surgery then chemo with large tumor

beth1965

Hi- I was just wondering how many ILC ladies had surgery first that had large tumors.

When i was diagnosed this year i was not given any other options than surgery first (had BMX within 2 weeks of DX) I at the time of DX new so little about breast cancer

My tumor was 9.2 cm and had become aggressive and growing fast all of a sudden-thats how i found it. Like many other ILC ladies mine did not show up on mammo or US  I had 17 positive nodes also with 2 with tumors 1cm and 2 cm leaking cancer.

I am always reading about woman with large tumors getting chemo first i am just trying to understand if there are why the treatments are different sometimes.

Or if you had chemo first why they suggested it.

When i asked my surgeon about this she said chemo first was not what i needed i needed surgery right away then chemo then rads then tamoxifen

kestrelgurl

I had surgery first followed by radiation. No chemo, as my Oncotype score was 18. I was never given the option of doing anything but getting right to surgery. My tumor was over 6cm and very close to the chest wall.I have been on Tamoxifen since Jan 1.

I also had clear mammos and ultrasounds right before my multicentric tumor (in all 4 quadrants) was removed. And, yes, it did seem to come out of nowhere.

There are so many treatment variations that you can make yourself crazy wondering if you are doing the right thing. If you trust your team, best to trust the treatment.

KatiKay

Beth, I had a large tumor like you did and the surgeon wanted to do surgery first and then chemo and radiation, then hormonal therapy.  It was all so hurried and emotional that I didn't have time to research and didn't know about this website.  I did get a second opinion by an oncologist and was told then that chemo doesn't  respond well to lobular bc many times so it may not shrink it.  Thiat was nine years ago so they may do things differently now.  God bless.

mary625

Beth--Perhaps since you are in Canada, the standards of care are different. Here in the U.S., I was told that there is no evidence and they have not been able to prove that chemo first is better than surgery first. It is only an assumption. However, they believe they can monitor the progress of chemo on the tumor during neoadjuvant, so that seemed like a good idea to me. So I guess it's not really standard of care here perhaps, but it's done. I had it at a major cancer research center, supported by an even more major center's second opinion.

Gitane

My understanding is that studies have shown that chemo pre or post surgery does not affect prognosis.  Chemo may be given first to women with large tumors to shrink the tumor before surgery and thus be able to get a better surgical result sometimes.  For example: lumpectomy instead of mast, or cleaner margins with mast.  The advantage to having chemo first is knowing if it works.  The disadvantage is not knowing for sure the pathological (under the microscope) size of your tumor(s) or the absolute number of positive nodes you had pre-chemo. 

Maggs09

Hi Beth, I'm also from Ontario and I was dx in May, although all my tests, including needle biopsy were negative. I felt large lump and insisted on removing it. Dr did lumpectomy but left a lot of cancer behind! So I ended up having another surgery in Toronto to remove breast on Jun 27th along with bowel resection as I found early stage another primary cancer in my colon. This time everything was removed with lots of nodes affected by BC. Colon is fine, doesn't need any treatment.

I just started dose dense chemo on Aug 1st. (AC x 4 and the Paclitaxol x4). So far doing great! Recovery from 7.5 hr surgery went very well, I was happy to start only 4 weeks after. Once this is over I'm having prophylactic mastectomy possibly with reconstruction. With ILB risk of recurrence increases with each year by 1% if breasts are left... this is what my onc told me. So I guess it is fine to have surgery first especially if tumor is well isolated and fully operable. The only thing is that with no cancer left behind we don't know if chemo works well on those invisible cancer cells that could have escaped ... Although using chemo drugs that have a good success history there is no reason to believe otherwise.

