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Finally! The Third Time's a Charm.....

By Angi Wednesday, December 17, 2008

I spent most of Monday night and all of my waiting time at the oncologists this Tuesday morning sorting through medical records from multiple doctors. I finally weeded through them, sorted them, put them in order and destroyed the many, many dupes. My files ended up being reduced to nearly half of the original size - which made it way more easier to discuss the files with my new oncologist. I went in there with an open mind, hoping for reasonable treatment options. After all this was actually the 3rd oncologist I've seen, though I must say I had no issues with the original doctor - I was just told they had an office closer to my house so I switched offices. It was the doctor in that office that told me 6 months.

We reviewed my cancer history, pathology, and treatments. I explained to him what my last oncologist recommended, and why I disagreed. I told him what I was hoping to achieve and that I had no issues with doing chemo if it was really necessary - but that I could not see any reason why it would be. After listening and looking through my records he performed an exam, during which he asked me if I happened to be a nurse. I said no and asked why. He told me that I was very knowledgeable on the subject and asked how I came to know so much. I explained to him how I work with some breast cancer communities writing, answering questions, and helping women who have been diagnosed with breast cancer. He was quite surprised and applauded my efforts for not just educating myself but for helping others. I guess he doesn't get a lot of patients like me. I know all the ins and outs of my disease, but I tried real hard to make sure I didn't come off too strong. I didn't want him to think I was hard headed or would only do things my way. When I pointed out how Femara failed to do it's job of preventing my estrogen from binding with my cancer cells, he pointed out that it wasn't just the hormone therapy that failed me - chemo failed me as well. He told me that since chemo failed and because I've already had a recurrence I am at a higher risk for it to return elsewhere in my body, but he agreed that doing chemo at this point is not the answer. Before he puts me on Tamoxifen he wants me to get another PET scan, which will show if I have any suspicious activity going on anywhere in my body. My last PET scan was clear but it had taken place back in April - a lot could have happened since then as I have not been on any AI meds. So providing that this next scan they are scheduling for the end of the month is clean and that my blood test is ok, he's totally in agreement with skipping chemo and going straight to hormone therapy. He even said that even if I hadn't requested this course of treatment, he still would have recommended it for me. If this scan comes back clean - and lets hope it does - all I would need to do is start a daily regimen of Tamoxifen, have my blood drawn quarterly to check the cancer markers, and get scans done every 6 months....and by scans I mean PET, Chest, Bone and/or Dexa scans. It looks like I just may have finally found the right doctor - how about that?

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Phyllis Johnson, Health Guide
12/18/08 5:13am

I hope you get good news on the next scan.  Finding a doctor who will work with you is so important.  Not everyone wants an oncologist who explains the "why" of every treatment, but it's important to me, and I've been lucky to find doctors who will take the time to help me understand their reasoning about treatments.  I'm glad you've found an oncologist who will make you an active partner in treatment decisions.  Congratulations on getting the paperwork tamed.  Mine has gotten totally out of control.

PJ Hamel, Health Guide
12/18/08 6:22am

You must be breathing a huge sigh of relief, Angi, after all you've gone through. It's good to feel that you've finally connected with the right oncologist, isn't it? Best of luck with your scans. And going forward, just one possible caution -I have several young friends (in their 30s, like you) who've stopped having the blood marker tests, because they just got way too many false positives and senseless spikes, and it made them crazy worrying but then all the tests showing nothing. So just be aware of that fact with the marker tests- they can spike due to lots of other things besides cancer. Hey, happy holidays with you family - enjoy! PJH

12/25/08 2:10pm

hi. im nanette dianosed with breast cancer at 44 in 2007. i wanted to thank you for your advice on another topic id written. you inspire me to stop being a weenie and taking drs on  their word. you really ought to write a book. you could help alot of women, and lets not forget the money u'd make. you are a VERY strong woman, ive read alot of your comments. God Bless nanette

12/25/08 5:24pm

thank you Nanette.  I've read about all your questions and I understand how frustrating, helpless, and hurt you feel.  this is a learning experience and knowledge is power.  be strong - you've got to be if you want to survive this and laugh in cancer's face.  you CAN do this - it might require being a little assertive at times, but you have to look out for YOU!  I sincerly hope that you have better luck in the future - and please keep in touch.  we're always here to help and listen....especially if you need to vent (and we all need to at times) - no one here takes it personally!

Good luck & Happy Holidays!

Angi

Anonymous
Anonymous
1/12/09 10:55am

I am a sister of a br ca patient. Thank you for your posts. They keep me optimistic and reinforce the necessity for self advocacy. Strength comes from many places and as a sister I read these posts to gain new insight and understanding.

Thank you.

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By Angi— Last Modified: 09/29/10, First Published: 12/17/08