ILC Tumor Size

Sweetcaroline, I had a large mass and received neoadjudvant treatment.  It was chemo first, 3 x FEC and then 3 x taxotere (to try and shrink it) then a UMX.  I had clean margins and no node involvement, so I got to skip rads. I didn't know if I would have to do rads or not until the final path report came back after surgery.

Sweetcaroline, refer my dx info below.  Getting second chemo attempt now as the neoadjuvant failed leaving viable tumors in the nodes. Take everything and anything - be aggressive as possible.

ILC is known to be resistant to chemo compared to IDC. My docs didn't even try neoadjuvent but they still gave me aggressive chemo regime --- it's helpful with all the collateral cancer cells.

Sorry to hear they tried neoadjuvent therapy and it failed. That sucks and so does cancer. Hugs.

I have had annual mammograms every year since I was 30 -- 24 years.  Last year the radiologist compared previous years' mammo to 2011 and saw changes.  Initially they were doing more imaging on my R breast... both breasts are dense and mammo basically shows nothing.  Long/short of it -- ILC 9 cm tumor that finally showed up via ultrasound and then MRI.  Did neoadjuvant chemo (4 rounds red devil; 12 weekly taxol) and had BMX no reconstruction this past week.  Just got initial pathology report... 10 or 12 lymph nodes still show cancer and tumor shrunk to 2.6 cm.  Have followup appt w/ oncologist end of next week to determine future course of treatment.  I was set to begin radiation 4-6 weeks following surgery, but they left my port in because the possibility of addl. chemo had always been looming.

 I, too, would like to know or hear from anyone in similar situation.  What type(s) of addl. chemo have you or are you doing and did it/is it proving helpful?

I know they will rescan everything but what other tests do they use on Stage III to determine whether to do addl. chemo and/or simply move on to radiation and then ER+ drugs?

What a rollercoaster.  Grateful for addl. information and input! 

Mary 625 - Will definitely log back in and let you know what my oncologist says/does in the way of followup this coming Friday.  The nurse navigator said most probably (a) more scans since everything was 6 mos old, (b) more chemo, which is why they left the port in, (c) possible re-staging of my cancer, (d) radiation after chemo and (e) since I've now flipped from being triple negative to being ER+ (which seems like a blessing of some sort) I will probably end up on some sort of ongoing meds to address estrogen receptors.

Thank you for getting back to me so soon... I know you understand how scary it is to hear chemo did not erradicate your cancer.  My surgical oncologist said all along the goal was to send me into surgery cancer free -- which is what they see about 10% of the time.  So we're part of the 90%...

I'm grateful to have the surgery behind me and to have the healing process be fairly painless.  My oncologist did tell me it was probably good I chose to do no reconstruction since that could have been a problem w/ further treatment... not sure if he meant addl. chemo or radiation or both.

How are you tolerating Femara? 

Mary 625 - Met w/ oncologist and surgical oncologist today.  Got drain tubes out -- Yippee!  Found out I'm not just a littl ER+ but alot... 91%.  Oncologist is not going to re-stage me... said nothing had changed.  No addl. scans at this time.  Said chemo had been 95% effective, even though I still have 2.6 cm tumor and 10/12 lymph nodes w/ metastatic carcinoma.  He feels since the scans were 7 mos ago, and since I've done chemo since then, that the chances of there being anything on the scans is slim to none.  He is going to send an assay of my tumor to a special lab because it does have some abnormalities, to make sure there aren't other drugs it will respond to.  Until then he has no addl. chemo planned and I'm to meet w/ radiologist to get radiation started ASAP.  The only change big was proliferation index is down to 8, which is good.  And yes, I will be on hormone therapy after radiation for at least five years.  

One can only hope in the next five years there are major breakthroughs w/ cancer therapy.  When pushed he told me I had a 35-40% chance of reoccurence w/in 10 years, as they can be 90% certain w/ an original tumor that large (almost 10 cm) and 10/12 lymph nodes involved that cancer had spead somewhere.  Fingers crossed the chemo before surgery wiped whatever had spread out long ago.

I'm also going to be doing Traditional Chinese Medicine -- started it right after chemo ended to get me ready for radiation, and then will switch to ongoing tretment herbs after radiation, which I will also probably take for the rest of my life.

