ILC vs other breast cancers

I am ILC Stage 3A, with 7 nodes affected.  I was first told my reproduction/aggressiveness rate was 90% (when 20% is high) but I had tissue sent to another cancer hospital and their pathology results said I was 20% - a whacking 70% difference!!!).  I was also told grade 1 but second path report showed grade 2 (lobular is nearly always grade 2 when found apaprently) - both showed highly ER and PR + so against medical advice I refused chemo....and I still think this was the right decision for me. Statistics (which are always out of date anyway) showed the benefit to me of chemo was only 4 to 8% over 5 and 10 years......a long term study shows the benefits of regular exercise improve survival by 40 to 55%.............

Lobular is sneaky but is also very hormone dependent.....my main concern is monitoring as I had a mamogram less than 2 months before my MX and it said I was fine!! I was only diagnosed via MRI..........

So this thread is really interesting and I think proves latest research which is that breast cancer really is at least 9 different diseases and not one!

Just thought I'd jump in and say hello.  I was diagnosed with ILC on September 5, 2012.  Have finished with bmx and TE surgery.  Hopefully will start chemo one week from today.

I may win a "prize" for most unusual combination of factors:  ILC, ER+/PR+, HER2+.

Look forward to following your posts and progress.

Kim,

There is a survivor on the Triple Positive forum who has the same combo, SusieQ.  She said that 0.1% of breast cancer cases are exactly like ours.  I was not aware of that percentage. There is a lot of discussion and information on the Triple Positive forum -- you might want to drop in.

Well, I am not exactly glad to find you here, but it is very nice to meet you.

Martha

  Powermon and Kimbythesea

I have ILC and ER+ PR+ HER2+

I am a grade 3 and stage 3b.  I had 3 tumors in my right breast that chemo has blasted away.

I have not had surgery yet.  I go to the surgeon next Tuesday to work out my surgery plan.

I have always been active but have worked a desk job for years.  I did not know about the heavy exercise need.   My onc does not talk to me about survival rate.  He says he aims to rid me of cancer.  I will have a BMX because of the risk of moving to the other side. 

I would be very interested in any information anyone has to share from their Onc. 

Bev 

Dear all...

As another ILC survivor, with positive nodes (6/11) I'll mention that I had 5 clear regular mammos for five years and they were clear...but I have dense breasts, and I found my 2 c lump on my own through a BSE.

RE exercise...I researched this for recurrence prevention intensely, and there's a very large and lengthy study (National Institute of Health?) using nurses who were dx and followed over about 10 years. It proved that 3-5 hours of moderate (you don't have to run marathons!) exercise every week appears to reduce recurrence rate for all b.c. by about 25-30%, maybe more.

I lift weights, walk 30-45" 3-5 times a week sometimes more, and go to 90" of bikram yoga (very intense workout) 3 x a week.  It's as important to me as taking my tamoxifen. I was very athletic before b.c., so it wasn't hard to keep up this level of activity, but I'd never stop now.  I also like the idea that the hyperthermic value of bikram yoga very well could be killing any random cells floating around even though I had lumpectomy, dose-dense ACT, and 33 rad tx.  

I'm glad to see some activity on the ILC forum. It makes me realize that I'm not alone out there.  

Claire in AZ

Momine - this is very helpful information!  Maybe because ILC tends to be slow growing, the chemo does not wipe it all out because chemo targets fast growing cells?  I've already spoken to my OBGYN about a complete hysterectomy (I also have several uterine fibroids) and surely hormonal treatment will follow.  Again I appreciate the information! 

Claire - thanks for the information on the exercise.  I have been a runner for three years so was totally shocked by my dx in September.   But my plan is to continue on with the exercise.  Were you able to work out during chemo? I start chemo Tuesday.

I'm glad to see the ILC forum alive too.  I'm still trying to figure out how it happened (e.g. Dad had prostate cancer - genetic link?) and what I need to do different from now on.

Thanks all

Wendy

Wendy, my dad also has prostate cancer, as well as a pre-cancerous kidney and melanoma. His identical twin has had testicle cancer, melanoma, bladder cancer and pre-cancerous polyps in the bowel. All these cancers are in a cluster that has been associated with ILC in daughter of men with the above.

