Would like to hear from any Er-, Pr-. with lymph nodes involved?

KitCat · 10-06-2010, 04:44 PM

I was wondering if any of you gals ever got your feeling back in the arm? Also I would like to hear from some of you who had positive nodes. I had one big one and it scares me. Any input would help. Thanks

wlproctor · 10-06-2010, 04:57 PM

It's been almost 18 months since my surgery. I've got about 75- 80% of the feeling back in my upper arm. underneath the armpit is completely numb though. I can pinch it and not feel a thing.

chicagoetc · 10-06-2010, 05:30 PM

It took a while...but either I got accustomed to it or it got better. Probably better. A weird side effect was that I could rub my arm (the underside part just next to my underarm)...and I would feel it on the top of my arm! Even that has changed. The harder part in the long run was probably the radiation. The radiation just made me tired at the time. For the long haul I think it may have caused some problems (minor with respect to everything else).

One out of 16 is probably not bad. On the other hand, I'm not that sure that the counting helps.

Why so scared? [Just wondering what is scaring you most.]

Melanie

joletta · 10-06-2010, 05:52 PM

Hi,
Unfortnately we all have to join this club. i am pretty new here myself. The women here are extremely helpful. We all can easily relate to one another. You can see my signature below.
joletta

KitCat · 10-06-2010, 05:54 PM

Thanks for replying Melanie,

The whole Er-, Pr-, Her 2 with lymph node scares me. Breast cancer is scary period. Ever since I was DX... everything I look up points to the worst prognosis etc.. blah, blah, blah...STATS... I don;t like them. i believe thay are all pretty outdated as well, since Hercepton. We are all individuals . I have finished chemo and am now starting radiation and continuing on Hercepton for a year. I think it is great to find a site like this where others have experienced the same as myself and have moved on . Recurrance and all the other things that go along scare me. I am positive and feel like I am in the best hands. I am slowly learning that we can't worry about tomorrow. Have to live each day and be positive. I truly feel that Hercepton is a wonder drug and has changed the outlook on our diagnosis. I do feel abit back in my arm, in some spots. Thge anxiety of waiting for tests and the follow up I must learn to deal with.. we all go through it. Thanks for your support. Any tips for radiation? Any tips on how to stop thinking of BC??? Thanks xo

Debbie L. · 10-06-2010, 06:01 PM

Hi KitCat,

Big node freaked me out, too. But that was nearly 10 years ago (and I'm NED without recurrence).

My largest lymph node was 6cm and was the reason we noticed the breast cancer. I had 4 other big positive ones. You can see other details (like no Herceptin) in my signature. Being a control freak (recovering), I tried to do research on this (size of lymph nodes) and basically what I found out was exactly what my community-practice onc had told me: "the significance, if any, of the size of an affected lymph node is not known".

Keep talking, about what scares you. It might still scare you when we're done talking, but at least you'll know you're in good company.

Debbie Laxague

KitCat · 10-06-2010, 06:19 PM

Thank-you Joletta and Debbie. Just hearing from you and your stories and knowing that we all know what eachother is going through really helps! We are not alone!So glad I joined and have met you wonderful ladies. My lymph node was 2cm with extracapsular extension. The doc says the size is not relevant and its'gone....... but it still scares me!! My onc team is very reassuring, but still.... it sucks!!!I feel better now sharing my story. I really never knew how much inner strength I had until this horrific disease, along with encouragement and knowledge , I am moving forward... the scare and worry is still lurking in my head( always) Will it ever go away? They say with time it gets better.

KitCat · 10-06-2010, 06:27 PM

Congrats on your 10 years NED Debbie!!! That is great and gives us all such hope! xo Thank-you for your input!

tfabre · 10-06-2010, 06:51 PM

KitKat,

You will find, just as I have, that these survivors are the best! At first I thought there was no hope after looking at a study, and then a friend sent me this site...it changed my outlook completely! We all have our "scarey" moments, but I decided early on that my life could not revolve around the "what ifs" of BC, and it was not going to ruin my life, and those precious little moments with my family and friends. I truly believe that God has a plan for us when we are born, and we have to make the most of everyday. I find my joy in helping others.

