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Chelee;
What a discouraging situation. It is all the harder to deal with when going through these treatments. In my hospital my onc is sort of like the coach. He directs all the other doctors I see so if I have a question I go to him. Ergo, if you don't have a wonderful relationship with him/her you're toast....without the resources to get the information, etc. you need. If I have any questions inbetween appointments I call his number and leave a message and his nurse deals with it by talking to him. Although this method of contact doesn't sound very effective I have found it has worked very well and my onc's nurses are very compassionate and caring and very quick with the answers. The only other resource I notice around the hospital that might be assist you (assuming that all hospitals basically operate the same way...even in different countries...I suspect they do have similar resources) would be talking to the social worker who is an available resource for cancer patients here. I have not needed her services but see her around quite often in the chemo room, etc. Perhaps she could step in and be your spokesperson in settling down these relationships for you....as you said you couldn't move to another hospital (too bad). I wish you all the best.....it sucks to be you right now....as my son would say.....lol.....but things will get better.....stick to your guns and your better health. Call the President of the Hospital if necessary.
Cathy
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Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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