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Old 11-06-2018, 06:59 AM   #4
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: Aphasia?? First symptom brain mets???

Hi Lucy and SoCalGirl, thanks so much for sharing your experience and advice. I was thinking I really ought to go see my GP, knowing that she would probably send me to a neurologist (or maybe a gerontologist to be checked out for dementia) and these people would not know about HER2+ mets/brainal problems because this stuff we are talking about ain't mainstream commonplace medical knowledge yet. Worst scenario: I would find myself booked into a locked dementia ward within the next few months. Second worst scenario:my GP/neurologist would do the stroke tests, prove it wasn't a stroke and would not understand the risk of brain mets with HER2+, so would dismiss it as nothing and it would not get properly checked out at all.

I rang the receptionist at the "Dream Team's" rooms. My breast surgeon Peter is the husband of my oncologist Arlene, together they are the dream team. I see them alternately, him next. He will be doing a spot of general surgery for me to chop out a big fatty cyst from my scapular in Jan just after doing my next U/S and Mammogram breast check. He had said he wants an MRI before he operates.
I told the receptionist that Peter said he wanted me to have a shoulder MRI before he sees me on 3rd Jan, and that in addition I had had this frightening migraine experience over the weekend so I would like a brain MRI at the same time to make sure no brain mets. She understood and asked the right questions for me. The darling man wrote out the MRI request forms for his receptionist to fax me straight away. Didn't even insist on seeing me first. I am booked in for the MRIs on Friday at lunchtime.
I feel happy and functioning again: not in denial, nor staring death in the face, just sensibly checking out a possibility as you so wisely suggest, so I can sort it and get on. Thankyou, thankyou, thankyou. I feel overwhelming gratitude to you both for answering, and for this whole wonderful community for being there, providing this miracle that you are.
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1997-2004 many cysts, many MG & U/S: polycystic breasts.
Sept 2013 found lump,Cyst?? forgot lump.
Dec 2013 GP check, Referred for U/S, MG,FNA.
7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail."
Cancelled my psych clients for the week.
8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon.
Cancelled my psych clients for the month.
13 Jan
14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan,
16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done.
19 Jan 14 discharged home with 1 drain.
22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment.
26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans.
30 Jan 14 HER2+ high amplification, 13 gene copies per cell.
21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up.
Cancelled my psych clients for 6 months.
Feb 14 First MUGA test: 71%,
First C15.3 test: 20
7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and
Claritin, reflux/indigestion helped by Somac.
July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily.
Sept 14 Second MUGA test: 69%
Cancelled my psych clients for 2014
Dec 14 Third MUGA test: 70%
Second C15.3 test : 20
Cognitive fatigue delays return to work.

March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring.
July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing
Aug 2015 Heart good, no evidence of cancer, just Fatigue.
May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets.
Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.

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