ILC vs other breast cancers

Racy

Good luck, Laura. Follow all the chemo advice on this site and you should be ok through treatment. My top tips:



drink lots of water;

eat what you feel like - small and frequent;

rest when you can;

be proactive with a laxative, eg Senokot;

monitor your temperature and contact your onc immediately if you develop a fever.



You will probably find the side effects mostly occur in the first week of each cycle and may vary in intensity from cycle to cycle. You should feel more normal in the latter part of each cycle.

Racy

Dreaming, thanks for your inspirational post.

seacretgardn

Racy thank you for your encouragement. Day one wasnt good but I was amazed at the improvement today. I know I'm not out of the woods yet, feel a little queasy now and wired from the steroids so might take a zofran just to be safe.



Laura

Carla56

Been up most of the evening reading a lot of these threads....very scary:-( I was diagnosed with stage IIa ILC grade 0.3 cm 1 ER+PR+HER2- BRACA- Oncotype DX 5 and I had a lumpectomy with 1/2 nodes .I had great treatment at the hospital , loved my surgeon ( clear margins.....no extra surgery needed ) However, I began to get nervous when my MO came in and said GOOD NEWS NO CHEMO.....really? Are you sure? She looked like I just put a pin in here balloon .....not that I'm Chemo seeking....remember I had a node involved....yup, she said 35 days of rads ( one week with an energy boost ) breast and arm pit with 5 years of Tomoxafin .....Still felt like a deer in the head lights. Since then I've done a lot of research....Not liking the ILC thing:-( at all. Went for a 2nd opinion at a university....he cave me the same line with a little of you may consider Chemo....for any stray cells, however, the chemo doesn't work on your cancer as it does on ductal....really? But , for your peace of mind.....it may?I did NOT give me an answer of how it may help my survival rate...maybe 1 or 2 % but, it's up to me...really, NO suggestions..no answers? He says this is all shades of gray ...I left there frustrated and anxious...he said he needed an answer by next week. Even thought my Onco score was very low..it still wasn't good enough for him as I'm peri-menopausal not post-menopausal...so then it started to bother me....by the time I got home I was all 100 shades of bothered....this is MY LIFE! He's the professional, I'm the patient..I'm looking for an educated guess.....Has anyone here heard of this type of treatment for a stage IIa....my life depends upon it... Help...thank you all

TinaT

Carla56 - Sorry you're feeling like you're not getting the answers you need from your docs.  It's scary and it sucks.  My situation is different from yours - stage, surgery, nodes, and I had multiple tumors - so I can't really compare my choices to yours.  My Oncotype DX was 18, right on the blasted borderline of "no chemo" and "we don't know if chemo would be of benefit".  I'm 1-1/2 years post diagnosis and at my last oncology appointment asked my wonderful MO to review AGAIN why she thinks chemo risks outweigh the benefits for me.  I've done well dealing with bilateral mastectomy and reconstruction, but the chemo thing just still sort of nags at me.    

As you know, Oncotype DX is genomic info on your tumor tissue.  There are also statistical models that some oncologists use.  Here are links to both LifeMath and Adjuvent! Online.  My MO uses the latter.  Did either of your oncologists present you with any numbers other than Oncotype?  You might ask about these models:

http://www.lifemath.net/cancer/breastcancer/therapy/index.php

http://www.adjuvantonline.com/index.jsp

They are not designed for patients to use on their own, but to help oncologists present some statistics to their patients. 

Sorry I can't help more.  Just wanted you to know that you're not alone.  Hang in there!

akler53

Hi there, I am new  from Nova Scotia. I have ILC. stage II, grade 2,  no nodes E/P + Her2 - left breast. I was multifocal so had a mastectomy, no rads. Plan is for preventive mastectomy right breast, as risk so high for it showing up there with ILC. I saw my oncologist and he said I have a choice to make. Did not expect him to say that! Choices are:  Hormone therapy(HT) or HT and Chemotherapy..... Can't get the Onco dx here yet to help inform my decision (not approved by NS government) Doc says +30 % come back in grey area and at $4000.00! Grey was not acceptable. Need to make a decision by next Thursday, so have been reading like I am cramming for exams What I am finding out is that ILC doesn't repond very well to Chemo but because of the E/P+ (mine is 100% recepter +) Hormone therapy is the thing for this type of cancer. Even the hazard ratio worse for Chemo in ILC compared to IDC., Glad I found this topic! Any words of wisdom are appreciated.

