Facebook September 27

Whoa! So who would have thought I would decide to get a double mastectomy and reconstruction? Not me!! Well, my decision literally happened overnight, but there were hallmarks along the way that guided me.

 

Happenstance appeared a couple of days before my appeal when I met 3 women who had had mastectomys - and each one of them told me the only regret they had was that they didn't have a double mastectomy. One said each year when she got a mammogram she wondered if this would be the year cancer would be in her remaining breast.

 

I was expending a lot of energy trying to persuade my insurance to pay for partial breast irradiation (PBI) instead of whole breast radiation. My in-person insurance appeal was set. To bolster my appeal, I saw a new oncologist the day before my appeal - I wanted her notes that she would not do PBI on me. I picked her because she was close to my house - that's it.

 

She was so earnest and passionate about what she thought I should do - whole breast radiation. She explained how my cancer had learned to travel to my bloodstream in a year and I had the chance now to seriously retard - and maybe prevent -  it coming back. She drew pictures and explained why PBI would not reduce my chances for recurrence below 15%, and because I had two types of cancer she thought the odds were higher. I imagine I had been told this before, but there was something about her earnestness that propelled me to rethink my whole 'less is more' strategy. She offered to get me started on radiation right then and there. I declined.

 

That evening I made my decision. I called my surgeon. I cancelled the insurance appeal. I will never have to wonder about the cancer coming back.

 

Today I saw my plastic surgeon and it turns out that the UW performs something called DIEP - basically taking fat from your tummy and making new breasts. The recovery is faster than ever and the results are even better. This is state of the art surgery and not done much outside of the Northwest. She is on the staff there and I will see them this week. She also told me I was a perfect candidate - healthy, strong, with a good amount of tummy fat (well, she didn't quite say it that way, but I knew what she meant!). So not only do I get new breasts, I get a tummy tuck to boot! I could go on about all the good things she told me about this procedure, but suffice that this is really the lemon tree making lemonade ... and I'm joyfully looking forward!

 

The one thread that has stuck with me through this is how critical your support system is when you are dealing with cancer. Thank you all for being my support system. I save all your notes and have reread them when I feel a bit low. I am fortunate, lucky, blessed and loved to have you. I want to be able to share with and listen to other women over 50 who get breast cancer, and I'm sure the universe will guide me there, too. When I have surgery scheduled I will let you know.

 

My plan is to run the Tucson Half Marathon on Dec 11.

 

LOVE TO YOU ALL - THANK YOU!!!!!

 

 

 

Radiation problems!!!

Now we come down to it. The industry standard, or current guidelines evidently state that people who have tumors larger than 3 cm are not eligible for PBI. There is no reason given, that was just an arbitrary number that was decided upon during early PBI clinical trials and it stuck.

So insurance companies won't pay for PBI unless the tumor size is 3cm or less. Mine is 3.3 cm. So screw me, the insurance company says. Too bad for you. You have to have your whole breast radiated every day for 7 weeks, and a corner of your lung will be scarred, and hopefully the radiation won't harm your heart. You will be so tired you can't work full time. And oh, yeah, once you've had your whole breast radiated, if breast cancer comes back in that breast you can't have a lumpectomy, you must have a a mastectomy. All because you are .3 cm over the limit.

But PBI? That only takes 5 days and you won't be so fatigued you can't work. And it is just as effective as WBR, at least that is what the trials say. Statistics can be twisted and misread and even altered to say anything. And they certainly do where breast cancer is concerned. But that is another post.

Oh, you found a doctor who will do PBI on you? Oh, he is a pioneer in the field of PBI and has done clinical trials with women over 3 cm? He says 3 cm is an arbitrary number, but your surgeon did such a great job leaving markers that he has no problem offering you PBI?

But your insurance company says no? They don't care if you don't have any radiation at all, they have to stick to 3 cm? Current guidelines keep changing, and with breast cancer they are changing even more rapidly. My neighbor had breast cancer 20 years ago. She had chemotherapy once a week for a year - and ended up with open heart surgery to repair the damage. That is not a guideline anymore. There are still PBI trials going on - companies are making newer machines - doctors are being educated. This is not experimental, not investigative, not out of the box. PBI is an industry standard! 

So if I found a qualified doctor whose letter says that 3 cm is an arbitrary number and my surgeon wrote a letter supporting PBI for me, why won't you pay? Why are you making my stress level go up? Why don't you see the big picture? If I do radiation now the odds of recurrence go down. PAY NOW, OR REALLY PAY LATER - ALL OF US!!!

Why are you doing this to me????? Why do you make me cry????? God I hate Regence.

My sister called me

I haven't heard from Laurie since July 30. It was a nice surprise when she called. Amazing to me, when she asked how I was doing I got a catch in my throat and what poured out was that my family had abandoned me and that I had finally told Mom and Dad that their job was to call me once a week. She asked if they had done that and I said yes - then she apologized profusely for not staying in touch with me - she said she was sorry a lot of times, had no excuses, and I said it was nice that she called. She said she would call me each week, too. She has been having trouble with plantar fascitis and I told her to find a physical therapist.

