Topic: What's your ILC story?

Nov 13, 2008 10:30AM awb wrote:

Texas357-----my mom had ILC many years ago--lumpectomy, radiation, tamoxifen--and is now a survivor of 22 years without a recurrence--so there's definitely long term hope!!!!!  I have LCIS, had lumpectomy and just finished my 5 years of tamoxifen, and am on high risk surveillance of mammos alternating every 6 months with MRI and frequent breast exams. My mom's story gives me hope, I hope it will be inspiring to you as well.

Anne

Nov 28, 2008 08:23PM frannieann1 wrote:

Hi Bella,  I have just discovered this website and found it great too.  I live in Australia and got diagnosed with Invsive lobular cancer in June this year.  I though I had caught it early too, but it had spread to 6/21 lymoh nodes.  Have just completed my 6 rounds of chemo and am due to have radio in January, but am really scared of side effects, particularly lymphoedema having had so axillary clearance - did you have any problems with that.  I am also thinking of having my right breast removed after all this is over and a bilateral reconstruction, but know I will have to wait a while.  Will also have to have hormone treatment and am not sure whether to go for Arimidex or Tamoxifen.  Any advice you have will be gratefully accepted.

Fran B

Dec 3, 2008 06:20PM MRSROCKYTOP55 wrote:

Hi, I am a recently diagnosed ILC.  Five weeks ago I discovered an indentation and mass in my right breast.  I was visiting the U.S. and as soon as I returned to Costa Rica where we are missionaries, I saw my family physician who sent me for an ultrasound.  That doctor said I needed a biopsy.  We have the government insurance so the wait is quite long for appointments.  We chose to see a private physician and I had a lumpectomy on the left on November 15.  I had two tumors, one was IDC and one was ILC.  I also have another tumor on the right but it is very small.  I am scheduled for a mastectomy on the left and a biopsy on the right December 10th at the government hospital.  This should be quite interesting since my spanish is limited and I can not have any with me.  My husband will drop me off at six am and can't come back until  4:00pm to visit. I am trying not to think about it and keep busy. We are taking a little trip this weekend and I am totally ready for Christmas.  We have a little Costa Rican girl who lives with us and she is really afraid.  We are trying to assure her that things will be fine.  I am so glad to find this site to vent.  Thanks for listening.  Kathy

Dec 4, 2008 11:25AM rayhope wrote:

In December of 2007. I went to gyn for retracted nipple.  He was suspicious of breast cancer and sent me to surgeon for mammogram and ultrasound.  Neither showed anything and radiologist said to repeat in 6 months.  In six months, neither showed anything but radiologist ordered mri.  mri didn't show cancer but was to be repeated in 6 months (Dec 2008).  In the meantime, I noticed a palpable mass mid-October.  At this time, surgeon decided to remove mass; pathology report showed DCIS, high grade, multifocal.  I opted for bilateral mastectomy on Nov. 24, 2008since diagnosis had taken so long.  Breast oncologist surgeon called two nights ago and said pathology report showed a big surprise; instead of DCIS, I have infiltrating lobular carcinoma, 4 cm tumor, lymph nodes negative, estrogen, progesterone and her2 positive.  I'm just recovering from the shock of the changed diagnosis.  I have an appt next week with medical oncologist for further evaluation and treatment plan.  BS thinks I will most likely have chemo. 

Dec 4, 2008 10:39PM Lory wrote:

your mom gives me hope also

Dec 6, 2008 02:29PM bibi wrote:

I live in South Africa and also had a typical sneaky ILC experience!   Had normal(?) mammogram in December 2005, we were planning a holiday in Germany in December 2006 and as I didn't feel like going for a mammogram during the month we were leaving, I thus went for my annual mammogram 2 months before it was due ie after 10 months and with no breast related complaints at all.   They performed the mammogram and followed it up with a sonar as usual.   On the sonar and on the mammogram a 1cm perfectly formed soft encapsuled round fibro adenoma clearly showed, corresponding in only one way to the 7 positive signs for breast cancer.  Against all odds the radiologist however decided to perform a biopsy on this lump but even as the needle passed through the tumour easily and smoothly he felt he had just confirmed the fibro adenoma diagnosis.   He said that a breast cancer felt like an unripe pear during biopsy and not like butter!   We were all stunned when the results came back which indicated Grade 1 IDC.   A lumpectomy was scheduled for 3 days later and the frozen section in theatre confirmed IDC.   When the whole tumour was analyzed it showed Grade2 ILC though!   Suddenly the whole treatment plan changed as my surgeon who accidently is my employer as well! feels that the follow up on ILC in the other breast is hugely compromised by the fact that in 40% of mammograms a false negative is reported on ILC (as we had firsthandly experienced) and also that ILC tends to be multicentric and to recurr on the other side.   Ten days after my lumpectomy a bilateral mastectomy was performed.   My lymphnodes were clean and we immediately realised that the ILC had been missed 10 months earlier as a 1cm lump takes longer than 10 months to develop, with hindsight it was clearly visible on the previous tests, again disguised as a fibro adenoma.   When the final results came I also had a LCIS in the other breast which didn't show up on any test.   I didn't need chemo or radiation and I am on Arimidex now as the tumour was ER+, PR+ and HER neu-.   This was really a narrow escape and after 2 years and 2 months of perfect health I am very grateful!