A

Hipline

Carla, there is a lot to read and it can often be overwhelming but don't let it scare you - let it empower you. You will be your own best advocate. I think the doctors are overwhelmed themselves just seeing patients and don't have the time for much else. I constantly ask questions and spend a lot of time reading the boards. My Onco score was 16 and I did not do chemo. Three onco's agreed. I am on Tamoxifen and see a naturopath to help with side effects and general well being.



Akler, my diagnosis was much like yours but my pathology said I had vascular invasion and still they recommended no chemo. Check out http://cancer.lifemath.net/



It's a journey!!

TinaT

akler53 - My oncologist always uses Adjuvant! Online which is a statistical model.  She only did the Oncotype DX at my request.  As mentioned in the previous post, http://lifemath.net/cancer/ is another statistical model.  Adjuvant! requires registration and is supposedly only to be accessed by doctors.  You can type in your own stats into lifemath, but all results are meant to be discussed with your healthcare team.

Please forgive me, but why do you need to make a decision by next week?  If you need more time to research and ask questions a few extra days or weeks shouldn't make a difference.  You should have the opportunity to feel you've made the best decision for yourself.  Just my two cents' worth.....

This is a tough time, but once you decide on a plan it will get a little easier.  Best wishes!

Momine

Hi there, I was stage 3, so chemo was not optional. I had FEC prior to my surgery and taxotere after. The 4TXs of FEC shrunk my tumor from over 5 CMs to less than one. I did not have complete pathological response, but the cancer most certainly responded to the treatment. As far as I can understand the meme about chemo "not working" on ILC refers to the fact that you are much less likely to get complete path response with ILC, but it doesn't mean that the chemo doesn't do anything.

I would discuss with the onc which chemo he plans to use if you do chemo. Only after my treatment have I started to learn about the differences in chemo drugs. The FEC includes an anthracycline, which I now know are not especially useful for ILC and can have long term repercussions. So that might be something to avoid.

mtks

Hi, I've been on and off the board reading. I am 2 years out from insisting on a biopsey to rule out my "gut" feeling.The mammo and us didnt pick up, Or should I say-mammo showed mammographic abnormality, a us is needed.  US showed there is an oval lesion is anechoic. This corelates as an incidental finding. There is no vascularity. Incidental benign cyste noted. Pt rec. to return in 1 year. My gut told me different. Had a lumpectomy and the small hard pea-size lump was benign- it was the tissue that came out with the lump that was ILC. I had pain in the 11 o'clock area of my left breast that would come at any given time. Pain and the pea size lump(which was diff. then my fibrocystis areas) that made me realize something was wrong. The surgeon wanted to aspirate, I wanted it out. Now 2 years out I am having pain in my left clavical area. I had some fat grafting done during reconstruction right above my implant so I dont think it's fat or my right would have this feeling. Plus I've had this pain b4 FG. Since April 2011, but very seldom. For a year I thought it was due to surgery and needed time to heal. It's Straight up from my areola in the clavical area and over to my arm. It's every day now. MRI didn't show anything but I dont see in the report the area of concern was addressed. States Implants look great with some "shoty lymph nodes.? Any advise out there? Questioning radiologist professional reading. Same Radiologist that read mammo and us 2 yrs ago. I really need to hear from someone that knows ILC can be tricky.

akler53

Thanks Hipline, I checked out the calculator. I had no vascular involvment on either the BX or the post mastectomy pathology. I found a few journal articles specific to ILC, and it is reassuring. Bottom line is there are no guarantees, but I do feel much more informed.

akler53

TinaT- Thanks - Looking at the website for it, I can see that my onc used Adjuvant! as well ( the report I have doesn't have a logo on it)  Sorry, I hadn't intended to make it sound like he was pressing me into a decision. It is more me I think. I will be 9 weeks post OP and while the window seems to be up to 18 weeks for adjuvant therapy, I would like to get the ball rolling to start killing any cell that may possibly have escaped the scalpel   

Momine - Thanks for the info about FEC. I will discuss with my onc if I choose Chemo.

