Monthly Archives: July 2011

Ruling Upholds Gene Patent in Cancer Test

http://www.nytimes.com/2011/07/30/business/gene-patent-in-cancer-test-upheld-by-appeals-panel.html?_r=1

Genetic testing

I’m going to write about the subject of insurance and genetic testing not so that I can whine about money but because it may be helpful for someone in the future. I found out today that the big genetic test (BRCA) that was sent out July 20th has had a hold on it at the lab due to insurance issues. I was assuming they were running the test and that I would hear back early next week. Apparently, they do not even start to process a person’s sample until they have confirmation that someone is paying for it. Our insurance company may be even slower than the average and there is a question in regards to if the test will be covered. I didn’t hear until this morning that they were not processing the test because of the insurance hold-up. And I heard from the genetics counselor at Riverside rather than Myriad genetics lab.

I got the number for the lab customer service and called them myself. I was informed that the reason for the hold is that insurance may not pay. It’s an expensive test at $3,340.00 and they will not start it without notification in writing that someone will pay. I was informed that the appeals process with our insurance may take 30 days. We are waiting on this result to help guide decisions on how to treat my cancer. It helps give us information on the likelihood of reoccurance and if we need to be more aggressive on treatment and surgeries. Because we need this information sooner rather than later I went ahead and sent an email authorizing Myriad to begin the test with the understanding that if insurance doesn’t cover then I will be responsible for payment. I also asked if they could put a rush on the test since over a week went by before I found out that there was a hold. With that email they began the test and the agent marked it as Priority. So, I’m still hopeful that we will hear results next week sometime.

Plastic Surgeon

Ahhh, sweet, sweet silence. I finally got the kids to bed and opened an expensive bottle of wine to have with my bowl of nachos. Don’t judge me.  I already drank all the cheap wine in the house and haven’t made it to the store. I’ve been asked medical questions quite frequently lately and I’ve been tempted to lie about how much alcohol I drink. Two weeks ago I was able to answer honestly that I have maybe 1-3 drinks a week. Today I had to clarify that while I don’t typically drink a lot I’ve been drinking a lot more recently. I don’t think they appreciate my joke.

 

Today was the appointment with the plastic surgeon. I’ve never been in a plastic surgeon’s office but I was picturing a fancy waiting room with waterfalls and soft lighting and well cared for women reading Vogue while waiting for their Botox shots.  This morning Jeffrey was trying to decide between wearing his Ironman or Batman t-shirt but since he couldn’t decide which one would make him look most sophisticated he ended up wearing his nicest button-down plaid shirt. I went with the F-you and your pretentious office I have cancer outfit of ripped jeans and flip flops. I have to say that the office was a disappointment. I mean, it was a nice office overall but didn’t give me that Dr. 90210 feeling I was expecting. It was decorated in earth tones with big heavy furniture and floor to ceiling windows overlooking surprisingly ordinary landscaping. There were big glass displays holding cosmetics with an advertisement that reads “Everyone seeks perfection”. There was a large full length mirror propped in one corner but with a visible trash can on the opposite wall. The patients in the waiting room all appeared to be normal people and there was even a woman in hijab. I couldn’t help but think maybe she had breast cancer too. I can’t imagine she was there out of vanity.

The only high maintenance looking people in the office were the office staff with their flattened hair, make-up and obviously “done” boobs.  Even though I was warned  by a friend that this doctor was a player, he came in wearing scrubs instead of a $5,000 suit and had visible gray hair. He mentioned his twin baby boys so that must be it. Babies will do that to you every time. I must have the look about me too. During the breast exam he said, “you breastfed your kids” as a statement rather than a question. He said that the same thing happened to his wife’s breasts. Which, I’m sure she must be thrilled about him discussing in the office. He was not condescending in this matter but just very factual. He said I have very normal “girls”. Typing it out it does make it sound like he was an ass but he really wasn’t. He was sweet and caring about our situation.

