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Debbie54 View Drop Down
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    Posted: Mar 12 2020 at 10:03pm

Good evening,

This is my first post looking for guidance regarding questions for my oncologist apt tomorrow. I've been reading the post over the past year which has been extremely helpful. My heart goes out to everyone fighting this battle.
I was diagnosed 5/3/18 at 54 years old after my mammogram showed microcalcifications in my R breast. Instead of needle biopsy, the surgeon performed excisional biopsy (basically lumpectomy) because of location near nipple and small breast size. At the time they reassured me it wasn't cancer so I was blindsided when it turned out to be TNBC, extensive DCIS with central necrosis, positive EIC. DCIS: 1.7 cm Invasive tumor: 1.2 cm, grade 3.
4 weeks later on 5/31/18 I had bilat mastectomy w/o recon. Path showed additional 2.7 cm tumor, neg sentinel nodes, neg genetic panel
Estimated tumor size from lumpectomy and mastectomy between 4-5 cm. I completed dose dense chemo AC-T every 2 weeks (8 cycles) from 6/18-10/18. I still have mild to moderate neuropathy in hands and feet but bearable. Told I didn't need radiation.
At my appointments I'm told I had "max treatment" so no further testing. My frustration is lack of information about my cancer. I wasn't able to have chemo first so I don't know if my cancer responded to chemo. The tumor size is "estimated"
My concern now is pain and tenderness under my r armpit that started last June. US was negative. Bone scan for worsening pain was neg. Currently the pain has progressed to a constant ache under my arm and radiating down to my hand with pins, needles and numbness.
What tests at this point would be helpful? I feel I need to be proactive because they try to just give me pain medication. I would like to rule out recurrence to lymph nodes.
What tests would give me more information about my cancer and prognosis?
Appreciate any advice!
 
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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: Mar 13 2020 at 12:00pm
Hi Debbie,

I'm not a medical professional, but if you've been having pain for this long, I'd push for a scan of some type.  Have you had any types of scans, eg, PET/CT, MRI, CT?
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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Debbie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie54 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2020 at 1:29pm
I’m on my way into the apt now. I will discuss a scan with her. Good point about the length of time. I had a chest CT last September which was negative except for calcifications and hyperinflation. 
Let you know how it goes 

Appreciate your input 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie54 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 20 2020 at 3:30pm
So I met with my oncologist last Friday. She ordered an ultrasound and discussed my case with the neurologist regarding nerve pain. The neurologist ordered a MRI of the brachial plexus. I had both tests today and appear to be normal. No masses or abnormal signal from the nerves. 
Coming up on my 2 year anniversary TNBC diagnosis in May this year.
I guess I'll keep monitoring my symptoms to see if they get worse. The radiologist suggested gabapentin. I don't like to take medication, but not against it if the pain worsens. They think the pain is related to scar tissue since I didn't have radiation.
Trying to stay positive and focus on the big picture. So much going on in the world with coronavirus. Stay healthy everyone!
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