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Jan 31, 2012 03:02PM
Dancetrancer, here is a previously posted summary of what my oncologist said at our initial consultation - maybe something here will be helpful.
1. HER2+ is dispositive. You have it, you get adjuvant therapy. She didn't out and out say that (see below) but that was my takeaway. I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument. Unlikely that I can use it to successfully undermine her recommendation.
2. My tumor is scattershot -- the ER/PR+/HER2- bits are laid back, pot smoking, sunset loving, Bruce fans who might get around to checking out the surrounding territory someday, while the ER-PR-HER2+ bits are weaponizing to take over hostile contiguous countries. We didn't talk about the DCIS.
3. Breast cancers are like that -- a bit of this, a bit of that. The pathology reports reflect the distinct characteristics that amount to action items. My pathologist communicated that he didn't like the weaponizing bits AT ALL by phrasing things a certain way -- I'm a student of words and I had to agree as the word choice and level of detail struck me as odd (seeing as how I have SO MUCH experience with pathology reports.) "Why are there so many 'negative, unfavorable, suboptimal, FISH Panel prognosis: unfavorable" comments? She knows the pathologist and said he was making it clear he doesn't like the look of it.
4. My invasive component is 6 mm, some of which is the laid back bit and some of which is that weaponizing kind. Both kinds were added together to reach the 6 mm number, although I don't think it is nearly that simple. There is no way to break that down to what percentage is what, and if there was she wouldn't trust it and would recommend adjuvant therapy because of the HER2+. (You will start to see a theme here.)
5. With my profile, my risk of recurrence is 15-20%. In general, the risk of recurrence is 10-15%. I'm not sure why mine was pegged higher.
6. Adjuvant treatment reduces my risk of recurrence to zero (seriuosly, she said that). The chemo dials down the reactivity such that the Herceptin can kill the cells.
7. She recommends TC (Carboplatin), 4 infusions every three weeks, and Herceptin 1x/week for six weeks then monthly to complete one year. Because Herceptin is an antibody protein, she likes to get the blood level up quickly hence the 1x/week for 6 weeks regimen -- don't you just love the way I said that like I know what it means? I hadn't seen the 1x/week for six weeks protocol before.
8. Neulasta is given the day after each TCH infusion. Bone pain is generally felt only after the first one and can be handled with Advil. No mention of Claritin and I forgot to ask. Overweight women are more likely to experience bone pain.
9. Side effects:
a. Nausea is licked. If drug A doesn't work, drug B will. Drugs are taken on a preventative basis.
b. The short treatment period puts my risk of neuropathy, eye problems, and finger/toe problems at zero.
c. Fatigue: week one, 75%, week two 85%, week three 90%/normal, then back down with the next treatment. The best antidote is to exercise -- I think exercise cures pretty much everything so no need to sell me.
d. Cold caps work. Like for real. They have a cold cap "Angel" who spreads the word and and helps women use them properly.
10. I need not be concerned about cardiac issues. The statistics are international so the level of care is uneven, and overweight women are more likely to experience a decrease in function which rights itself when treatment is over.
11. The ER+ bits, she placed at 3-4 mm (do the math -- I'm down to 2-3 mm of HER+, added to together), but size didn't really matter as her recommendations would be the same: Tamoxifin for two years then the one that starts with an A for three, reducing my 5% risk of recurrence to zero. That treatment will also reduce the risk of a new cancer on my right breast.
12. I asked whether the TCH would wipe out any cancer that is my right breast. She did answer me, but I have no idea what she said.
13. Oncotype scores are for ER+ borderline cases where chemo is a question mark, but HER2+ calls for adjuvant therapy (remember that theme?) so scoring isn't relevant.
14. Cytoxan is not FDA approved for TCH and there isn't much SE difference between it and carboplatin. I'm skeptical about that, but I think that adherence to protocol in the absence of a compelling reason to deviate is one of the prices paid for being treated by a national name.
15. It is acceptable to wait 84 days after surgery to begin treatment. I have no idea why they came up with that totally random number.
16. Lymphovascular invasion didn't matter to her as the tumor is HER2+ so adjuvant therapy is appropriate in any event (that theme again....)
17. The weaponizing HER+ part of the cancer is ER/PR- so hormonal therapy is not helpful.
18. There have not been any trials for Herceptin only. She said that after Herceptin was approved, the researchers at MD Anderson went back to study the outcome in small HER2+ tumors that did not receive adjuvant therapy and were shocked at the high rate of recurrence. It had already been established that treating women with HER2+ tumors greater than 1 cm with chemo plus Herceptin resulted in markedly lower rates of recurrence, so that protocol was adopted for smaller tumors where adjuvant therapy is recommended. WIth chemo + Herceptin, the risk of recurrence with small HER2+ tumors dropped from 10-15% to near zero.
Don't know how to fix the text so it is all plain -- I'm not trying to emphasize or deemphasize the last few items!
10/10/2011 Mastectomy: Left; Reconstruction (left)
11/1/2011, IDC, <1cm, Stage IB, Grade 3, 0/1 nodes, ER-/PR-, HER2+
11/12/2011 Herceptin (trastuzumab)
11/19/2011 Carboplatin (Paraplatin), Taxotere (docetaxel)