Beyond that they have no better plan for surveillance, which seems really odd and more than a tad disconcerting.  I got the lecture about watching my body for signs... no one knows my body better than me...  All I kept thinking was I never ever felt my breast cancer.

Hope this info helps and I'm open to anything anyone else had to add !!!!! 

Glad you are recovering from surgery. I too had a large tumor 10.5 cm, the surgeon said it was like a disc. In Oct 2010 my ob/gyn suggested I do a risk assessment at my mammogram appointment, basically a questionnaire to answer if you have a family history. I did that and it came back high they told me but I did not know until later that this was in fact 25% , I was referred to the breast center for a consult in January 2011, they suggested I do an MRI, however the NP 's caveat to me was "lots of women have unnecessary biopsies as MRI's show up everything" on dear just what I needed to hear, an out, I set off determined to research, and life with 3 kids got in the way.I then saw my pcp in July 2011 who dismissed their risk assessment out of hand, said of course I would come back high, did an exam and determined I had a dense area on the right but sent me on my merry way with no caution for any further tests, despite the fact that my mother had invasive lobular at the same age I was 46, again did it know this until after I got my diagnosis. In September I noticed the deformed breast and the rest is history.



Initially they talked about doing neoadjuvant chemotherapy but didn' t think they could shrink the tumor enough to save the breast. I had a right mastectomy with a sentinel node biopsy with insertion of a tissue expander. While I am technically node negative by the old standards, I fall into a gray area as 4 of the 7 nodes had satellite cells in them, I feel it is all a bit of a roll of the dice really. When I pushed back on tamoxifen they pulled out all the scare tactics and told me that they know hormone therapy works more than they know chemotherapy does, how reassuring is that after enduring months of treatment. In any case I have my last day of radiation tomorrow and will be so glad, onwards and upwards I hope, I do worry that the large primary tumor puts me at higher risk of recurrence but they discouraged me doing a prophylactic mastectomy at the time of the surgery. They are pushing the genetic testing and I am unsure really,I guess for the ovarian piece of it, has anyone got that pressure, it is not very clear cut really.

Wow, mine is so different than most of you. I didn't have any large tumors. What I did have was microscopic Lobular in just about all the tissue they took and the biggest was a 1.5 in a lymph node. I am currently doing 6 months of CMF chemo. I did  a lot of research and even though it is an older regimen the long term survival difference with CMF and ACT was only 1-2% without all the bad side effects. My MO actually said it is not used much because it has been around so long that no one owns the pattern on it anymore. I guess there isn't as much $$$$$ to be made with CMF.

Hi Momine - ok that makes sense. Really sorry to hear about your dad and uncle - tough family you should be writing the books!!

For me totally no history of cancer on either side apart from my sister. But as I said to the geneticist "it has to begin somewhere doesn't it"!! My contribution to the family tree ha ha!



Katarina - you and I seem to have really similar dx but you are 9 months further down the path than I.

No family history here. My Dad never had cancer and lived to 81. His brother had colon cancer, and a first cousin had prostate cancer, so maybe that's the connection. My current theory is that the cause of mine was years of DepoProvera and Mirena IUD.

Sian, Seriously, lol! His daughters were aghast last year because he was running around on #1 girlfriend with some other lady. So girlfriend #1 flew in (she lives in another country) to make a scene. Later she crashed the vacation he was on with #2 to make another scene. #2 has since been ditched.

So he was 80 and had two women fighting over him, the old goat. You can see him here: http://nordicdesign.ca/blog/2012/02/design-classic-kevi/ if you scroll down the page. He is posing with a couple of chairs.

Hi all!

I had three different cancers in my poor boobie. DCIS (I know pre-cancer), IDC and ILC.
It never showed up on my mammos. I am only 45 but because I am large breasted (DDD/F), I started getting mammos at 40. About two weeks before I was diagnosed, I started to feel a bit of tenderness at 12:00 to 2:00 on my left breast and my lymphnodes hurt. I had a gyn appt coming up, so I told her and she referred me to a diagnostic mammo/ultrasound. They biopsied my lymph nodes then tracked the cancer back. The mammo was still clear. Then I got a Breast MRI and boom! Lit up like the sun.

