A Short Return For A Breast Cancer Update - Ellen's Tastes Blog at Allrecipes.com - 277096

Ellen's Tastes

A Short Return for a Breast Cancer Update 
 
Jun. 10, 2012 12:12 pm 
Updated: Aug. 5, 2012 10:45 am
While I was searching for a recipe I'd posted here, I noted the number of people who were following my blog on breast cancer until I moved it to www.breastcancerredux.com. Since it's possible, even likely, you might not have wandered off this lovely site, I figured I'd give you a quick update for those who are interested.

During our winter stay in Florida, I had one of those experiences no one wants to have. I was MISdiagnosed with an aggressive and deadly form of breast cancer. It took over a month to confirm that the diagnosis was wrong and that — in fact — I didn't have any cancer of any type anywhere in my body. The surgeon who caused the ruckus was fired (by me), and I returned home to the surgeon I've been working with since 2000 with each episode of breast cancer. She deserves to be named, because I couldn't recommend her higher: Dr. Rebecca Yang at the Lahey Clinic in Peabody, MA.

I had an appointment with Dr. Yang within a month of returning home. In preparation of that meeting, I'd researched mastectomies, tamoxifen, and further research on Arimidex. I learned there's about a 25% likelihood of life-long (and very painful) pain following a mastectomy, especially if you've had surgery on the breast before. Well, that was a horrifying idea, so I ruled it out. I ruled out tamoxifen and arimidex (again) for reasons I haven't been comfortable with them in the past: long term side effects. You won't find a lot on this unless you track down sites where patients on these treatments are posting their difficulties and agonies. I printed them out, in a stack that was nearly half an inch thick, and brought them with me to my appointment with Dr. Yang. After she checked me over, and pronounced me healthy, she asked me to dress so we could chat.

During our chat, I showed her the papers I'd brought and she asked if I'd leave them for her. I told her I wasn't sure if she'd want to read through them, and she said she "absolutely wants to read them." How endearing.

We discussed my concerns about getting one or more mastectomies, and that it didn't seem wise for me to go through it at this point in my history. To my surprise, she completely agreed. She also understands and supports my alternative approach to treatment, pointing out to me that I've had three primary (unique) breast cancers and despite turning down "standard treatment", I'm still alive and well. In her words, "you obviously know your body better than anyone else."

We met for longer than we have in years, swapping thoughts about our theories of how breast cancer starts, and she told me that, at this point, I know as much as she does about treating me. There are very few women who have had as many breast cancers and I have, have never had chemotherapy, and are still alive. 

I told her I want to establish a relationship with a pain management specialist, if and when I need that. She said she thought I was wise. I asked what might tip me off if my most recent breast cancer metastasizes and she told me it usually goes to the bones, and that I'd experience aches in my bones that don't go away. I cried a little. So did she. We'd reached a common agreement and, despite the circumstances, it was a respectful (and loving) meeting.

When I left her office, I felt she'd given me a completely unexpected gift, which was permission to regain my footing and my balance in dealing with my body, despite the very bad misdiagnosis I'd been through. As a result, I've regained my sense of peace, am eating as best I can, and will continue to get mammograms and (if needed) surgeries to remove any new cancers that might show up.

Other than straining my low back (a yoga goof) I'm doing very well, and life feels normal and happy. My days are comfortable. I'm enjoying my moments as fully as I can.

Life goes on... happily.

I've developed some new recipes, but don't have them readily to hand. I'll post them when I do. In the meanwhile, I hope all of you are well and enjoying your life as fully as possible.

Robin


 
Comments
Jun. 10, 2012 12:58 pm
I'm very sorry for the fact you have to have the burden of having cancer on your shoulders. I'm glad you are feeling beter and enjoying life. Best wishes.:)
 
Jun. 10, 2012 3:18 pm
Hi, Robin! It's wonderful news that you have brought to us! Congratulations! We have a little present for you. You were remembered with a luminaire at the Relay we participated in this weekend, so your great news is even more special!
 
Jun. 10, 2012 4:48 pm
it's good news, but I always look at things negatively. so now you got 50% chance one was right, and one was wrong. Who is right, the first or second Dr. I hope for you it was the second Dr.
 
Jun. 10, 2012 4:56 pm
Mike, that's great! Way to go! Robin, that is a very well-written blog! Thanks for telling us!
 
Jun. 10, 2012 5:18 pm
King, it's not a matter of which doctor is right or wrong. Robin's decision is based on much research and discussion with professionals at many levels. As of now, her current doctor is not claiming to be right or wrong but, instead, is going to work with Robin toward a longer productive life. I'd say that doctor is one he## of a doctor just as Robin is one he## of a courageous lady!
 
