So many lymph nodes...struggling..

Hillside · January 2012

Hi, well April 2011 left breast ILC found, mastectomy and node clearance, all 24 nodes positive with some ECE...MRI scan then found a smaller ILC in right breast. Proceded to chemo for 18 weeks which blasted the right breast tumor to bits but had second mastectomy anyway in Septmber, no lymph nodes affected that side thankfully and clear margins. So Drs are not worried about the right side at all but they do keep saying that I am at high risk because of the high number of positive nodes on the left. Eek. Had rt to the left side through November. Still very fatiqued from all of the treatment. Now on Arimidex, joints feel very creaky and that a can of oil would come in handy, but I am determined to stick with the plan as I see these tablets as a lifeline.

So my worry is about those 24/24 nodes positive to the left side. On good days I tell myself that it is all gone and to get over myself. On worry days I spin around in a blue funk trying to assess my chances moving forwards.

Has anyone else had a similar experience or does anyone have a view on the reccurance chances when lots of nodes were involved? I am struggling to get my head around this, some long term high node involvement at get go survivor stores woud be great to hear.

Thanks for your thoughts everyone. Hey ho.

ma111 · January 2012

http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9319238

http://www.cancer.gov/cancertopics/types/breast

http://www.nlm.nih.gov/medlineplus/

Here are a few sites you may want to research. I would also suggest for you to consider a clinical trail. I think that with that many nodes your staging might be different.

Momine · January 2012

My highly unscientific conclusion is that it is all a crap shoot. My SIL had more lymph nodes than you involved and she is still spreading evil in her wake 15 years later. Others get nasty mets after relatively "minor" bouts with cancer.

My own cancer was advanced, there was not a complete response to chemo and there was lymph invlovement. Like you, I am going through all the treatment they have to throw at it, and beyond that I will try to take good care of myself. But other than that, there isn't anything else to do but hope for the best and make the most of whatever we get. Which, of course, is always the case, but when you are seemingly healthy and fit, you tend not to think about it much.

ductal · January 2012

Oh, lady, I really feel for you. Or should I say I am you?:) 7/09 I had surgery/right mastectomy, removed lump and also found 13 plus size tumor inside my armpit, 30 of 31 nodes positive. ILC, of course. At least 25 mammos over 10 plus years missed it. They had to cut muscles and remove entire armpit. Lots of crap since then. But I am still here over 2 1/2 years later, so no complainta from me. I don't miss my breast, I miss my armpit:) There will most likely be more to come, because it has never ended yet, it is always something. Live today so that you dont miss it while you are worried about tomorrow. There is a thread on here about long term survivors that might give you some calm. Peace. I am 3b and was told to pray for a miracle. Maybe I got one.

Hillside · January 2012

Dear everyone, thanks so much for your advice and thoughts. really appreciated. xx

Ihopeg · January 2012

Hi Hillside,

I am 5 years out of ILC multi focal diagnosis with 19/20 lymph nodes involved. It was such a shock that so many were involved, and that it was ILC. The biopsies that I had only said IDC, but they found another tumor in the path report that was ILC. I only had a single mastectomy because they didnt know it was ILC, which recurs in the other breast more often than IDC. I am doing fine. Had chemo, rads, ooph and have been on femara for 4 1/2 years. You can do this!!~!!!

MrsMom2 · January 2012

Hello, its good to hear ILC success. what chemo drugs did you have? I have heard that chemo is pretty ineffective for ILC?

thanks

Gitane · January 2012

Hillside, I don't know if I'm a success story; I guess it depends on how you look at things. I'm still alive though, with no relapse (that I know of). When I was diagnosed with pleomorphic ILC, a "multitude" of tumors spread over 8 cm of the breast... well, it wasn't easy. I thought I would not be here this long. However, I was wrong. Hold on to hope. My pathologist told me there is no way to know how any individual patient will do. The science just isn't there, yet. Hugs, G.

MrsMom2, I had AC x 6. I had 4 rounds of chemo before surgery so I know it was very effective. Both MRI and pathology showed it worked well on my tumors. I had 2 rounds of AC after surgery because there was some residual tumor and the AC chemo still worked (according to chemo sensitivity testing on the residual tumor cells).

Momine · January 2012

MrsMom, I had FEC before surgery (BMX) for ILC and the tumor went from somewhere above 5cm to 1cm by a few milimeters by the time I had surgery. It was not a complete response to the chemo, but a very good one. I then had taxotere after the surgery. This is being followed with rads (I am in the middle of that).

MrsMom2 · January 2012

Thankyou for everyone who responds here. I will do my best as well to visit and respond.

So many lymph nodes...struggling..

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