9/15/26: PCP Appointment

I don't always post about PCP appointments because they are not specifically cancer-related, but today's appointment definitely involved cancer-related issues.

First, I have to say, more than 7 years after being diagnosed, cancer is still not some "bump in the road" that is in the rear-view mirror - and I don't think it ever will be for me. For the rest of my life I will have to address health issues that are very likely a consequence of cancer treatment - at least in part - and I honestly kind of resent that.

Today there were two possibly cancer-related issues to address: rising cholesterol and osteoporosis. 

On average, menopause happens at age 52, and when it occurs before age 45, it's considered "early menopause". Because of my treatment for hormone-positive breast cancer, I went through medically-induced menopause, first in a potentially temporary manner at age 43 when I started Lupron injections (a form of ovarian suppression) in 2019, and then permanently soon after I turned 46 when I got my ovaries removed in 2022. 

The declining estrogen in menopause is linked to both rising cholesterol and bone loss, which can lead to osteopenia and osteoporosis. My cholesterol started increasing in 2022, crossed into the low end of the "high" range in 2023, and has stayed there ever since. Kaiser Permanente says women age 50 and older are at risk for osteopenia, but I was first diagnosed with it at age 43, and it just keeps getting worse. 

In addition to the lack of estrogen caused by ovary removal / menopause, my ongoing hormone therapy has me taking a daily aromatase inhibitor, a pill that lowers my estrogen even more by preventing it from being made from sources other than the ovaries. 

Now, can I know for sure that my cholesterol wouldn't be as high, or my osteopenia wouldn't be so bad, if I hadn't had medically-induced early menopause or hormone therapy due to cancer treatment? Of course not. Who knows. But my feeling is that menopause and hormone therapy have had a mild to moderate affect on my cholesterol and a giant affect on my bones. 

So what're we doing about these two issues.

For cholesterol, nothing for now. My PCP characterized my cholesterol as "stable", and my cardiologist previously said that it's not at the point of having to worry yet. It just annoys me that it continues to stay high, even though I've adopted a number of the recommended lifestyle changes for improving cholesterol. Since I already have a cardiologist, I suspect my PCP would just defer to her anyway. 

And speaking of deferring to specialists, that's exactly what my PCP is doing about my osteopenia. She referred me to the hospital network's "Bone Center" in the endocrinology department. I was surprised because my oncologist didn't even mention endocrinology. My PCP explained how treatment for osteopenia/osteoporosis is generally not long-term, like some are even limited to like 3-5 years at a time. And since I'm younger than the average osteopenia patient, any treatment plan should take into consideration my life expectancy, balancing my current condition with potential future needs. Moreover, because my osteopenia is likely linked to hormonal changes due to menopause, seeing an endocrinologist, a specialist in hormone-related disorders, makes sense. 

I have to admit, at first I felt really burdened by this referral. Another specialist?! Like, COME ON!! But while I was on the phone making the appointment, I started to feel better. When the scheduler said I could see someone in a suburban satellite office, I was so relieved I wouldn't have to drive into the city!! I was a little wary when she offered up a nurse practitioner instead of a doctor, but I've had good luck with nurse practitioners, plus she said the NP specializes in post-menopausal women with osteoporosis! So I think I'll be in good hands. I'll have to wait a while to find out, though, since my appointment - the first available - isn't until the end of February.

8/18/26: Bone Density Test Results

I went in for my bone density test at 10:00 AM this morning, and at 3:00 PM I got an email notification saying the results are available online.

I appreciate the efficiency of being notified directly of any test results, but I admit I miss the days when the doctor's office would call or send a letter. Of my and my family's various doctors, some will send an online message to explain or interpret test results - even just to say "results are normal" - but from others there is radio silence, and unless I initiate a call to the office, I'm just supposed to wait until the next scheduled appointment to discuss results. 

In this case, my oncologist who ordered the test had said that depending on the results, my PCP may want to start some kind of treatment to help slow down or prevent further bone loss. So maybe that means I shouldn't expect any communication from my oncologist, and I'll just plan to discuss the results with my PCP at my appointment next month.

Anyway, my last bone density test in 2024 showed "osteopenia of bilateral proximal femurs and lumbar spine," which I think is why I previously only blogged about T-scores for those 3 locations: left proximal femur, right proximal femur, and lumbar spine.

But this time, the report says "osteopenia of lumbar spine, bilateral proximal femurs and left forearm." The left forearm part is new.

Also, previously, I only blogged about T-scores. This time, however, in a couple cases, my T-score was the same, though the actual bone mineral density measurement was lower. So now I'm going to include those bone mineral density measurements as well.

Lumbar spine:

• T-score unchanged: -1.5
• Bone mineral density: 0.995 g/cm2, down from 1.002 g/cm2 in 2024  

Left proximal femur:

•  T-score: -2.1, down from -1.8 in 2024
• Bone mineral density: 0.737 g/cm2, down from 0.781 g/cm2 in 2024

Right proximal femur:

• T-score unchanged: -1.6
• Bone mineral density: 0.801 g/cm2, down from 0.811 g/cm2 in 2024

Left forearm:

• T-score: -1.9, down from -0.8 in 2024
• Bone mineral density: 0.567 g/cm2, down from 0.648 g/cm2 in 2024 

Suffice to say I'm pretty bummed, even though the results aren't unexpected, given my hormone therapy on top of being post-menopausal. I've been taking my Calcium and Vitamin D supplements diligently, but I'm going to have to redouble my efforts at doing weight-bearing exercises. 

6/15/26: Medical Oncology Appointment

Today I had my annual oncology follow-up. My appointments are supposed to alternate between the medical oncologist and medical oncology NP, but for some reason, I was scheduled with the NP for 3 years in a row, so I hadn't seen my oncologist since 2022!

