scarey large tumor

ladybug728

I was diagnosed in July with a 10-12cm. tumor (filled the entire breast).  It is ILC and did not show up on a mammogram that I had 6 wks. prior to diagnosis.  It was also not picked up in the 5 yr. clinical trial (was on Arimidex for 5 yrs.....short of 2 wks.) that I was participating in for a previous DCIS in the same breast (they are telling me this is still a recurrence of the same cancer).  Ultrasound revealed the shockingly large tumor and now of course, I am scared.  Is there anyone who has had such a large tumor of ILC?  I am doing neoadjuvant chemo trying to shrink the tumor so they can sew me up without doing skin grafts when I have a modified radical mastectomy in January.  So ar the tumor has shrunk a good 75% or  more and I am delighted.  I am also wondering though, if it is possible to be lymph node negative with a large tumor?

ebann

ladybug728 I was dx in 4/10/08 and my tumor was 12.5. I though have IBC. I had gone misdx for a month and finally sent in for the test. It did not show up on mammogram or ultrasound which is normal for IBC. I had a biopsy. I had to have chemo first to shrink the tumor. Mine did not shrink, it did freeze the aggressive growth though. I had a radical mastectomy as well on both. They found cancer on the other one. I did have positive nodes. They removed 16 nodes and 3 were positive so the rest were negative. I had to do more chemo and radiation together. I did this for a year. I prognosis was 30% chance of survival. I beat the odds. So there is hope. I do wish you the best. PM me if you need to Love to chat.

ebann

IBC is inflammatory breast cancer

Gitane

ladybug,  Hi there, from another California girl.  I guess you could say my case is like yours somewhat. I had DCIS, too, not all that common with ILC.  My gyn did not feel my cancer one month before my mammo.  The mammo did not show it, either.  What did show was a "distortion" of about 2 cm that didn't match the other breast; using the ultrasound they were able to do a core biopsy on that area and I was diagnosed.  MRI showed the cancer as individual foci all over the place, over an 8 cm area.  I had tumor foci spread over the top half of the breast, behind the nipple, and a focus down at the bottom. Like you, I responded well to chemo.  The SNB was done before the chemo, 9 nodes were removed, 2 of them had ITC's and one had a cluster of about 1 mm.  Since they don't know the size of the tumor for sure I'm either IIIa or IIb.  I am PR-  and pleomorphic, which makes my case a bit unilke yours.  Were you told you are Grade 2?  Hope this helps you feel less alone.  I'm so sorry that an ILC was diagnosed while you were on Arimidex.  ILC is usually very hormone responsive if ER and PR are positive.  Let us know how you are doing.

ladybug728

I was told the pathology of the biopsy was Grade 1 but that the clinical diagnosis did not agree.  My first cancer was a Grade 3 and the oncologist believes this is a recurrence of the same.  My stage could be 3a because the status of the nodes is unknown and with neoadjuvant chemo, may not be known at surgery because the chemo was done first.

AnacortesGirl

I thought the biopsy pathology always trumped the clinical diagnosis. 

I think you're right about the 3a because they don't know the status of the nodes.  All three oncs I saw wouldn't put a letter on mine because of the neoadjuvant chemo and not have had the nodes evaluated on a surgical path report.  But in my case the nodes showed up on the MRI, US and they were felt as a mass under my arm before my excisional biopsy.  They did a needle biopsy but even then the best they came up with was "suspicious" because they said they couldn't get enough tissue to properly evaluate. 

The good news is that after 12 weeks of Taxol I can't feel the mass anymore.  Hopefully the AC will continue to tromp on the cancer cells (start AC on Monday).  What chemo have you been taking that has given you such great results? 

KerryMac

I have a friend who had a 12cm ILC and was node negative. She is over a year out from treatment and doing well.

