Lack Of Updated Clinical Trials and Info

KJR1964

I have been trying to research ILC on the net for a few days now especially those of us that are HER+...It is getting closer to my appointment with the Oncologist and really wanting to be prepared... I know its probably been done so many times before but just wondering if everyone can put in one place their DX and treatments... The latest study I could fine is here ILC Charactaristics 2004 which is a good read but quite outdated...  As I think we all know this is not the most common form of BC and the lack of studies confirms this... You would think that they could just come onto this site and do some research as I have been doing in the last couple of days but my only problem is that it is all over the place.. Going through every post and trying to find out everyones different dx and tx that may be the same as yours... I know that everyone is different and that someone my have same dx but there may be more health and other issues that may affect the same tx but if we could just get a guideline and have some ammunition to guide us through the journey we are on it would be most helpful... xxx 

Here's my Questions with my answers with the information I have so far.. Please copy and paste and just add your own where applicable if you wish to participate I will not be offended if you do not I am just trying to research from real people your answers can be as long or as short as you need to explain your dx/tx and situations.. Also please feel free to add any other information or questions that I have not included to help any other Newly Diagnosed ILC Breast Cancer ladies/men... We are real people not lab rats and it will be very interesting to have all this information in one place for our particular type of BC... Thank you..

Age, Year of Diagnosis:   49, 2014

Nationality:  Australian

Current Age:  49, 15 days to turn the big 50

Children/Ages:  25, 23 x 2 (twins), 18, and 16 all Breast Fed (if that makes a difference)

Drinker/Smoker/Caffiene Status:  Yes (5 standard), Yes (30/day),  and Yes... No one ever asks about the coffee (I am an addict, over 10 cups a day??)  I would like to add that this is now changing (very slowly but one step at a time )

Diagnosis, Grade, Stage (if known):  ILC 4cm, ILC 1.6cm, Left Breast 4cm apart...DCIS - Grade Low.. No Comedo Necrosis

Surgery:  Left Mastectomy, SNB (CLEAR) 20/4/2014 until pathology report found trace of ILC 24/4/2014 which apparently is a bit of a common occurrence with ILC.. Surgery scheduled for 20/5/2014 for Removal of  all nodes...

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

Treatment:  Waiting

Metastasis:  This is a particular interesting question.... We seem to differ slightly compared with those who have IDC where this occurs..  Could be very interesting..

Reoccurrance (with dates):  None to date

Other Medical History (only if you want to share):   Abnormal cells in Cervix... LETZ procedure performed... Basal Cell Carcinoma Removal - Nose and Neck.. Does this have any bearing of DX???

I WILL UPDATE MY STATUS WHEN I KNOW MORE, AS WE ALL KNOW ITS A WAITING GAME AND CIRCUMSTANCES CHANGE FROM DAY TO DAY..

 

Robyn_S

welcome KJR, I thought I would share the curious coincidence in that we share the same birthday (also turning 50 on 29th May) and diagnosis. I too had two ILC tumours in the same breast (one 8.7cm other 1.6 cms) though both her neg. also Australian! My tx is listed In my signature and 3 years after diagnosis can say that I am doing fine! I am fit and healthier than I was at dx and have a real appreciation for life now! It is good to be alive! You will get through all this! I spent less time worrying about why my body let me down and focussed on doing the right things for the future. I am planning to die of old age in my own bed a long time from now after a long retirement spent traveling to exotic ports, reading good books and drinking very good wine! 

(((Hugs)))

jsd44

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

KSil

Hi KJR, and welcome. I had my surgery on May 20th of last year. I have to say that I am an odd case (diagnosed with DCIS, stage 0 eight years ago and opted for bilateral double mastectomy with tram flap reconstruction 8 years ago). I got a new primary in my reconstructed breast, in the remaining breast tissue and the tumor was lobular and not ductal. Had a re-mastectomy to remove my tram flap, and now have expanders and will be doing the implant exchange surgery in the near future. Best of luck to you.

Age, Year of Diagnosis:   48, 2013

Nationality: U.S. citizen

Current Age:  49

Children/Ages: two daughter's ages 10 and 12

Drinker/Smoker/Caffiene Status:  Yes (occasional), No,  and Yes (1 - 2 cups of either coffee or green tea per day)

Diagnosis, Grade, Stage (if known):  Left breast ILC 6 cm, grade 2

Surgery:  Left breast mastectomy 4 positive nodes out of 7 , 4 positive nodes with extracapsular extension, LVI - Stage 3a

PR/ER and HER2 Status:  95% ER + and 50% PR + and HER2-  (KI-67 less than 5%)

Treatment: Chemotherapy (ACT) 4 Dose Dense AC and 4 Dose Dense Taxol and am now on Tamoxifen and considering removal of ovaries and uterus.

