ILC - The Odd One Out?

Crazyrabbit, 

Boy, we look like ILC twins, with our diagnosis. My BS and my PCP are both very confident that the lumpectomy is best. I trust both of them. My constant worry is about all the cancer that was in my axillary. Those nodes were bursting with cancer, matted, much larger than the primary tumor. Having a  mascetomy  now is not going to change any of that. 

I thought that if any thing else pops up I will "raze the rack" ! ( that is Momine line, I think it is cute )

How many more Taxol tx will you have? Are you tolerating it, ok? I finished radiation one week ago. Started Arimidex 3 days ago. 

Holeinone- you must be a golfer with that username. 

One of my LN was  completely encased with tumor. I hope the first 7 sucked up all the tumor cells and the remaining six blocked any spread.  I guess time will tell. 

I just had my first Taxol (1/12) yesterday. Finished the dose dense AC with luckily minimal SEs so hope I tolerate the taxol OK.  I feel so much better today the. I felt after the AC, no foggy head and my mouth is not as dry. 

 Good to hear your BS and MO feel the lumpectomy is enough. Sounds like our MOs have the exact treatment plans. 

Barbara

Woody - My prayers are with you. I'm sorry you got hit twice before the Holidays. Really not fair. I am so glad you joined us and shared your story. You mentioned your faith and that to me is everything. I like to "know" as much as I can, but in truth I really "know" nothing and put all my faith in the holy spirit. We are all on a journey and we're learning, sharing and caring the whole way. Fight those liver mets.

BettyBoo - thank you for all the articles. More reading, I can't wait to dig in. 

Wildflower - I appreciate the share on MD Anderson. I can't believe one size fits all. Isn't this crazy. I had someone ask me recently what was the measure of benefit in taking AI drugs, as in how was it measured to benefit me? I had to say that I thought the answer was pretty black and white. I either was NED or not. That same person then asked what the benefit of giving me a vacation from AI's for 3 months versus say 6 months was?  Again, I had to say good question. Her point was there seem to be a lot of questions, we don't know, and we have to trust our gut instincts, what our bodies are telling us, and that we are being watched over with loving hands.

This is a great thread. It feels like we are here for each other and what a blessing it is to be connected in our journey. 

Welcome to all newcomers. 

Hugs,

Kat

Hello Diem,

I am sorry you are here and wish you a speedy recovery. I can tell you from my own experience and since i am also ILC . The ACT is the most aggressive treatment there is and it is beneficial for ILC. Before i started my ILC i checked three different oncologists plus two more in the US anderson centre and Harvard medical center and they all agreed that this was the best treatment available. For me it held the disease at bay 3 years. But my nodal status were extremely high  compared to yours (22/23). So your chances of the ACT keeping this disease away for longer are much higher than mine. I would advise you to take a second and a third opinion and if two are the same you go for it. Wishing you the best of luck on your journey and don't be afraid you will succeed. Don't let it bring you down in any way. I finished the treatment with flying colors and i was active most of the time and my spirits were extremely high. You may gain weight do not worry about it will melt on its own six months after the treatment. 

Diem, I had FEC-T, which is similar, but has fluoro-something or other as well (I was/am stage 3). I had 4X FEC prior to surgery, followed by 4X taxotere after. The tumor was large and palpable. After two FEC treatments it had shrunk to half its original size. After four FEC, we could no longer find it (the path showed that there was still live cancer, unfortunately, but it was minimal compared to what we started with). 

Welcome Diem, I'm sorry you are here with us but happy you are here, if that makes sense. 

I can only share what my Oncologist told me. I, like you, was doing research on protocols and I asked my Onc why he was suggesting TC vs. ACT. He said that he had my genome makeup run and that it came back saying I would benefit from TC, and that I had a risk with A because it can be tough on the heart. It sounded like a good explanation to me. Have you asked your Onc's this question, why ACT vs. TC?  

I agree with Woody, always stress reducing to get more opinions. If you are not using UCSF or Stanford, both have good Woman's Breast Cancer Centers. 

Best wishes to you. 

You are so young. How did they dx you?

Hugs,

Kat

my onc chose TC over ACT again for the adriamycin /heart side effects ( and I have no heart issues) 

- the difference between the 2 is neglible as far as I am aware - just act been around longer as an accepted protocol  ....

