Thursday, March 26, 2015

The Saga Continues

After that last post things got kind of scarey. The following day when I saw the surgeon she did another ultrasound and thought she saw another suspicious area near the tumor as well as something near the nipple. She then proceeded to say if she had to remove that as well I would be so disfigured I would probably prefer to have a mastectomy. She decided to set up a consultation for me the following day with a plastic surgeon to discuss mastectomy and reconstruction, a geneticist to take a history and probably order genetic testing, and the oncologist to talk to me about chemotherapy.
That all really knocked me for a loop. I had been expecting we would discuss lumpectomy and radiation, but never had I considered mastectomy and chemotherapy. I left that afternoon very worried and upset.
I had told Billy not to worry about going down with me but after all of that I knew I had to have some support. I called him crying and he said he would come down and be with me for the rest of the time.
The next day we saw all those people. The plastic surgeon told me all about how he could rebuild my breasts after I had one or more removed. He would have to surgically alter the right one to match the left even if I didn't need to have it removed.
The geneticist had my blood drawn to test for all of the cancer markers since there is just about every cancer possible on my mother's side of the family.
The oncologist told me with the type of cancer I have chemotherapy would be necessary even if my lymph nodes were clear.
All of my worst fears were suddenly materializing.
The only bright spot in that day came when I met with the naturopath who works with the oncologist. He was very positive about the program I had put myself on to try to help my body heal itself and even suggested a few other herbs and supplements he knew to be therapeutic for cancer.
The surgeon had ordered a biopsy of the other areas of concern she saw. It was to be done Friday morning. When I went to have the ultrasound biopsy it was determined that the area in question was too small and hard to find for an ultrasound biopsy, and I would need an MRI biopsy instead. Because of various reasons, all of them technical, the radiologist and I decided not to do that at that time. I was really feeling overwhelmed. My world had been rocked completely out of its orbit.
We came home and decided to wait a couple of weeks until the genetic tests were in and let our brains digest all we had been told.
I should say here that everything we were told was based on studies about other types of breast cancer because the kind I have is so uncommon there haven't been any studies done on it specifically. There is a lot of controversy about how aggressive treatment needs to be.
After coming home I decided to see the surgeon here one more time just to get closure. I had pretty much decided to have whatever treatment I would get at CTCA in Newnan.
When I saw the surgeon in Rome he disagreed with pretty much everything they had told me at CTCA. He believes the tumor may actually be DCIS and I may not even need a lymph node biopsy. He also believes the most treatment I would need after surgery would be radiation; certainly not chemotherapy. So I now have two very different plans suggested. It seems to me that one is a minimalist approach where we do the only thing we are sure needs to be done. After the tumor is out it can be examined, categorized, and the next step will then become evident. The other plan is we assume the worst and do it all. At the moment I am feeling strongly that I prefer the minimalist plan.
The surgeon has assured me if the tumor is not DCIS as he suspects, or if I feel like I need some more advice, he will send the tumor or it and me anywhere I want to go. Apparently Sloan Kettering is the number one hospital for breast cancer in the country.
I, of course, am still eating raw and living food, still doing enemas for cleansing, and still hoping, as we all discuss and debate what my treatment will be, my body is launching all out war on the cancer in my breast. It would be wonderful if the damn thing just disappeared while we try to decide how to fight it.
The next time I post I will probably have made a decision about how to proceed from here.
Thanks to all for your prayers and well wishes.

Tuesday, March 17, 2015

Eating raw and emotional healing

So... I have finished my 10 day program at the Living Foods Institute in Atlanta. I must say it was the most incredible experience I have ever had. For 10 days I did enemas morning and night, ate only live raw food prepared deliciously, and saw the most wonderful therapists ever. Can you tell I enjoyed it?
We made food every morning; dishes like raw hummus, guacamole, lasagne, spaghetti (zucchini noodles), lots of salads with sprouted beans and seeds, wheatgrass juice every morning, even cookies and crackers made in a dehydrator. I have never eaten so well. I lost over 10 pounds without ever being hungry. We had classes every afternoon on cleansing, chi gong, various mind body therapies, and lots of gratitude circles. I made some amazing friends and heard unbelievable stories of healing.
Today is my 59th birthday and I feel better than I have in more than a decade. I have had no sugar, no alcohol, no gluten, no refined foods, and very little cooked foods for the last month.
I am in Newnan, Ga. at Cancer Treatment Centers of America, where I had my first day of a 3 day evaluation to decide on a treatment plan for my cancer. This hospital is like a 5 star resort. I got there this morning at 8:00, waited about 10 minutes, then went to a room in the outpatient clinic where I stayed for 2 and a half hours while various people came to me to take my history, draw my blood, examine me, etc... Did you get that part about them coming to me?
I left at 10:30 to go and kill some time until lunch. Shortly after I left the nurse who drew my blood called me to tell me my blood sugar was low and to be sure I felt all right and was coming back to eat something soon.
I returned at 11:30 to get a very large salad of mixed greens, carrots, red onions and spring onions, all of which were organic. I also got a piece of grilled salmon and half a sweet potato. 2 bottles of water completed my Free lunch. Yes, I said free. Patients eat free and their caregivers get a 60% discount. I saw a movie and returned at 4 to eat basically the same thing again.
I am now back at my hotel room (paid for by the hospital). Tomorrow I will meet with a mind body therapist, have an EKG, have a patient advocate consult as well as a nurse consult and a surgical consult. On Thursday I will meet with a naturopath, a nutritionist, another nurse, and the oncologist. At that time my "team" will tell me what they recommend my plan of action should be.
I will then go home and talk things over with my husband and decide what I want to do.
I would strongly urge everyone who knows someone with cancer to tell them to contact this hospital group. They fly people in from all over. I saw their stretch limousine bringing someone from the airport today. I feel very fortunate to have good health insurance that allows me to be here to receive treatment. I will continue this blog as my journey continues. Thanks for all the positive thoughts, the prayers, and support. I am truly blessed.

