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Oncologist recommendation for 2nd opinion

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Debbie54 View Drop Down
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    Posted: Sep 30 2020 at 2:00pm
Hi everyone,
This is only my second time posting here but view often and find this forum helpful providing sound advice. I am writing after an upsetting phone call with my oncologist. I asked if I can have a scan since I am 2 years out from my diagnosis. She adamantly told me I've had the maximum treatment and there will be no further testing. Went on to say testing would make no difference whether we find cancer recurrence as a few cells or a mass. Instead she focused on my anxiety and seeing a therapist. Honestly, I don't know where this is coming from. I never call between apts. (she called me 2 days before scheduled apt to cancel), I eat, sleep ok, work 3 days/week and never needed anti -anxiety meds. At the end of the conversation she told me to get a second opinion and I shouldn't be reading about my cancer before appointments. I'm left feeling hurt, confused, abandoned and upset. I don't think I can go back to her.
My history: dx'd May 2018 with micro calcifications on mammogram. First surgeon did an excisional biopsy (lumpectomy) instead of a needle bx because location near the nipple and small breast size. I asked at the time if going to the OR for a lumpectomy would be a problem if it turned out to be cancer. Looking back now I'm not sure if this was a mistake since I lost my opportunity for neoadjuvant chemo (which seems like would have given me more info and medication options?). I left that surgeon for a bigger hospital and underwent a bilat mastectomy; TNBC, stage 2, grade 3, neg sentinel nodes, est tumor size between 4-5 cm, dose dense AC/T chemo, no radiation. Negative genetic panel.
My concern is I don't even know if my cancer responded to my chemo treatment. Is it out of line with my treatment to ask for a scan?
Any advice is appreciated or referral to another oncologist who might be open to testing. I am in the Boston area, but willing to consider out of state for a good oncologist.

Thank you,
Debbie
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2020 at 4:50pm
Dear Debbie,

I think it makes sense to follow your oncologist's advice and get a second opinion.

I will not give you medical advice but I can help you get a second opinion.

Please send me a PM and I will send you my phone number or feel free to email me at

steve@sagepatientadvocates.org

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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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: Sep 30 2020 at 6:18pm
Thank you Steve. I will send you an email.
Debbie
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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: Oct 05 2020 at 12:42pm
Hi Debbie,

Just my two cents.  While most oncs won't scan unless you present with symptoms, I disagree (I'm not a medical professional, just a patient.)  My first onc believed in scanning her TNBC patients once a year for the first 3 years.  It was at my first scan a year after having adjuvant treatment for stage 1 TNBC that we found my recurrence to internal mammary nodes (regional lymph nodes) and now stage 3.  I was having no symptoms, felt great, blood work all normal, tumor markers normal, etc.  If we waited until I had symptoms, I'm sure it would have been more advanced and stage 4.  My suggestion is to find an onc that will give you a scan.  If it wasn't for my first onc, I truly don't believe I'd be here today.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debbie54 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 8:39pm
Hi Donna,
Thank you for your response. Its helpful to hear your story. I appreciate you sharing and glad to hear you had such a positive outcome! It gives me motivation to find an oncologist who is open to doing scans. Steve has been extremely helpful via emails and phone calls. Thanks to him I have an appointment at an excellent hospital next week. Its great to have hope!

Debbie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mary2025 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 11:03pm
Hi Donna, thanks for your helpful information as always! Wondering what scanning your oncologist recommended the first three year? PET Scan? I finished my treatments middle July, and my oncologist only recommends mammogram / MRI / ultrasound every 6 months. I want to ask her about the scanning!   Thanks! 
dx 10-29-19 | TNBC stage IA grade 3 | 0.4cm 0/1 nodes | BRCA- | lumpectomy clear margins 11-14-19 | ACx4 started 12-18-2019, finished 1-31-2020 I Taxol x12 started 2-14-2020 finished 5-1-2020
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 11:13pm
Mary2025,

Now this was 10 years ago.  I was worried about radiation so I asked her if I could have a PET scan only.  PET scan is good for the entire body (up to the head area).  A CT or MRI are usually area specific, eg, breast, liver, kidney, etc.  It's a good test, but does have it's limitations.  I had a PET SVU uptake that was in the area of need more testing (suspicious).  It was suspicious, but not high enough SVU to say it was definitely cancer.  We followed up with an MRI with contrast that identified the internal mammary nodes.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mary2025 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 11:25pm
Hi Donna, thanks so much for responding in this late hour! So happy for you that it was caught early and treated successfully. Did you do annual PET scan in addition to breast imaging (mammogram) every six month? Or only annual PET scan (due to your concerns about radiation)? 
dx 10-29-19 | TNBC stage IA grade 3 | 0.4cm 0/1 nodes | BRCA- | lumpectomy clear margins 11-14-19 | ACx4 started 12-18-2019, finished 1-31-2020 I Taxol x12 started 2-14-2020 finished 5-1-2020
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2020 at 8:21am
Mary,

After we found my recurrence and I had chemo and radiation, I had different types of scans.  During chemo, I had a CT to see if the chemo was working.  After treatment, I had CT's, PET/CT's or MRI's.  It varied based upon the oncologist and if we were doing routine scan or checking for a symptom (CT).  At first it was every 4 months, then 6 months.  I had my last scan in 2015 and was still no evidence of disease.  I don't get mammograms as I had a bilateral mastectomy when first diagnosed.


Edited by 123Donna - Oct 06 2020 at 8:24am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote mary2025 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2020 at 6:06pm
Hi Donna, thanks for the detailed information. Itís very helpful! I will ask about scans when see my onc next month. 
dx 10-29-19 | TNBC stage IA grade 3 | 0.4cm 0/1 nodes | BRCA- | lumpectomy clear margins 11-14-19 | ACx4 started 12-18-2019, finished 1-31-2020 I Taxol x12 started 2-14-2020 finished 5-1-2020
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