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Old 10-14-2017, 03:55 AM   #11
JessicaV
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Join Date: Apr 2014
Posts: 206
Re: Panicking/Wimping out

Hi Lucy, I had my bone scan but the technician told me I could not see or get a copy of the report and films directly, only via my GP.
I rang admin and complained that this was my information, and they agreed I was entitled to a copy and said they'd ring the hospital radiology clinic and organise it for me. I got there and no report. The receptionist printed it out but said no films, only laserprint copies of the images.
So finally I got the report and discovered that there was no mention of breast cancer bone metastases being there or not being there. I rang radiology company's admin again, and they said that oncologists getting this test done for this reason ask for a whole body scan (which was actually done when I insisted) and they ask for a full body report (which my GP failed to do) and they specifically ask for a report on presence or absence of bone mets from breast cancer left breast 2014. Which she failed to ask for.

I was royally pissed off. I had had this moderatly high dose of radiation and got back a report that I had 3 broken ribs. Woopy doo. I kinda knew that bit. I wanted an in depth checkup that there was nothing ominous happening too. I got a series of calls from my GP's receptionists then asking me to come in for a non-urgent appointment to report on my bone scan. Which I ignored but was annoyed by.

I had an oncologist appointment the following week, so I thought this would solve the problem. I rang the oncologist's receptionist and told her the problem, and she said she'd talk to someone she knew at the radiology company, and would get Arlene to sort it out. However, Arlene clearly had not investigated further, and just patted me on the head (figuratively anyway) and rather patronisingly promised me that the good radiologists would have seen any bone mets even if they weren't told to look for them. So I was even more pissed off.

I then sat down and wrote a letter to my GP diplomatically asking her to help me sort out a problem about my bone scan that I was needing help with. And outlined the above. A week later I got a voice message from the GP herself, telling me she had contacted the radiology company and sorted it out and wanted me to come in for an updated report on my bone scan. She wasextremely kind, told me that the radiology people had assured her that the person who did the report did have all my breast cancer test results from the suspicious mammogram onwards, so would have known my history and would have checked thoroughly. And found nothing untoward except the 3 broken ribs, and severe osteoarthritis in my right elbow. I have not had a check for osteoporosis for a long time if ever, but she wants to leave this a bit so I don't get too much radioactive dye dumped on my system at once.

Now this issue of severe osteoarthritis in my right elbow is of concern/interest to me. I broke it in the middle of having chemo, about 3 months after surgery. So I was wondering what the monthly neulasta, and the doses of Docetaxol, Carboplatin and Herceptin might have done to my injury as it tried to heal. And maybe stem-cell-like tumor cells floating around my system. Any one else got any similar experiences? Is this likely to have been misread and actually be a bone met?
thanks Lucy for following through, and holding me in mind
Jessica
__________________
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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