Friday, August 6, 2010

Visit to KU Med Oncologist and decisions to mull over this weekend

Man, that was an adventure!  I had a 10:00 appointment for which they asked that I show up 30 minutes ahead, so we were there at 9:30.   I filled out the necessary paperwork and then waited...and waited.  We were beckoned at about 10:40 or so, where I was weighed and measured, we went to an exam room for the requisite BP and temp taking, then we waited...and waited...and waited!  I would say about 11:45 a doctor finally came in and we talked for a few minutes, she did an exam of my now cancer-free breast, checked the armpits for nodes, checked the other breast, etc.

During our discussion, she tried to tell me that diabetics doing chemo had really good outcomes, which I immediately challenged with references to MD Anderson's statistics.  She was young and didn't have much to say at that point; and bottom line, she couldn't provide anything in the way of proof.  Rick said I might have been a bit too direct (well, probably!). 

Then Dr. Khan came in and really just asked a few questions about my diabetes and how well it was controlled, did I have any neuropathy or other side effects, etc.  Then I got dressed and we went off to a consultation room where he reviewed the flow chart for treating breast cancer that I have already seen.  He, of course, recommended chemo and then possibly anti-hormone therapy, depending on the status of my Estrogen Receptors, which will be tested in a path lab again.  I guess we're going with the best 3 out of 4 here.  He did say the Oncotype score was meaningless (which was what I suspected), and he gave me his prediction of my chance for distant recurrence - 30% within 10 years.  Well, that's better than the Onco score which was 34% so I gained a few odds in my favor...LOL!

We discussed the side effects of the two most popular chemo protocols - with one (TC) being the "up to" 70% risk of neuropathy and the other (AC) being a 5 times higher risk for cardiomyopathy.  He suggested we think about a first generation regime (CMF) that, while not as effective as the newer protocols, has as its main side effects a risk of leukemia and long-term loss of cognitive function (also known as chemo brain).  And last but not least, we discussed Xeloda, a "metronomic" chemo administered orally that hasn't proven itself as all that effective and has for its main side effect something called hand - foot syndrome.  Here's a little info on that nasty SE that occurs in up to 60% of the folks in the clinical trials:

Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.

None of this seems worth the risk as statistically, 100% of women with a Stage 1 breast cancer are live and kicking within five years.  Yup, that's what the Surveillance, Epidemiology, and End Results (SEER) Program of the National Institute of Health says.  Here's a link to this chart in case you're curious:

This program involves more than 250,000 cases of which more than 31,000 are the same size as my tumor - localized and 17 mm or 1.7 cm. 

Even if you consider my likely ER negative status, for which they had only 3 years of data (apparently they only started checking these hormone receptors in the very late 1980's), my 3 year survivability is more than 95%.

Unfortunately, this data is not as "modern" as we might like it to be, with statistics that end with 2001. 

So, what are the potential benefits of doing chemo, assuming I could magically escape each and every long-term side effect? 

Here's a link to the math calculator; remember when I said I just wanted this to be a math problem?  I've learned a great deal in the last couple of months, and it's just not that easy!

I enter my age, size of tumor, grade and type of tumor, and hormone receptor status (using negatives for now).

The result is that there is a 22.6% death rate from cancer within 15 years.  Having no  chemo treatment shortens my 24 year life expectancy to 20 years.   If I proceed with the CMF chemo protocol, it buys back 229 days.  Hmmm.... and that doesn't count any impact from the chemo, like leukemia.  I would go through chemo hell for 229 days...doesn't sound like much of a deal to me.

The picture improves if by some miracle my hormone receptors  are declared positive.  With hormone therapy and no chemo, the 15 year cancer death rate is 12.2%.   Of course, now we're talking about osteoporosis as a side effect, but that can be treated.

I haven't mentioned much about Xeloda because I haven't yet found the clinical trial data that discusses its success rate.  I know it's being used by women who are Stage IV as they tend to cycle through various lower dose chemo drugs hoping to keep their metastises at bay.   That would not be applicable in my situation because....

