HER2 Support Group Forums - View Single Post - No exams in 12 months, I know why now.

No wonder you're upset Chelee - what are your options for getting a new onc at this stage? My GP gave me my path results that I felt my surgeon had been holding back on - that was a real turning point in my relationship with my surgeon and my sense of being in some sort of control of my diagnosis and treatment (at least in terms of making my own decision about how much info I wanted and how I would respond). We worked that through and he now treats me less like a mushroom, I trust him more.

So, I'd encourage you to think through your options without (of course) jeopardising your treatment. And act on the option(s) that you feel right about.

And venting is fine - go girl. We all need to do that to stay sane.

B

__________________
Belinda

Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.

02-21-2007, 05:06 AM	#2
Belinda Senior Member Join Date: Jan 2007 Location: Adelaide, South Australia, Australia Posts: 144	No wonder you're upset Chelee - what are your options for getting a new onc at this stage? My GP gave me my path results that I felt my surgeon had been holding back on - that was a real turning point in my relationship with my surgeon and my sense of being in some sort of control of my diagnosis and treatment (at least in terms of making my own decision about how much info I wanted and how I would respond). We worked that through and he now treats me less like a mushroom, I trust him more. So, I'd encourage you to think through your options without (of course) jeopardising your treatment. And act on the option(s) that you feel right about. And venting is fine - go girl. We all need to do that to stay sane. B __________________ Belinda Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks. Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks. May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'. Ongoing herceptin every 3 weeks. Bloods still all good! Life good! March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while! Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) ) Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014. Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps. ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.