Jun. 10, 2012 5:28 pm
I agree Mike. My mom survived Uterine cancer back in 1962, and breast cancer 5 years ago with a double mastectomy, and there are many men, and women who have fought and won this battle. On the other hand My very best friend died when we were 9 years old of brain cancer that's something I will always remember.
 
Jun. 10, 2012 5:33 pm
My brother is now 15 years from diagnosis with multiple myeloma. He is very moderate in food, very over-productive in work (work = life to him). He listens only so much to the doctors, taking advice, but not dwelling on it.
 
Jun. 10, 2012 6:28 pm
this is a inspiring song "Holding On - Jamie Grace" http://www.youtube.com/watch?v=-hSyfGuDtgY&feature=fvwrel
 
Jun. 11, 2012 5:44 am
Great news Robin! Keep us updated.
 
Jun. 11, 2012 7:05 am
Ellen, thank you very much for posting a blog! I ALWAYS forward to my Lisa because she too has taken FULL charge of her body and heath. Like you she does much research and has good "back & forth" discussions with her oncologist. And, I love YOUR doctor because it is so very rare that a physician will say " you know your body better than anyone else." Intuitively we know when something's wrong. We just need to listen and than be courageous enough to act. I wish you would post regularly on AR about your journey. You are inspiring! Thank you Ellen!
 
Jun. 11, 2012 7:10 am
Aloha Robin, I thought of you this weekend while attending the relay for life along with other AR peeps. It is so inspiring to come back here and find your good news. I know you have had a long journey, but I hope you know that you give us all hope and inspiration on how to live with this disease. Warmest aloha, Julie
 
Jun. 11, 2012 2:23 pm
You remain in my prayers. I find your story so inspiring on so many levels. Despite what they would have you believe, doctors do not have all the answers and medicine is not an exact science. Thanks for your willingness to share your journey with us.
 
Jun. 11, 2012 2:57 pm
Thank you ellen! Your update is inspiring, wonderful news! You were with us on our walk!! Praying for your continued success! XOXOXO
 
Jun. 11, 2012 6:11 pm
I'm glad you are doing well. It is always such a wonderful feeling to find a dr. that will listen to you and respect what you have to say. I'm glad you have one!
 
Lela 
Jun. 12, 2012 8:05 am
Ellen, it is so important to get a second opinion. Walk tall and may you continue to enjoy good health.
 
Jun. 12, 2012 3:52 pm
What a wonderful group you are. Thank you! Being part of the reason for your walks and other efforts is so very touching. Although I will post most of my breast cancer experiences on another blog, I promise to keep you posted. (What a fool I'd be to walk away from all of you!) Big hugs to each of you. Mike: did you finish the Emperor of All Maladies? Did you enjoy it? Robin
 
Jun. 12, 2012 5:50 pm
Robin, I made it through page 77 when I became distracted by a thing called spring. I promise you, I will continue the book and report my opinion to you. I know, I could have used some of it's knowledge this past weekend when I displayed some ignorance.
 
Mangel 
Aug. 5, 2012 10:45 am
So glad to hear you're doing well! I'm so sorry you had to experience such a horrible misdiagnosis, but your fighting spirit has again served you well. Much love and prayers for your continued recovery:)
 
 
 
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ellenmoriah

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About Me
I've loved cooking since I was a kid, and still have my first (very battered) cookbook. Other than cooking, I adore interior design, writing, and playing bridge. Oh... and tasting new wines (or old favorites).
My favorite things to cook
As I've grown older, my tastes and philosophy have changed. I now use organic ingredients whenever I can, and I prefer using unprocessed ingredients.
My favorite family cooking traditions
Well, my mother (bless her) had 8 people to feed, so she made foods that were easy to prepare. My favorites were her baked ribs with barbecue sauce; english muffins topped with cheese, tomato, and bacon, and then broiled; and spaghetti noodles with tomato soup and cheddar cheese stirred in. I wouldn't make these dishes today, but they're full of fond memories.
My cooking triumphs
Adding orange juice to diced tomato sauce • Adding Cointreau to fresh fruit salads or a chocolate sauce • Adding tequila and bittersweet chocolate to chili • "poaching" salmon in orange juice, sprinkled with Old Bay and tarragon • adding cidar vinegar and soy sauce to vegetable soups • adding fresh mint to steamed red potatoes • knowing how to bail out a botched dish (example: over-steamed broccoli mashed with bleu or swiss cheese isn't nearly as bad as over-steamed broccoli on it's own).
My cooking tragedies
Over-steaming broccoli and most any other veggie... and a lasagna that was so loaded with oregano, no one could eat it.
 
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