Thanks everyone, I really appeciate your replies.

TinaT

akler53 - I understand now .  Just glad to hear that your medical team isn't rushing you.  I think we all understand the feeling that there's an invisible enemy inside and we just want it gone!  It really will get a bit easier once you make some decisions and start on your plan.  All the best!

FLwarrior

My treatment was adjuvant with 3x FEC followed by 3x taxotere all prior to UMX.  After treatment, Onc said it looked like swiss cheese.  Chemo reduced the size of the tumor and filled it with holes, but it did not eliminate it.  My surgeon was able to get clean, clear margins, which I was very thankful for!

Momine, what are the long term problems from FEC you were speaking about? 

I seem to have more long term problems from the taxotere. The worst being "glove/sock syndrom" hand/foot neuropathy.

Katarina

I was told by multiple Oncologists that ILC was not responsive to chemo, as much as it is to anti-hormone therapy (if your ER/PR+ anyway). I had chemo only due to vascular invasion.

I worry more about vascular invasion -- that's changing how they stage cancer altogether. ILC is sneaky.

Momine

FLwarrior, the FEC can cause heart damage, which can be lasting. Also, as far as I remember, the anthracycline part can cause leukemia (but double check, because I am not sure). The neuropathy from the taxotere should get better, although it can take quite a while. 

As far as ILC not responding to chemo, I think that is a misnomer. It is just that it is less likely to be completely wiped out with chemo. But even with ductal cancer, a complete path response is only obtained something like 20% of the time.

Chemo is imperfect in many ways, but it does work, just not perfectly.

Katarina

The oncologists who told me not to bother with neo-adjuvent chemo were UCSF Breast Cancer experts. I took there advice and went straight to surgery. My post surgery chemo was to kill LVI cells.

Hugs

Momine

Katarina, apparently oncs differ on the value of neo-adjuvant chemo. All I can tell you is that my tumor shrank a huge amount, which made it easier to get good results from the surgery. 

GabbyCal

akler - I see your original post was over a month ago, so this is a little late. I wanted to drop a note to let you know that from my research your doc is right that you probably would have spent $4k to get an Oncotype result in the "indeterminate" range. Another variable to factor in is that the original Oncotype testing on which all its predictions are based was done on IDC tissue samples. It's been pretty well established that ILC responds differently to chemo than IDC so need to factor that in as well. I hope that you're doing well.

akler53

GabbyCal- Thanks so much for your note. It was reasuring. I am learning that ILC and IDC are quite different. After much reading and reflection I decided that Tamoxifen alone was the right choice for me. I have some side effects but compared to Chemo.... I try not to complain. My preventive mastectomy is in the first week of Dec. I am really hoping this helps me move forward... Overall I am doing well. I hope you are as well. 

Wendymartha1

Thank you ladies for this thread.  I am about one and a half weeks post BMX and am trying to learn about my ILC and next steps for treatment.  The docs at the breast clinic are still trying to figure out recommendations for me and have given me no answers.  I don't even see a MO for another month!  I think it is because of ILC, and my IIa status (which they aren't sure about because of two tumors they found that may or may not be connected). They aren't even sure if they will send out for oncotype testing.  So I decided during this month wait to go get other MO opinions.  Then by the time I see my MO at the clinic I will have more information.  ILC is so tough...it makes our cases perplexing and as such frightening. 

Thanks for the ears!

Wendy

momof3boys

Wendy- why are they considering not doing an Oncotype test? I think not seeing an mo for another month is ridiculous. Can you get another opinion. None of my doctors indicated that ILC was a puzzle or that they didn't know what to do/ recommend. It is more difficult to detect, but once it's known, it shouldn't be difficult to get a treatment plan in place.

