Treatment Options/Advice

Kim

our situations are somewhat similiar.... it surprises me that a 2.1 cm lump would be considered large-- but perhaps you are very small????  Mine was 2.5 and they did a lumpectomy, clear margins, clear nodes--then they did the oncotype-I was in the gray area- so I opted for a short round of chemo, then had radiation and am now on Lupron and femara (I was pre-menopausal).

You cannot get the oncotype until they take out the lump since that is what they test-- so I can see your quandary..... I guess if it were me and I thought they could get good cosmetic results, I would have the lumpectomy then see what the oncotype says--- but your dr. may have some good reasons for suggeting chemo first.  

Oncotype has become standard in many cases of invasive cancer with no nodal involvement which they can discover through the sentinel node biopsy often done at the time of lumpectomy.  The oncotype is really helpful in making treatment decisions--- 

this is a hard one--- I would really ask the dr. what he/she thinks and maybe get a second opinion. chemo is doable, but if you don't have to have it, it would be great to skip it-- you will likely end up with radiation and the hormonals no matter what.... 

keep us posted...

Hi, our stats are very similar.  7 weeks after a single mastectomy, I am back 100%.

First, your doctor will probably order a sentinel node biopsy.  This will determine whether or not your lymph nodes are clear of cancer.  Hopefully they are. 

Then,after your surgery, a sample of the tissue can be sent to a lab in California for the test they call Oncotype DX. (There is a website, you can find out more there). It used to be that you could ask to get tested if you were node-negative ( that means your lymph nodes are clear of cancer).  Now, the lab will also test people with up to 3 positive nodes.   The test will determine the rate of recurrence for your particular tumour. This is the recurrent score.  It will also tell you whether or not chemo therapy will benefit your treatment.  It is a very useful tool to have.

To my great relief, I had a low recurrent score, and I also found out that chemo was not so beneficial for my cancer.  So both my Singapore surgeon and my Dana Farber Onc agreed to put me on Arimidex for 5 years.

 I hope that your treatment will also be easy and uneventful. Ask questions, we are here to help!

We have similar stats as well. You can read my "story" in my profile, but basically I had lumpectomy with sentinel node biopsy, an Oncotype DX test with a resulting score of 11 so chemo was not thought to be of benefit to me (the impact of the side effects would be greater than the benefit), radiation, and I've been on Tamoxifen since 12/01/08.

I don't believe there is a downside to the Oncotype DX testing as far as insurance, etc. If you think about it, they should WANT you to have the test, because if your score suggests little benefit from chemo, they won't have to pay for chemo. Hormone receptor positive ILC tumors often are thought to respond better to anti-hormonals (like Tamoxifen), rather than chemo, though there are exceptions to this.

Can't think of any other tests that you can do at this point - the MRI is usually a good predictor of ILC size, so it's good that you've had that. I suppose the size of your projected lumpectomy is due to the apparent second smaller tumor, although I'm not sure I get why you're being offered neoadjuvant chemo. It was never even mentioned to me.

I'm a less is more girl, personally, so I'd choose surgery first. Then you can get the information about your nodes and more detail about the tumor(s) and the Oncotype DX test to help plan your next steps. If it's determined at that point that chemo might benefit you, well, there you go. But if you don't need it, you can move on to the next phase (probably radiation).

Different oncologists and surgeons can have totally different ideas about how to treat tumors of this size - there's "standard of care," but no specific protocol, and ILC isn't as common so that adds to the fun. Sorry you had to join us, but glad that you found BC.org. I have found it to be very helpful. It sounds like you're doing a thorough job with research, and once you have the tumor out and the rest of your plan falls into place, things get easier. I always recommend Dr. Susan Love's Breast Book, since it goes into detailed pros and cons about different procedures and treatments. I think they're due for an update, but it's still useful.

Good luck!

Coleen

My doctor said that ILC grows slowly it also will shrink slowly, in my case she didn't recommend surgery first, she said it would't make much difference, although mine was large 11cc. I have a friend with ILC and they chemo first and she said it shrank it so they couldn't even tell there was a tumor, except for the tumor makers. My question about that is how do they do surgery if they can't even see  the tumor, the markers don't surround it.

Some decisions are easier to make than others.  I had two oncs tell me that neoadjuvant was the best course for me to take so they could potentially shrink the tumor and get better margins at surgery.  Had the surgery last week and now I'm waiting to her the path report at tomorrow's followup with the breast surgeon.

The great thing about neoadjuvant is that they can tell if the chemo works against your type of cancer.  I had scans done during chemo and we saw lots of shrinkage on taxol and moderate on AC. Some women see little to no shrinkage and others get a complete pathological response (no visible tumor).

Yours is a little harder because there are more options.  I agree with Seabee that this calls for a second opinion.  You have the time to do it (the cancer won't grow that fast) and it gives you  peace of mind.  This is a one shot deal.  Once the plan is decided you don't get do-overs.  So it would be good to make sure you have information from two oncs so your decision is firm in your mind.

