Lymph Node Positive Survivors
Hey all,
Just wondering how many lymph node positive survivors there are out there and how many years out? Also have many of you experienced recurrence during that time? Or if you haven't what have you changed in terms of lifestyle, diet, exercise etc..
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Hi Lottemarine. I am 2/12 years out from diagnosis which included 6/10 positive nodes. No recurrence. I am more conscious of what I eat and drink. Not that I was terrible before diagnosis. Just trying to eat better for my wellbeing. I do exercise every day to some degree, walking, yoga, running, weights but by no means fanatical about the exercise I do, just try to do something each day. 😊
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12 out of 14 pos. nodes. Axillary and sentinel nodes also totally replaced by tumor. 10.5 years well.
Exercise, green tea, turmeric, milk thistle, and lots of prayers.. All's well
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Just added this topic to my favorites list. Lottemarine, thanks for starting it. Throughout my treatment and now as a survivor, my biggest fear is recurrence because of my positive lymph node. I try to stay positive but sometimes all I can think about is "OMG, it got into my nodes" and I'm doomed. Here's hoping for lots of positive stories.
I am trying very hard to eat better and keep active. However, I do find it very difficult to sort through all the nutritional and living chemical free information on this board. One of the most prevalent opinions is that sugar seems to fuel cancer. I'm very interested to hear whether or not those not experiencing recurrences are avoiding certain foods/products, etc.
lkc, do you get your tumeric through foods or a supplement? I've just recently been hearing a lot about turmeric but have never used it in cooking and would probably be better off using a supplement, if available. I'll have to look up milk thistle. LOL, I am new to all this.
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8 positive out of 24 nodes. I am coming up to my 2 years (since the surgery).
Things that I have changed is removed all the meat but chicken from my diet, apples (soo sad, loved apples) milk (not that I drank it a lot before), minimizing the white flour foods. Eating more broccoli, cauliflower, legumes and fish and trying to eat fruits that not on the dirty dozen list.
What I need to do better is exercise more and relax. My stress level is the same as before Dx and one thing my BS told me what to relax more but it seems I can't.
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I had one positive node and my surgery was 9/2/14, so over 15 months cancer free.
I don't avoid any foods (or alcohol), but I am trying to increase veggie consumption and I drink brassica tea every day.
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7 out of 14 nodes, 3.5 years out, no cow dairy, try and eat more veggies and take various immune boosting supplements
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I am 10 year survivor. I had my first bc in 2005 - 3 out of 23 lymph nodes positive. I was 41 and had a 4cm tumour. I was stage 2b, Er/pr+, her2-.
I had a new primary in same breast after 8 years....this time it was Triple Negative. My 2!nd bc was 8mm, stage 1. I am 2 years out of my 2nd diagnosis. I try to eat healthy
and started running 3 months ago 3x a week, I am up to 5km!
I see you are newly diagnosed from your stats. This is definitely a rollercoaster of a journey. Life does get back to "a new normal".
Michele0 -
Lolis, what's bad about the apples?0
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Added to my favorites so I can follow...
I was diagnosed this past Spring and still in the thick of things, even though I'm done with chemo and initial surgery. But so many nodes involved; they ended up finding more positive nodes than expected. So although my cancer has been removed, I still freak out over the nose involvement!
Thankful for all you Survivors posting here and keeping us encouraged
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Thanks everyone for sharing, it's so comforting to hear all your stories and know that you can be just fine in years to come, after this little blip in our lives.
Yeah michele I was diagnosed in sept this year, aged 34 and it certainly has been a roller coaster ever since. Obviously there must have been an imbalance in my body for quite sometime, but I'm now looking forward and positively changing those things in my life 😀 The node thing is a scary one, but atleast we can regain an aspect of control in terms of our lifestyles. Thanks all 😀
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Hi everyone! I had surgery 9/21/15. All 7 of the lymph nodes were positive. Of course, that part is the most worrisome for me, because I always wonder if there were more + lymph nodes. And I work in Pathology. Knowledge is a dangerous thing.I am 2/3 done with chemo. My 4th infusion being yesterday 4 down 2 to go!
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@ Muska - I found out that apples are number 1 on the dirty list (high use of pesticides). Not sure if organic is better but I am avoiding them. I used to have at least 1 a day for the past 15+ years.
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Apples are considered the healthiest fruits to eat. Wash well or go organic. They aren't bad for anyone.
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Apples are very healthy and the best 1 fruit to eat a day. You could say pesticides about all thin skinned/ no skinned fruit and veggies. Merely wash very well or go organic. Apples are good for you!
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I am not saying there are not good for you. I know the benefits of the apples (that's why I was eating them and they were the only thing that would soothe my stomachaches). I am just saying that they are # 1 on the dirty dozen and perhaps organic are better. :-)
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I still eat apples, but organic only. That is sort of the idea of the "dirty dozen" so you know which fruits and veggies to buy organic only every time and which ones ( the "clean fifteen") buying organic is less important. Hate to see you miss out on apples. I love them too!
Lots and lots of women with positive nodes are long term survivors and there are several of them posting regularly on the Stage II and Stage III boards. The whole positive node thing freaked me out at first too, but knowing so many on these boards with positive nodes are doing well is reassuring.
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lilly55, I noticed no chemo, reason?
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I am 2 1/2 years post dx & lumpie.
Having 6 positive nodes has made me nervous. They all were matted & fused, Cancer on the outside of those pesky nodes. Extranodal extension...they did a PET scan after my surgery because of the extranodal extension. It came out clear. One day at a time, one foot in front of the other.
