Lymph Node Positive Survivors
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I am 2.5 years out from my diagnosis, and roughly 2 years out from finishing chemo/having surgery. I had 2 out of 11 nodes positive. I am pretty sure the tumors in my nodes were bigger and growing at a faster rate than what was in my breast. In fact, the positive nodes had extra capsular extension (a fancy term meaning the cancer was also growing on the outside of the lymph node).
If any of you need a story of encouragement and inspiration: One of the ladies in my support group was diagnosed with breast cancer when she was 8 months pregnant. She immediately had a mastectomy and a port placed for chemo. Then she delivered a healthy baby boy 2 weeks later. Her tumor was 9+ cm and 36 out of 38 lymph nodes came back positive. This happened 5 years ago. And I proud to say, my friend is healthy and doing well.
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Opt4Life -thanks, that's excellent to hear. Saw your post also on the triple positive board, too. It's reassuring to read how the prognosis so far has been good.
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Thanks opt4life, one positive node removed. Two months out here :
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Just to add another voice to everyone's here, I was diagnosed in November 1999. At mastectomy I had 17 positive out of 20 lymph nodes removed. I didn't question the need for chemo - 6 cycles of CEF, then 7 weeks of radiation.
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so awesome to hear these stories. Those of us with lotta nodes don't get warm fuzzy feelings for a long life projection. You give us hope. Thank you.
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I have one to add! At my breast cancer support group I met a 33-year survivor of ER+ disease. She was diagnosed at age 33 with a huge tumor that was attached to chest wall. In her words, she had "a LOT of positive nodes."
She had a one sided mastectomy, chemo for a year and rads (and she said - not with those nice new machines!). She took tamoxifen (new at the time) for 5 years.
She was NED until 3 years ago when she had a small, stage 1 ER/PR+ tumor. She had genetic testing which showed she was BRCA+ and had a mastectomy and oopherectomy. She is on arimidex and fit as a fiddle. She said - they wrote me off - I should not be here - but here I am!!!! She said in those days if women were diagnosed they did not talk about it, although she did! So happy to have met her!
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Hi Ladies, I am like a lot of you and just added this to my favorites list, thank you so much for starting this Lottemarine. I was diagnosed on November 18, 2014, hard to believe that 2015 was all about treatments but now it's 2016, going to have my 2nd mammogram done tomorrow (my first 3D) and then another 3 month check up next Friday. Sad thing is, my Oncologist is moving to Missouri and that will be my last visit with him, he was awesome and funny!!
To those of you ladies going through treatment now, I know that it is hard to imagine, but life does go back to "normal"!! 0 -
Thanks for starting this thread. I had a 13cm ILC with 9/12 nodes some with escapsular spread others with micro mets. This was after an MRI which only showed 1 possibly reactive node. I am trying to drop some weight, difficult on my hormone regime, exercise as joint pain allows and try to get on with life without waiting for the other shoe to drop. Since treatment has finished I only see my Oncologust 6 monthly, and this worries me when I go to the dark place. I am told it gets easier the further out from treatment you get - I hope so
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Hi to all,
I am glad to say it has been 5 years since my diagnosis.
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All of you are so beautiful and such an inspiration to those of us on the front end of this journey! God Bless you and Thank you!
Elizabeth
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A little over two years since my DX. I had micro mets in the sentinel node with no other node involvement.
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I was diagnosed in 2008. Er/or positive 1 node with extra capsular extension. (Same size as tumor). Left mastectomy chemo ADC and taxol dose dense. No radiation. See my oncologist once per year and outside of a couple of scares, I'm doing fine
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PS - I really like this thread! Thanks for starting this!
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I had 13/15 nodes. I have added supplements vit d, asprin, kelp, broccoli and mushroomsupplements. Was vegan for a while after Dx. have been exercising off and on more off than on but research shows exercise one of best things to prevent a reoccurrence but i still find it hard to be consistant. I am coming up on 5 years and still worry. Actually I am on bc.org tongight cuz i felt bone pain (hopefully nothing serious) but was researching what bone mets feel like. It always lingers in the back of my mind. we should all have continued healthy and complete recoveries.
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I was 3 yrs out in December. Still doing wonderful. A few aches & pains from what I think is due to Arimidex but will keep swallowing it every day for 5 yrs like I'm supposed to. Love to hear all the encouraging stories of survivorship. Also in reference to an earlier post about HER+ having bigger chances of recurring, I haven't heard or read that. I've read that the biggest risk for reoccurence for HER ++ is in the first 3 yrs. Does anyone else have anything on this?
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What a great thread for us node positive ladies. I try hard not to worry about recurrence. As someone said, either you will or you won't. I am doing everything possible in terms of treatment, praying (believe in the power of it), and thinking positively so that I will be in the later category.
Thanks all who have posted encouragement. Continued peace and blessings to you.