Dec 10, 2008 04:06AM mattscot wrote:

Lory,

 I was supposed to start Friday TCH -- there was a scheduling issue... (I am trying to work full time through all this...) they scheduled me for Friday at 8 am -- and could not get me in later... they are light staffed because of the conference...so I rescheduled for next week.  sheesh... it reminds me of trying to get the  optimal time for a haircut...

I also admit that I have a huge dread factor... and am not convinced that chemo is necessary in my case-- 

Jan 1, 2009 07:59PM yrawleigh wrote:

Hi...I'm 46 years old. Just had bilateral mastectomy, axillary's taken out. DX...ILC, 6.7 cm so far 2 out of 3 nodes positive, waiting for axillary results. Question....my doc wants to do dose dense chemo a/c 4 rounds every other week than t for 4 rounds every other week. Radiation 5x week for 5 weeks....anyone experience this type of chemo? They call is AC/T dense dose....but I keep hearing about TAC, every three weeks....any comments or advice?

Jan 1, 2009 09:15PM Gitane wrote:

Hi Yvonne,  

Welcome to this site and our ILC thread.  I hope you are doing well post-surgery.  My doctors recommended the same treatment your doctors are recommending only it was before the surgery.  They decided against the radiation, though it was a close call.  I ended up not having the T and had two more round of AC after my surgery. I had a good response to therapy.

I think the TAC is a bit harder on your system,  I'm not sure if AC then T in sequence is better but seems to me I read in several places that it is more effective.  Hopefully others who know more about this will chime in.  

I hope to hear more from you.  This is a rough road, but it helps to share. HUGS. 

Jan 20, 2009 06:03PM MaryEV wrote:

I had a mammogram as part of my annual checkup in September 2007. I awaited the results nonchalantly as I usually do. When the report came in and had no findings I filed it away in my medical file. 2008 rolled around and as the year prgressed I realized I was experiencing full-blown menopausal symptoms. The last period I had was in June and around that same time I noticed a thickening area in the top left quadrant of my left breast. I looked on the interenet to see if breast changes was a menopausal symptom and found that it was. Recommendations were basically to monitor and see if the breast changed further.  By the fall, it was time to schedule my annual checkup. The thickening in my breast had not really changed that I could tell, but it was still there. I scheduled an appointment with my GP for September, but she was out sick on the day of my appointment so it was rescheduled for early October. At my October appointment, my physician examined me, including my breasts, and was not overly concerened. She normally schedules my mammogram during my annual checkup but our local hospital has downsized and no longer has a radiology department. Instead, the nurse contacted a branch of the hospital 20 miles away to make an appointment for me. They had closed for the day but she promised she would make one the next day.

A week or more passed and I had not heard from my physican so I contacted them. The nurse had dropped the ball and not made my appointment. She said she would right then and called me back shortly with an appointment in early November. I had my first mammogram on November 11, 2008.

I turned 50 and my darling husband took me to Las Vegas for a long weekend to party and celebrate. Upon my return was a letter from the hospital containing my mammogram results. There were suspicious areas on both breasts and another mammogram and ultrasound was recommended. I called the hospital the next day and scheduled a followup mammogram for November 26.

The news came in early December that I needed a surgical consultation for two lesions located in my left breast, exactly where the thickening was. I visisted with my GP again and she made an appointment with a breast surgeon for December 17th. At that visit, he referred me to the imaging center there for more mammos and ultrasounds. I had a core needle biopsy of two lesions in my left breast, one 5 mm and one 1.6 cm. They determined the right breast just had a cyst.

I had to call to get my results which were delayed my the holidays. After leaving three messages on December 30th, I finally got a call back from the nurse at the imaging center. Both lesions in the left breast had come back positive for cancer.

The surgeon's nurse called me the next day. She told me that my options would be a lumptectomy with radiation or a mastectomy. I already had a follow up visit with them scheduled for January 12th, which was good since I was heading to Orlando for a vacation on January 3rd. She said to go on the vacation, not worry about anything, and they would see me on the 12th.

Hubby and I saw the surgeon on the 12th. At that time he informed me that I had the less common type of breast cancer called Invasive Lobular Carcenoma. That type of cancer was harder to detect on mammograms and ultrasounds. Since there were two areas of cancer, and since it is hard to detect if there is more, a mastectomy was recommended. I had already decided on a bilateral mastectomy. I thought about immediate reconstruction for about a week. After researching the different options and weighing the pros and cons I decided to forego reconstruction. My bilateral mastectomy is scheduled for January 28th.

Mary

Feb 2, 2009 07:43PM - edited Feb 2, 2009 07:55PM by LauraLC

Well, after long consideration I decided to have breast reduction surgery at age 50! Little did I know that I had probably made a choice that would save my life!  The surgery was 11/13/08.  Mammagram 3 weeks earlier was ok.  Then pathology reports came in stating that I have LCIS, ALH in both breasts tissue.  In the right, 3 foci of ILC .3 cm, .2.cm, .1cm were found, ER/PR+, her2-, margins unknown.  This is only the 3rd time in 30 years that something like this has happened to my plastic surgeon.

