The first 7 sessions are a concentrated radiation dose with a machine called "AccuBoost" - your breast is squished in like a mammogram and the boost lasts 1/2 hour. I read a book. Because my surgeon did such a fantastic job and left markers in my breast, I was eligible for this process that focuses just on the cavity. This is like what I originally wanted, the partial breast irradiation, only this is from the outside while the PBI is from the inside.
Then the next 26 sessions are the whole breast radiation. I have had thoughts of not going back after the first 7 are completed - what are they going to do to me if I just don't come back? But I bought myself a ticket to see Cher in Las Vegas after the completion of the whole treatment session, sort of as a present for completing the whole damn thing. A Good For Me! As my neighbor across the street who is also dealing with BC said, radiation is just an insurance policy. Oh, and another neighbor was diagnosed last week. That makes four women in eight houses.
There is a lot of money in the cancer industry - the AccuBoost people give you a plushy pink bathrobe that you wear every day you go to treatment. I may hate the color pink when this blip in my life is done. But I also may love it even more!
And then Elizabeth Edwards died today and I felt sorrow. And then I looked up what kind of breast cancer she had. I bet I'm not the only person who did that.
But I'm happy and working and going swimming in the morning.
Tuesday, December 7, 2010
Monday, November 22, 2010
Update on this trip!
Well, I had it all worked out - get a bilateral mastectomy and reconstruction and be done with it. No radiation needed. But the Universe keeps talking to me and I hope I have finally heard the right words.
Dr. Ben Anderson is the first surgeon at Fred Hutch I saw after I was diagnosed in April. Because Fred Hutch is a ways away, I found a surgeon closer and she did an excellent job. But when I decided to have a mastectomy he is the one who works with the reconstructive surgeon at the UW - Dr. Anderson takes them off, the other guy puts them on. Already seen the reconstructive guy, everything is fine. Dr. Anderson is also friends with the doctor in Arizona I wanted to do partial breast radiation.
So my pre-op with Dr. Anderson was last Wednesday. I expected him to be delighted with my decision. I was wrong. He said I was trying to hit a nail with a sledgehammer by having a mastectomy. All I needed to do was whole breast radiation and take drugs and I would be fine. We can cure breast cancer, he said, we cannot cure metastatic cancer. Breast cancer is the most widely studied cancer, and there are many studies that say if I would just do the radiation I would be fine. He even pulled out how serious the surgery was and how one of his patients was in a walker for 2 months afterwards. I got his point.
That sums up the hour in a few lines. I shed a few tears, promised I would consider it. Two hours later he called me and asked if I would be interested in talking with one of his patients who had just finished radation and was doing well. She was a lovely woman who indeed had no side effects and other than going 33 times she was fine.
So I called the oncologist who scared me away from partial breast radiation and went to see her Friday. She was thrilled to see me. I start the radiation process tomorrow. I'm going to ask her what makes the number 33 magic.
I am sad, I feel like I got beat up to the point of giving in. I just wanted to stand up for myself against the onslaught of fear that the medical community permeates every visit with.
Bu I want to feel joy at this decision.
Dr. Ben Anderson is the first surgeon at Fred Hutch I saw after I was diagnosed in April. Because Fred Hutch is a ways away, I found a surgeon closer and she did an excellent job. But when I decided to have a mastectomy he is the one who works with the reconstructive surgeon at the UW - Dr. Anderson takes them off, the other guy puts them on. Already seen the reconstructive guy, everything is fine. Dr. Anderson is also friends with the doctor in Arizona I wanted to do partial breast radiation.
So my pre-op with Dr. Anderson was last Wednesday. I expected him to be delighted with my decision. I was wrong. He said I was trying to hit a nail with a sledgehammer by having a mastectomy. All I needed to do was whole breast radiation and take drugs and I would be fine. We can cure breast cancer, he said, we cannot cure metastatic cancer. Breast cancer is the most widely studied cancer, and there are many studies that say if I would just do the radiation I would be fine. He even pulled out how serious the surgery was and how one of his patients was in a walker for 2 months afterwards. I got his point.
That sums up the hour in a few lines. I shed a few tears, promised I would consider it. Two hours later he called me and asked if I would be interested in talking with one of his patients who had just finished radation and was doing well. She was a lovely woman who indeed had no side effects and other than going 33 times she was fine.
So I called the oncologist who scared me away from partial breast radiation and went to see her Friday. She was thrilled to see me. I start the radiation process tomorrow. I'm going to ask her what makes the number 33 magic.
I am sad, I feel like I got beat up to the point of giving in. I just wanted to stand up for myself against the onslaught of fear that the medical community permeates every visit with.
Bu I want to feel joy at this decision.
Monday, September 27, 2010
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!!!!!
Sunday, September 12, 2010
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.
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.
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.
Friday, September 3, 2010
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.
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.
Tuesday, August 31, 2010
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???
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???
Sunday, August 29, 2010
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.
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.
Friday, August 27, 2010
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.
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.
Thursday, August 26, 2010
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.
Tuesday, August 24, 2010
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!
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!
Saturday, August 21, 2010
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!
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!!
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
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 --
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 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 ...
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!
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!
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