I'm really glad you got a BMX. I feel that's the best decision with ILC.

cheyenna

Wendy i agree with momof3boys, ILC is not much different then IDC,other then its in your milk lobs, and not picked up on mammos, it feels like breast tissue at first.. It is treated the same way, its very simple...i think you should see someone else. Find yourself a good ONC and get in soon!! May i ask? if these DR's at your breast clinic are general surgeons? Its crazy what they have told and not told you...Have you looked or do you have a copy of your biopsy report? it will tell you about the two tumors. Im just shocked they dont know what to do.. I have learned through my journey to be my own advocate!! Btw, i got a double bmx as well, its just too hard to pick up.. Im glad i did and have no regrets



Chey</p>

Cindi74

Cheyenna, I agree with you.  I notice that we have the same treatment although I had lumpectomy and will do rads also.  My first biopsy they said Pelomorphic Lobular Carcinoma.  After Surgery,

Invasive Lobular Carcinoma.  Oncologists hasn't really explained the discrepancy. Will be interested in anything you learn. 

FLwarrior

Hi all, It is my understanding that they do the onco-type to determine if you need chemo.  In my case my MO said because of the large size of my tumor, I needed chemo to try and shrink the tumor prior to surgery. Because the chemo was a given MO said there was no need to do the onco-type. The chemo shrank the tumor and filled it with holes,but didn't eliminate it. Thankfully, the reduction in the size of the tumor resulted in clean and clear margins at MX!

Wendymartha, do you have a copy of your pathology report?  If not, you should ask for one.  I found that they do not always just give you these things, that sometimes you have to ask. Good luck to you!

Momine

Wendy, I am with the rest of the gang, get another onc ASAP. I had biopsy and scans over two days in the hospital. I started chemo 12 days later. My doctors apologized for my having to wait 12 days to start treatment, but explained that they needed to wait almost a week for the path report and then needed a few days to sort out the treatment approach.

I do realize that my cancer was more advanced than yours, and that they may need to discuss more angles in your case, but you should still not have to wait a month to see an onc.

Wendymartha1

Thank you very much ladies for your advice.  I am on the hunt for another MO (or at least one that I get in to see before a month).  It is so frustrating!  I chose the supposed best clinic in our metropolitan area but the problem is that it is so busy that it is incredibly backed up.  These decisions are so hard! 

I did get a copy of my path report and luckily I have a friend who's son is a breast pathologist in Boston.  So he is going to give me a complimentary consult based on the path report(s).  My surgeon is a breast surgeon; she heads up a breast clinic in my area. She came highly recommended.  The DH and I really liked her initially, but now not so much. 

I appreciate so much these boards.  Thanks again.

Wendy

MommyGoth

Hello all

I have been reading the forums for at least a month now. I was originally scheduled to see a breast surgeon, then appt changed to MO due to the size of the tumor in my left breast. She is getting me ready for chemo to try and shrink the tumor first, then surgery then rad. 5 yrs of AI after that.



Getting my port put in wed, bone scan thurs, heart test fri, MRI next week... Thinking may be starting chemo before the end of the month. Wee... Gonna try to just let go and ride the rollercoaster! Heck of a way to make new friends, but I know all the ladies here are great! Rik

MommyGoth

Adding to above, my MO says once diagnosed, there is little difference in treatment for ILC vs IDC. She seems quite experienced and has good credentials (MD Anderson). Mostly important I seem to be able to talk to her and she takes her time, not rushed. I intend to keep myself informed, keep reading, etc. I appreciate that we seem to have started off well and hope this bodes well for my treatment. Part of me is calm and confident and part of me is terrified

Cindi74

Mommygoth,

Sounds like my introduction to BC.  What has really helped me endure has been the bc.org website.  The descriptions of scans, surgery, chemo on the main site helped a lot.  The only real pain I have had was three attempts to hit rolling veins the day I got the port which I LOVE.  Then it took four attempts on the day I did the muga (echocardigram).  If I had that to do over I would have taken an anxiety pill and a pain pill before I went for both.

The chemo before and after discusssion board has great tips.  Our Sept 2012 thread involves about 50 who have been traveling the chemo road together. (start at the beginning to see tips that helped.)  You may want to start a thread for your month.  We look after each other.

It's not fun, but it's doable.  You can share with the WONDERWOMEN on line your fears, pains, tears and triumphs.  Hugs and no Side Effects.  (SE)