 

I explained to him that I may not be having a mastectomy but that I wanted to have the consultation done in case we do decide to go that route. That way we have one less appointment to squeeze in before surgery. He did bring up the option of just a single mastectomy with reconstruction on the left side. He said it’s between me and Dr. Lilly and he’s just there to make it all look nice in the end. He said that with a right side reconstruction he would do a lift on the left side so that I don’t end up with one 18 year old breast and one 31 year old breast. But, he said it in the nicest possible way so it was more comical than offensive. He gave me his cell phone number so that I can text him updates to my pathology and genetic testing results.

 

More to come in the next post about the pathology results from my biopsy.

Maybe more good news?

The biggest news today came on the way home from the plastic surgeon. Dr. Lilly called to let us know that the full pathology report is back from Riverside. He said he had 3 pathologists examined my original biopsy slides including the head of the department. They all agree that they disagree with the diagnosis given by Mount Carmel. They did not find any cancer in the biopsy slides. Also, the images seen on mammogram, ulrasound and MRI do not indicate that I have cancer. Yeah, I’m just as confused as you are. He did say that the biopsy shows some atypical areas which means precancerous. Because of that information we have decided to proceed with a lumpectomy on Monday morning. The only way to know for sure what is going on in there is to take it out and test the whole thing.
Dr. Lilly said that there is a 50% chance that they will find some cancer once they get the whole thing out. He did say, however, that it would likely be lower stage than originally thought. My original diagnosis of Invasive Ductal Carcinoma will possibly be downgraded to Ductal Carcinoma In Situ and there is a possibility that there will be no cancer at all.  I’m not banking on the last option since I feel there is a reason Mount Carmel said I have cancer and I can’t let that go unless I get a good explanation. But, even a diagnosis of DCIS would be better than the IDC diagnosis. With the size of the area affected I would probably be stage 2 with IDC but a DCIS would likely make it stage 0. That would still be cancer but even smaller and less of a worry.  At this point I’m very hopeful to avoid chemo and maybe even radiation.
The other factor is the BRCA genetic testing. Results are still out on this. I won’t hear about this until next week. We have our Second Opinion Clinic scheduled for Wednesday afternoon and I hope to have all the answers by then. If the lumpectomy pathology results show cancer or if the BRCA is positive then even with the previous lumpectomy we may proceed with a mastectomy. Although, if the cancer is small enough and low enough grade/stage that I do not need radiation then I may postpone and opt for a prophylactic mastectomy at a later date if risk/genetic factors indicate a need.  If I do need radiation then… I don’t know.  I’m tired of guessing. I’m just going to have to wait it out. Again. We should know by Tuesday or Wednesday what exactly we are dealing with and then maybe we can make a plan for treatment. We are still waiting on the ovarian cyst surgery. The gynecologist is willing to be more aggressive with the surgery but at this point I’m hoping to keep my girlie parts at least for the next few years. We have to have the cyst out and since we are moving forward quickly with the lumpectomy we won’t be able to do the surgeries at the same time. I’d also like to have results from genetic testing before making a decision on that. We’ll have to schedule a second surgery date but hopefully it will be minor.

Good news and more waiting

This morning started with a call from the nurse navigator from the Riverside Breast Specialists. They need to postpone our Second Opinion clinic appointment until next Wednesday since they need more time to review the pathology. I told her I didn’t want to wait and I wanted to know what the pathologists needed more time to study. She said she would let Dr. Lilly know.

10 minutes later Dr. Lilly (love him!) called me back himself. He said that the pathologists at Riverside do not agree with the original pathology report from Mount Carmel. They are sending for additional pathology slides from Mount Carmel to do a complete examination. Dr. Lilly could not tell me what they were seeing but just that they were not seeing that it is Invasive Ductal Carcinoma from the slides that they have. The results will make a difference on if we need to do a lumpectomy or mastectomy. So, more waiting and then the question of which interpretation of the pathology do I trust? This is science and medicine, isn’t there some kind of standardized protocol? I guess mistakes happen but, jeez!

He did have good news from my biopsy yesterday. The spot on my left breast came back as benign. At least I’m not completely littered with cancer. One cancer is better than two, right? I hope the pathologists didn’t make a mistake on this one too.

