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when it returns....

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novemberrose View Drop Down
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    Posted: Oct 31 2019 at 7:36am
Can anyone tell me, if the cancer reoccures, is this usual in the breast or can it also be in other parts of the body, even when you have a full response to chemo and no involved nodes?

Will they discover distant re-occurance in standard check ups?

Is there a big difference between people who did radiation and those that did not?
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2019 at 12:54pm
I donít know about the radiation, but my oncologist says if it reoccurs they catch it by symptoms.  They do not do regular screenings ( like a PET scan) here unless there are symptoms.  That all seems backwards to me but it seems to be standard of care.  In reading posts I would say there are reoccurrences in the same breast, other breast or other parts of the body with no particular pattern.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2019 at 12:35pm
My surgeon told me right at the beginning, on giving me my diagnosis, that I'd have the op, the chemo and the radio.

I questioned him about the radio and his reply was, well I don't want you not to have radio and then come back with metastases in a year or two's time.  He said the radio was a belt and braces scenario, to make as sure as we could, that any stray cancer cells would be wiped out and make recurrence LESS likely.  Note he didn't say UNlikely, just less likely so.  Take whatever comfort you can from that because there really are NO guarantees with this as with everything else in life.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GeriC Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2019 at 11:47am
I met with my oncologist before my 3rd round of chemo and I asked him, how will I know I am NED, "cancer free" after all chemo and radiation is done? I asked if I will have scans or tests. He said they will determine my cancer status by treating symptoms. Is this really for real? I've not had a body scan, only MRI of the cancer I found - is this for real? Right now I can say I have no cancer symptoms since they cut it out - so why continue chemo? Why bother with radiation? The answer he gave makes no sense to me. Check ups will be every 6months for a while - but what are they checking? I  have Rheumatoid Arthritis and Type 1 Diabetes - I am full of symptoms on any given day.
Sorry - I'm frustrated
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2019 at 9:49pm
GeriC,

It is frustrating.  Why wait until symptoms present and then there is little to no hope of stopping it?  It is the general practice and guidelines to not do routine scans.

I'm so glad my first onc didn't agree with this practice and had her TNBC patients scanned each year for the first 3 years.  I had absolutely no symptoms, normal blood work, normal tumor markers, etc.  The PET scan one year after chemo found the recurrence, which at that time, was a regional recurrence (Stage 3) and not Stage 4.  If I had waited until symptoms, the outcome would have been much worse.  If you look at my stats, I was early stage 1, bilateral mastectomy, clear nodes, good margins, etc.  What I learned is not all tumors drained to the sentinel nodes.  Most, but not all.  I was in the 4 to 5% that drained elsewhere.  I thank my first onc every day for still being here.  (just my two cents)

Donna
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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Matt.Velez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Matt.Velez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2019 at 1:39pm
My wife had Stage 3 TNBC in May 2018.  After 6 months of chemo, a lumpectomy with 32 lymph nodes removed, 6 weeks of proton radiation, and 6 months of Xeloda (maintenance pills... the cancer returned last month which spread to her lungs and brain.  Before the second diagnosis in October, my wife had a mammo and they found nothing, but she demanded to have a PET Scan and a MRI (Brain) done - and that's when they found 2 lesions on the left lung, 1 lesion on the right lung, and a small lesion on the back of her brain.  Had she not requested her scans, doctors would have checked her 6 months from now.  

I say this to say - be your own advocate!  

Now doctors want to give her more chemo this time around, but we're opting for an alternative option.  We are looking into ENVITA in Scottsdale, Arizona (www.envita.com), where they run precision genomic testing on the cancer cells to identify the "markers" that cause the cancer to thrive.  By identifying the markers, they can customize/personalize treatment to target the markers directly.  Their approach incorporates a number of non-conventional treatment strategies, but we are believing this approach will be far better than conventional chemo and unfounded clinical trials.

Hope this helps!        


Edited by Matt.Velez - Dec 17 2019 at 1:43pm
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James123 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2019 at 7:20pm
Hi

Your wife and I were Dx a month apart.  I was Dx in June 2018 and had IV CHEMO, Lumpectomy , then Surgery,  then 6 weeks of Radiation then 6 months of Xeloda .  I had PET scan in June 2019 it was clear and MRI of Brain in February 2019 and it was clear but had recent CT OF CHEST that show small lung nodule that they donít think is cancer but I ended xeloda on September 12, 2019í and I very concerned about recurrence and I am planning to ask for another PET SCAN and MRI OF BRAIN.  My CT OF CHEST on November 6, 2019 was clear per MO and she said the Lung nodule was unchanged and she has ordered another CT OF CHEST IN 4 months in March 2020.  I am very scared .
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James123 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2019 at 7:21pm
I am not sure if Xeloda is enough 
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Matt.Velez View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Matt.Velez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 17 2019 at 9:24pm
Hi James123 - yes, this is all scary news but I believe you are in best position if you get your scans done every 6 months or earlier if possible.  The earlier you catch something... the better you can treat it "if" something shows up.  

As for Xeloda, the pills did not work for us.  Knowing how aggressive TNBC is, we know that when it sees chemo... there's a chance it can spread and do more harm.  Nonetheless,  I do think Xeloda was worth the try.  But when all  attempts failed and doctors wanted to do more conventional chemo with unfounded clinical trials and a brand new immunotherapy pill - we opted to do different.  

There's something truly scary about being a lab mouse for these doctors.  And this is where self advocacy is so important.  You can call the shots at any time!  Even if you choose to look for treatment elsewhere. My wife is being treated at one of the top cancer centers in the country and still - we're going another route!

Also, speaking to a therapist is always a good way to release tough emotions.  My wife, daughter and I all have our individual therapists while battling this wicked disease!

I hope this helps! And I am wishing you much success in your journey!



Edited by Matt.Velez - Dec 17 2019 at 9:54pm
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