Lymph Nodes - Do they matter?

When it comes to LymphEdema developing from node removal the number removed and the time since both matter but do not matter.

With a larger number removed can mean a larger possibility/likelihood of it developing. However, it is possible for LE to develope if only 1 node is removed. It is also possible for LE to develope just from having surgery with no nodes removed (or a traumatic injury).

Time also can vary greatly - some that develope LE do so relatively soon (it was 9 weeks post UMX for me) but for some it can develope many years later - or any time inbetween. We are each unique.

I am new. I just joined tonight. My hands are trembling as I type, reading all I am reading on this and other threads. I am 58 years old. I am diagnosed with Stage 3A Invasive Lobular Carcinoma, grade 2/3, Progesterone and Estrogen positive, Her2 Equivocal at both tests, which I am told means a negative. I am going to Mayo for a 2nd opinion on the 30th. Here at home, the doctors recommend 8 rounds of chemo, then mastectomy. While only one breast is involved, both are recommended for removal. My CTs and bone scan are all clear. Obviously, I am terrified. My husband tries to be funny. He is an ex coach and tells me just to "push through it". I am sure he is scared too. I am totally overwhelmed. I have multiple lumps. One is huge.....7.5 cm. I am fit, active, and in very good shape.........or was. Now what?

Oh 2mulligans, I am sorry you have to be here!! But you have come to the right place!! The wisdom and practical tips from women down in the trenches has been incredible!! I have read 1000's of posts on every topic that is even remotely related to my issues. So very helpful and encouraging! I think you are wise to get a second opinion, especially if you live in a less urban/progressive area like I do. My husband was a coach also when we were a young married couple…he also tries to be funny…emphasis on "tries"! But I will say that he has been very frightened and has been so, so kind and supportive. Perhaps you could have a little talk and tell him about ways you would love to be supported - there is a time and place for humor in all this (for sure!) but it takes a good bit of finesse to discern exactly when that is LOL. Mostly we just need quiet support and hand-holding. And gosh, this is new territory for them too.

I was/am very fit and active, ate right, etc and still…I am starting to think, as I read on here, that it is just a "crap shoot" as far that goes.

Please know I am saying a prayer for you- for healing, wisdom, strength, and even joy in the midst of this. You are not alone!!

Blessings, Freeland

Anneflorida - did you have any arm pain from the lymph node surgery? I am to have Axillary and Lumpectomy in two weeks. I am worried about soreness, stiffness, pain!

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Lisa, very good to know. Thanks for your reply.

I will be out 11 years next month. I am still on an anti-hormonal. I started out with tamoxifen for one year, then switched to arimidex for four years and have been on femara ever since. My onc and I have this discussion every visit and he always leaves it up to me to stay on it or stop. I had lobular cancer which is very responsive to hormonal treatments so for now I don't plan on stopping it.

I've been on Femara six months and my hands and knees hurt too!

Mary625 - I see you had Axillary Node surgery. That's what I have. How did that go for you? Could Subpectoral nodes be level III of the Axillary group? Maybe that area was radiated

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Mary625, the surgical report from my surgery said the BS "swept" the pectoral muscle area with her fingers, to feel for abnormalities in the nodes there. Those would be the ones, that when they used to take out the pectoral muscle too, would lend itself to disfigurement. I guess they feel that radiation will help with that. My report is very similar to tectonics. I had the p53 mutation and a high KI67. Tech, no one told me that those things would make it anymore resistant to therapy modalities! I had hercepyin, altho I was equivocal by both tests.

Also, there was some question as to whether my tumor was draining to the mediastinal nodes, since the location of the small tumor was in the upper inner quadrant of my breast. My nodes were also much much, worse than the tumor itself, bursting and matted with ca. I just HAD to be special....

Happy November everyone.

My first abnormal mammogram was in June. I went thru more mammograms, ultrasounds,mri's I also went thru genetic testing and two core biopsies and an fna of a node.

I work in healthcare and it seemed to take forever until I had surgery at the end of September. I even tried to hurry things up a bit.

It was frustrating because I had a low ax dissection and 7/7 modes were positive. I keep thinking if they were a little faster maybe I would have had fewer positive nodes.

I know you can't live with "What if's" but it does cross my mind time to time.

Interesting about recurrence. I've been told that my risk drops (but does not disappear) after just three years. I'm also Her2+ and have ductal though. From the boards, I haven't observed many later on Her2 recurrences, even among those also ER+. Coming up on two years..