to work during chemo. My surgery is on 1/26 with a meeting with the oncologist about 7-10 days later when the pathology report is available. Also, did anyone travel during the chemo treatment and how they managed/or not?......Thanks

susan13

Hi VBK,

I sent you a private message.

Sue