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.

Damn the insurance companies!!!

Regence Select decided today they will not pay for radiation in Arizona. They didn't read any of the documentation, and I realize this is just the first volley. I hate playing these games - it takes so much energy to figure out what they want to hear!! The worst part is that in January I can change my insurance and this effort will not be needed - I can go anywhere I want to go for treatment - but medically I cannot wait that long. Just keep pushing, I guess.

After second surgery

I'm having surgery today at Valley - removal of 4 more lymph nodes and some microcalcifications. I will be home later this afternoon. I'm feeling confident all will go well, but would appreciate your good thoughts and energy!! Love to you all - thank you for everything.


I shouldn't even be on the computer, but the 'caine hasn't worn off yet - things went swimmingly well - My girlfriend Nathalie got me home, I had chicken noodle soup and crackers and oreo cookies and I will take a pain pill before I take a nap. No drain, no elastic wrap, no news of the lymph nodes or even if the micros are malignant - I will see my surgeon next Monday for that info. Thank you all for your love and prayers - I know that is why it all went perfectly!

Feel great. All went well. Since I had done this three months ago I was prepared. Anesthesiologist remarked on how healthy I was. My pulse was 50 - amazing!! Nathalie brought me home. I slept not all that well, but feel fine. In between stage where you know you shouldn't do anything but feel good enough to do stuff! Think I might get a pedicure this afternoon. Need ice for my chest and called Mary and left a message. My mom called yesterday. Very good. Told her she was learning fast!

The Second Part of BC

I am having my second surgery Monday morning. Dr. McFall is removing 4 more lymph nodes and microscopic calcifications. The expectation is that the lymph nodes will be clear. Two weeks of healing and then I will be on my way to the Arizona Breast Cancer Clinic for 1 week of targeted radiation therapy. YAY!!!!


But first I have stuff to do. Meeting a girlfriend this afternoon to see the movie Eat Pray Love. Pick up another girlfriend tomorrow at 5 am to support the Lake Meridian Triathlon put on by Raise the Bar. I signed up before I knew I was going to have surgery, and the oncologist at Seattle Wellness thought that doing a tri the day before surgery was not the wisest thing to do! Oh, well, next year. At least I get to yell a lot!

Second Surgery - From Facebook

The doctor in Arizona was charming - even to making sure sure my birth date was correct because I certainly didn't look 57 :)) He also said he had no problem giving me the radiation I wanted - after all, he is the one who pioneered this technique and the size was not an issue for him. He also praised my surgeon for her superb job leaving him the markers he needed to see where to go. He ordered a post-surgery mammogram to make sure all the calcifications were removed. He also strongly encouraged me to have 4 more lymph nodes removed and tested 'just to be sure" there were no cancer cells. And he also talked with my surgeon to explain all this. He made me feel like it was all about me! (He also hasn't been married all that long - we had a great discussion about how hard it is to find a new mate at our age!)
The new mammogram showed several calcifications the size of pin heads. Those need to be removed. Removing four nodes will not impact me as far as lymphedema goes (swelling and pain and weak arm that is a common side affect of lymph node removal). Surgery is scheduled for August 23 at Valley.

Two weeks after surgery, (assuming the nodes are cancer free, which they are expected to be because of the pathology) I will fly to Phoenix and begin radiation - 5 days, twice a day, targeted to the place in my breast where the tumor was, no side effects - then I'm done! I should be home around September 20.

So my questions were:

My petscan said I had no cancer cells, why remove any more lymph nodes? Answer: Because no technology surpasses actually looking at the nodes through a microscope. The petscan cannot see microscopic cancer cells.

Why will removing four nodes make everyone happy? Because that is the standard of care (sorta!) when you have one positive sentinel (the leader of the pack) like I did - the doctor in Arizona wants to make sure I am eligible for the radiation he will do and my surgeon agrees.

Why remove those calcifications? Because my cancer was found inside calcifications, so it is not unusual to remove any left behind. Cancer or not, I want those out!

I found an article written last December saying a survey showed well educated women who live alone are hardest hit emotionally by breast cancer. That is why you (especially you) are so vital to my success in getting though this in one healthy piece - thanks for being there for me - I love you all - and I am so fortunate!!