Kiminfo 

Because your onc has suggested drug therapy prior to surgery I presume you had a biopsy and that the onc must have seen something in the path report to make him think chemo would be effective against your cancer cells if he said it was to shrink the tumour. I agree with someone above who said that chemo is not usually very effective on ILC because it is usually slower growing and fast growing cells are the ones targeted by chemo drugs. The grade score is made up of three factors all getting a 1 2 or 3 score.  Tubule score is how regular the growth pattern of the cancer cells is (3 = very irregular). Nuclear score is how regular the shape of the nucleus of the cells is (3 = very irregular) and mitosis score is how fast the cells are dividing ie how fast the cancer is growing (3 = very fast growing).  Post surgery path report said my tumour was 2cm with LCIS 95% outside the tumour and was grade 2 which was made up of tubule score 3, nuclear score 2 and mitosis score 1.  Mine was also graded Pleomorphic as the cells were of varying shapes and sizes.  So although my cells were VERY abnormal in growth and structure, they weren't fast growing. The onc said chemo was only going to be 1% benefit and also said there would in fact be a negative benefit because of the potential damage to organs from the drugs.  Maybe your grade 2 included a high mitosis score and so chemo could be effective. 

Just a couple of thoughts about lumpectomy vs mastectomy for ILC - after reading many different articles about the difficulty of getting clear margins with lumpectomy because of the 'sneaky' way it grows and the resulting 60% reexcision rate (I wanted to avoid multiple surgeries), the need for rads with lumpectomy (which I didn't want as it can possibly damage heart and lungs) and the 24% chance of occurance in the other breast as opposed to 8% with IDC, I finally decided on a bmx with immediate recon.  After surgery, as my nodes were clear and because chemo would be of little benefit anyway, I went straight onto Femara for 5 years as a precaution because the onc said 'you can never be sure if some of the cells have gone round your body via the lymph or blood system even though it doesn't look like they have'.  My smaller breasted friend who was dx about a month after me with 3cm ILC decided on a lumpectomy and it left quite a dent in her breast.  When the margins weren't clear she was told she had to have a mastectomy as there was just not enough breast tissue to get clear margins from a reexcision. 

It is a hard decision and everyone who has made it is usually happy with their decison and I think that is the key.  It is YOUR body and it is YOUR decision - don't let anyone else make the decison for you or you may not be comfortable with it.  As other ladies have said, you can't put anything back when it has been cut away. If you are willing to accept the possibility of extra surgeries and the fact that you will have to have rads, and can accept that there may be damaging side effects from the chemo to shrink the tumour until it is small enough for lumpectomy to be a less disfiguring operation, the lumpectomy approach might appeal to you.  If however, like me, you just want the 'alien' out of your body as quickly and completely as you can and want to know you have taken the as close to 100% option for making sure you never have to go through all this trauma again, you might consider mastectomy or even a bmx even though your doctors will probably not recommend it. 

Best of luck with your decision

Rae

AnacortesGirl

I am sorry to hear that your path report was not as good as you expected - as someone so eloquently says on their bio - 'this disease sucks'.  I agree that you can't rely on any of the diagnostics to predict an outcome with this disease but I was just offering a possible explaination as to why Kiminfo was offered chemo prior to surgery when it doesn't seem to be a common treatment offered to ILC ladies. Apart from the size of the tumour relative to the size of her breast the other factors ie ER/PR and HER2 status and grade seem to be very like many of us who have gone straight to surgery. 

And talking about post surgery reports, I don't quite understand why a path report would come back with a different grade from the biopsy report.  Mine was graded 1 from biopsy but 2 post surgery.  The nuclear score had increased from 1 to 2 and the pleomorphic tag had been added. I can understand that from biopsy the tumour size would be difficult to assess and could change quite dramatically and that they may miss an area of DCIS/LCIS for example or another tumour lying under or close by the other bigger one but why would the structure and nature of the cells change in that short time between dx and surgery?   Anyone else had that happen? Anyone got a theory on it?

Rae

Seabee

My doctor took 3 biopsy samples - yes, shudder!  Managed to prepare myself for the one she had promised but by the time she had done three I was in shock and shaking and the look on her face that told me I had BC only made things worse.  Not quite sure how I drove home after that.  Of all the bad days I have had, that day was the most traumatising. Even 15 months down the track I still can't think of it without feeling panicked and terrified.

Rae

I just found this forum and want to thank everyone for posting ... although it sometimes reads like advanced calculus.  I have ILC stage 2 HER negative, 3.0 x 2.2 cm with one node (shown on the PET scan).  I have had three treatments (every 3 weeks) of TC and a follow-up mammagram and ultrasound that showed that the node is smaller but the lump is the same size.  I'll see my onco on Friday but I think she said she'd stop chemo if it wasn't working and just go to the surgery.  I told my surgeon to be aggressive, I don't want to go through this again and I'd prefer to avoid radiation if possible.  I had a needle core biopsy ... thought it was going to be a thin needle biopsy.  Yes, it sounds like a nail gun, five biopsies, the sound was hideous but I was very numb and didn't feel anything, thank goodness!  Even so, I'd never want to do it again!  I'm with you!

I'm just 60, what a birthday present huh?  No bc in my family at all, but lots of lumps.  My mom had cervical cancer at 60 and now it appears that the radiation has resulted in another cancer; she's 88 and is opting out of treatment.  I've been sick and tired from the chemo but taking one at a time I'm getting through it.  My heart goes out to you younger gals ...!  Now I'm wondering if I should have done surgery first, but you're right, the decision you make you cannot unmake.  I'll know more on Friday but am leaning towards getting the surgery done now and getting this on its way.  I'd sure like to know the results of the path report sooner than later.