Lack Of Updated Clinical Trials and Info

Thank you for starting this post, KJR1964, and for your reply, Robyn_S, which gives me hope. I was just diagnosed with ILC in April and had a lumpectomy a week ago. 15 nodes removed, 5 positive. The tumor was 8.5 cm. long. When the surgeon told me the size yesterday on the phone, my heart stopped. Pre-surgery, the tumor was predicted to be under 2.5 cm. Since I'm going to have to do chemo, I'm now trying to learn all I can.

Age, Year of Diagnosis: 44, 2014

Nationality: U.S. citizen

Current Age: 44

Children/Ages: one daughter, 9, breastfed 2 years

Drinker/Smoker/Caffiene Status: Yes (probably too much but much less now), No, and Yes (1-2 cups of tea and 1-2 cups of coffee/day)

Birth control: no birth control pills ever

Diagnosis, Grade, Stage (if known): ILC 8.5 cm, grade 2, will probably find out stage today 

Surgery: Right breast lumpectomy, 15 nodes removed, 5 positive

PR/ER and HER2 Status: ER/PR + and HER2-

Treatment: Waiting

Metastasis: .........

Reoccurrance (with dates): None to date

This is for my wonderful wife:

Age, Year of Diagnosis: 45, April 2014

Nationality: U.S. citizen

Current Age: 45

Children/Ages: None

Drinker/Smoker/Caffiene Status: Yes (socially, 4-5 glasses of wine/week), No (although medical marijuana), and Yes (1-2 cups/day)

Birth control: All my life. Mirena IUD for last 10 years

Diagnosis, Grade, Stage (if known): ILC 2.2 cm (with smaller satellites around), Grade 2, Stage 2, Sentinel Nodes are Negative (0/2).

Surgery: BMX (bilateral non nipple sparing Mastectomy, with bilateral sentinel node biopsy)

PR/ER & HER2 Status: ER+ (95%) / PR+ (95%) & HER2-; Ki67 5-10%

Treatment: Waiting for Oncotype results (expected to be low), but recommended Ovarian Suppression, and AIs for 5 years.

Metastasis: No

Reoccurrance (with dates): No

Other Medical History (only if you want to share):

1. Dx of Lymphoblastic Lymphoma in 1984 when ~15 years old, Treated with lots of chemo and radiation. 

2. Possibility of Sleep Apnea (need to be tested though).

Birth Control: Yes. Since teenage years, First 20 years on pills, Last 10 years used Mirena IUD.

Comments:

@KJR1964: Interesting pathology report. Tumor 1: HER2 positive  &  Tumor 2: HER negative

Is that common to have positive and negative HER status? So, this is "Multi-Focal"? Are they sure the two lesions are not connected by a single lines of ILC cells?  Did you get a 2nd opinion on the pathology?

Age, Year of Diagnosis: 49, 2013

Nationality:  US

Current Age: 49

Children/Ages: 1. 30 years old. Did not breastfeed.

Drinker/Smoker/Caffiene Status: Rarely/Yes (now on e-cig since surgery)/LOTS of caffeine; coffee and Diet Coke

Diagnosis, Grade, Stage (if known): ILC 5.5 cm (after a biopsy that took 8 chunks out of it) Grade 2, Stage IIIc

Surgery: BMX and all nodes removed on left (cancer) side. 11 of 22 nodes positive, 1 (or 2?) with extracapular extension.

PR/ER and HER2 Status: ER+ PR+ Her2- .  PR 100%. ER 70% (or somewhere thereabout--can't remember)

Treatment: DD AC x 4, TC x 4 (Sort of. One treatment was just a higher dose of taxotere with no cytoxan. In any case, I got a LOT of cytoxan!)

Metastasis: Not so far as I know.

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share): Delayed Sleep Phase Syndrome. Possible "DES Daughter."  Did use birth control for approximately eight or so years in the 1980s, then had tubal ligation.

Hi, KJR1964, thank for starting this thread. I think we all have a lot in common and it would be interesting to see. Good luck with this and with all of your appts. I am almost 4 years out and feeling well, thank God. Have a good feeling about you, nice that you're trying to stay so informed, though try not to dwell on your path reports, they can bring you down Tough balancing act between being informed and not getting overwhelmed. Try to find doctors your trust and rely on them as much as you can while still being your own advocate. Once you have a treatment plan it all gets easier. Wishing you the best..

Age, Year of Diagnosis: 49, 2010

Nationality: Israeli

Current Age: 53

Children/Ages: 26, 24, 20 and 16 all Breast Fed (if that makes a difference)

Drinker/Smoker/Caffiene Status: No, no and 1 cup a day of coffee try to add green tea in there too.