Trying to find the right treatment - From Facebook

Okay, it has been a month since I updated you, and I realize that is too long! But there really hasn't been that much to report, because all I have been doing is getting info about the treatment menu. I got scared a few times (like when an oncologist told me I had to have all my lymph nodes removed before she would treat me) Or when another doctor told me I was "off the reservation" because I wasn't following the 'standard of care' - What I have learned from deep inside is that the only person who knows what is best for me - is me! And my surgeon :)))

I have a great surgeon who explained to me that doctors have a cookbook and I wasn't following the recipe. She reassured me that my pathology (another new word in my lexicon!) indicated no other lymph nodes need to be removed. I have a greater fear of what radiation and chemo and drugs will do to my body than I do of a cancer reoccurence. The statistics do not make it an imperative for me. I know lots and lots of women who have traveled that path just fine (my neighbor is doing well with that choice) but I just can't. Unintended consequences.

I've decided to have a mastectomy instead. I had totally disregarded that alternative, who knows why - but then the thought that I can have perky breasts again and insurance will pay for it - well! How cool is that? And I don't have to do radiation! I have continued to alter my eating - today I bought this unbelievably great blender so I can eat my raw food and fiber and I don't have to cook!! YAY!!!! As to when? Don't know. Still have some more tests (genetic stuff) and will go from there. Thanks to you all for your love and support - It is as necessary to me as breathing is - I'll let you know sooner than a month! - love, cathy

After Surgery - from Facebook

Cathy Christian June 8 at 8:30pm

So ... I keep learning new things! Just because the lymph nodes are clear when examined during surgery doesn't mean they are totally clear - until all the lymph node is examined later ... and the pathologist discovered my lead lymph node did have a small (.5cm) bit of cancer. It is so small it was easily missed and unexpected, otherwise my surgeon would not have told me with confidence the nodes were clear after surgery. She did say she felt there was only a 2-3% chance of any other nodes being involved. She did admire her work, though, as she cleared me to start training again - she did a great job considering how much she removed! This surgeon is an artist and a seamstress in her spare time, which shows in her work. I am actually cancer-free - I need to figure out the kind of energy to expend on remaining that way. I actually think of myself going to the Costco of cancer treatments - there are so many to choose from - some are packaged in small units (like the supplements and drugs) and some are packaged in big doses (like chemo and radiation) - It's probably going to be like eating your way through Costco - I'll try a bit of supplement and see about the radiation and maybe I'll taste the green food section ... I see 3 oncologists this week to help me navigate the aisles... I'm in a really good place and so fortunate to have the support I do - it is imperative, let me tell you!! It is impossible to go through this without all of you in my life! Love to you all --

More second month - from Facebook

Think of your breast as a clock that someone is looking at - this is how it is marked in the world of breast cancer. So my first biopsy a month ago showed, at 11:00, ductal carcinoma in situ (DCIS) - ('in situ' means 'in place') - there are cancer cells stuck in a milk duct and they haven't gone anywhere. Homebodies. (There is not yet a test that will tell if they will burst out and go traveling via the lymph glands to the rest of the body - or just stay home. That test is on the foreseeable horizon, though.) Treatment for that is the same as if you have traveling cancer cells - lumpectomy, radiation, and tamoxifen or something akin to it. (Chemotherapy has never been on the table for me. )


The surgeon at Fred Hutch saw another place on the mammogram at 1:00 that he thought needed to be looked at - hence the MRI and then another biopsy last Thursday. Yesterday morning the surgeon I have chosen - Dr. Tori McFall out of Valley Medical in Renton - called and told me I have invasive cancer cells at 1:00. Yuck.

Interesting combination. Still a lumpectomy, but that will now include a sentinel node biopsy to see if the cancer cells have traveled to the lymph glands. I hope they have not absorbed my love of travel and instead have opted to remain close to home! Treatment options will not be decided upon until after the surgery which should be on May 27, the day after I get home from my week in Hawaii. Dr. McFall said there was no reason not to go to Hawaii, even with the new diagnosis.