I also heard from my employer today. I am supposed to start work at the end of August but I went ahead and notified them of the situation because I was making myself crazy with the possibility of losing the job. There is a good possibility that they (the boss and director of personnel) are cursing my name once they get off the phone but they are being quite nice to me. I will be able to take a medical leave of absence for the time I need for recovery from surgery. I acknowledge that this is not a good way to start a career but I signed the contract for employment before I knew and I swear I did not plant some cancer in order to avoid joining the labor pool for another year. Jeffrey has already spent my first year’s salary in his head so I’m very happy I can keep the job. Actually, I hope to have the worst of this behind me in the next month or so and since both kids will be in school I don’t want to sit around thinking about how cancer ruined my year. I have a job that I’m excited about and I’ve been working on this since I was pregnant with Amira. I want to work and I’m glad they will hold the job for me. I’m just going to have to work extra hard to earn respect when I finally do show up for my first day.

I took these two bits of good news (benign left side and job) and packed a picnic lunch for the kids for after Amira’s speech appointment today. We had a great day at the park and I joined them in playing freeze tag and hunting butterflies. I had to take phone calls from 5 different people at various doctor’s offices and labs while we all try to sort out the puzzle but I was able to take the phone calls and then let it go. It was nice to feel peace and hope even if it’s just for the afternoon.

Monday’s appointment

The second biopsy went okay this morning. They were able to find the mass on my left breast on the ultrasound. The radiologist said that is is a low suspicion type but that we need to have the biopsy results. If it is cancerous they need to know the type and it will affect surgery. The surgeon will need to check the lymph nodes on the left side during surgery as well as the right if this one is cancer too. 

I did not watch the biopsy this time. I noticed that everyone is really super nice once they know you have cancer. Really, too nice for me personally. Please just stay professional and keep your distance. I don’t need to have an emotional connection with every tech and nurse who comes in the room.There was some issue with bleeding from the biopsy site. It didn’t help that they did a mammogram immediately following the biopsy. This spot is going to be more painful than the other one. But at least they didn’t have to go in for the biopsy using MRI.

Those results will be in in a couple/few days I think. Next up is the multi-professional collaboration appointment on Wednesday. I hope to have more answers then and hopefully schedule surgery for next week sometime.

Some people have offered to help. Right now Jeffrey’s parents are watching the kids for appointments. I have a trusted high school babysitter that I can call when they are not able. I’m thinking that meals after surgery would be nice. Those of you who know Jeffrey know that he just doesn’t eat and quickly loses weight (that he really can’t spare) when I’m not feeding him. I also have a bottomless pit for a boy who eats anything and everything. Of course, Amira survives on apples, yogurt and peanut butter sandwiches almost exclusively.

Second biopsy

I had a MRI on Thursday that revealed that the tumor on my right breast may be bigger than originally thought. It is likely between 2.5-4.6 cm. It also showed an abnormality on the left breast that may not be cancer but I am scheduled for a follow-up to check on that.

I need to be at Riverside at 7:15 am for an ultrasound. I will also probably need a biopsy on this spot and there is a possibility that it will be a MRI guided biopsy. That means I will be put in the MRI machine while they perform the biopsy. This sounds super fun but I’m hoping to avoid this.

Also this week I have the second opinion clinic at Riverside on Wednesday afternoon. Here is the explanation from their website:

OhioHealth’s Breast Cancer Second Opinion Clinic provides you with a physical exam, multiple specialists’ review of your pathology and imaging studies, plus a one-on-one interactive session with a room full of medical experts who are gathered solely to discuss your case. We rely on the most advanced tools and trusted technologies to confirm breast cancer detection.

 

The Breast Cancer Second Opinion Clinic offers:

  • Patient examination by a breast cancer specialist
  • Extensive case review and treatment recommendation by a multi-specialty team of research and treatment specialists
  • Final recommendation shared with patient and primary care doctor

On Thursday morning I have an appointment with the plastic surgeon. A bilateral mastectomy is a serious consideration at this point so we are proceeding in this direction to be prepared. I will keep everyone updated.