No more blood tests - I'm concerned |
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SuzanneB 
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Joined: Jan 04 2014 Location: New Jersey Status: Offline Points: 3 |
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 Posted: Jan 07 2014 at 1:59am |
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Although I am 2 years out of treatment. I am just starting to research what I had/have. I also don't understand all your abrieviations. What is NED? I am not sure what stage my cancer was - the info I have is 1.2cm TNBC and DCIS. T1cN1 micro M1. Grade 3/3. I think my stage is 1B, but some charts say any T and N and M is a higher stage. I want to advocate for some more tests since I was and continue to be asymptomatic. I do appreciate reading all your positive posts.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 07 2014 at 8:09am |
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SuzanneB,
NED means No Evidence of Disease. Judy compiled a list of abbreviations used on the forums. Click on this link to see them: |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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SuzanneB
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Joined: Jan 04 2014 Location: New Jersey Status: Offline Points: 3 |
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Posted: Jan 07 2014 at 11:25am |
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Thanks you - that's a terrific abbreviation!
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 07 2014 at 2:02pm |
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SuzanneB,
Yes, NED is the sweetest word we'll ever hear! Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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LoriB
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Joined: Feb 28 2009 Location: United States Status: Offline Points: 2 |
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Posted: Jan 07 2014 at 2:10pm |
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I never had symptoms to start with, nothing showed up on blood tests or any kind of x rays. We found a lump on my cat scan but that was benign. I insisted they take it out even though they didn't think it was necessary and the cancer was hiding behind it. I had a double mastectomy mostly because of fear I watched my father and my grandmother died of cancer and I had just lost a aunt to breast cancer. what are the symptoms of it coming back its been 4 years and no one seems to be too worried about it but me. I have no clue what to watch for: as I never had symptoms to start with. Can someone enlighten me what those symptoms are?
Edited by LoriB - Jan 07 2014 at 2:11pm |
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Kellyless
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Joined: Jun 18 2009 Location: Dallas, Texas Status: Offline Points: 1154 |
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Posted: Jan 08 2014 at 10:47am |
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one of my husband's best friends finished treatment for colon cancer recently, he had surgery and six months of radiation. He feels exactly like we do - set adrift, doing nothing but awaiting the other shoe to drop. And he feels he can't talk about his fear, anxiety and overall moments of misery because it will upset his friends and family. He was SO relieved to speak to me, to hear that we ALL feel that way when treatment ends. There is no way to pop out the other side of this and not be a changed person.
As far as what we/our Dr.s are looking for past treatment? I had a lumpectomy so the mammograms are useful. Our TnBC tumors tend to be dense little bastards, so often they do show up well. Beyond that, blood work looks for changes in blood counts (bone Mets) liver functions (liver Mets) and tumor markers, tho that doesn't work well for us (mine didn't show up in original tests. Or ever) . My oncologist tells me she wants to hear from me if ANYTHING with my body seems amiss. Any illness that lasts too long or has odd symptoms. Any pain that's unexplained that lasts 3 or more days. Unusual fatigue - or ill feelings that linger. I started taking lunesta for sleeping problems during treatment. I always keep some and use when the bouts of insomnia hit. It's a lifesaver for me. Rest is a big factor in how I feel day to day. I'm still suffering from the "chemopause", I was totally pre-menapausal, but chemo changed that in spectacular fashion. If I'm sleep deprived I have more hot flashes which I loathe with the heat of a 1000 Sun's, lol.
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
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MLindaG
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Joined: Feb 16 2013 Location: Pittsburgh PA Status: Offline Points: 380 |
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Posted: Jan 08 2014 at 12:02pm |
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It is scary!!! I had the best blood work of the last 5 years 3 weeks before diagnosis! I had lost 40 lbs in the past 2 years. I was exercising 5 days a week. I felt great. Everything was normal. Did not feel a lump at all. Was going up to visit the Grand daughter and watch my son graduate with his MBA.......a couple of vacations for the summer were planned. I could not have been more shocked. Now a yearly mammogram and see the onc every 6 months and I finished my chemo last Dec. ...... All you can do is try to notice any changes in your body and report them. I try not to let it bother me......actually I don't think much of it. I'm trying to enjoy everyday!!!
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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