Diagnosis, Grade, Stage (if known): ILC 2 cm, ILC 1 cm, Left Breast, opposite sides of same breast.

Surgery: Left Mastectomy, SNB (CLEAR) 29/7/2010 until pathology report found trace of ILC which apparently is a bit of a common occurrence with ILC.. 3 nodes removed. No reconstruction yet. Maybe never. Nice to have options about something...

PR/ER and HER2 Status: Tumor 1 - ER/PR + HER2- Tumor 2 ER/PR+ HER-

Treatment: uni mx, tamoxifen for 2.5 years, oopherectomy, now Femara. Also Zometa IV every 6 months for first 3 years.

Metastasis: None

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share): Hysterectomy in 2008 for large fibroids (non-cancerous.) Mom took DES while pregnant with me. Strongly recommend Dr. Servain Schreiber's book, 'Anti-cancer.' I've changed the way I eat and my environment a great deal based on this book. Easy and sane.

Thanks!

Age, Year of Diagnosis: 47, 2011

Nationality: Danish

Current Age: 50

Children/Ages: Daughter, 21.

Drinker/Smoker/Caffiene Status: Wine, probably more than recommended, but not heavy drinking. Smoking on and off for several years, but never heavily. Moderate caffeine intake.

Diagnosis, Grade, Stage (if known): ILC 5+cm, 7 of 23 nodes.

Surgery: BMX, node clearance on right (cancer side).

PR/ER and HER2 Status: ER+/PR+, HER-

Treatment: FEC-D, 4 of each, 35gy rads, ooph, femara.

Metastasis: Not yet.

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share): None really. 

I live in Canada and was on vacation in Florida in April when I discovered a breast thickening/spongy area (a lump could be felt under this area).  Same day went to the Dr who said he thought it could wait until I returned to Canada 3 weeks later.  I requested Mammogram and Ultrasound which was done same day.  Results were BiRad 5.  Back to Canada next day.  Saw my Dr same day and had U/S guided core biopsy done to the lump and one axilla node the following day.  Dx ILC, node postive, ER+, PR+. HER-2- . The Florida U/S measurements: 1.6 x 2.6 x 2.8 cm.  The Canadain U/S 2 days later: 1.3 x 2.8 x 3.6 cm.   The abd/chest CT showed the mass as 2 cm.  Makes me think ILC is very difficult to measure.  Scans were all clear.

Saw the surgeon.  His recommendation was chemo first, then surgery and then radiation. He is hoping that the chemo will kill the cancer in the nodes (hopefully preventing lymphadema by avoiding node disection) and reduce the tumour size. Saw the oncologist and one week ago started on FEC - T (8 rounds)

I have been reading ++++ and am not convinced that chemo first is the way to go.  I plan on having bilateral mastectomies so the plan of trying to shrink the tumor first so breast sparing surgery could be done is a non issue. I read where ILC does not respond well to chemo but there is a benefit when it comes to node involment.  My fear is that while I am on chemo that may not work, my tumor will continues to grow.  Is it better to have the bilateral mastectomies first with node dissection with the possibilty of lymphadema than to wait and hope that my tumour does not progress beyond stage 2?

I do monthly SBE and had my yearly check up 2 months prior to discovering this mass.  At that time my Dr did a breast examine and felt nothing.  My previous mamogram was clear - nothing suspicious. I am an RN and at first I beat myself up about how could I have possibly missed feeling this mass but I realizethat ILC is very sneaky. 

I have only met with my surgeon once when I receivd the news that cancer was in my node.  I think hearing that was worse than the dx of breast cancer.  I am going to go back to my surgeon. This time with a clearer head to discuss my concerns ie chemo first, then surgery.

I have met my oncologist only once and again I think I was overwhelmed and asked just the basic questions.  I will meet with him again in two weeks to discuss my concerns re chemo and the effects or lack of specifically on ILC.

I have gained so much information and support from this site!

Hi Mary625,

Thank you for your encouraging words.

I notice that you are on Femara.  Were you on Tamoxifin first and then switched?

I have been told that I will be on Tamoxifin for 5 years and then posiibly Femara for another 5 if my bone density is OK.

Age, Year of Diagnosis: 53, 2013

Nationality: American

Current Age: 54, date of birth 08-15-1959

Children/Ages: one son, born 1990.  I was 31 yrs. old

Drinker/Smoker/Caffeine Status: non drinker, non smoker, non coffee or tea drinker

Diagnosis, Grade, Stage (if known): ILC 11cm, Grade 2, Stage IIIC (I believe but I have not seen it documented)

Surgery: bi-lateral mastectomy, right side was completely clear of cancer.  ALND on left side

PR/ER and HER2 Status:  ER/PR+ HER-

Treatment:  neo adjuvant chemo of AC and Taxol, surgery and 38 radiation treatments. Currently on  Arimidex, probably for life.

