Tuesday, May 3, 2011

The Decision

Wow.....what a tough decision in front of me.  I met with two amazing oncologists over the past 2 days, both at the top of their game and highly respected in the industry.  After my appointment yesterday with Dr. Chui I almost canceled my appointment today thinking what could this other oncologist possibly have to offer that Dr. Chui couldn't.  We were SO impressed with Dr Chui.  He was brilliant, specialized in breast cancer in young women and his philosophy was simple: he cures breast cancer.  His expectation is that it will never come back again, in any form...no cancer for the rest of your life.  Of course that also means he is throwing everything and the kitchen sink at you.  If he thinks you can handle it, he will give it to you - short term pain for long term gain.  He quoted a lot of clinical trials, but also had separate opinions that were not based on trials and were based on his gut.  His recommended regimen is TAC chemo (all components of TAC at once) every 3 weeks for 6 cycles.  This bucks the trend from what other oncologists in the region recommend (more on that later).  He wanted to of course follow up with radiation - that is standard and not negotiable -  and after radiation it would be 5 years of Tamoxifen, the gold standard for pre-menopausal women.  But the BIG difference was that he also recommends estrogen deprivation therapy which means he wants to shut down my ovaries from producing estrogen.  It would be after radiation, and we would start with a shot once a month and continue that (if I could tolerate it) with the eventual goal of removal of the ovaries.  This is a radical approach, and not one that many women take.  He quoted a clinical trial that followed 1,804 premenopausal women who had high risk breast cancer.  They did NOT have chemo, but just had surgery followed by estrogen deprivation & tamoxifen.  After 5yrs, 95% of them were free of recurrence.  He thought these numbers were impressive enough to recommend this therapy (of course WITH chemo).  His opinion (not based on clinical trials) is that Tamoxifen just slows the growth of cancer....it does not necessarily stop feeding the cancer.  If you deprive your body of estrogen production from your ovaries you are then also depriving the cancer of its "fertilizer".  Estrogen deprivation is a drastic hormonal change for your body and is BRUTAL.  Of course, he is not forcing any of his patients down this route....just suggesting it.  I had briefly talked with Dr Liu (Kaiser doctor) about this and he did not recommend this course of action for me.  He thought it would negatively impact my quality of life and did not think it was worth it..he thought Tamoxifen was enough.   Dr Chui was also adamant that I get a port (which I was not going to get) because of the specific drug associated with TAC chemo.  Getting a port would require one more surgery (out patient just like lumpectomy), but there is not a wait after surgery...you can get chemo within 24 hrs of the surgery.  The port makes it so that you can get chemo without getting an IV.  Dr Chui (as mentioned previously) works at OHSU which is one of the best (if not THE best) hospital in all of Oregon.  His building is brand new with an infusion room (where you get the chemo) that is straight out of the movies (if the movies had chemo rooms), totally high tech, view over looking the river.....very impressive and fancy pants.

Today we met with Dr Kurup.  She is a young Indian doctor at Providence (she reminded me of you Vidya!).  I loved her right away and had a great rapport with her.  Providence is another highly respected cancer hospital in Portland.  The grounds are not even close to as impressive as OHSU, but they are definitely nice and up to date.  Dr Kurup had a completely different regimen recommendation from Dr Chui.  She recommended "dose dense" TAC chemo, which means you get AC part of the chemo every 2 weeks for 4 cycles, followed up with the T part of the chemo every 2 weeks for 4 cycles.  This would be followed up with radiation and Tamoxifen.  Dose dense chemo is a shorter process and slightly better tolerated based on the fact that you are not getting all 3 drugs at the same time.  The reason that this is the recommended norm for doctors in this region is that it is better tolerated and the results seem to be the same from the other way of administering TAC (which Dr Chui recommended).  This is where it gets confusing right - why would Dr Chui recommend something that was not as well tolerated and longer if the results were the same?  The TAC regimen that Dr Chui recommends has a different ingredient "T" than the dose dense TAC that Dr Kurup recommends.  The T in Dr Chui's chemo has a MUCH lower risk of peripheral neuropathy (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001619/).  Dr Chui made a pretty big deal about this, enough so that I was convinced I would never get dose dense chemo because there is double the chance that I could get peripheral neuropathy.  Peripheral neuropathy symptoms range and could be as mild as a slight tingling in your fingertips or feet, to mid level: you are basically wearing oven mits on your hands and can't even button your own shirt, to extreme: wheel chair.  When we talked with Dr Kurup about this (double the risk of peripheral neuropathy) she explained that yes, about double the amount of people getting the "T" in the dose dense get peripheral neuropathy...but what those numbers don't explain is that less than 1/3 of those people do not have long term symptoms...the symptoms go away.  It is also something that you can monitor while you are getting the "T" portion to make sure it doesn't get to the extreme (or even moderate) level.  Dr Kurup also disagreed with Dr Chui on the estrogen deprivation.  Yes, she knew of the study that made it seem like this was going to be the next best thing in the world for breast cancer treatment.  But she also mentioned that there had been other studies that showed that it was almost a wash in the end, and she wasn't going to recommend something that drastic unless she was sure of end results.  And regarding the port, she had a chemo nurse come in and look at my veins to see if I had "good veins".  The nurse took one look and thought that I didn't need a port (at least not for dose dense chemo).

I could literally write novels with all of the information that we received in the 2 visits over the last 48 hours.  Each doctor spent about 1.5 - 2 hours with us, and neither one repeated themselves.  That is tons of information, so I am just hitting the high points here.

We have been bouncing off the pros and cons of each doctor and regimen with each other all evening (Bob, my Mom and Dad and I) and I think I have made a decision but am going to sleep on it.  I have a lot to think about and want to just move on with life and get this started as soon as possible.  As soon as I make a choice I will get started with chemo next week.  I know that I would be in excellent hands with either doctor.  It's a great problem to have - two amazing doctors to choose from.  I'll post tomorrow who I am going with.....stay tuned!

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