Chemotherapy with ILC: what regimen have you had?

My lobular lesion was not as large as yours but I also had a ductal tumor, not seen until MRI was done. They were in different quadrants so mastectomy was required. Micro mets in the sentinel node bought me complete axillary dissection, lymphedema and the chemo regimen you describe. Four years ago, at Froedtert (are you from Milwaukee?) we called it TC due to the brand names Taxotere/Cytoxan.

I had a 7cm tumour, which they didn't realize til after surgery (it showed up as 2cm on scans) and 12 nodes positive. Both my BS and MO agreed that I had to "have the kitchen sink thrown at me", i.e, very aggressive treatment. This meant

Chemo: 4x AC (doxorubicin (which is also called adriamycin) and cyclophosphamide (cytoxan)

12xTaxol (paciltaxel)

Targeted therapy: 1 year of Herceptin as I am Her+

Radiation: 28 days

I also had a full mastectomy (left breast only) .

That info about chemo increasing your survival rate by 3% was not what I was told. It was much higher, but I don't remember all the stats now.

I would recommend you get a second opinion, if u can.

What the H? There is an unfortunate misconception, even among doctors, that chemo "doesn't work" against lobular. This is simply not the case. The ONLY difference with regard to chemo in IDC vs ILC is that in ILC you are less likely to obtain a "pathological complete response" PCR. Even in IDC, a PCR is a fairly rare thing. However, recent studies show that the survival advantage of chemo is the same in both types of cancer, regardless of the difference in PCR. Also, tell that doc to check out cancer math: http://www.lifemath.net/cancer/breastcancer/therapy/

So, I would get a second opinion ASAP. I had a large tumor and at least 7 nodes. They started with chemo, in my case, 4X FEC, which is nasty, hardcore chemo. The tumor had shrunk to half after the second chemo treatment. After the 4th chemo, we could not find it by touch (but there was still a bit of live cancer left, according to the post-surgery report). Then I had surgery, followed by 4X taxotere. Recent studies show that 12X taxol is better, but the basic approach is the same, taxotere and taxol being different variations of the same chemo agent.

Can you tell I am mad on your behalf?

Hi Aus,

I'd definitely do chemo if I were you. Not sure which regimen would be best so a second opinion is a good idea.

When I was originally diagnosed I had AC, but I notice that nowadays people seem to get Taxol as well.

Do all you can to keep yourself well & get rid of bc- no regrets that way

All the best

kt

Hi Aus, I had lobular too and wasn't offered chemo, however I didn't have any positive nodes. I would be seeking a second opinion if I were you. I have heard from so many people that chemo isn't effective for lobular, there is lots of info on the web stating this. However with positive nodes I think it is a whole new ball game. PS I am from New Zealand and from my extensive reading I believe New Zealand, Australia, Canada and the UK don't seem to do chemo like the Americans do. Don't know why, it's just something I have observed.

Hi,

I started a new thread as I'm questioning my therapy too. All I've been offered is Femara with a double mastectomy after 6 months. I've read that there's some chemo drugs you can add and have better results. It's nice to keep my hair, but much more important to save my life. I'm seeking a second opinion. Having a surgeon married to the CEO of your insurance Co. has to be a horrible, if not deadly conflict of interest. I'm in the high risk pool already from other medical problems. How can they not discuss the least costly ways to provide care? And this discussion is part of any managed care: be it Obamacare here, or National health insurance in other countries. Very scary when it becomes expensive to stay alive.

Hello AusUSA,

I am from Melbourne and had a similar dx to you and had my surgery treatment at the Women's hospital and Royal Melbourne. In 2011 I had 3x FEC and 3 x D, radiation at Peter Mac and am still on Femara 4 years later after a start on Tamoxifen for 12 months. I fully agree with Kyliet that you must contact your breast care nurse to advocate for you and communicate your concerns to your oncologist. I had more contact with the wonderful breast care nurses at the women's than other clinicians and they were brilliant! Addressing treatment concerns and emotional fears they helped every step of the way through treatment and recovery and can't speak highly enough of them.