Friday, March 13, 2015

I figured out what I have.

Well, the next chapter in my odyssey began with me visiting my General Practitoner who I like and respect very much. I had looked up all of the tests they had done on my tumor and figured out what information each one gave, which was mostly what kind of cancer I didn't have. I asked my doctor about "cancer of unknown origin" and she gave me a printout of current articles about it. Luckily for me, she also "picked up" on a word in my diagnosis that I had mostly ignored. The diagnosis read "Adenocarcinoma Carcinoma of the Breast with Apocrine Features". She looked up the word apocrine and helped me determine that it basically meant cells you would find in sweat glands.
This was key in me figuring out that I did not have a cancer of unknown origin, which gave prognoses of 6-12 months for the most part.
When I finally looked up Apocrine Adenocarcinoma of the Breast, I found that there were a number of characteristics to be glad about. According to peer-reviewed articles I read, this type of cancer only occurs in 1-4% of breast cancers, it is thought to be unlikely to metastasize, and also unlikely to recur. It appears to start as DCIS, ductal carcinoma in situ, meaning contained entirely in a milk duct, then is taken on by apocrine cells and slowly grows from there. Unfortunately there wasn't a lot of data because it is so rare.
When I saw a surgeon the following week, he confirmed this for me, ordered an MRI of both breasts, and then said if nothing further showed up on the MRI, he would do a lumpectomy and remove the sentinel lymph node (the one closest to that breast), then send me to an oncologist.
So I now knew I didn't have something horrible that would kill me very soon. So what next? Next for me was to consult everyone I knew and respected who I thought could advise me on what to do to get better.
One of these people, a healer I have known and trusted for many years, advised me to contact the Living Foods Institute in Atlanta. After perusing their website I called the director to find out about going to visit them on one of their free days to learn about what they offer. She helped me decide that I should come to their very next 10 day program before having surgery or any other treatment.
At this same time, after looking around at hospitals and what they offered, I became intrigued by Cancer Treatment Center of America in Newnan, Ga. Besides having doctors with most incredible bios, they also offered alternative therapies like acupuncture, massage, naturopathy, etc...
I made plans to go there to be evaluated as soon as my 10 day program in Atlanta was over.
I must say one more thing about my journey at this time. Although I know a lot about nutrition, exercise, and health in general, I had not been taking care of myself. I drank alcohol nearly every night, was eating way too much rich food, and was worrying about those things as well as the weight I had gained because of living my life that way.
My husband and I went on an overnight trip to Savannah the weekend after I got the diagnosis. That night in Savannah, February 15, I had the last alcohol I would consume until I am well. I also ate the last meat (seafood) or cooked food I would eat for a very long time.

Thursday, March 5, 2015

My diagnosis

My name is Sandra. I am 58 years old.
For many years I have had "abnormal" mammograms. The first time I experienced this was in 2009. The radiologist told me he saw clusters of calcium deposits in my left breast. He advised me to have a stereotactic biopsy which I did right after the mammogram. The report was atypical hyperplasia and I was advised by a surgeon to have further surgery to check for DCIS. For those of you who don't know, DCIS is ductal carcinoma in situ, which means the malignancy is completely contained in a milk duct of the breast. This is also known as Stage 0 breast cancer. It is well known that this type of cancer rarely metastasises. Many women choose to have it removed without any follow-up treatment like radiation or chemotherapy. I asked the surgeon what he would recommend if he found DCIS. He said radiation was what he would advise. I told him I wouldn't have radiation for DCIS because if I ever got "real" breast cancer I wouldn't be able to have radiation on that breast again. (Again, in case you don't know, you can only have radiation once on any area of your body.)
I refused to have the surgery but agreed to have a follow-up mammogram on that breast in 6 months. In the years since that first biopsy I have twice been advised to have biopsies for clusters of calcium deposits but have refused. For the last 2 years I have had screening mammograms once a year and diagnostic mammograms of my left breast in between.
On February of this year, 2015, I went in for my 6 month diagnostic mammogram of the left breast. The radiologist said he saw a shadow on the films that he felt needed further clarification. He ordered an ultrasound to be done immediately. 
The ultrasound showed 3 rather large cysts and an irregularly shaped mass. I was watching the ultrasound screen and knew this was something that should not be there.
The radiologist wanted to do the biopsy right away but I chose to wait two days. I had plans I did not want to cancel and I needed the 2 days to digest what was happening to me.
I had the biopsy 2 days later and received the results by phone the following day. The PA who called me said I had an Adenocarcinoma of the Breast. She said she had never seen that particular diagnosis so she couldn't really tell me much about my cancer.
I picked up my biopsy report three days later and had a scary conversation with the PA. She told me again she really didn't know much about it. She had no idea what the various stains that were done meant. When I asked if it could be a metastasis from cancer somewhere else she said yes it could be. She told me I should consider getting genetic testing for the "breast cancer genes". When I asked why  I should do that before following through with this particular problem she said, "If you do have a
genetic predisposition to breast cancer you might want to consider having a double mastectomy."
Wow! I wasn't expecting that.