Which doctor is in charge?
I find myself often wondering, which one of my doctors is in charge? Which one is “the most responsible physician”?
In my case this all gets complicated. I see a lot of doctors and nurse practitioners, across two different systems (Stanford and Palo Alto Medical Foundation). My medical conditions have overlaps, so when one doctor orders something, I’m often having the results sent to other doctors.
My most recent test was a bone scan. This was done as a baseline measure before I start any additional hormone therapy. It was also done because one of the potential side effects of untreated celiac disease is osteoporosis. I figured it would be good to get a baseline measurement. So, when I mentioned my concern to my gastroenterologist (celiac specialist), she placed the order. However, since my oncologist is the one I work with on the hormone therapy plans, I asked them to send him a copy of my results.
Last Wednesday I was up at Stanford yet again to see my surgeon’s assistant. I’ve had persistent pain in my left shoulder almost constantly since my last surgery in March. I’ve complained about it frequently. Of course, this also leads to a bit of a freak out, as the pain is coincidently right where my largest tumor was – so whenever it flares up (like it did last week), I enter a spiral of self-doubt and worry/panic. Is it cancer? There is something wrong! Except, that there is nothing wrong and it looks nothing like cancer. This time, my surgeon’s assistant referred me to the pain management clinic (integrative medicine). There is a theory that acupuncture might help finally make the pain go away, which would reduce this stupid spiral. She also mentioned that she’d pass along the info to my oncologist and psychologist – just so that everyone was in the loop. Of course, this made me feel stupid. I felt a little embarrassed, that this was nothing yet again, and now my oncologist would know that I was in seeing my surgeon’s assistant for nothing. Logical me, knows that it isn’t nothing and that I needed to do it, but still, when it turns out to be nothing to worry about, it makes all the worry seem like a waste.
Later that day, I had to return to Stanford cancer center to pick up a couple of compression sleeves (damn lymphedema). As I was waiting for the nice lady to finish looking things up and find a few things, my oncologist spotted me and knocked on the door (it was locked as someone else was being fitted). He called me over with a comment about “saving him from having to call me” … of course, embarrassed me is in a panic state. Why is he calling me? Boy do I feel like an idiot. Unfortunately, it had nothing to do with my morning visit. My bone scan results came back. My numbers are a little on the low side (I have no idea what they are as the test results haven’t been released to me yet). His comment was “nothing urgent, we are planning for 30 years from now, not 30 days” … so, in order to ensure I don’t end up with osteoporosis issues 30 years from now, I’m to double up on my calcium and vitamin D supplements. All my blood tests indicated that I was fine on both accounts, but apparently, that isn’t translating into bone density. So I’ve doubled up for the time being and we’ll see what the future holds. There is some theory that as my body detoxes and heals from the gluten exposure, it will self-correct on things like malabsorption of calcium.
This brings me back to my question – which doctor is in charge? The doctor that ordered the test isn’t the one that told me the result. Neither doctor has released the report to me, so I don’t yet know what the official results of the bone scans were – I just know that they were low. I also don’t know which doctor will formulate a plan regarding this … probably yet one more doctor (an endocrinologist) as it is yet one more speciality.
Friday I saw another set of health providers for totally different reasons. I had a L-Dex scan. This was my first measurement, meant to be a baseline. Ideally, they want to start taking these measurements on women before they have surgery involving lymph nodes. It may provide a way to help predict which women are at risk for lymphedema. My first measurement doesn’t mean anything on its own. I will do another measurement in three months. It will be compared to the first to help determine if my lymphedema is improving with compression therapy.
I then went over to see the therapist that manages my anti-depressant medication. She was awesome. For the first time in a long time I felt like someone was looking at the whole me, and not just the part of me that is their subspecialty. She was concerned about my weight gain (upward trend since August, which might also be related to eating mostly gluten-free), but also my blood pressure. With those two items in mind, she recommended a change in my anti-depressant meds, as the one that I’m taking right now increases appetite (great when you are on AC chemo, not so great otherwise). Really, she has been the first person to actually do something about my weight concerns. I’ve raised the issue. My other doctors make comments like “lose weight” without giving me any tools to achieve that – or worse – they put me on medications that cause weight gain and then tell me to lose weight – it is really frustrating. So, I was happy to have a care provider actually look at the whole me, appreciate that I exercise a lot already, I eat healthy, and my meal choices are even more limited by the removal of gluten.
In some ways this post demonstrates yet another typical week in my post-cancer treatment life. I may not be fighting the cancer anymore, but I certainly am fighting the after-effects of cancer treatment. In some ways, I’m still in treatment. I don’t completely understand why hormone therapy isn’t considered treatment – probably just a pragmatic thing, you wouldn’t want to be told that treatment lasts 10-years. And for some women, hormone therapy has only a few minor annoyances – it certainly isn’t as bad as chemo. And so, I continue to reclaim aspects of my previous life, while juggling way more health related appointments than I’d like, and I try to get healthy both physically and mentally. This week, I’m a little stronger.