I didn't know I would get a catch in my throat. She is hoping I can come to Florida in November, although Ross's job may move to California in January. I told her I am not making any plans right now until I get this radiation thing worked. Forgiveness goes a long way, although not with my other sisters. Laurie had talked to Mom previous day and Mom had not mentioned me at all. Mom is too scared to talk about the sisters with each other, afraid Carla and Marcia and Sherrie will yell at her again and call her a gossip, I think.

Labor Day Weekend

A lovely girlfriend offered me time at her retreat on Harstine Island, out past Gig Harbor on the peninsula going toward Shelton. Her place is on the point close to the water. So within an hour of arrival I have braved the cold waters of Puget Sound and my whole body is happy. I spent an hour in the water, sorta standing with the water clear up to my neck, just watching the boats and letting time pass. I thought about the insurance issue, and realized there is nothing I can do. They turn me down, they don't, well, I will deal with it next week. Maybe I go Wed and maybe I don't. I was told by Boeing that Regence has declared this radiation a medical necessity, and if they turn me down to go to Arizona they will have to find me someone within 50 miles who will do my size of tumor. That's okay with me. I've done my due diligence and they can, too.

I am really thinking how to make sure this experience helps other women. I don't want to get breast cancer and let the experience go to waste. I want to change my life but I don't know what that looks like. I just know that I am so blessed with the community of friends that I have surrounding me. I ran into Mary this morning out on her run - she was wearing a scarf around her head. I saw her  3 days ago and she showed me her hair was just falling out in handfuls. So yesterday she shaved it all off. She said her head hurt because it wa falling out. She gets her real-hair wit next week. She is another women who will not become a victim of breast cancer. I still wonder how three women who next door neighbors all got breast cancer ... we joke that it must be the water, but I wonder about the environment.

Oh, man ... sigh

The hardest part of dealing with all this is when the tasks, the calls, just the daily things you do slip through the cracks. It is unlike me not to return calls, to ignore requests, to not follow through. But yesterday afternoon I had enough of dealing with this insurance fiasco. I let it go - let it all go - and just read a book. I thought that my brain needed to untense - and I feel better today. Did Pilates this morning and Donna taught me Body Mapping, a way to clear out my joints and let my body repair itself. My surgery arm already feels more mobile.

Boeing Clinical Advocacy called this morning and she is going to call Dr. Kuske's office and see if she can get past the gatekeeper and talk with him. I also faxed her everything, and Dr. McFall wrote a letter supporting Dr. Kuske and she got that, too. I've prepared myself to not go down to Arizona next week. One more thing to take care of - the airline ticket - what to do? I also paged Dr. Ben Anderson this morning but he has not returned my call. My thought was that he could call Dr. Kuske for me, since they are friends.

Just writing this makes me tired. Got a lovely card from Mary Ellen Johnson - how did she know I needed it???

More damn the insurance company!

I found an insurance advocate, but after a lot of conversation and investigation, she turned me down - she did not see how she could win this appeal in a timely manner. She gave me excellent advice, guidance, and a road map to do this myself. So I have spend the last 5 hours mulling this over in my mind - She said there is no real scientific evidence that what I want is better than what has been offered, and sent me articles attesting to that - but I found just as many articles attesting the opposite way. I need to make a list of what to do:

Call Dr. Kuske's office - I need him to clarify his sentence about 'not meeting current guidelines' - He told me he did tumors up to 4 cm, and mine of 3.3 was outside current guidelines of 3 cm, but he could do it. That last paragraph of his letter ... now that I've had the surgery and test results are negative for invasion ...

See Dr. McFall tomorrow - ask her to write a letter augmenting the choice of Dr. Kuske for radiation.

Posted on Breast Cancer.Org for help from other women who have had to face down their insurance companies.

The size of the tumor removed is outside the current guidelines for partial breast radiation/brachtherapy. I was offered only whole breast radiation in my 50 mile radius. I will not do that for the reasons listed below.

Dr. Robert Kuske is a pioneer in the use of brachytherapy. I faxed him my pathology reports and he asked that I fly down to see him in Arizona, which I did. He examined me and said although I was outside the guidelines, he could offer brachytherapy to me. That is what his letter said. He offered it to me, he can do it.

Because Dr. Kuske is a pioneer and very skilled - he can do brachytherapy on me. Oncologists in my area do not have his level of skill. They can't do it. That is why they would only offer WBR.

I have Regence Select, which is the Boeing Plan that allows only network treatment. In January, I can change my plan to Boeing Traditional - that allows me to go anywhere to have treatment, including Dr.  Kuske in Arizona, without having to ask for permission. I just can't wait  4 months - there is a time constraint on doing radiation after surgery.