Sounds like the chemo is kicking some cancer butt!

ladybug728

As for the pathology, I understand you can get different diagnoses depending on who's looking and how long they looked.  My breast turned suddenly hard in 4 wks. and for that reason my oncologist is treating it as an aggressive cancer rather than a grade 1 (also it was nuclear grade 3).  If it is the same cancer as I had before, my last pathology on it showed a grade 3 cancer.  And if it is not, I haven't lost anything.   Better in my mind to treat it as it is behaving.

If you got those kind of results with Taxol, after 4 rounds of AC you may find that your tumor is completely gone.  My AC treatments shrunk the tumor the most dramatically.  I am on the 9th of 12 rounds of Taxol now, and I really haven't noticed very much change since the AC rounds.  You will probably find that the SE of the AC are a little tougher.

ladybug728

That is soooooooo uplifting.  I hope I am that fortunate. 

lexislove

I responded to your other thread...

I had 8cm tumor, no nodes, Her2+. No rules with BC. People assume the bigger the tumor the more nodes involved. That isnt always the case...

rreynolds1

It seems like lobular has many very large/node negative tumors.  I don't see the same thing with the ductal posts.  Very odd.  I wonder why?  I know it can go undiagnosed longer but why does it not appear to spread to the lymph nodes as often when the tumors are quite large at diagnosis.  I checked out the anatomy of the breast and the lobes might keep it in place longer.  I don't really know what I'm talking about but I hope someone out there can satisfy my curiousity.

Roseann

lexislove

I think I have read before that most ILC tumors are lower grade...1&2. Where IDC is mostly,not always,grade 3.

Maybe the aggressiveness has to do with the spread.

susaloh

Ladybug, what I found scary is how much your story is like mine. Really, for a moment I was confused and thought I was reading a posting written by myself. Definitely of all the very alike cases on this ILC board you are the most similar to mine I´ve ever come across. Unbelievable and so, so different from the normal IBC story, in a way it reconfirms that I was not imagining things, that my own story is true!! My tumor started to turn hard 10 days after a clear mammography end of August 2005. From one day to the other there was a hardened spot the size of a large coin, after 5 weeks the whole gland had turned hard, in such a regular way, that the doctor even refused to do u/s. He simply didn´t believe my story about the hardening process.

By Christmas it was filling the whole breast and in January the gyn almost fainted when he saw my breast. The worst moment was when one doctor at the hospital opened his drawer and took out a ruler to measure my tumor. A ruler! That was even worse then the 10 cm he measured. I thought, that´s it and it took another doctor a lot of energy to pull me out of that black hole I fell into.

Well,  I had neoadjuvant chemo like you, and especially the EC (similar to AC) did the big job, which seems to be unusual. I got used to the tumor shrinking several cm each time. Then 4 chemos taxotere and it didn´t shrink much anymore, and it wasn´t "dissolving" like I had hoped for. So when they read the path report out to me later I wasn´t surprised when they read "residual tumor 4.5cm". But then the doctor said "wait a minute, it says 4.5 MILLIMETER here!!" He even rang them to reconfirm, but it was true. All the rest was fibrosis, dead material and deep deep in there were these 4.5 mm!!!!

That was definitely the best moment of the whole year. I was also told I had one micrometastasis in one node of 2 mm. The other 10 were free. However, later I learned that they had found lots of fibrosis in alle the other nodes. The tumor must have behaved there like it did in the breast, first spread everywhere and then turn hard. If your case continues to be similar to mine you might have the same experience.

I was a grade 2, by the way, and I also thought, that my tumor must be very aggressive because of it hardening in such a short amount of time. However, I was surprised to find in several reports that it was slow growing, there were very few cells in the process of multiplication. Maybe you should ask them to measure things like "mitosis" of "Ki-67", that might be interesting to know in your case to assess your situation. Like you I was ER and PR positive and Her2neu negative.  

They also told me, that in spite of size and of lymph node involvement at time of diagnosis, the fact that my tumor had reacted so very well to chemo meant a good prognosis! I am three years out now, so far NED. I hope that, as it´s slow growing, if it comes back it will be after many many years of antihormone therapy and that by then there will be many more ways to beat it.

