Archives for posts with tag: breast cancer treatment

The U.S. has some of the best cancer care in the world and I live in one of the areas known for excellent treatment. However, accessibility to healthcare is not consistent. I was treated and continue to receive follow-up care at the Swedish Cancer Institute, which is part of Swedish Medical Center.

I am really lucky. My physicians, from my internist, to my breast surgeon, to my medical oncologist, are all top notch. The staff at my cancer center are excellent. Although hospitals are no place to rest, the care I received at the hospital during the four surgeries I had there, was exemplary whether during the day or in the middle of the night. My healthcare providers communicated with one another. I had access to my healthcare record online but I was not responsible for managing the sharing of those records. Last, but not least, everyone I interacted with was friendly and polite, with little exception.

Being cared for by competent and professional people within a functional healthcare system was one of the best experiences I’ve had in my life in terms of feelings cared for. I am a caretaker. I started babysitting when I was 10 years old, I am a mother and a wife. I am a healthcare provider.

I was active in my healthcare but I had a lot of trust in my physicians and followed all of their recommendations. It was always made clear to me that my physicians were making recommendations but that the ultimate decisions were mine to make. They were clear, however, about the potential pros and cons of each treatment option, which is part of a healthcare providers job as well as of their legal and ethical responsibility to patients.

Cancer treatment is exhausting. Although I.V. chemotherapy and radiation were not recommended for me, my treatment was still taxing. The main part of my treatment took over two years, which involved nine surgeries, two years of Lupron shots, ongoing Tamoxifen treatment, countless blood draws, scans, pathology reports, and anywhere from 3-5 doctors’ appointments per week. Although I took off time to recuperate from surgeries, I worked throughout that time and had family responsibilities, most notable helping rear a teen daughter who was having one Hell of a tough time with life.

Because I had excellent care, I was able to relax at times and let my caregivers take care of me. I could lie in the ocean and float like a jellyfish, trusting that the surf would take me where I needed to go. I don’t recommend the “jellyfish method” as a general way of getting through medical treatments.

Exhibit A. The surf took this jellyfish to land.  A jellyfish can survive out of the water for less than an hour. They can’t swim or move themselves. It takes well longer than an hour for the tide to come back in to where the jellyfish have been stranded.

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My friend, Beth Gainer, MA, had a very different cancer treatment experience. Acting like a jellyfish even for brief periods could have threatened her physical well-being and most certainly damaged her psychological health. I’ve been reading Beth’s blog, Calling the Shots, for a number of years now. She has bravely waded through rough waters inhabited with unbelievably rude physicians and unhelpful administrative staff. Fortunately, she was able to secure some physicians who, as she says, she “loves”. For this, I am very grateful but I am angry and sad about her other experiences. Cancer is hard enough!

The path to good care was not easy or smooth for Beth. At times, advocating for care in a dysfunctional system was downright ugly. But she did it! Using her experiences as a guide, Beth has written, Calling the Shots in Your Medical Care. This short book contains practical tips for assessing the quality of your healthcare providers, suggestions for speaking up, and finally, strategies for being “a bad patient”, one who speaks up and forcefully, when necessary.

Just as there is no one way to navigate through cancer or any other serious illness, there is no one way to navigate through your healthcare. But if you find that you have lots to say and don’t feel empowered to say it, this is the book for you. Beth found her voice in her cancer treatment. You can, too.

After a couple of recent inquiries about my physical health, I realized that I have not provided an update for some time. So I will take out a bit of time from my concentration on my emotional and cognitive health (a post about my challenges with attention, organization, and memory is forthcoming) and focus on my medical status.

Medications

I started taking Lupron injections last summer. I now get one every three months and will continue to do so for a total of two years. Lupron “shut down” my ovaries by disrupting the signal between my pituitary gland and my ovaries. So my ovaries think my days of monthly cycles are over and done with. I am currently infertile and functionally in menopause. However, Lupron induced menopause is reversible. Once I stop taking Lupron, I may start my cycles again and go back to being peri-menopausal.

In October, I started taking tamoxifen, another hormone blocker. I will take that for a long time. At the time of my diagnosis, the usual treatment protocol was to take it for 5 years. Subsequent research suggests that 10 years might be better. I’m not going to worry about it because we’ll have more information by the time that decision needs to be made.

Other than those stupid hot flashes, occasional foot cramps, and having to work out harder to maintain a healthy weight, I have been very lucky and tolerated these medications very well. Knock on wood.

