HER2 Support Group Forums - View Single Post - Are blood tests really that important in follow up care?

JessicaV · 01-06-2015, 02:48 AM

Spitfire, I just wanted to add that you sound...tired, stressed, a bit alone. When I feel like that I sometimes just cannot take action on the things that bother me. Sometimes I just don't have any energy or confidence left for conflict. It is just hard enough keeping my head above water and I cannot do any more. It took me nine months before I could even start to battle with my income protection insurance people over getting paid on a policy that had been sucking up about $7000 a year in premiums. They said they couldn't do anything without profit and loss accounts, which I had not done and did not know how to do, and was not well enough to be able to do. Then they worked out a minimal payment, and I just accepted that for about 3 months till I was determined enough to struggle through the bookwork to complete the profit and loss accounts that proved what they should have paid me. I was actually quite sick for about 3 weeks after doing that work because I got incredibly tired and have cognitive fatigue, and my oncologist had told me not to do that sort of activity because it would delay my healing. So take the time you need, and know that we are behind you and support your choice in how you handle this. You don't have to follow our suggestions, you just have to do what is right for you, and if we can help, please let us do so.

01-06-2015, 02:48 AM	#22
JessicaV Senior Member Join Date: Apr 2014 Posts: 206	Re: Are blood tests really that important in follow up care? Spitfire, I just wanted to add that you sound...tired, stressed, a bit alone. When I feel like that I sometimes just cannot take action on the things that bother me. Sometimes I just don't have any energy or confidence left for conflict. It is just hard enough keeping my head above water and I cannot do any more. It took me nine months before I could even start to battle with my income protection insurance people over getting paid on a policy that had been sucking up about $7000 a year in premiums. They said they couldn't do anything without profit and loss accounts, which I had not done and did not know how to do, and was not well enough to be able to do. Then they worked out a minimal payment, and I just accepted that for about 3 months till I was determined enough to struggle through the bookwork to complete the profit and loss accounts that proved what they should have paid me. I was actually quite sick for about 3 weeks after doing that work because I got incredibly tired and have cognitive fatigue, and my oncologist had told me not to do that sort of activity because it would delay my healing. So take the time you need, and know that we are behind you and support your choice in how you handle this. You don't have to follow our suggestions, you just have to do what is right for you, and if we can help, please let us do so. __________________ 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.