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~ 2/21 nodes, part of my pathology was that they remained encapsulated...which my Onc explained meant that cancer had not broken away from or out of the lymph node. I cling to that when I need to put fear at bay. I am 2 and 1/2 years out from initial diagnosis, 2 years from mastectomy (I did chemo first). There is always some anxiety whispering in my ear but the farther out I get the quieter the sound. Just found out I have a "fatty" liver...I've always eaten a pretty healthy diet but always put exercise on a back burner, weight loss has been elusive with the tamoxifen and AI. Now I need to step up the daily exercise and find a good balance of healthy, low fat, low carb, low sugar meal plans.
Best wishes to you along this journey. This is a great place for information and advice
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I think the Her2 status is a key with recurrence or mets later on. Trip negative and Her2+ folks have a higher risk than us Her2- folks in general, at least that's what my MO told me and what I've been seeing in people sigs who have mets/recurrence.
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Artista928
Actually from what I have read and advised by my oncologist is that recurrence is greater for Her2+ and Trip negative in the first five years, but then lessens after 5 years. In other words if you are going to have a recurrence there is a much higher risk in first 5 years.
As for ER/PR+ their risk of recurrence actually continues and is probably at least as high as in the first 5 years, and can continue for 10, 15 even up to 20 for some people, but very slowly lessens over time, but the risk is there for much longer. They tend to see quite a few recurrences around the 6-8 years out, possibly due to stopping tam or AI treatment at the 5 years mark.
Ched
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A long list of reasons why I refused chemo, which I do not regret for a minute. I was pressured a lot to take it by two Oncologists (I took second opinion) but I decided the risk of permanent side effects over rode any possible benefit for me.........
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Lily55- that's pretty brave to refuse chemo. I'm similar to you with tumor size, hormone status and stage, except with 1 lymph node involvement- and was told if I don't do chemo, at some point it will come back. I'm doing everything I can to help prevent that chance.Chemo sucks but it's doable for majority. I hope you continue to do well.
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Why hAve u removed apple .just curious to know.
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thanks Arista, I was told all that too, and at every follow up appt but I simply do not believe chemo is the only way for the kind of cancer I had, But its an individual choic
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Thanks for posting this Lottemarine. I too am curious to know how many women live long lives despite having nodes involved. I had 4/13 nodes involved, one being 6mm in size and another showing extra nodal extension, and was diagnosed just this past May, but I know it's been growing in me for some time. Hindsight is always 20/20 and I had several alarm bells that I didn't listen to for over 2 years because they weren't the typical alarms. Oh, well. Just finished rads last Friday. Regarding chemo, Lily55 is right about ILC tumors. My oncologist wasn't going to offer chemo to me because ILC tumors don't react as well to chemo as IDC does. I chose to do it just because I couldn't imagine NOT doing it.
Anywho, looking forward to more good news stories posted here. I have seen a lot of people in the Stage III forum post years out, so I often check them as well.
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AusUSA, I have a similar dx as you and just wanted to tell you that I had chemo prior to my mastectomy. The ILC cancer definitely did respond to the chemo. I had an MRI before chemo and then again after chemo. Although I didn't have a complete response, both the breast and lymph node tumors decreased in size. In fact, the doctor reading the MRI made the comment that the change was dramatic (his word). So I'm glad you have decided to do the chemo. ILC may not respond as well as IDC, but that doesn't mean there won't be any response at all. My main concern was getting rid of any stray cancer cells floating around in my body. I feel if the tumors responded, then the stray cells did, too. Hope you have a good response, too.
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Thanks for starting this thread! I needed this!
I was diagnosed in July, so I'm still in the thick of things. Finished chemo, TCHP, and had a dramatic reaction, although not a complete response, which the doctors didn't expect with ILC. However, the response, I believe was due to the Hereptin and Perjeta combo. The Carbo and Taxotere were to clean up any stray cancer cells out there in my body... Would I do chemo again, probably not, I have along list now, as to why not... Lily55. If I'd been braver, I'd have opted for surgery and no chemo...So proud of you for your decision. However, I feel like it was the right choice for the moment. What freaked me out was the 5/23 nodes positive. The MO gave me the standard, "we can try another, stronger chemo for a little bit, just to be safe." I said no way. She and the BS declared me cancer free. I'm not going to put more chemo in my body due to the positive nodes. The BS said there was more scar tissue in the nodes and tumor, than cancer, so the TCHP did what it was supposed to do. I'm looking at starting rads in the next few weeks and then an hormonal drug... The said they'll repeat my pet scan when I'm done treatment with rads. Other than the breast cancer, nothing else lit up on my initial pet, so I don't think anything should show up now that I've done all this and they say they got it all.
ikc I'm exercising daily, eating turmeric in all of my nutribullet smoothies, taking curcumin supplements, getting rid of dairy, sugar and processed foods... I've always felt better when I did that anyway, so.... here's praying it all keeps it far far away... I'll be looking into Milk Thistle. I keep hearing wonderful things about it.
I've been in touch with an amazing woman in the UK who did chemo, surgery, rads, and declined tamoxifen, went vegetarian, no dairy, no processed sugar and exercises everyday... she'll be 8 years clean in February. I'm just trying to put this all into perspective in my brain and work through it, I think Carolynvj and myself are the only Her2+ out here, that's a bit of a curve ball in this whole thing, but dealing with it, too.
Thank you all for being out here.
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Recently diagnosed with lymph node involvement (JerseyGirl22 I'm also HER2+), treatments still to come. Just added this thread as a favorite, stories are certainly reassuring.
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fightergirl, like you, I'm also mucinous with lymph node involvement and just found out I may be HER2+ as well. Certainly wasn't expecting that diagnosis after being told that mucinous rarely spreads to lymph nodes but I have a mixed mucinous which behaves more like regular IDC. I agree that the lymph node positive stories are reassuring. My oncologist told me not to focus on the node involvement it as it wouldn't solely be the determining factor in survival.
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