Metastasis: no

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share):  Yearly mammogram came back "unchanged from last year." but I have always had very dense breasts.  Three months later, I felt a huge lump and that was when I was diagnosed with ILC.

Suspicious Thyroid nodule was identified on the breast cancer MRI or CT scan. Doctors recommended addressing it after all breast cancer treatments were done.  Biopsy 3 days after last radiation treatment came back positive for papillary thyroid cancer.  Geesh!  My thyroid will be removed this week. 

Age, Year of Diagnosis:  49, 2009

Nationality:  US

Current Age: 54

Children/Ages: Sons, 18 and almost 24, Daughter, 21

Drinker/Smoker/Caffiene Status:
Wine. Non smoker. Never more than 2 cups of coffee a day.

Diagnosis, Grade, Stage (if known):  ILC 4 cm, Grade 2, Stage 2b

Surgery: Left mastectomy, 0/1 node, LVI present

PR/ER and HER2 Status: ER+/PR+, HER-

Treatment: TC x 4, Radiation, Tamoxifen.

Metastasis: No

Reoccurrance (with dates): No

Other Medical History (only if you want to share): I had a hysterectomy at 38 due to large fibroids.  I did not have my ovaries removed at the time, and sometimes wonder if it would have prevented bc, if I had.

I met with an MO yesterday and she will recommend this course of chemo:

Cytoxan and Doxil (biweekly for 4 cycles)

Taxol (weekly for 12 weeks)

On this thread, I notice that others have slightly different protocols. I'm trying to get a second opinion at Dana Farber, but has anyone been offered this combo or know why some of us with ILC are offered different combos?

Age, Year of Diagnosis: 43, 2013

Nationality: US

Current Age: 44

Children/Ages: 12 and 10, both breastfed

Drinker/Smoker/Caffiene Status: minimal drinking/smoked on and off since 13/excessive coffee

Diagnosis, Grade, Stage (if known): ILC 8cm (before chemo), Grade 2

Surgery: scheduled for left UMX w/immediate DIEP on June 6

PR/ER and HER2 Status: ER/PR+, HER2-

Treatment: AC/Taxol weekly for 12 weeks, radiation following surgery

Metastasis: no

Reoccurrance (with dates): no

Other Medical History (only if you want to share): calcifications found on mammo in 2010, unchanged till 2013

It seems everyone is hormone receptor positive, right?
In your pathology, what is your exact ER+/PR+ percentage and your KI-67 score?

I saw some of you scored 100% on ER/PR, which is really good, since the theory is that the more hormone sensitive the cancer is, the more benefit you theoretically get from the Hormone drug therapy.

((((Torridon))))

Age, Year of Diagnosis: 58 in 2009, now 63.

Nationality: English born to English parents.

Current Age: 63

Children/Ages: 26, 22, A third baby was stillborn, would be 21. Breast Fed

Drinker/Smoker/Caffiene Status: Very light drinker ages 18 to 28, then maybe 2 drinks a year max.  Never smoked.  Coffee 3 or 4 a day, decaffeinated for more than a decade. Weight, BMI average 20, ranging 20 to 26. Health nut avoiding processed foods, anti-perspirants, chemical cleaners etc. since mid-20's, may have been exposed to strong herbicides 20 yrs prior to diagnosis. Contraceptive Pill for ten years in '70's.

Diagnosis, Grade, Stage (if known): ILC 4cm, grade 2, Right Breast 4cm, 9/36 lymph nodes, Stage 3C

Surgery: Bilateral Mastectomy, node clearance right side, SNB left side.

PR/ER and HER2 Status: ER 80%/PR 100% + HER2-

Treatment: BMX, FEC X 2, Refused 3rd infusion and refused 3 X Docetaxol. Radiation, Tamoxifen

Metastasis: No

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share): Osteoporosis found after Arimidex started, changed to Tamoxifen. Otherwise healthy apart from skin conditions.      

A section on other risk factors is needed, I included mine under alcohol etc. Also whether chemo was adjuvant or neo-adjuvant.  Also I'm curious to know which chemo or other treatments shrink mets and which have no effect as it seems ILC is still treated like IDC though it clearly is a separate tumour type.

I refused the last 4 chemo infusions as it seemed there was no separate data for lobular and the outcomes for neo-adjuvant were poor.  I'll post a study supporting my view in my next post as it's highly relevant to this thread.