Metastasis: .....  no distant mets

Reoccurrance (with dates): None to date

JohnSmith

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?

mary625

Age, Year of Diagnosis: 49, 2011

Nationality: U.S. citizen

Current Age: 51

Children/Ages: one son, now 22

Drinker/Smoker/Caffiene Status: Yes/No/Y

Diagnosis, Grade, Stage (if known): ILC, originally about 7 cm., Grade 2, Stage IIIC

Surgery: bmx, 16 nodes removed, 10 out of 16 were cancerous

PR/ER and HER2 Status: ER/PR + (80% and 100%), Her2neu neg

Treatment: Chemo (ACT), bmx, radiation, Femara

Metastasis: none

Reoccurrance (with dates): None to date

Birth control:  was using Mirena at time of diagnosis, had for almost 9 years, most definitely a factor according to one oncologist

lisa137

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.

KJR1964

Hi All and thanks so much for your replies... As you can see we are all very different and yet very similar..

Robyn:  How wonderful we share the same birthday...I was really looking forward to celebrating my 50th in Bali but have put that on hold until I get through this and then Yes it will be a big one.. I will be ready to live my life to the fullest... I understand that we have to get on with it but am just trying to understand and know everything about what is going on with my body to be able to do this.. We can all put it in the back of our minds but it is still there... I was just a little concerned that there is no up-to-data on the reoccurrence of ILC... Hopefully because it doesn't happen very often... That would be a good thought .. Karen

jsd44: Hi there... So sorry that you have to be here too... Looks like your on the same path as me.. Chemo etc... wow that was a big tumor ... that is the scariest thing about this...Mine was said to be a 3cm IDC tumor on first path biopsy but ended up being a 4cm ILC tumor (not large but still a worry) .. This is a great site and ask all the questions you can ... you will get the answers ... Hope all goes well on your journey.. Karen

KSil:  Wow you would have been taken aback with that diagnosis... That's the kind of stuff I am looking for here... There is so many different scenarios of what can happen... I know if may not but we still need to be diligent in checking ourselves and know that ILC can and may come back or as in your case just occur...

JohnSmith:  Now ... Your questions are a little bit more difficult to answer... Hence why I started this thread... I have not got a hard copy of my Surgical Pathology report as yet.. but have been told over the phone... The original tumor which was found by me as a form of large dent in my breast and an inverted nipple... I had ultrasound and was  biopsied and the path results came back as IDC Grade 2 3cm.. Radiologist also mentioned suspicious area (may need follow up) .. This happened two weeks later and another biopsy 4cm away from the original site with was DX ILC Grade 2 and small amounts of DLCIS... After surgery pathology came back as both tumors ILC and very small amount of ILC in the SNB... I am not quite sure whether the tumors were joined but being of two different status HER2 + and HER2- which I know is not very common and once again why I want to find out if anyone else has been down this path and the treatment received.. I have concerns about how it will be treated.. Everyone tells me they will treat the more aggressive HER2+ tumor but what about the other... Oh and I think its Multicentric?? Great suggestion about the birth control too...

Lisa and Mary:  Thanks for your replies... I see you both 49 as well.. Funny the studies I have read all say average age is over 60 for DX of ILC..... Also very interesting about the Mirena... I myself didn't use birth control a lot... haha that's probably why I have 5 kids...  

sgreenarch

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!

jsd44

I edited my history: no birth control pills ever and I did breastfeed for 2 years.

Thank you, KJR1964, for the words of support and encouragement. I met with my surgeon yesterday and, though still reeling from the path report news, I'm slowly realizing that the diagnosis is still the same, I just have more details. But I am wondering what's going on with ILC that there aren't better screening options since the mammogram took a loooong time to show anything. I've been doing regular mammos for about 4 years.

As for causes, yes, there are all kinds of ways we can change our individual lifestyles (though already this thread is showing such diversity in our lifestyle histories--I've been a vegan/vegetarian for over 20 years, eat organic as much as I can afford to, exercise, do yoga, meditate), but I'm extremely suspicious that environmental factors are the culprits: rBGH in dairy, plastics, air and water pollution. I feel very worried for my daughter and all of our daughters.

Momine

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. 

momand2kids

Momand2kids

Age, Year of Diagnosis: 48, 2008

Nationality: American

Current Age: 53

Children/Ages: daughters  18 and 13

Drinker/Smoker/Caffiene Status: very moderate caffeine intake

Diagnosis, Grade, Stage (if known): ILC Grade 2, stage 2 no nodes no LVI.

Surgery: lumpectomy

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

Treatment:  A/C 4 times, radiation, lupron/femara (I was pre menopausal)

Metastasis: Nope

Reoccurrance (with dates):
Nope

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

Jencine

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!

mary625

Dear Jencine:  I know the feeling that ILC comes out of nowhere, but now that you and your doctor can feel it, you and he/she will keep track of it during chemo.  My tumor continued to reduce in size after each treatment, and the palpable lymph node all but disappeared.  Now, as you will see below, I didn't have anything near a complete pathological response, but I am sure that the chemo was working because I could feel the progress myself.  If I had not or the doctor could not, I suspect they would have considered switching chemo or even halting it for surgery.  That is the benefit of neo-adjuvant chemo.  Otherwise, it's really unknown how well the chemo is working.  