Good luck! Please, msg me if you have any questions.

melmcbee

My tumor wasnt that large. Mri showed it at 5.6cm. It was actually 2.9 with 2 other smaller tumors. I was told chemo wasnt offered first before surgery because it was invasive lobular which isnt that sensitive to chemo so they did surgery first

cj81842

I had chemo (Taxatere & Cytoxan) first, mastectomy, then 30 radiation treatments with severe burns/blisters. Last radiation treatment the last of March. During surgery on January 12th, they were able to remove 98% of the cancer but could not get clear margins. My tumor was against my chest wall and had already invaded the muscle. Was your surgery successful in getting clear margins? I started Armidex in April but after a month, was changed to Tamoxifen. For me, the sides effects are the same with both drugs. The hot flashes have become unbearable at times becoming more like body sweats 24/7 and I end up wet from head to toe, can't sleep without medication to help me sleep. They tell me how important it is for me to take this but I don't know if I will. Right now, I would love to feel halfway - normal whatever that is. The aches/pains in the joints and muscles aren't getting any better and about a month ago, they gave me a pain patch to help with the SE of Tamoxifen...just can't win. The other day I got down in the floor to get something under the bed and I could not physically get up. I am far from being young but this has never happened to me before...my legs have always been strong. I am trying to be positive but each day, with these horrible symptoms, it's so hard...

cj81842

I had chemo (Taxatere & Cytoxan) first, mastectomy, then 30 radiation treatments with severe burns/blisters. Last radiation treatment the last of March. During surgery on January 12th, they were able to remove 98% of the cancer but could not get clear margins. My tumor was against my chest wall and had already invaded the muscle. Was your surgery successful in getting clear margins? I started Armidex in April but after a month, was changed to Tamoxifen. For me, the sides effects are the same with both drugs. The hot flashes have become unbearable at times becoming more like body sweats 24/7 and I end up wet from head to toe, can't sleep without medication to help me sleep. They tell me how important it is for me to take this but I don't know if I will. Right now, I would love to feel halfway - normal whatever that is. The aches/pains in the joints and muscles aren't getting any better and about a month ago, they gave me a pain patch to help with the SE of Tamoxifen...just can't win. The other day I got down in the floor to get something under the bed and I could not physically get up. I am far from being young but this has never happened to me before...my legs have always been strong. I am trying to be positive but each day, with these horrible symptoms, it's so hard...

ciabatta

I had a lumpectomy last week for what we thought was small but was found to be a 6.7 cm or larger mixed ILC and IDC. Mastectomy to follow, but Drs said neo- adjunct chemo to shrink pre surgery in my case would have been to have a better cosmetic outcome only. So I feel it should have been done if only they knew but they say doesn't matter. I just wish they had done an MRI first so it could have all been removed the 1st surgery.   

CherylinOhio

Hi all.  I had a 4 or 4.5 cm in RB. Did surgery (mx) and that was supposed to be all but found nodes were positive so did chemo and rads.  that was 2011 this year I had 2 recon surgeries.  I don't know if there would have been different treatment paths had BS known about nodes?

Pegs

I had bmx first , MRI was unclear about size, it read at least 3cm, thats the part that got to me the most, the "at least", as it turned out it was 5.8 cm, no nodes involved, then chemo and rads.  I believe chemo was after surgery because they weren't quite sure how big it really was.

GolferGirly

I had 7.1cm tumor, L mastectomy first, then chemo, currently in radiation and taking armitex. My cancer is low grade. ILC cancer is slow growing, but I wonder when tumors are large, slow growing or not, they've been there long enough to get this large so ?. My understanding of one reason to do chemo first is to shrink tumor to prepare for easier tumor removal. I also understand that ILC rarely shows up on mammos and sometimes not on ultra sounds so I deduce, they're already large by the time they become palpable.


MY STORY: I first noticed breast itching in Jan '12. Had first doctor appt in March '12. My general practitioner Dr prescribed an MRI but the breast diagnostic center refused due to protocol: I needed to receive a "diagnostic" mammogram and ultrasound first--even though my last annual mammogram was in the recent past (Nov '11). The breast center Doctor diagnosed me with multiple benign cysts after quick look at ultrasound screen. He did not ask me what symptoms I had nor did he physically examine me. Had he done so, it would have been obvious a mass was growing.

I mention all this because of the supposed slow growing nature of ILC, less than 2 months later -May '12, I noticed a drastic change in shape and size of lump. This was when I found a new doctor and went to a different breast diagnostic center where they took me seriously.

beth1965

I have read so many similar to my situation here. It sounds like alot of us were given the same treatment. I find many of you have the same story as me as to be undetected or symptoms the same.

I did dose dense chemo AC and Taxol