Out of 15 nodes, I had only 1 that was positive, but 6 were very large and looked "suspicious". My last chemo will be on 10/14, then I will begin rads x 35, Herceptin will decrease from weekly to every 3 weeks at that time.

Just keep reading these threads, living and loving life!!! Keep us updated

chicagoetc · 10-06-2010, 06:55 PM

KitCat,

Life is a gift. None of us knows what is ahead. So live today. Or do what you need to do to get through today. Lots of things in life are scary. And it's pretty normal to think the worst of everything that comes around. I suppose eventually it becomes less the center of focus. But I also think probably there is no forgetting. There are no guarantees. But that is true for everyone.

There are a lot who have had lymph nodes greater than 2cm. It sounds like you are in good hands...and getting the best treatment (we're pretty similar if you look at the signatures). And, yes, it sucks.

Be good to yourself. Take it easy. As some would say, play the "C" card frequently (i.e. you are about you now for a while, you don't have to entertain others, even if they think they are helping...what you need is what you need).

Melanie

Joanna J · 10-06-2010, 07:29 PM

hey there chicago I read your reply to Kit cat what you said is very thorough,like yourcomment Joanna J

Joanna J · 10-06-2010, 07:35 PM

Chicago,I have a friend w/the same diagnosis and she is 5 yrs NED,the cancer was in her lymph nodes too,she is doing super,she does have lymphedema,but aside from that Great!

tfabre · 10-06-2010, 08:00 PM

Did any of you have trouble with shortness of breath with exercize or distance walking while on chemo and Herceptin?

Colleens_Husband · 10-06-2010, 08:05 PM

Colleen had three out of eighteen lymph nodes with cancer. She has been NED for two years now and hopefully we are looking at cancer in the rear view mirror.

When she had her surgery the surgeon told me he thought all eighteen lymph nodes were several times larger than they should be and that he said Colleen had a gravely serious cancer problem. It turned out that there was a slight infection in the surgery site and the lymph nodes were simply doing what they were supposed to do. It was pretty scary when the surgeon suggested I should put all of Colleen's affairs in order.

Oh well, I guess I was happier that he was wrong than I was mad that he was wrong.

vlcarr · 10-06-2010, 08:28 PM

I celebrated my first year of being cancer free on 09/25/10. I still have numbness in my arm and I'm being treated for lymphedema. After my last herceptin I was really scared but I find I don't think about recurrence as often now. As everyone has said, you have to live your life.

My signature will give you all the details. We are all in this together

Debbie L. · 10-06-2010, 08:30 PM

Toni asked: Did any of you have trouble with shortness of breath with exercize or distance walking while on chemo and Herceptin?

Toni, I don't know how to take your question to a new thread, but maybe a moderator will do that for us?

The answer is no. I did not have trouble with shortness of breath during chemo but I did have trouble with weakness that I called jelly-muscles. I was a hiker (long story about AI's, relating to the "was" part of that statement), and during A/C, it seemed like my thighs would give out before I could exert myself enough to get short of breath. I think it's different for each of us, and chemo definitely weakens the body (and of course, we hope, the cancer).

How are your MUGAs or ECHOs? What does your onc say?

Debbie Laxague

tfabre · 10-06-2010, 08:43 PM

Thanks Debbie. I will take it to a new thread.

Vicky, Congrats on your year!!!!!!!

KitCat · 10-07-2010, 06:43 AM

Thanks for your input Toni. Joanna, you are so right.... Chicago... your words are so true, thank-you I needed that! great words to live by. Congrats on your year Vicky! Also congrats to Colleen and her husband! Positive thinking and moving forward is what this is all about! What a great palce to let out you fears and voice opinions and give encouragement! I wish I wasn't here, but with all of you, being here it is becoming easier! We are all in this together. A rough chapter in our lives......there are many chapters ahead..... to live... without worrying, but living and enjoying. Thanks all xo