I see a reconstructive surgeon Thursday to ensure I get a new 3 inches to replace the old 3 inches! 11:00 to 1:00 is a wide spread!

The good news - I may have moved from Stage 0 to Stage 1, but I will be just fine. I have been off sugar and dairy and eating so much dark green raw food stuff I have lost 5 more pounds and the uniform from RTB I ordered is not going to fit. I am really working on alternative treatments. I will be ready for the Rock and Roll June 26, although the wound has to heal, so it may be July before I can swim. Thank you for all your love, support, and prayers - I hear them, I feel them, I know they are there. This can be scary only if I let it be so. You all are helping me stay on top of this. I need each of you!!! love, cathy

The second month - from Facebook

So the MRI spotted something about 3 inches away from the diagnosed area, but MRIs are notoriously famous for being sooo sensitive that it may be nothing, so an ultrasound is on tap for tomorrow. If nothing is seen, that is good and I get up from the table (well, it's not quite that easy with your breast hanging in a hole). If there is something, another biopsy will be done. Either way, I think I found my surgeon when she mentioned bringing a plastic surgeon on board - It's a 3 inch chunk I am saying good bye to, and youthful breasts or not, 3 inches is 3 inches!! I finally realized that I don't have to make any decisions about treatment until after the lumpectomy. Treatment for Stage 0 DCIS really is about the future, not the present, and I need to pay attention to that fact. Saw a naturopath oncologist and he gave me a prescription for supplements to strengthen my system. I hope to have surgery the first week of June so I can be ready for the Rock and Roll June 26. I only had one meltdown this week and my ex-husband listened patiently all the way through it and then asked me if I felt better - which I did! Thank you all for your energy, thoughts, prayers, love, and friendship. I have felt it all and feel so blessed and very grateful.

Frantic First month - from Facebook

I had my first appt with the surgeon yesterday at Seattle Cancer Care Alliance - it was 4 plus hour experience - they use a team approach at Fred Hutch, so I met with not only with the surgeon (Ben Anderson, he is rated in the top 10 breast surgeons in the country), but also the radiation oncologist and the doctor that handles the hormone treatment later (that tamoxifen stuff). It was quite amazing. They even taped everything they said and gave me the tape to listen to again - I think most people forget half of what they are told at a visit like this!
Turns out the DCIS is 'scattered' and just over the standard limits of a lumpectomy, so a mastectomy would be the recommended course of action. BUT, because, as the surgeon said, I have 'youthful' breasts, (that's the nicest thing a man has said to me in a while!) he thinks he can do the lumpectomy - he said he would give it the 'old college try' - providing the MRI that I have next week shows no other calcifications outside that limit. Surgery will be the first week of June. I told him I need to be ready for the Rock and Roll on June 26, and he very nicely said that probably wouldn't be a good idea - but I'll see when I get there.

I've been doing a lot of reading on alternative therapies - and not having radiation or that drug treatment. Since I think this is an aberration in my life I'm handling it as such - I am also going to the Seattle Cancer Wellness Center - they are naturopathic oriented.

I am so very fortunate, although I admit when I heard the word 'mastectomy' my stomach took a dive ...

Breast Cancer Invasion

Working from home. Cell phone rings. Woman from Valley Breast Center. "I'm sorry to tell you you have ductal carcinoma in situ" - she starts to spell it, I am already on Google and tell her "I've got it", meaning I already see the sites on DCIS. She tells me to talk with my primary care doctor and she will call next week. She hung up. I started reading about DCIS.

I'd had 2 biopsies the previous month, after a suspicious mammogram. But I'd had the same thing in 2002 - same breast, suspicious mammo, biopsy, result? - just calcifications. Never a thought this time was any different.

I am pretty happy with my life. I have a great job as a writer for Boeing. I have a wonderful network of girlfriends - most are involved with Raise The Bar, a multisport club in Covington - I do triathlons and half marathons - I'm no speedster, but I pride myself on finishing a race. I have a wonderful ex-husband who is married to a wonderful woman who considers me family. I live alone and drive a BMW convertible - all that is missing is a lover, and all my friends have their eyes open for me!!

There you have it - my life BC. Actually, add in the BC and this is still my life - and that's a good thing!