They weren't even sure of the actual size until my surgery. Turns out it was 11cm. 12 total, including the IDC. My surg. pathology report says that the cellularity was reduced 90%. So not a complete response.

Hopefully radiation killed off a bunch more fo the little buggers!

Unfortunately, self exams are the end-all be-all "they" proclaim it to be. Its a shame that more women aren't told/made aware that not all cancer is a hard lump.

By the way, I have hardly any family history (maternal great-grandmother had BC when she was in her 80's) and I am BRCA negative.

Unfortunately, self exams are the end-all be-all "they" proclaim it to be. Its a shame that more women aren't told/made aware that not all cancer is a hard lump.



The above statement should've read *AREN'T the end-all...*



Dianarose: I breezed through chemo. Drinks LOTS of water. I also took 30 grams (yes, grams not milligrams) a day 10g/3x per day of Glutamine and 50mg of B-6. Never got any peripheral neuropathy. During the Taxol, I kept my fingers and toes wrapped in ice (nexcare gel packs for the toes and frozen peas for the fingers) and never got any nail issues at all. I also slept 12-14 hours a day. Radiation was much tougher for me.



My lymph nodes bothered my one and off for years. My docs chalked it up to "colds" and "flus" because everytime they seemed bad, it coincided with a sick feeling. If I had known then what I know now, I would've demanded further investigation. But I wasn't a risk and mammos were clean. Hindsight is 20/20.



I wish you nothing but the best in your upcoming treatment.

Smiles!

mcmking- is you mom still doing fine? My MO said they don't use CMF here much anymore because no one has the pattern to it. It's very cheap compared to the others. I reasearched for a long time before deciding on which chemo to do. When I had bc the first time my MO mentioned Tamoxifen, but never really explained the whole hormone part of it. I am going to have my ovaries out to avoid Tamoxifen and try something else. Did you do chemo?

Geegster- I drink so much now I pee like I am 9 months prenant, every 15 minutes and 2-3 times in the night. I am not looking forward to radiation again. I feel better on chemo than I did when I had the radiation 8 yrs ago. I had absolutely no energy during rads. There has got to be something I can take to not be so tired this time. I will be doing rads Nov into Dec. which is extremely busy at work so it will be tough.

Hope you all have a great night.

mcmking- My first round was 2004 in the left breast. A small area of calcifications showed on the mamogram. The biopsy showed dcis and lcis. I had a lumpectomy and rads. This round a suspicious spot showed back in Sept. 2011 on the mammogram but on the right side. I had to wait weeks for them to repeat the mammogram, then several weeks for an ultra sound  and then they decided it should be biopsied. I waited weeks for them to schedule that. After 3 hours of them trying and tugging on my poor boob they decided they could not be sure if they had the right spot and said they needed to do an MRI. I had to wait weeks again for that appt. and when I got there and had the IV in place they said the woman who scheduled it made a mistake and it was too close to my period to do it so I had to reschedule it again.  The MRI showed a new spot close to the breast bone and the ones they sent me there for in the first place never showed up. They decided to do an MRI guided biopsy. By this time we were into December and my poor dad was dying from brain tumors and lung cancer. He passed away 8 days before Christmas. They finally scheduled the biopsy in January and then that got postponed for some dam reason and had to reschedule that one. I was quite beside myself by that time. They finally did it and it came back as IDC. They still wanted to biopsy the other spot so I had that done in Febuary. Again this scheduling crap took forever. That one came back benign so they said I could have a lumpectomy with the mammosite radiation. This was in March. When I woke up the first thing I did was feel for the catheter and it wasn't there. I knew something was wrong. They had found lobular cancer in all the tissue, no clean margins, and all 4 nodes they took at that time were positive. Three weeks later I was in for the double mastectomy. All the tissue had cancer and still no clean margins and she took more nodes for a total of 17 and all positive. I was so devistated. They said the cancer in the right breast was probably there when I had the first lumpectomy, but it wasn't showing up. I am glad my breast are gone. I like the new ones much better. Lobular is so tricky and doesn't show up most of the time. It has been one hell of a roller coaster ride. I can't wait to get off it in the spring.