When I was DX this past fall both my daughters were in college, and I wasn't able to be with them to,see how they were doing.  That was hard.  My younger daughter sought counseling help and my older daughter withdrew and didn't socialize on her down time.  When they were home for the holidays they saw me sick from chemo but I was still me and I think they are better now.  Both are studying in the health field and have had to,do research on breast cancer.  My older daughter was present during a presentation on BC and she got so upset she had to leave.  I wish I was there for her.  The best thing I can do for them, though is make sure they don't take BC pills, have early detection and make sure they fight for themselves for advanced imaging.

Hello ladies - and ladies with children of various ages. I have perspective on both ends of  this now (sadly). I was 12 when my mom was diagnosed with BC (when she was about 45), and saw her deal with it for 8 years. I am now 41 and have two kids in elementary school - - both a little younger than I was when my mother was diagnosed. 

I just want to say, that no matter what happens, the kids will be all right. Seriously. Although it hasn't been easy, I do believe I came through the process a stronger person.  Do the best you can to help them understand what is going on and to get counseling if needed - but also encourage them to live their lives and to have fun. Assure them that you're doing everything you can to get healthy and will keep them informed of what is going on. I was away at college when my mom was having a hard time towards the end. I did feel guilty I wasn't with her and contemplated dropping out for the semester, but she really encouraged me to keep living my life - and I made some life long friends that year, traveled and studied.  My mom hid a lot of her pain and exactly what was going on from me and from her friends and family throughout the whole process (and I really just learned the extent of this since my own diagnosis and talking with my aunt and a friend of my mom's about the whole thing)  and  I've made an explicit effort not to repeat this, and I've been very open and honest about things with my kids, friends and family - I'm not an overly outgoing person, and this has been possibly the most difficult part of  the process - to be open and receptive to help and love from family and friends, and I hope my kids will learn from this. 

As for ILC and hereditary risks... if you're premenopausal, even if your BRCA negative (as I am), there is likely a strong hereditary component if you have a first degree relative who's also had premenopausal BC. It's just that they probably haven't identified all the various genetic signatures that are less common. I would absolutely encourage daughters to see about MRI's relatively early, probably by about 35, especially if they have dense breasts (as I do - well,  did!).

Katarina or any of you,

If you find an ILC expert, please let me (us) know. And any pleomorphic expert. 

Thanks,

HollyBoo

re: pre diagnosis body and lifestyle survey:

63 dx uterine cancer

64 dx breast cancer after three plus years of "calcifications" on Mammos and US. Biopsy originally diagnosed as IDC. Post mastectomy 3 tumors ILC, one pleomorphic. Positive margin remaining on chest wall. Chemo strongly not advised. RT 25x. Arimidex now. 

Skinny kid, obese adult

Periods started age 10 and menopause late and looooong. Periods heavy, painful, clotty and about 21 day cycle. 

Migraines started with periods. Remitted during pregnancy.  Almost gone since menopause.

LOW blood pressure until mid thirties.  Then high. Still have low heart rate (60-66) and low basal body temp (97.4). 

ALWAYS, even as child, get hot when others are not. Pink cheeks!

Low thyroid, however. 

Pinched my left nipple between something in my early teens. Just remember it hurt like hell. And I didn't yell because I would be embarrassed. 

No BCP. 

MANY miscarriages. One birth at 41 (and one adoption at 42. Yay!). Breast fed for 2 years. Felt best energy during pregnancy even with morning sickness most of pregnancy. 

Sleep apnea diagnosed in mid 40's after much weight gain and tiredness. 

Yes, overly responsible, probably. Conscientious. A do-er. 

Stressed from 45 years to current with multiple usual and very unusual family events. But generally upbeat temperment despite. 

Non-smoker but heavy second hand smoke exposure as child and teen. 

Regular drinker but not heavy. 

I had intuition about cancer when an area on my upper outside left arm that had been biopsied decades ago felt sore, tender, "full" and hot to the touch.  AND I had a strange sensation over and over of energy like a mild and slow electric shock run from my left underarm to my nipple (where two of the tumors were found).  Doctor found nothing unusual and my experience was considered a random phenomenon. Even after diagnosis, doctors did not think my experiences had anything to do with the cancer. The electric zings are gone since mastectomy but my upper arm still feels full and tender at times. 