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7 out of 14 nodes, diagnosed Spring 2012..........no chemo, still ok as far as I know, but have a lot of radiotherapy damage.......
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I am curious to know how significant are micromets? I had these in two nodes however was still able to have an Oncotype DX (result 22). My BS told me that before micromets were able to be seen by more advanced testing, women were told their lymph nodes were clear and treatment proceeded accordingly. Some of these lymph nodes have been tested years later and found to have had micromets and the women who had them have been found to live long lives without recurrence. This was very reassuring to me.
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Lily55. I'm so glad you are doing well except for the radiation damage. I had a lumpectomy and micromets so full breast, underarm and collarbone, 5 weeks then 1 week push is recommended. Worried about long lasting side effects. Would you mind sharing what damage you have?
Optimist52. Your post made me feel a little better. Thank you!
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Good question Lottemarine!
The frustrating thing for me is how the little differences can change outcomes more than people talk about. So it's hard to know when you are comparing apples to apples. Even then everyone is different, so one person's experience does not reflect on your own. I've been trying to narrow down the area of people more similar to me to see if I can get a better picture that way, but I still don't think it will really provide answers. (i'm a nerd, I just love data, though)
For example, staging is sometimes done by number of nodes involved. However, my cancer surgeon told me she has seen between 4 and 44 lymph nodes in a person's breast/underarm area. So it would stand to reason that a person with 1/4 nodes involved might be considered more serious than someone with 4/44. So why is that not reflected statistically? And what about Macro vs Micro mets in these lymphs? Also, the prognosis for younger people with cancers TENDS to be less good than when you are older. So, when we look at stats, and age is not mentioned, is the experience of someone who is 65 at diagnosis similar to someone who is 35? I started a thread on the stage 3 forum talking about age because that seems as good as any as a place to start trying to sort out some of my own questions.
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McClure. It all is so mind boggling. That's why they can't find a cure I think. There is no real if this then that to go on. I look in the stage IV forum since I may be one if I have a lung met and see folks who started out with "less" invasive, stages, 0 node come back posting stage IV now. They appear to have done the recommended txs too. I have no idea if I'm considered older or younger in the big scope of it at 50 y/o.
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@Artista928 Totally! That's part of why I wasn't active during treatment on forums because it just seemed like ANYTHING was possible, so talking about it wasn't that helpful. now that I'm just in the "wait and see" mode again, I have time to fruitlessly obsess over whether or not I can find more information to form some kind of a framework for acceptance, if that makes sense. It bothers me more not knowing my odds than if I could say it's 10% or something. That said, I think we all just have to live with uncertainty, which is all anyone ever has anyway. We just fool ourselves into believing that we have a certain expected life span. We could all live to one hundred or die tomorrow, and the only thing that really matters is what we choose to do with the time we are given. How will we make a positive difference?
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THe other thing to consider is that no one has the same number of nodes either and those removed are only those the surgeon can find.......if we all had all of them removed we would all have guaranteed lymphoedema.....
I also don´t subscribe to nodes being a risk factor.........to me my nodes did their job, to act as bouncer to the rest of me!! Mine was the size of a small plum but still only had 7 out of 14 nodes with cáncer in..........
My focus is on keeping the general body environment as healthy as posible, diet, exercise, try to cut back on hidden sugar (I never used sugar on its own anyway), reduced stress, going to start meditating........strengthening my NKC´s
Every now and then, like at the moment, when I get clear symptoms of some other risk factor I get really rattled..........all we can do is live right in the now......I fail at making the most of every day sometimes
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Diagnosed in June 2007 with HER2+++ Invasive Ductal Carcinoma with a huge lump in my armpit and another in my breast. The breast lump was 5cm and there was another underneath it. Lump in armpit felt like the size of an egg yolk and continued to grow from the moment I found it until I started treatment in middle of July. I was told I had several positive lymph nodes - but never asked exactly how many. After chemo I had my operation and they removed the whole breast and lymph nodes right down to the bone and got 7mm clearance. Fast forward to now and I still go for six month check ups and the consultant said to me, for the first time ever, "I'm really pleased with you." That meant so much as he is extremely cautious about saying anything just in case. Hope this helps.
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RebzAmy! Thanks for your post!!!!! Did you take any hormonal drugs, like Tamoxifen, or anything after your initial treatment?
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Amy I'm curious, did you get lymphedema from them cutting "down to the bone"?
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Hi all
17 out of 32, macromets, matted, extra nodal, grade 3, +3cm some! 3 years after surgery,
Regards
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ps refused radiation
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Diagnosis age 42 1/13 : 17 out of 32, extra nodal, matted, some +3cm! grade 3, stage 3c, er/pr+ , her2 1+, lumpectomy 3.2 cm just 3 years ago, had no radiation!!
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hi
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