In my case a very very good radiologist discovered  tiny ILC tumor in my other breast - if it hadn´t been for this very experienced lady, it would have gone unnoticed and would have been killed by the chemotherapy anyway, but as it was discovered I decided to have a double mastectomy. I had no reconstruction and I am very happy with how it is. 

How old are you? I was 44 at diagnosis. If you like, ask me any questions, I am happy to give you any information you want!

Susaloh

ladybug728

Hello, Susaloh...you definitely have encouraged me.  Our stories are really so alike.  My oncologist didn't think I had cancer when she saw my hard breast, but did refer me to the breast clinic for evaluation.  As I told before, even that Dr. thought I had an infection and sent me home with antibiotics.  It was when I got to the 3rd Dr. and my breast was bulging with the hardness that I had the US. 

I am 61 yrs. old and my DCIS occurred at 56 yrs.  Did you have radiation after your surgery?  They are telling me that I won't be able to have radiation because I had it 5 yrs. ago, and aromatase inhibitors, like Arimidex, has proved to be ineffective for me.  Also the Tamoxifen has a possible SE of blood clotting and I have three genetic blood clotting disorders (my 34 yr. old daughter, who has the same disorders,  just got a blood clot in her brain this year).  So I am a little concerned about what happens after my surgery....especially if there is still cancer present.

susaloh

Hi Ladybug,

the word "bulging breast" really describes what mine was like at diagnosis. And yes, I had radiation after surgery - I am sorry to hear that you don´t have that option. And with the Arimidex this is puzzling. Has anybody told you why the aromatase inhibitor is not working for you? Lobular seems to be slow growing and reacting very well to hormone deprivation. I understand that you can´t take Tamoxifen. Did they measure the strength of your ER and PR receptors?

You might very well have a complete remission of the cancer thanks to chemo. Why shouldn´t you be lucky!! Please get a second opinion about your options to to antihormonal therapy.I wish you all the best!

ladybug728

The clinical research nurses and the oncologist are both very puzzled about my apparent lack of response to Arimidex.  They did ask for a number of blood samples for further study back in August, but I have heard nothing more.  As far as I know no studies have been done of the strength of my ER and PR receptors, but I would imagine that being postmenopausal, that this is less of a factor than it might have been in your case.  It certainly is perplexing that this happened at all.

hope2

Hi ladies,

i am not usually on this forum as mine started in the ducts, the doctor measured ny lump with a ruler when she was examining me and rang the breast clinic straight away, this was on my fourth visit to the doctor about the two lumps i had, they thought they were hormonal cysts that would dissappear on there own. i had been at the breast clinic in Jan 08 with the first one but it went into hiding came back a few days later and they thought it was just dense breasts. (had just turned 34 at the time). the lumps were being caused by the blockages i think.

anyway when i visited the breast clinic in march 2009 i knew something was up by the reaction of the registrar at the breast clinic, he said straight away i will have to get the head specialist to look at this. i now know that is because they thought it was inflammatory breast cancer as i had an awful infection and an abcess the size of an orange on my Acup left breast. by god was the mammogram painful on that breast, but the ultrasound showed in conclusive, they did a core biopsy two weeks later and the rest is history.

i got the results the 30th of April and had a radical mascetomy on the 11th of may, the dr had measured 10cm x 5cm size for the big lump, but the scans showed just over 6cm for the big one and 2cm for the other one, the scans showed enlarged nodes under my left arm and shoulder, they removed 22 in total and the pathology report when it cam back showed the two lumps to be the same cancer, just over 8cm tumour that had grown along the chest wall, it was infiltrating ductal carcinoma, clear margins present but too small to measure at the chest wall but they could not believe that my nodes were clear, i had a grade 3 cancer that was on the move and trible negative. they originally thought i was stage 3 grade three but i now think that i was stage ii(b).

i did the chemo tc x4 and rads 33 (as modified radical mascetomy) still on avastin until next june but cancer free and back working full time and hair growing back. so large tumours sometimes can be node negative. Ladybug best of luck.