Oh. also these last many years during on the floor yoga twists I felt as if my left chest wall had a tight muscle that just would not loosen its grip. That's where the pleomorphic swatch of ILC was! And was growing INTO my chest wall. 

No family history of cancer. 

I have for about 6 or more years been carrying my cell phone in my bra on hikes and walks. Yup. Would stash it via my cleavage into my left bra side right up to my nipple.  Several times a week. 

Uterine cancer found when I persisted with doctor re unexplained fatigue. After hysterectomy I still was exhausted. Then BC found. 

I enjoyed others' reports. Some commonalities and some not. 

Woodylb,

I enjoy your spunk and spirit. 

HollyBoo

thank you for starting this thread.

Here are my stats

age at dx: 47

height/weight: 5' 11, 200 lbs.(size 16)

smoke:  for a few years 18-22 years old?  

BCPs:  for a year?  (When I was 20)

periods: first at age 13.  Chemo stopped them for 2 months, 1 month had it and now no more.

alcohol: depends on when/where.  Generally none, then might be a glass of wine a nignt for a week, if I am out at a party (not often) I can put back a few. 

exercise: dabbled at the gym.  Just prior to diagnosis started hitting the gym more regularly.

children: 3, first one when I was 34, then 36 and at 38

breast feeding: yes, 1 year each kid

DES: unknown

stress before dx: yes, my husband, my husband , and did I say...my husband!  My kids also can drive me nuts, but it comes back to my husband!  Anyhow,  i pray for peace on a regular basis and I think the cancer was my answer (warped thinking, I know)

family history: no

BRCA: negative 

breasts:  38b , but I swore the one where the cancer was found had gotten larger.  Dense breats.

blood pressure: normal

cholesterol: good

diet: never good.  

Root canals: never 

My BS said this is "old people cancer".  I wonder if regular screening is getting better at picking this up.  Exactly what stages are these older people when they were found to have ILC?  

I would like to comment to diagnostics.  My ILC was found via mammogram.  I have always had ultrasounds with my mammos,(dense breasts)  ultrasounds did not pick anything up.  Was sent for MRI, it didnt pick up anything additional.   Lumpectomy with poor margins on one side...there were additional calcifications..after that .I told the BS I would have mastectomy and we went to chemo first since it had been "so long" since diagnosis.  So did my 4 rounds of TC and then did bilateral mastectomy (my choice) and I found out there was additional ILC in that breast, that the TC did not kill!  

Also, was just thinking...this is "slow growing" yet wasn't picked up on prior mammos.  I think some of these techs don't "squish enough".  When I went to a second center my BS was affiliated with the tech there squished me so much that I was bruised.  If I have any advice to give anyone it would be to have that tech squish good....so they might see even more!

Also discovered during CT for my DIEP surgery was a node on my lung (the abdominal scan I guess went a little high?).  So while my oncologist said I was considered cancer free after my chemo my subsequent surgery and CT proved that to be wrong.  I am now being followed for this lung nodule...CT of lung showed a few nodules, but last showed only 2, both "too small to biopsy").   Honestly, I was dismayed that there is no protocol for additional scans when diagnosed.  I did go to a second onc, with some complaints of pain in my ribs in the back...I sort of suspected it was from inactivity from surgery but was unsure.  I knew my first onc wouldn't agree to the PET.   I was obsessing over this.   This onc did authorize the PET and all came back good, but she did comment that the nodule in my lung is too small to light up.  

I have terrified myself reading these boards, but I'd rather know the things I've learned here so I know what to look for.  Then again, ignorance is bliss!

Hollander, thank you for weighing in.  Yes, we each need to live our lives and not obsess with the dark side.  Thank you.

Pat

Diem,

Good for you for getting expert opinions. This is not a well researched cancer. And opinions re treatments seem to vary widely. 

My own initial biopsy was even misinterpreted as IDC. 

I too am in the SF Bay Area. I am with a major HMO but had a tiny bit of workup at UCSF and was quite impressed. 

Keep us posted about your Stanford and UCSF consults. 

HollyBoo

Thanks HollyBoo--My appt with Stanford is this Thursday so I'll definitely relay the news/reasoning for TC vs ACT