After all that happened this week, I am exhausted. I think it’s time to take another nap.
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After all that happened this week, I am exhausted. I think it’s time to take another nap.
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I am back after a few weeks of off and on again internet and catching up on your blog! I hope you feel a little more rested today! Sunday…a day of rest! But I also know that you plan ahead and are probably looking at more meals to freeze ( I think John and Zoey will surprise you with their creative talents in the kitchen), weeds to pull (hire Zoey) and finishing up your work (glad you have a partner/friend who can help)! If you are a list maker…I hope the list is on the counter for the family to see so they can help cross things off for you!
A mastectomy on the horizon and then a reconstruction… Many hugs for you friend! Once again, I am impressed with the specific information about “your cancer” and the details that are shaping the path that you will be following in the weeks and months ahead. The battle plan is shaping up! Rock on Elizabeth!
Hi Karen! I do feel A LOT better today. And yes, I am back to freezing stuff so that John doesn’t go crazy taking care of everything. Zoey has another week of All City Band, which involves LOTS of driving around for him not to mention that Zoey is not always the most patient car passenger. But despite the inconvenience of the practices (6-9 pm, three times a week and until 10:30 pm on Thurs), the parades, etc., this band has been a blessing for us. Zoey is having her best summer in a long time.
Thanks for the hugs and virtual hugs are perfect for the next few weeks, I think. I am also amazed by the degree of specificity in my treatment plan. I probably already mentioned this many times, but Nancy had told me early on that I would undoubtedly be getting surgery but beyond that would depend on the particulars of my disease.
The multiple surgeries has been a bummer but I think the decision-making based on available information at each step of the way was sound. I did some research into the measurement properties of the various imaging techniques (MRI, PEM, standard mammography, and ultrasound) and based on their respective measurement sensitivity, one or more of those techniques “should have” found the other invasive cancers as well as the DCIS. But none of them are perfectly sensitive and unluckily for me, they all missed everything except the original primary tumor. But then again, I am even luckier, given all of this that someone picked up the primary tumor, only 8mm in size, on a screening mammogram! Further, if my invasive tumors were larger or if the DCIS were higher grade, it would have been more likely to show up on imaging. So part of the reason for the diagnostic challenges has been due to the early stage and low aggressiveness of the cancer, which means that long-term things are still looking up.
Finally, I also did some research on rates of contralateral breast cancer in women with known cancer in one breast. I may blog about it later. Dr. Beatty did not recommend bilateral mastectomy but a couple of weeks ago, he did say he would do it if I wanted him to do so. I was relieved to learn that the rates of contralateral breast cancer are low for women like me. Further, I know that my medication treatment will further reduce my risk. I’ll be doing my research on meds in a couple of weeks because even though I’m probably not going to need chemotherapy, I will undoubtedly need endocrine therapy for the next few years and for some, this is no walk in the park. (Especially since Dr. Rinn’s druthers would be to put me in menopause for a couple of years, which chemo would have also done but permanently.) For now, I’m focusing on one step at a time.
I’m so glad that you got to take a cool vacation but also happy to have you back on the blog!
Elizabeth,
I love how you are taking control of your diagnosis. Researching and gathering information as your story unfolds. How many people educate themselves on the various imaging techniques and their measurement sensitivities? I can hear the wheels turning in your head.
There is the science of medicine and then there is the art of medicine. The machines and tests continue to develop and thank heavens for that but I also see the art in your diagnosis. The radiologist whose trained eyes, years of experience and possible conferring with partners identified your “early” stage cancer. I wonder if the radiologist ever hears about the outcome of a patient, such as yourself, and how the story plays out? Pat on the back to that MD who found it early!
I am glad you do your homework and Dr Beatty put a big decision in your lap regarding a bilateral mastectomy. He did not recommend but would do it if you wanted it…So glad the rates of contralateral cancer are low in your case. Years ago, we bought property on a lake…and it had 2 unique trees growing. Both were Pacific Yew! Research shows the bark of this tree contains the highest concentration of taxol which is one of the older meds used in post surgery treatment of breast cancer. It is the med my mom took for years after her mastectomy. A condition of mine for building on the site was to preserve those 2 trees. Unfortunately, one could not be saved but one tree remains, a very tall one, right by the kitchen window… this tree keeps the memory of my mom alive for me!
So research away on these meds and I hope this decision is an easy one to make!
Thanks, Karen. I am trying to get information without making myself crazy. I see some folks trying to out expert the specialists and I think that is a crazy making goal. But I do know that I have a healthcare and research background that is helpful in understanding my own illness. And so far, my physicians’ recommendations have been very much in line with what I am reading so that is reassuring.
What a powerful story about the trees on your property. I’m sorry that your mom is no longer with us. I bet you brought a lot of joy to her life.
With your professional background, Liz, you probably have better access to research info than other folks as well as a greater understanding of the lingo. I’m so glad to hear what a great advocate you’re being for yourself…in addition to having a good medical team behind you.
I am fortunate to have the background that I do. The research lingo is know to me but the medical lingo is not. So I look at general information websites like Livestrong or the American Cancer Society to get the vocabulary words and then to Google Scholar (free and surprisingly high access to full text articles) to get the research. It’s probably better that I no longer have university library access since I would end up looking at 5,000 articles. But again, I don’t have knowledge of the relative quality of different medical journals or knowledge of the names of the major researchers. I use my research to better inform my questions of my physicians as well as to make decisions. As I mentioned to Karen though, I am careful not to try to “out expert” the experts. There’s no way for me to do that and I’ve seen parents do it in my practice and it is almost always counterproductive. And I’m not talking about questioning my judgment or offering different courses of action. I’m talking about parents who come in and believe that they know more than I do because they did a bunch of Googling and read a bunch of books. So, I do respect specialists a lot unless they are illogical, in which case I find a new physician. But I do have a lot of respect for my medical team and I think that plus my own research make for a very fruitful combination.