Lymph Node Positive Survivors
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Marijen, I finished rads in June of 2015. I'm not 100% sure but I think she said it should be taken within a year. Don't quote me on that because once she said I wasn't eligible for it, I kind of tuned out because I was disappointed. All she said was that it would have no effect on my survival status at this late date. She did say it can be used if ever I become stage IV.
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Sugar plum, Thanks for posting! I also had 10 nodes....read so much about cutoffs "up to 9 nodes" then....??? Keep on keeping on. Lead the way!
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Steph you are young, I would do it. There's a topic called all about xeloda but I ignored it until you posted that article. Just wasn't ready to deal with more. Thx. I had one positive 3mm macromet node. They took 12. Stage IIA, grade 2. Or so they say. Also had an occult primary and rads. Letrozole doesn't bother me, a little finger pain in the morning. Although yesterday I read low estrogen raises sugar cravings.
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KayaRose - stage IV? Don't even think about it. I'll doublecheck with my MO in July
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marijen, thanks. You made me smile. Will be interested in hearing what your MO has to say
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I think I hold the record--32/32 positive nodes, plus extracellular involvement. I've just finished radiation & chemo. The docs are fond of calling me 'high risk' and sometimes I feel like a dead man walking. But I try to be realistic about the possibility that cancer will recur, without panicking and without obsessing. I am just grateful for each day without cancer. And it has been SOOOO encouraging to read posts by similar folks who are years past diagnosis and healthy. Discovering this thread has been my upper for the day. Thank you!!!!!
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It is good to read positive stories... I feel alone here in Norway with my lymphnodeinvolvement... Most women here are stage 0 or 1 due to mammoscreening after age 50. I am only 31 and diagnosed stage 3. Scary... Some of my lymph nodes where bigger than my tumors.
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Steph, i just asked my mo about zeloda , she told me it was for triple neg and that they did studies in japan and doses were too high to use in US ... my doc is highly redpected in miami, sloan Kettering..How can her info be so different
as you , like me are er/pr + her2-
Which is why i ran it by her. As i had chemo prior to my surgery and it fidnt work well
I will be starting arimidex shortly and still need to get thru rads starting in july
Mama oz
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Hi Mamaoz, my MO (who just a local oncologist) didn't discuss the dosage part with me, I still really appreciate she is willing to try everything with me based on the research. I know because I am young I probably can tolerate the high dosage xeloda fine, and I believe to me, the benefit of it will outweigh the side effects.
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Anna-in-Norway, you're not alone on these boards! We are here for you.
Chemist, I have a close relationship with my plastic surgeon and he mentioned one of his patients to me that had 37 positive nodes years ago--she's still doing great according to him. I take heart in that since I read so many postings of women who are terrified and only have 1 or 2 + nodes! I'm envious of them.
6/11 nodes + (me) means I'm very high-risk, but I have no idea if I have any disease left, since I had an excisional biopsy to remove the suspicious, and after that I had my dx. All I know is that I had all those positive nodes, the margins were close but clear, and I had DD AC and weekly Taxol with 6 weeks of rads and now some years of A Is.
Claire
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best of luck to you Steph good heavens you are young I am 63 .. thanks gor getting back to m
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18/22 was a shock to me and very scary. I'm so happy to hear of hopeful outcomes.
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Xeloda has just become standard (June 1, 2017) with an article in the New England J. of Medicine to treat Triple Negative Breast Cancer for those with residual disease after chemo.
There was one clinical trial that they just changed, so the observation group got Xeloda and the experimental group got Xeloda plus (either Cisplatin or Carboplatin). Before June 1, observation got nothing and experimental got either Cisplatin or Carboplatin.
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Does anyone know how frequently node positive BC metastasizes? You would think the higher the number of nodal involvement but it doesn't seem to be so when you see here in bco that many had none or very limited?
I am having some scansiety as will be having a bone scan and chest CT this week. Asymptotic except for knee pain that hasn't changed in 6 months- doc thinks it is a MCL issue however I don't remember injuring it.
Had a CT abdomen for my Diep and only showed a 5mm lung nodule which the docs told me not to worry as most are benign
I'm getting anxious.
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The question, "how often do node positive BC metastasize" is impossible to answer easily.
Estrogen and progesterone receptor status, HER-2 status, size of tumor, number and status of nodes involved, are all factors that come into play. And then there's our own biochemistry, genetic background, host resistance... is my drinking water fluoridated, did I use talcum powder, take the right vitamins, avoid tequila, eat oatmeal for breakfast, wear the right bra... (I'm kidding with that last bit.)
Clearly, node-negative is better for long-term survival than node-positive. But Tpralph, you have pretty encouraging stats in your signature line, and mets to a knee joint as a presenting symptom, while not unknown, is pretty unusual. There are lots and lots of us here who had node involvement, and have no evidence of disease.
Scanxiety--we all get it. It sucks. Try to keep busy, get outside for some exercise, and keep putting one foot in front of the other. Gentle hugs.
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Sbelizabeth. I needed that!
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Thank you for replying Claireinaz!!! Hearing about a long-term survivor who had 37+ is really uplifting. Thank you so much.
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Did MRI of my liver yesterday... waiting for results... My onk. told med this week that my cancer is not locally advanced... I do not understand that when I had grade 3 and lymph node involvement...
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Wow you ladies are so knowledgeable and encouraging...