My local, well-respected onc recommended bi-lat. mast. b/c of the risks, the local rad. onc. thought radiation would do the trick depending on amount of scar tissue.  Maybe tamoxifen.

I went to Fayetteville AR to see Dr. Steven Harms (renown breast cancer radiologist) for a breast MRI---a wonderful man who helped develop the Aurora breast MRI.  He found no other ILC and very minimal scar tissue, and thought that radiation and tamoxifen could be an option b/c I could be monitered by MRI. 

I had a SNB on 1/20/09 and it was negative! 

I went to the Kirklin Clinic at UAB for a second opinion Jan. 29.  The team there (De Los Santos, Krontiras, Forero) recommended that I have the bi-lateral mast. b/c of the unknown margins of the foci ---- even with radiation. They are not going to recommend tamoxifen unless more ILC is found. 

I am going back to the Kirklin Clinic 2/3/09 for a consult with Dr. Jobe Fix about DIEP reconstruction.  Sometimes I feel that this is happening to someone else!  I have really learned a lot from this board.....thanks to all.

Feb 21, 2009 06:42PM - edited Feb 21, 2009 07:46PM by my560sel

I had a mammogram on Oct 28/08 and they told me that if I didn't hear anything by 2 weeks, then everything was clear. Dec 1 I got a phone call from the Dr at the clinic telling me that I need to go in and get a compression and ultra sound done because he thinks there is something there. I had both done a few days later and again he was suspiscious of what he saw on the ultra sound. He sent me back to my GP who referred me to an oncologist. The oncologist couldn't feel anything in my breast and ordered a biopsy to be done. It being so close to Xmas, everything was backlogged and I finally had both an ultrasound guided biopsy and core needle biopsy done on Jan 5/09. It took the Resident who did the biopsies (it's a teaching hospital) 16-17 tries to get 3 or 4 good samples. I got out of there feeling like a pin cushion. A week later which was two days after my  50th birthday the biopsy result came back ILC and LCIS 1.7cm x .2 x .2 ER+. PR+ HER2-, Grade 1-2. The oncologist (surgeon) said that the tumor was very treatable and I have a scheduled surgery date for a lumpectomy and sentinel node biopsy this Tuesday Feb 24/09. He said I would most likely need radiation afterwards.  I am so confused at this point and not sure what I should do. I have to admit that my doctor and I didn't have much of a discussion and from reading posts from other women, I'm wondering if I'm being aggressive enough in my treatment of this cancer. I'm worried about it reoccurring in my other breast or elsewhere in my body. Is it normal to go through a lumpectomy and then make a decision to have a mastectomy or bi-lateral mastecomy once I know the results of the lumpectomy? I'm reading  that most women don't even go through the lumpectomy and just opt for mastectomy from the start. My doctor never even mentioned this as an option. Am I jumping the gun by maybe thinking mastectomy before I even have the results from the lumpectomy and SNB? I'm also worried as I've read that radiation makes it harder to have reconstructive surgery. Does that mean in effect that I have to make the decision for mastectomy soon after the results of the biopsy are in? I'm feeling pushed for time and all these things going round in my head and a bit of an overload of information at the moment. How will I ever sort all of this out!

Terri

Feb 22, 2009 07:58PM KathyAlex1960 wrote:

Our stories are so similar!!  I had 4 intraductal papillomas removed from my left breast 4 years ago.  I always had scar tissue in that area and it was a little hard.  In November it felt "different".  My husband didn't feel a difference.  I had mammograms/us every 6 months for the past 3 years.  Last mammo was in February 2008, and I was cleared until this February.  Called in December and made an appointment.  The radiologist said his gut feeling was that it was cancer, and scheduled me for MRI and biopsy.  The MRI was NEGATIVE!!!!!  Biopsy showed mixed lobular/ductal.

Surgery December 29th - 3.5 cm lobular. Mastectomy. Initial lymph node biopsy was negative, but then turned out to have 1 positive for micrometasis.  Had nodes removed 1-16-09  and 2 were positive.  Starting chemo on Thursday the 26th.  A/C x 4 for 2 months, avastin clinical study, and then taxol x 1 for 12 weeks.

 Seriously considering removing the other breast - still waiting for genetic test results.  Even if they are negative, I might still remove the other one so I don't have to worry about this damn thing sneaking up again!!

Apr 5, 2009 07:49AM Lynn12 wrote:

Laura,

Thanks for posting, glad to hear you are recovering well.  Keep up the walking, it will help.  Fabulous news from the path report!

take care,

Lynn

Apr 21, 2009 08:57PM Lunalin wrote:

I had gone 5 yrs without a mammo. I was currently in intensive therapy for Rheumatoid Arthritis and couldn't care about anything but my pain. I guess I noticed a puckering in the skin around my nipple but didn't mention it for months.

I finally felt around, under my nipple, found a big lump. Who thinks to feel under the nipple? I had a 5cm infiltrating tumor. I chose mastectomy and chemo. The chemo greatly helped my RA and it was a blessing.