There is no way to prove or disprove whether or not a single cancer cell made it past the Sentinel Node.  We know the nodes were clear.  We know that cancer cells typically go to the Sentinel Node first, before entering the rest of the body.  We know it was a very, very angry, fast-growing tumor that couldn't have been there very long or it would have been ginormous with its 90% proliferation rate. 

Here's where we are leaning:

If the new pathology report indicates positive hormone receptors, even weakly, then we will likely want to do something about anti-hormone therapy.  There is some likelihood that it might not be that effective under those circumstances.  We would probably take a "natural" approach to reducing my hormone levels, which can be checked via bloodwork to attain the same level that the anti-hormone drug would achieve.   If the pathology report surprises us with "positive" news (an unlikely scenario but one can hope), I will take the anti-hormone drug. 

Chemo does not seem to offer an acceptable risk/reward benefit.

Don't lose sight of the positive numbers - 70% chance of no distant recurrence in the next 10 years.  95-100% chance of surviving 5 years.  77.4% chance of surviving 15 years.

And one other thing...triple negative cancers typically recur in the first two or three years.  After that time, the risk is the same as the hormone positive cancers.  

And research continues with new breakthroughs each and every day.

OK, now my brain hurts (and if you've stayed with me up to this point, yours does too!!!)  and I need to stop thinking about this for a while.  Not sure what we are doing for dinner, but I think we need to do something fun.  Maybe a trip to Justus Drugstore for their delightful Sangria is in order.



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  2. would go through chemo hell for 229 days...doesn't sound like much of a deal to me.

    Maybe when you're down to 3 - it will (VBG).

    I love that you've done you're homework, and that you are insisting on being a partner in your treatment.

  3. You are doing a wonderful job sorting all this out.


  4. Wow! My head is spinning from all the what ifs. It will be so hard to make a decision when the path is so unclear. No matter what path you choose, the side effects really suck.

    It's really good that you are educating yourself so thoroughly. I think about you every day.


  5. You certainly have done your research. Did you like this oncologist better than the first one? Buying less than a year with chemo does not seem like a great return. Is the oncologist pushing you towards chemo? On the positive side, this nasty tumor was caught early, completely removed and did not effect any lymph nodes. The radiation is complete and has killed off any possible lingering cancer cells. I would say the outlook for a long and healthy life is looking good. Ultimately, you will do what you feel is right for you and your family and we will be here to support whatever decision you make.


  6. Holy Cow!! That is a lot to digest. Your head, and mine as well, is spinning. It would be so nice if it was all cut and dried and a "no brainer". I will continue to pray for you as you are working your way through to make some decisions. Kudos to you for all the research you've done.

  7. Well, my brain doesn't hurt but my head is spinning. You've certainly done your homework.

    I can see it's a totally personal decision, Michelle. You are in my thoughts and prayers as you go forward with some sort of decision. No one can make it but you.


  8. Wow, my head is "also" spinning. Michelle, you have learned so much in just a short time. I think that young doctor didn't know what to make of you knowing so much and taking such good charge of your own health and decisions.

    I say go with your gut feelings after all the research you've done. Then you can't 2nd guess anything a doctor has suggested and can feel better about your decisions. I also agree to go ahead with the decision to take the hormone therapy and not worry about your bones right now. After reading the two URLS that Dr. Dansinger sent, there seems great promise for invasive breast cancer and taking the meds for bones. I left you a message on WebMD about that.

    Are there any other breast cancer doctors you might like to consult before you make your final decision, or will this add more to the pot?

  9. Michelle, My ER+ made my treatment decision a lot easier. And I don't have the additional issue of diabetes. You need to make the best decision for you. The long term se's from chemo made me freak even before I got my Oncotype back. Keep doing your research and you will find the right answer.

  10. My head was hurting before I started reading. No it hurts and my brain is spinning.

    You are doing very good research. I am glad my decisions were easier. Time for me to go lay down and let my head stop spinning.