- Becky
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Dear Becky,
You are still going through a lot. We are both comparing our lives in the past our world before cancer to our present our world after cancer. We are both still married to amazing husband who have stood by and supported us through life changing/altering experiences. We are both trying to re enter our professional world. But honestly our world is still spinning a bit faster in our minds than our world is actually spinning on its axis. We are afraid our lives might be cut shorter somehow by our cancer experience. I suffer from a little bit of post traumatic stress disorder. It began when my dad died at the early age of 50 and I was only 6….. I could see it more when my mom struggled with a mental disorder that made her seriously depressed at times and I would try to nurse her mentally back to loving life with me and my siblings…… But the PTSD symptoms I feel from high grade comedo necrosis DCIS double mastectomy DIEP flap reconstruction…… Are not debilitating but fleeting. It is the fear of what might be developing in cells in my body that I don’t feel and they can’t see or the things I feel but they can’t see . It reminds me of being a teenager and college student and right before my menstrual cycle would start there would be achy ness and then bloating and then severe cramping and my brain would start playing tricks on me with sensitivity and moodiness back then the term was pms pre menstrual syndrome. Now I have something I call post cancer syndrome and the only thing that cures it is hiking the appalachian trail. By the way I just finished my 3rd state New York Connecticut and New Jersey are done and only one mt in Massachusetts is between me and Vermont. You know what else cures my pcs seeing my children and family experience the same types of things that I call mountaintop experiences. Where all of a sudden I am aware of the mundane tasks I need to do like dishes laundry etc and I take pleasure in ordinary daily pursuits another day lived without dis ease or cancer. Then the next moment I see my son play his last football game after 10 years of middle school high school and college ball. Then a week later I see my other daughter sing her heart out soulfully at area all state girls choir and then my other daughter is playing Pokemon and then goes and picks up her guitar just a natural. Then my other son plays Charlie Brown in his last year of middle school and I find myself wanting to talk to Lucy the psychiatrist for 5 cents or play Sally and want a new philosophy. My youngest number 5 is just as special he just won his first flag football championship and loves to watch his older siblings do anything and everything and just turned 10. I got dcis when my oldest was looking at colleges his senior spring year of high school and now it is his senior year of college and I even mark his experience going to college with my cancer experience. At least your milestones aren’t marked by children’s events. I hope their lives aren’t marked by my cancer experience. So the bottom line is I think I have what I call post cancer syndrome and I don’t know if the medical establishment knows about it or actually acknowledges it but I know that I am forever changed because of it. Just like pms impacted me as a young woman pcs is impacting me as a middle age woman. I don’t know what might come next but I am hoping and praying for the next syndrome that comes in old age because that means this dis ease did not cut my life short I somehow survived this journey just like those who try to tackle 2200 miles of trail on the east coast or ride their bike around the world. We have a lot of planning, dreaming, and living to do and I look forward to more of your posts whether they be of your cancer experience or of your next adventure or trip. I just know I love the mountaintop experiences but I’m also learning to enjoy the hike whether it be uphill or downhill, mountain top or valley. where it is time to refuel recharge change gear wash laundry replace boots or boobs or as in your current circumstance it’s time to take a few more supplements while I might have to take a few more ibuprofen because I am a little sore from the last hike. I hope something in this post resonates and encourages you, you are often an encouragement to me on my journey after bc.
Momofive
My answer to the question is this: The patient is in charge.
If you haven’t done so already, I would ask the provider directly for test results. For example, I was able to get a CD of my bone scan results directly from the facility that did the scan. Even if the doctor who ordered the scan received those results first, I have them on hand to share at will with other healthcare providers.
My cancer center has a patient portal, so I can access and download blood and other test results, vitals, and office notes. This is also a good way to keep your records accurate (One set of notes had the wrong date for my start on anastrazole.)
Thanks Elissa. I get most of my results directly from the “my Health” systems – and I’m only juggling two care providers. However, the doctors still need to “release” the results so that I can see them. If the results are in the “normal” range then they typically get released automatically – it is when they are abnormal that they usually require a discussion with the doctor first. I think part of the reason they haven’t been released is that my oncologist saw me in the hall and told me, rather than having a formal office visit, so the system doesn’t show that someone has spoken to me about it yet …
Part 2 (my comment is divided so that I can access the “Post Comment” button): I scan my paper copies into my computer and copy the CDs into dedicated subfolders, then back everything up onto an external hard drive. It’s made my job much easier when I’ve had to go back and find a record, which in turn helps me do proactive research. This method has helped me even more as a caregiver (I am simultaneously caregiver and cancer patient). My partner has seen multiple specialists, and we’ve had cases where info has not been shared among doctors even when we’ve requested it. Fortunately, I had paper copies with me and could just pull them out and hand them over on the spot. It just gives that modicum of control when so much else seems to be going off the rails.
PS: I don’t see your reactions as being stupid at all. They come with the cancer territory.