ssjemom

It's been awhile since your post but if you're still on, quick question...what was your Ki-67? I'm 43 with 8cm ILC per MRI...dxed 1/14/11. US showed 1.1cm, totally off.  ER/PR +, Her2 Neu-neg, Ki67-50%. Waiting for PET CT scan then surgery? or chemo prior to surg? Surgeon doesnt do pre mast SNB. Waiting to hear from oncologist. I'm a bummed mom of 4 small children... 

javert2

Ladybug...it's been a while since your post but I had to chime in. I was DX Feb. 2010 and underwent mastectomy last April. My tumor was 17 cm! I also first presented with an abnormal shaped mass @12 o'clock, right breast, and inverted nipple. I don't know how a tumor that size could "hide" but I had really large breasts.

ssjemom....sorry to hear you're joining our group but this board is the best place for information. Let me know if there's any way I can help. Don't lose heart. I promise you can beat this! ((Hugs))

geocachelinda

Wow, and I thought my 6.5 was big.  Mine has spread however into the nodes..    Still waiting to find out about chemo etc..

Pegs

I had a tumor 5.8 with negative lymph nodes, hope thats some comfort to you.   my mamogram also showed nothing.  it was the ultrasound that showed something but they were'nt sure what.  had biopsy and mri and those results said it was at least 3 cm.  what scared me into getting a bilateral was the at least 3cm.  as it turned out it was 3 different tumors all connected amounting to 5.8cm.  i was a small breasted women so 5.8 was pretty big for me.  radiation doctor told me if I had waited much longer it would have gone into my lymph nodes, i was very lucky.  i don't know how much luck played into it. 

Robyn_S

So many large tumours...this is the sneakiest cancer! Mine was showing up on the US as a 2.5cm mass and not at all on the mammogram apart from architectual distortion - they thought was fibrosis. I had an unhurried lumpectomy 10 days later and took out a 8.6cm tumour with unclear margins. I am just hoping that the nodes will be negative now...and from some of these posts that is a hope! Mine is a grade 1 as well so I hope it has been really slow! The bone scan was clear! The CT results will be next week...hoping for good news from now on!

Elizabeth1959

I wanted to respond to this thread.  I have IDC but had a 16 cm tumor with 1/17 positive lymph nodes.  Bonde scan, and CT chest, abd pelvis negative. 

I had mammograms in 2007 and 2008 as well as 2010.  In hindsite, the tumor is visible.  My tumor is highly E+ and P+ so I'm hoping AI's will do there magic and keep me disease free. My rad onc with over 35 years experience has never seen a situation like mine. When you read about prognosis, large tumor size is mentioned as a risk factor independent of lymph node involvement.  Intuitively, one lymph node with such a large tumor, grade 2 ,KI 67 <10 would suggest a more indolent tumor and hopefully will not metastasize.  Of course, I worry constantly.

I would love to hear from long term survivors with large tumors.

Katarina

Hello Ladies, I had a bilateral mastectomy 4/11/2011. Tumor was first 5cm (at time of diagnosis) then 8cm by Surgeon after looking at MRI results on 4/5/2011.  The post mastectomy pathologist report stated 12cm. It was my entire right breast. The tumor doesn't bother me size or otherwise, it's staging, Onco-type test, CT and PET scans I'm more interested in. I also had 3 positive nodes and my KI 67 was 20%. I'm betting when I get the pathology report tomorrow I could find grade II or III, and maybe even weak margins, but I don't want to find pleomorphic type. I'm a fighter and ready to fight hard and aggressively so if my treatment includes Chemo / Radiation / EP anti hormone therapy and the Works!! I'll go for it all. 

 Thank you for sharing your stories about ILC, very helpful and comforting. I too would love to hear stories from long term survivors with large tumors and node involvement. ILC has a better survival rate than IDC however if it's pleomorphic or stage IV this finding is irrelevant.