Liza Yore's Journal
Written Dec 18, 2010 2:43pm by Liam YoreLiza here-
It is very strange to have a normal day after a string of 4 or five that were dominated by overwhelming news and docotors appointments. I really don't know what to do with myslef. I feel like I am just biding time until Monday when I have to undergo 3 more tests for staging. I want to have as normal day as possible but am having a hard time doing that.
I didn't sleep much last night as the stress finally caught up with me. I had to take an anti-nausa medicine to get any sleep. I am very sore as I had to stop breast feeding cold turkey and lets just say that is very very painful both emotionally and physically. Good news is the Caoilinn is taking the bottle well even from me. I am sad as today is her last day with mothers milk. Tomorrow she might not like having a bottle as much as it will be filled with formula. Hopefully it won't be a problem.
Thank you for the outpouring of support. It really helps. I wish I didn't need it but it is wonderful to know just how many people are in your corner.
Written Dec 17, 2010 12:20am by Liam YoreToday was a busy day. We met with a radiation oncologist and a medical oncologist. Both were very professional: good communicators and very thorough. We spent two solid hours with the Rad Onc guy, Dr Eric Taylor, and about 90 minutes with the oncologist, Dr Aimee Kohn.
First of all, the news, such as it is. Liza's pathology shows that the estrogen and progesterone receptors are negative. This is not surprising in a young woman. The HER2 receptor, however, is positive. This is very good news, since it opens a second avenue of treatment, with proven survival benefits.
So the plan is this: we will consult at SCCA as scheduled on Dec 28. Dr Kohn is a recent Hutch fellowship grad and so I do not expect any radical divergence of opinion in treatment. In any case, all the docs we have seen at Evergreen Hospital have been encouraging and receptive to our plan to seek a consult at SCCA.
We have not decided where the treatment will be delivered. While we really want the best outcome, the fact is that SCCA is a long way from our home, and treatment can be pretty intensive. With me working and four kids, geography needs to be taken into consideration. At this point we are leaning towards treatment at Evergreen (with input from SCCA) but I oscillate back and forth pretty regularly.
The plan, presuming no changes, would be for a mastectomy on or about Jan 3. This will also involve a lymph node analysis. If the first nodes they find are concerning, they will probably take all the lymph nodes. This is not ideal for purposes of future arm edema, but it will give the most accurate staging information as well as debulking of the micrometases in the nodes. About three weeks will be allowed for healing, then we will begin chemo.
The first three months of chemo will be rough. They recommend Cytoxan and Adriamycin, which are pretty potent drugs. They are associated with all the classic chemo effects: hair loss, anemia, fatigue, low immune function, vomiting, etc. We anticipate this will be Feb-April. After that, we will probably get Herceptin. Herceptin is actually an antibody which blocks the HER2 gene function and really improves survival. This is co-administered with Taxol, I think, and gives a little fatigue but is otherwise not too toxic. This treatment lasts about 12 weeks.
The first cycle of chemo requires an infusion once every three weeks for four cycles. The second round (Herceptin & Taxol) is one infusion a week. Each requires several hours in the infusion center.
Sometime during the second phase of chemo, we will get radiation to the tumor bed, scar, and lymph nodes. This will be 33 treatments (!) -- Monday-Friday for five weeks. Fortunately the treatments are only ten minutes or so.
After all this, the Herceptin will continue every three weeks for another nine months, for a total of one year's worth of treatment.
At that time, we can think about things like breast reconstruction, the other breast, BRCA gene testing, and the like.
This is all assuming one important thing: that the staging is without any further surprises. We will have a chest and abdomen CT scan on Monday, with a bone scan and an echo of the heart. We are really hoping that there is no metastatic disease at this point. If there is, we are in a whole different world.
For those keeping score at home, we are right now considered a stage 2b -- locally advanced tumor with lymph node involvement. After surgery we could be downgraded to 2a if all the nodes are clean (very unlikely) or upgraded to a stage 3 if there are more than a few nodes involved. Based on the ultrasound, I rather expect a stage 3, but the rad onc said many times that the nodes have looked ugly on imaging but been clean on path. Given that the biopsy of the node showed no cancer there, there is reason to hope on this point.
The mortality data was sobering, because, well, it's mortality data. To summarize: with surgical treatment alone, the likelihood of dying from breast cancer in the next ten years is 40%. With basic chemo, that drops to about 20%. With chemo plus herceptin, that may drop to as low as 10%. While this is scary, I like the odds, and we are determined to be one of the 90% who are long-term survivors. But we also understand that statistics are just numbers and cold comfort to the folks who are in the 10% bracket. If you are one of those, it's 100%.
Emotionally, we are in rough shape. Liza is really mourning the fact that she has to stop breastfeeding her new baby in the next few days. I get it. There's a lot to mourn, and I can't fix that for her. Not even chocolate fixes that. I'm task oriented right now, but when there's no task to do and I am left alone with my thoughts, well, inside my head is an unpleasant place to be right now. Tomorrow we will tell the kids. Tomorrow night I may drink a lot.
We have a child psychologist who will see Eamon on Tuesday. As the oldest, and being kind of emotional at baseline, we are most worried about him. The littler ones we will take as it comes.
On another note, we have had an INCREDIBLE outpouring of support from our friends and the community. If I weren't so obsessed with the technical details I would gush more about the amazing people who have responded to our situation with love and offers of support. To all of you, I thank you, and we are digesting the offers. Right now we are OK, and through the holidays we are OK since family will be here. Once the kids are back at school and surgery and chemo are happening, I do think that we are going to need a lot of help. It's humbling to admit that, especially for Liza and I who share a mortal terror of imposing on anybody. But we recognize the reality as well as anybody and we will be reaching out to you all. At this moment we are trying to catalog all the people who have offered their support and trying to figure out how best to organize the troops. I truly cannot express our gratitude. This is going to be a long road, and we will get through it in no small part due to the support of our friends and the community.
Thanks for reading and thanks for all those who have commented -- we really value your feedback; it makes us feel less isolated. Hopefully not all of the updates will be this long!
Written Dec 16, 2010 1:08pm by Liam YoreHanging out waiting for the radiation oncologist. Have an appointment with the medical oncologist later this afternoon. Trying to coordinate all these appointments with child care is the biggest hassle so far.