I was going to have the ooph to avoid tamox and go on an AI instead. However, like you, I had some giant fibroids in my uterus, so we took most of the uterus as well. I still have my cervix and the "neck" of the uterus though. They did the surgery with the robot and the recovery was very easy. It also got rid of horrible adhesions I had from the birth of my kid 20 years ago, so now I have a flat stomach and no abdominal pain. Win-win.

As for exercise, I was able to exercise during chemo. Nothing drastic, but during the first 4 rounds before my surgery, I took my dogs for a long walk every morning, very early (to avoid a lot of sun, it was summer and I live in Greece). I would take additional walks, sometimes very long ones, whenever I felt up to it. After the surgery, it was a little tricky to walk the dogs, but I kept walking all the same. Between chemo 5 and 6 we went to Paris for a weekend and I think I walked at least 7 miles each of the days we were there. When my mother was going through chemo 5 years ago, she used to ride her bike there and back, but she is Danish, lol.

Wendymartha, I do remember some discussion earlier on the ILC link or somewhere else about a connection b/t fathers with cancer and daughters with breast cancer; you'll have to search and see what comes up.

Thank you girls for ALL of the information on ILC and also exercise!  It was so encouraging to hear that you maintained some level of physical activity during chemo.  I am scheduled to start ACT on Tuesday and my biggest wish is to have little SE's with the ability to exercise.  I'm so thankful for these boards and all of you!

Rdrunner - my ILC was showing a single 2.5 cm tumor on ultrasound and MRI originally, with benign biopsy's on nearby sites.  My BS insisted on a lumpectomy but I did the research on lobular and insisted back for a BMX.  Post-op pathology found a 3.7 cm main tumor, with a 2.5 cm tumor in a different quadrant of the breast that was not found on any imaging OR by the surgeon during the surgery!  My non-cancerous breast was a mess with several pre-cancerous lesions.  And the MRI never picked up the pre-cancerous disease in the "good" breast.  Needless to say, my BS told me post-op that my insistence on a BMX was an excellent decision. 

Well my final pathology  report shows that the tumor we knew about was 6cm not 4, there were two other small tumors, 1cm, one another lobular, the other was IDC tubular subtype. There was also one dcis and one lcis. There was also a 10cm haratoma which apparently is uncommon. Anyone would think my boob was huge reading this and I was barely a B.  Nodes are clear, and the two lobular are er and pr positive, her 2 pending and the hormone status for idc is pending. 

So two different types in one breast, the mri didnt show the smaller tumors. The right breast will be going asap. My question is.. my surgeon thinks the 6cm means I will have chemo irregardless of clear nodes. Radiation very likely, margin ti chest wall was only 1mm but we cant get anything better than that due to anatomy.

So does anyone know if chemo is a go with a 6cm lobular no nodes and no lymph or vascularity identified in any of the tumors

Rdrunner.  I don't know what your oncologist will recommend, but I can tell you what I did and am doing.  My ILC was 1.8 cm.  Had an excisional biopsy, then bmx.  My nodes were negative.  I have had one round of chemo (TCH), with 5 more to go, three weeks apart.  Then I will remain on Herceptin for another six months.

Good luck with everything.  If your Her2 comes back positive, you will be pretty rare.  Triple positives with ILC are not very common at all.

Very interesting info about link between ILC and paternal prostate cancer. My dad has prostate cancer.



I have an 8 yr history and am sharing my tx choices I was treated for ILC in 2004. Lumpectomy, FEC for 3 months, MX after chemo. 2 of 17 nodes positive, 6 cm lump. Refused radiation and tamoxIfen.



Recurrence in 2008. Lump in MX incision. Surgery and radiation. Refused tamoxifen.



Recurrence in 2012. Mets to bones and muscle. Tried Femara, now on Xeloda. Surgery not an option as lump has tentacles growing into muscle.



What I don't know is if recurrences are ILC too. I'm assuming they are but maybe someone knows more about this.

My dad also had prostate cancer. I'm one of the rare ILC triple positives, too.

Hi PowerMom!

I"m doing very well. Through the radiation and on Arimidex. Just minor hot flashes. The first post-cancer treatment mammo is March. Still have some swelling but the bewb is looking more normal.

I don't know if anybody else had this, but during the PET scan they found a huge honkin' fibroid that I have to think about too. Everybody's on the fence about what to do about it. it's not giving me any trouble but it's a big sucker. About 5 by 4 inches.

Nope. No problems from the big ol' fibroid. I bled a lot when I was going through menopause, but I thought that was normal. Now it's not an issue, though.