Good luck ((hugs))

Welcome! I am in Brisbane and had my treatment at a private hospital. I only had isolated tumour cells in two nodes.

I got two opinions (2011) and both doctors said they could not say 100% either way whether my situation required chemotherapy or not, but they were supportive me having it as insurance.

One doctor recommended AC-T and the other TAC. I took the second option as it was a shorter course and I had read it works well for ILC.

You definitely need a second opinion.

Keep in touch.

If you are not comfortable, get a second opinion. Lobular is different than IDC, and unfortunately for us, not quite as well studied, so the recommendations are often whatever would be recommended for IDC. I had a large (5+cm) ILC tumor and 2 positive nodes, removed by mastectomy and node dissection. The current issue [as I understand it] is the ER+/HER2- status - I'm the same status as you. There's a good bit of recent research that ER+/HER2- tumors respond to chemo differently than others. As someone posted, if you are highly ER+, hormone therapy is going to be of greatest benefit, and you will postpone that while doing chemo. Chemo is less certain - as my doctor said - 50/50 chance of effectiveness, unless you are Herceptin positive or triple negative.

However, my Ki-67 is borderline for recurrence, so my oncologist recommended an aggressive approach, and I agreed. I've finished DD A/C and 2 of 4 DD Taxols, but I am now questioning the delay in receiving hormone therapy. If it's what works, shouldn't I be doing that? So there's no easy answer. You're worried you aren't being offered chemo, while I'm worried more effective treatment is being delayed for a possibility ineffective treatment.

Tania I've often wondered why the USA uses chemo more. I am wondering if it's because they can sue over there for medical mal practice. Also maybe they can get more money if they use chemo? We can't do that in New Zealand, how about in Australia? Doesn't make me feel any better though. I am always wondering if I should have had it!!!

Not sure what it's like in New Zealand Fizzdon52 but here in Australia all our chemo treatments are funded under the public system, in other words we don't pay for our treatments, the government does. We have a pretty good health system out here. I'm not sure but if memory serves me, medical treatments in the USA are very expensive and most people have to have medical insurance, maybe that has something to do with it. Racy did you have chemo because you were grade 3?

Hi- I had ILC and opted to have a bi-lateral mastectomy. My tumor was large and had gone into my nipple, so keeping that one was not an option. I chose to do both so I would have to go through the surgery again. There was some pre-cancer happening. As I went into surgery this was where the treatment was supposed to end but they found 14 of 21 nodes to be cancerous. So, chemo and radiation was put on the menu. I have now done 4 treatments of AC and am on 2 of 12 infusions of chemo. Following that is reconstruction and finally, radiation.

So far, chemo is not as bad as I had thought it would be. Fatigue and nausea are the most common SEs. Good Luck in what ever you decide to do. And BREATHE!

Found lump December 2010, in early 2011, I was diagnosed with ilc, about a 7 cm tumor, also diagnosed at the same time with several bone metastases, so stage iv from the start. There was no node involvement. I had neoadjuvant chemo which shrunk the tumor, chemo was six rounds of taxotere and cytoxin spaced three weeks apart. Then had lumpectomy. Then 33 rounds of radiation. Started taking Arimidex and have remained stable, making it four and a half years + since discovering the lump. It's hard to hear that a doctor would say the chemo wouldn't make a difference. My experience is that it does.

Our health insurance paid most of the chemo bill, it was $120,000,(yes one hundred twenty thousand smackeroos) and that was with a discount to the health insurance provider! So, yes, I am cynical enough to believe money factors into decisions to administer chemo. Tho I believe it works. My brother was diagnosed with terminal cancer in the 1970s, had chemo, surgery, radiation and is still around today pestering us (lol). When someone says to him,"oh, you're in remission," he scoffs and says, "remission??...no, cured!!!"

Wow, Momine, I had all that in a private hospital bed in Australia and paid nothing. I did pay something for radiation though.

My brother got really ill in America about 20 years ago and his hospital bill was $80,000.00 which was hard for us Kiwi's to get our heads around as the same treatment over here would have been free. They saved his life though so can't complain and I guess that's what travel insurance is for.