As the doctor probably told you, there's no evidence from studies that neo-adjuvant is better than adjuvant.  It's just a theory.  Surgery would only create a short delay in the chemo process, so they probably wouldn't find much of a difference statistically.  I was glad I did the chemo as neoadjuvant because then the worst part of treatment was done and over first.  Also, no matter what happens, I know that I felt the progress with the chemo and hopefully will feel that I did everything that I could.  

Jencine

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.

mary625

No, I was not on Tamoxifen first.  The chemo threw me into menopause on the 2nd treatment, so I was eligible for either.  The doctor preferred the Femara.  I think there have been some studies since then that Femara is slightly better for ILC.  However, one must be in menopause in order to take it.  

Marie715

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. 

Holeinone

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Age, Year of Diagnosis: 58, 2013

Nationality: American

Current Age: 58

Children/Ages: one son, 31, daughter 27.  I was 27  & 31 yrs. old when they were born

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

Diagnosis, Grade, Stage (if known): ILC 1.5 cm Grade 2,  stage 3a

Surgery: lumpectomy, 6 positive nodes with extra capsular extension 

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

Treatment: 4 dose dense of AC and 4 DD Taxol, and 33 radiation treatments. Currently on Arimidex. Zometa 2 x a year for 3 years.

Metastasis: no

Reoccurrance (with dates): None to date

Other Medical History (only if you want to share): Hysterectomy, sigmoid colon removed, H-Pylori.

vanessa99

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.

fighter13

Age, Year of Diagnosis: 49, July 2013

Nationality: Australian

Current Age: 50

Children/Ages: Son 14yrs, daughter 12yrs

Drinker/Smoker/Caffiene Status: Yes probably classed as heavy wine drinker/non-smoker/yes 3 cups coffee a day

Diagnosis, Grade, Stage (if known): ILC, 20 tumours over an area of 10cms largest single tumour 1.6cm, 3 out of 17 positive nodes stage unknown

Surgery: Lumpectomy & SNB July 2013, Mastectomy & Axilliary Clearance August 2013

PR/ER and HER2 Status: ER+/PR+ strong both 100%, HER-

Treatment: FEC-D x 6, Radiation 50gys to chest wall & supraclavicular nodes, Tamoxifen.

Metastasis: No

Reoccurrance (with dates): No

Other Medical History (only if you want to share): I have a 4cm simple ovarian cyst that was picked up during routine scans which is being monitor while on Tamoxifen

jsd44

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?

mary625

It may be confusing because Doxil is also known as Adriamycin.  What is proposed for you is AC/T--Adriamycin with Cytoxin, followed by Taxol.  Some of us take the Taxol every week for 12 weeks and some of us in the 4 treatments every other week.  

aff

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

aff

Jencine,

I also responded well to chemo. I was dx on 12/3 and began chemo on 12/19. My tumor has been significantly reduced and the palpable node under my arm is gone. I am scheduled for surgery on June 6 and will update when I get the pathology results. I do not have any regrets about doing chemo first and am glad to have closed that chapter.

KJR1964

Sorry been MIA... Have had my AND and am recovering...Have also managed to get a hard copy of my path report from the Onc... Once again my DX has changed... I now have ILC Tubulolobular variant for both tumors.... Tumor 1: ER+ 90% PR+70% HER2 from +2 to Non Amplified using the SISH test... Tumor 2:  Tumor 1: ER+ 90% PR+50% HER2 from +1 to Non Amplified using the SISH test... DCIS throughout low grade and lots of other unknowns.. Have been trying to find out what Tubulolobular variant means.. Not much research on this either.. Have decided that it is why they DX'd it IDC in the first biopsy... Anyway I will continue to research , wondering if anyone else has this variant... Meanwhile my first Chemo is scheduled for the 7 of June.. Unsure of which way I will be going until the 4th for follow up with the Onc... No path results for the Nodes involvement yet... Hoping everyone is going along fine and thanks so much for posting here.. I now feel I am not much different from everyone else being HER2- now  which makes more sense..

gemini4

hi KJR ... Looks like we are Gemini twins from 1964?  :-)  I just turned 50 two days ago myself. 

Is chemo a definite for you?  If you're on the fence, can they do an OncoType test on the tumor?  My score indicated that I didn't need chemo. 

I don't know anything about the tubulolobular variant ... Hopefully it's just a fancy word for something simple!  So are you officially HER2-neg now?  I know I've read other women here report that the pathology changed from positive to negative after surgery. 

All the best to you, and stay in touch!  

JohnSmith

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

can't help feeling very sad and unlucky. I was diagnosed in 2012 aged 37. Tumor 3.1cm one node only. Grade 2. Classic lobular. Low mitotic rate.  7/8 for er no vascular invasion . Has mx chemo rads and tamoxifen. Stage 2b  low risk recurrence . Diagnosed with mets to pelvis in April 2013 which have since moved to spine and femur in three months. My boy us now 5. Prognosis is poor. Cannot believe this is happening 

Gitane

((((Torridon))))

mary625

Torridon...thinking of you!  You're right, this should not be happening to you.  

luv_gardening

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.