Friday, June 13, 2014

FISH Analysis: HER2 +

So the FISH analysis came back today as HER2/neu positive at a ratio of 8.1. This is clearly and decisively positive. The original immunohisochemistry test done on the biopsy samples was "equivocal" at 2+, which means it was borderline. Apparently in 1 out of 4 borderline cases the FISH comes back as positive, and HER2 positive only affects 15-20% of all breast cancers. I should buy a lottery ticket. Did I mention only 0.44% of women my age get this cancer anyway? This HER2 positive is a total mixed bag. On one hand, if untreated, it means it is a much more aggressive cancer and my prognosis is not as good as if it were negative. I haven't actually looked at the survival rates because I think I would come completely undone if I did. It also very likely means a very long and unpleasant course of systematic chemo, where literally a toxic substance will affect every single cell in my body. Many side effects. Not fun. On the other hand, if therapy can shrink the size of the mass, I may be a better candidate for breast conserving surgery, i.e., lumpectomy and radiation. Neoadjuvant therapy can also be a better predictor of how therapies will go in general.

Dr. Sun got the results first and called me about them. A very calm, cool, collected, and intelligent response. She really is a kind smartypants rockstar. She helped me get in to Dr. Karen Smith's sooner, and she also helped me secure an appointment at Dr. Brown's, the plastic surgeon for reconstruction. Later in the day, the nurse coordinator from Sibley, Jennie called. Dr. Garber had called to check in on me. This is like the cancer equivalent of Barack Obama and Beyonce put together sending you a personal email. Amazing. We had talked earlier in the week about how to coordinate care. She called the doctors there and requested that I be seen by the most senior surgeon in the center. I don't know how I am this lucky (in such an unlucky situation).

Between the nurse coordiator at Sibley and the senior surgeon, Dr. Magnant, I am all set up for next week. Tue 8 am with the medical oncologist, Dr. Karen Smith; 11:30 am with the fertility specialist Dr. Levy to get the initial vaginal ultrasound; 2:45 pm sleep study consultation with Dr. Gross to get back results (completely unrelated and predating cancer). Wed 8 am with the senior surgeon Dr. Magnant, 4pm with the geneticist Dr. Saadeh. I also meet with a dermatologist on Friday, but it was also scheduled before this madness. You had better believe with my p53 score of >90% I will be having a full body melanoma check. I do not want to be a multiple type cancer survivor. One is enough, thank you very much. The genetics counseling may not be covered by insurance, even though it is for cancer. I still think it is a worthwhile choice. If I have both BRCA genes, it really changes the analysis for recurrence and surgery. A prophylactic bilateral mastectomy could cut my risk of getting breast cancer again by 80-90%. I don't want the mastecomy, but if I have to have it, I want it to be because I really need it.

Bloodwork for me and the dear husband is in for the fertility doctor. The phlebotomist was super excited as soon as she saw my blood, "Oooo! You must work out a lot!" because it was so red, and therefore highly oxygenated.  It is truly bizarre to be so healthy and yet have cancer. I wonder if I didn't do all the health nut things I do whether I would be dead already. Probably. Guess I will keep doing them. I may give up wine and start a ketogenic diet, which potentially may stop/reduce the growth of the tumor. I also need to start working out again. I tweaked my back and haven't been in a while, and I really need to start trying harder to maintain the normal, including training.

In any event, I have some more paperwork and financial stuff to fax in. Fertility preservation is not going to be cheap, but I don't want this stupid cancer to steal any more of my future. Freezing eggs and embryoes is essentially equivalent, but Dr. Levy recommended embryos, so that is what I will do. Walgreens donates the medications to cancer patients, so that is a huge relief. Dr. Levy was also incredibly compassionate. His whole office, from nurse Jordan to financial coordinator / insurance Joan of Arc Susan to intake specialist Silvia to schduling assistant Kendra... they were all the kindest souls. It makes me truly wonder whether I should have stayed true to my initial plans to go to med school. Being a lawyer is great, and you can provide help when no one else can, but the energy and compassion is totally different in medicine, and I am incredibly drawn too it. Guess we will see how that goes once I outlast all these appointments and treatments.

The radiologist report on the breast MRI was not particularly helpful. I didn't have it done at Hopkins or Sibley, and I wonder if that was a mistake. We are waiting on Hopkins to do their own analysis on the images and also pathology on the untreated core sample slides. On the MRI, the mass showed up smaller. MRI's are really good at detecting invasive tissues, but not so good at non-invasive. Mamograms are better at that. The mamogram measured 2.7 cm at largest dimension, so that is what we are sticking with. It wouldn't be surprising to have the invasive ductal carcinoma inside or mixed in with a much larger ductal carcinoma in situ.  In addition, the mamogram showed microcalcifications outside the duct and in the surrounding breast tissue. This is indicative of ductual carcinoma in situ, the stage before invasive ductal carcinoma. It means potentially that a significantly greater volume of breast tissue may be taken. If chemo zaps that as part of neoadjuvant (pre-surgery chemo), then it's possible I could still get away with a lumpectomy. I am terrified of the chemo because it is acute poison and I am terrified of the mastectomy because it could mean a long term allergy, to the plastic implant. It all sucks. We will wait to see what the oncologist says on Tuesday and the third (and most senior) breast surgeon on Wednesday.

I started researching chemo therapies, and after a tip from Josh, googled images for port a caths versus picc lines. I hysterically cried upon seeing them. Don't look, it's awful! If I have to have chemo, I'm going to let the medical oncologist break to me the bad news. To make things worse, I found out one of the very promising therapies for my situation might not be covered by insurance and it's basically the price of going to law school all over again. The plot thickens. I would hate to have to decide LITERALLY how much it may be worth for the chance to conserve my breast.

No appointments tomorrow or Monday. I'm headed to NC and TN to see my mom and then go to my cousin's wedding. I can't wait. Hopefully this whole weekend will be a great time to just pretend to be normal. I hope it will be calm. Planning cancer treatment is about 100x harder and more time consuming than it was to plan my own wedding just 2 years ago.

Lots of emails still to catch up on and people to reach out to. Things are still 100 miles a minute. Can't wait for this to be over, and so grateful for everyone's support along the way!

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