Scans

I have an annual diagnostic mammogram and an annual MRI, staggered by six months. I had a “clear” mammogram last January. I will have my next MRI in September, six months after my TRAM surgery. (Recent surgery makes it harder to read the images for MRI.) Both diagnostic mammography and MRI missed three of my four invasive tumors as well as a 6cm area of DCIS. A disadvantage of being “young” (under 50) in the breast cancer world is that our breast tissue tends to be denser because there is  higher water content. The water shows up as white on imaging as does cancer. So it’s hard to know. I have also read measurement research on the sensitivity and specificity of breast imaging techniques. Imaging should get considerably more sensitive as I age. However, the specificity of mammography in particular is not great. As you know, there is a high rate of false positives. But that was not my problem. My problem was of false negatives.

Surgeries and recuperation:

As many of you know, I had seven surgeries between 6/27/12 and 3/11/13. I know I mention this a lot. I also know that it is not a race as in she who gets the most surgeries wins! Let’s just say that one of the reasons I keep mentioning it is because I am still trying to believe it. And I kept my sanity that whole time. And I know that many of you out there have been through similar and even rougher treatment protocols. Let’s pause a second to reflect on our resilience. It’s really rather incredible.

Back to me, sorry, I told you that I was going to write a post about my ever-changing cognitive functioning. I had an appointment with Dr. Welk, my plastic surgeon last Friday. Even though I was feeling good and nothing appeared to be amiss with my healing, I was kind of nervous about the appointment as I had not seen him since April. I am happy to report that nothing appears to be amiss.

I am still slightly swollen from my TRAM surgery, which was 4 1/2 months ago. A significant portion of my sensation has returned to my abdominal area. There are no areas that are totally “dead” to heat, pressure, etc. I intermittently feel those little electrical shock sensations associated with nerve regeneration, especially right after my acupuncture appointments. And then after several hours of on and off shocks, I notice that I have more feeling. I just now read a plastic surgery abstract from a very small study of women post TRAM surgery. A good number of them had at least some sensation return. (Yes, it would be better to read the entire article but the journal was charging $30 for the privilege.) I had not expected any sensation to return and so had not mentioned this issue to Dr. Wang. I will talk to her about it next week when I see her. Perhaps there could be some welcome improvement in the “being able to feel stuff” department.

An unexpected positive is the fact that my abdominal strength is much better than I expected it to be. I had a pedicle TRAM procedure which means that one of my rectus abdominus muscles was sacrificed to create a blood source for the transplanted tissue. Microsurgical procedures can be used to prevent this but I was not enamored with the higher rate of complications and failed surgeries. There is a little bit of controversy regarding the pluses and minuses of these procedures but I am happy with the choice I made.

I am seeing Dr. Welk again in October after my follow-up MRI. I may have another set of plastic surgeries, which Dr. Welk said could be done in one office visit. (Dr. Welk’s time estimates are like dog years so this means two office visits.) The purpose of the procedures would be to improve symmetry between lefty and righty. But at this point, I don’t have to do a thing and Dr. Welk was very clear that this was a perfectly reasonable option. He provided a range of possibilities including doing breast enhancements on each side, which would involve getting a set of implants. For me, this is a big “no, thank you”. He was fine with that.

Healthcare visit schedule:

Currently, I see my breast surgeon every six months, my medical oncologist every three months, my naturopathic oncologist every 4 months, my Chinese medicine physician every two weeks for acupuncture, and my psychologist every two weeks. And I continue to get a full body massage every three weeks, something I have done for nearly 13 years now for stress and chronic pain management. (I had chronic neck pain for twelve years during my 20’s and early 30’s. It went away after two months of massage.) I typically have 1-3 healthcare visits a week, about half of which are across town or in another city. I am very lucky to have such wonderful care. The logistics, however, contribute to a frequently interrupted life and work flow especially on top of parenting duties.

So that’s the state of the union as of today. I will keep you posted and thanks to all for your continued support and concern.

It is day 6 since my initial acupuncture visit. Time will tell the full story but my hot flash frequency has been less since the treatment. Also, they are more predictable. My first flash of the day is between 5:50 and 6:10 pm. I have an alarm set on my phone to remind me to take a few nutritional supplements (I take most of them in the morning). I find that my 6pm hot flash is a good reminder! I have continued to have hot flashes at night but fewer of them and for the most part they are less intense and shorter. I have gotten one hot flash each night that leaves me in a puddle of sweat but it doesn’t last that long. The intensity of it is actually greater than before acupuncture.

My energy level is noticeably higher this week but this could just be part of my normal post-operative healing process since it has been 5 weeks since TRAM reconstruction.

I have another appointment tomorrow so I will keep you posted. I really didn’t expect to experience any change at this point so I am quite intrigued.

The Weekly Cup of Qi has a post today about what to expect during one’s first acupuncture appointment. It meshes with my first experience exactly so I encourage you to read it if you are interested in learning more about what happens during an acupuncture visit.

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George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

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