Here's my story. 2008/2009 dx with DCIS and IDC stage 0 and stage 1 zero lymph node involvement. I had a mastectomy and took tamoxifen for 5years. Fast fwd to Sept 2016. I was showering and found a lump under my axilla same side as previous BC. within a weeks period I was having an ultrasound with biopsy. I got the call I had positive for BC AGAIN. I started 8rounds of chemo on Oct 20th 4 a/c and 4 taxol I'm es+her2- I developed hyperthyroidism (I'm assuming the chemo since that was never an issue) so I couldn't have my implant removal and complete mastectomy with lymph node dissection until my thyroid was under control. May 9th I had the implant removed- check no cancer, skin removed-checked no cancer, 35 out 38 lymph node BAMM!!! positive for cancer even after chemo
recurrence does not get staged but if it would it would put me at stage 3 and from my own personal research because of the amount of positive lymph node I would be at a stage 3c YIKES!! I am living my life in constant fear. SO trust me when I say your post have given me hope (atleast for the moment until my thoughts get the best of me)I'm on Lupron to suppress my ovaries (block estrogen)
I'm on aromasin
I've added turmeric and cruciferous vegetables to my daily diet. I want to go back to the gym but I can't find any strength.
anyways thanks for listening to me.
Have a blessed day!
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Deemendoza wow 35/38 ! Sorry to hear about recurrence
Are you doing any Phys therapy with a lymphatic specialty? no radiation?
Just wondering.. I had 3 positive of out of 29 removed BMX , they found tiny new tumor starting in left breast that had gone undetected so im glad I opted to remove both No recon ...
I have cords in my arm (painful) and am doing therapy with lymph drainage..with so many nodes removed how is your arm?
Ill start radiation in july then do arimidex
I did chemo before surgery however it doesnt usually work well on estrogen pos tumors .. which I wasnt told until after surgery and final pathology... 😳
Wishing you well..
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I was re-staged after my recurrence. Original BMX for DCIS Stage 0 w/clear margins & clean nodes. Two year later ALND for IDC Stage 3c in the nodes.
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Hello and thanks for your well wishes, I claim myself healed in the name of Jesus.
I had a PT appointment before and after.. there hasn't been much change after. I did gain 20lb during chemo so that could be the slight difference. I am exercising the arm. I started radiation on June 14 and have officially completed 8 of 28.
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👍
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Mama oz you say that chemo doesn't affect er positive nodes?. For my surgery just had a snb and they found 1/2 nodes so they want to go back in after chemo and do alnd. They said something that it may be hard to accurately stage after chemo.
Is there a chance if there are still positive nodes that they could spread while I'm having chemo if it won't affect it?
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I did not think they did Axillary clearance any longer for just 1 positive node. Don't most recommend radiation to the nodes instead to lesson the chance of lymphedema? Not sure chemo would even be effective for grade 1. My understanding was that chemo only works on rapidly dividing cells. I had a small deposit in my first sentinel node only (1 of 8). My oncotype score was only 3 and so they did not even consider chemo.
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Letsgogolf
I have grade two and they r not sure if I have other positive nodes only one soaked up the dye and he was able to find another node just beside it so he took it too. The positive had a focal area of extracapsular extension so was told by radiologist that that disqualified me from radiation alone and would need alnd. Not sure how chemo comes in for that. Just gives me just over 5 percent extra survival which puts me just above 90 percent mo told me.
The bs said he may do on oncotype but I don't know what has become if that.
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Mine is a weird one
iNow let me say I had very old (30 yr) silicone implants in ( cosmetic) they were leaking and I had finally saved to have them removed only to find what I thought was a lump of silicone was a tumor..had a 3 cm tumor and 3 nodes in right breast ...my tumor was into chest wall so they wanted to try to shrink it..
I did 4 AC and 3 out of 4 Taxol
Half way thru ...no one , me or 4 drs involved, could feel tumor! We were all excited.HOWEVER . the day before surgery when they put dye in , it lit up like a tree and all down lymphs I had already decided to have BMX, with no recon , much to my drs attemping to talk me into it but back to your question...
After surgery my pathology report baffled drs as I said none could feel it.. but it was still there .. as were the nodes.. and a surprise of a new one undetectable starting in left breast
When I questioned my oncologist as to why we couldnt feel it she said it most likely hid in the implant that was already ruptured and that chemo doesnt always work on estrogen positve tumors.. Needless to say I was upset by that news! But I had already finished the chemo.. I do think it helped slow it down and somehow dislodged it from the chest wall.. and every case is different..
but word of caution going forward for silicone implants i know these days they are better made but they will need to be replaced I think they say in 10 years. But all 29 nodes removed had silicone in them.. and I have silicone in some on left side that were not removed , this I know because I had a scare before chemo and had to have them biopsied..
All I know from what I was told from beginning was that because of lymph node involvement chemo , surgery radiation and hormone pill therapy would be a mandatory
It sounds like they are being cautious
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Mammaoz good to know. Very interesting. Glad I chose not to have implants again especially after hearing your story. Thanks
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I never heard that chemo does not work on ER+ Cancer.. that is concerning!!
My Dr's thought my BC was Stage 1 very small and Biopsy had shown Grade 1 .. I decided on BMX due to family history and just did not want to have to worry with every mammogram .. Pathology after Surgery showed tumor was 3.4 cm with 2 nodes taken and both were positive with one showing focal extension.
My Onc advised due to positive nodes Chemo + Radiation were a definite. I had a Pet Scan before starting chemo that came back clear so I started 4 treatments of AC and then 12 treatments of Taxol followed by 34 radiation treatments.
While I am thankful they only took 2 nodes with low lymphedema risk but I often wonder if any other nodes would have been positive.
Sending hugs to all!
Mary
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Mdic did you also have alnd? They are going to do that with me
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