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DianneS · 07-23-2009, 09:53 PM

That's what I think, too. The secretary to my onc called and said "Dr. -- " (Should I say who it is so no one else will get stuck with her?) said you don't need to see a medical oncologist..

I have the message saved on my answering machine, just in case. My hubby and I are blown away...it's scary. I always thought that British Columbia was rated very well when it came to breast cancer but if I take the advice of the BC Cancer Agency I'd probably die. I asked my family doctor today about not seeing a medical onc and he was surprised. He said of course I would want to continue seeing an onc as he isn't familiar with tests, etc that need to be done and cannot interpret them. Now I have to call back and do some more arguing. My onc has caused me more stress than anyone, by saying contradictory things - such as, did I want to continue doing taxotere and carboplatin or stop at 4.5 treatments? Originally she said 6 tx. I did one more treatment tho she wasn't advising me to do so. I feel I have to be my own advocate. This sucks because I don't know what I'm supposed to be advocating FOR. Now I am worried that I haven't had the proper tests so far after chemo. I am still doing Herceptin. Can I share what I've had done (if I can remember!)

~By onc: bloodwork one month after chemo (one done by my request in April)
Echocardiograms every 3 months...
~exam at 3 mos after chemo (June) to check surgery area, listen to lungs, palpate abdomen and check bloodwork
~given Arimidex (AI) at visit in June without being told I should have a bone density test first. I initiated that test which showed I am osteopenic. I had no time to ask onc questions about the AI since I didn't know I would be given the AI at that visit.
~AI stopped due to nausea (which has also stopped after AI discontinued). I was on it 3 weeks and quit last Sunday.

How long is it safe to not be on hormone therapy? I am only weakly ER positive, so....when I asked the onc in mid June why I wasn't given AI's before (I finished chemo in March 09) she said 'because I had been a little toxic'. ?? She never told me that at the June visit when she gave them to me. Does everyone wait 3 months after chemo to begin AI's, or is she just remiss?

The only doctors I am seeing are my family doctor and the lady doctor who administers my Herceptin (a sweetie, not the crazy onc). But she is an internist with a certificate for administering chemo and is not a cancer doctor. She has told me she isn't qualified to interpret tests or order them.

So - see why I am freaked out? I feel I am on this journey completely alone. I live in a remote area, no support groups and travel several hours just to get my Herceptin.

It is scary to me that a doctor supposedly so highly regarded, & has co-authored a best selling breast cancer book for this province can screw up this badly.

This disease is stressful enough without having to wonder about one's care. I must disagree in that I have found the bc experience in B.C. to be sub-optimal.

A few weeks ago via phone regarding taking the AI, she said 'you could recur at any time'. This totally freaked me out! All I had been hearing prior to this has been "You're cured....you have a good chance at a cure....blah blah...' I commented to her that breast cancer has no cure. See what I mean by her flip flops? When I confronted her she said 'I've always told you this'. So not true.

I hope I can get someone to help me soon.

07-23-2009, 09:53 PM	#19
DianneS Senior Member Join Date: Aug 2008 Posts: 327	That's what I think, too. The secretary to my onc called and said "Dr. -- " (Should I say who it is so no one else will get stuck with her?) said you don't need to see a medical oncologist.. I have the message saved on my answering machine, just in case. My hubby and I are blown away...it's scary. I always thought that British Columbia was rated very well when it came to breast cancer but if I take the advice of the BC Cancer Agency I'd probably die. I asked my family doctor today about not seeing a medical onc and he was surprised. He said of course I would want to continue seeing an onc as he isn't familiar with tests, etc that need to be done and cannot interpret them. Now I have to call back and do some more arguing. My onc has caused me more stress than anyone, by saying contradictory things - such as, did I want to continue doing taxotere and carboplatin or stop at 4.5 treatments? Originally she said 6 tx. I did one more treatment tho she wasn't advising me to do so. I feel I have to be my own advocate. This sucks because I don't know what I'm supposed to be advocating FOR. Now I am worried that I haven't had the proper tests so far after chemo. I am still doing Herceptin. Can I share what I've had done (if I can remember!) ~By onc: bloodwork one month after chemo (one done by my request in April) Echocardiograms every 3 months... ~exam at 3 mos after chemo (June) to check surgery area, listen to lungs, palpate abdomen and check bloodwork ~given Arimidex (AI) at visit in June without being told I should have a bone density test first. I initiated that test which showed I am osteopenic. I had no time to ask onc questions about the AI since I didn't know I would be given the AI at that visit. ~AI stopped due to nausea (which has also stopped after AI discontinued). I was on it 3 weeks and quit last Sunday. How long is it safe to not be on hormone therapy? I am only weakly ER positive, so....when I asked the onc in mid June why I wasn't given AI's before (I finished chemo in March 09) she said 'because I had been a little toxic'. ?? She never told me that at the June visit when she gave them to me. Does everyone wait 3 months after chemo to begin AI's, or is she just remiss? The only doctors I am seeing are my family doctor and the lady doctor who administers my Herceptin (a sweetie, not the crazy onc). But she is an internist with a certificate for administering chemo and is not a cancer doctor. She has told me she isn't qualified to interpret tests or order them. So - see why I am freaked out? I feel I am on this journey completely alone. I live in a remote area, no support groups and travel several hours just to get my Herceptin. It is scary to me that a doctor supposedly so highly regarded, & has co-authored a best selling breast cancer book for this province can screw up this badly. This disease is stressful enough without having to wonder about one's care. I must disagree in that I have found the bc experience in B.C. to be sub-optimal. A few weeks ago via phone regarding taking the AI, she said 'you could recur at any time'. This totally freaked me out! All I had been hearing prior to this has been "You're cured....you have a good chance at a cure....blah blah...' I commented to her that breast cancer has no cure. See what I mean by her flip flops? When I confronted her she said 'I've always told you this'. So not true. I hope I can get someone to help me soon. __________________ Three years and 5 months NED Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm Grade 3 8/9 Richardson/Bloom test ER+ weakly positive Alred Score: 4 (suggesting I would strongly benefit from hormone therapy) PR-, HER2 positive +++ No vascular invasion No lymph nodes involved Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!