I first got a blood draw for a full panel of tests. I was a little surprised because I couldn't even remember the last time I had my blood drawn for an oncology appointment. At home later, I checked my records, and it was back in 2022 when I last saw my oncologist! Anyway, today I had to go to the phlebotomy department in the main part of the hospital; since my last blood draw, the small dedicated phlebotomy lab in the cancer center is now only used for limited purposes.

The very nice medical assistant who took my vitals gave me another surprise when she said my height is 5' 5". I thought I was 5' 5.5"! Again, I checked my records at home, and last year I was 5' 5.25". At the time, I probably chalked it up to a slight mismeasurement, but I can't ignore two years of declining measurements in a row. Yikes. Surely bone loss is to blame; more on that later.

The medical assistant also told me the doctor was running behind schedule, and indeed by the time I was shown to an exam room, it was 50 minutes past my scheduled appointment time. Then I had to wait at least another 15 minutes for my oncologist. But I didn't mind, I didn't have any other place to be. The way I see it, my appointments are relatively routine now, and other cancer patients probably need her attention a lot more than I do. Plus, I like the idea of a doctor spending as much time as necessary with a patient. I used the time to start this blog post, check email, etc.

While waiting in the exam room, with the door open, my medical oncology NP walked by and popped in to say hello. It was very quick but also very friendly, just enough time for her to ask about my kids and for me to tell her about my youngest graduating high school and heading off to college. When I finally saw my doctor, she was so pleasant and kind and spent maybe a good 30 minutes with me. I didn't feel rushed at all.

I was surprised - again! - when the doctor asked about my eye appointments; I didn't realize she would have access to the fact that I recently got an eye exam and was referred to an ophthalmologist for an "enlarged optic nerve". I super appreciate when all my doctors in the same giant hospital network can see each other's notes, but I know the ophthalmologist is not in that network. Maybe my oncologist just saw the referral from my PCP, who is in the same network? Who knows. However she got to see it, I do like the convenience and comprehensiveness of all my doctors being able to see my medical activity across specialties.

We talked about my various symptoms and side effects from menopause and hormone therapy, e.g., joint stiffness, neuropathy in fingers and toes, hot flashes (much reduced from initial frequency), vaginal dryness, and increased anxiety. I told her about the new neuropathy in my left toe, though at this point, I've pretty much just accepted that all the discomforts are part and parcel of having had cancer.   

My oncologist confirmed that it'd be difficult to separate which symptoms are from menopause, and which might be side effects of taking anastrozole, the difference being that side effects could potentially improve when I stop hormone therapy. (I've got 4 more years to go, for a total of 10 years of hormone therapy.) Anastrozole is an aromatase inhibitor, and she said there is one more medication in the same family that I could try, called letrozole. I previously took exemestane, and got switched to anastrozole to see if I'd have fewer side effects on it, which I did. My doctor said I could try switching to letrozole, if I want, just to see if side effects are even better, but I guess I sort of feel like I'm in a steady routine now, so I'm loath to rock the boat by switching medications. It's good to know it's an option though. 

As usual, I had a physical exam as well, which went fine.  

Finally, I am due for a bone density test (because aromatase inhibitors cause bone loss), so will call tomorrow to schedule that. My oncologist said to try to get an appointment before my next PCP appointment, so my PCP can see the results and talk with me about whether or not to start treating my osteopenia (which hopefully has not progressed to osteoporosis).

6/5/25: Medical Oncology NP Appointment

Today's appointment was a full year after my last oncology appointment, and I have to say, it felt different. Cancer somehow seemed less close, like I can now imagine being in a mental place where cancer might feel like something "in the past". It's not something I can ever really forget - my missing breasts are a constant reminder - but maybe it could be more like "something I went through" rather than "something I'm going through".

Anyway, my NP greeted me with a big hug. She asked all about how my kids are doing, and what our summer plans are. It felt almost like catching up with an old friend, except it was all one-sided about me, though she does sometimes drop bits and pieces of information about herself in the course of our conversations. (For example, I know our families enjoy the same types of board games.) I expect to be cut loose from oncology appointments once I'm finished with 10 years of hormone therapy, and I anticipate feeling kind of sad about "losing" this semi-personal relationship. 

Of course we did get around to actual medical stuff. She brought up my last bone density test results. Yes, the numbers are getting worse, but she spoke positively about how they haven't crossed the osteoporosis threshold yet. She recommended I increase my weight-bearing exercise by wearing a weighted vest (like 8-12 pounds) when walking, which her own doctor recommended for her as well.

Other than that, I basically reported no change in my hormone therapy / menopause side effects, as described in my post for last year's appointment. 

My next appointment is in another year, and it will be with my oncologist. It's typical to alternate appointments between the doctor and NP, and I have no idea why they kept scheduling me with the NP in recent years, but I didn't mind since I like and trust her just fine. I haven't seen my oncologist since 2022, so it'll be almost 4 years by the time I do see her! I wonder if I'll be able to tell if she really remembers me personally, or if she'll just be going off my medical file.

8/15/24: Bone Density Test Results

I'm supposed to get a bone density test every 2 years while on anastrozole, which puts me at risk for osteoporosis.

Previous tests showed that I do have osteopenia, and this year's results are no different.

I had the imaging done yesterday and got the results online today. My T-scores this year are:

• Lumbar spine: -1.5 (down from -0.5)
• Right proximal femur: -1.6 (down from -0.9)
• Left proximal femur: -1.8 (down from -1.2)
  

The report describes the "change from previous" as "-8.8%, statistically significant change", but at least it's not in the osteoporosis range yet.

For the record, I do take both calcium and vitamin D to help prevent bone loss. I wonder if maybe my numbers would be even worse if I weren't taking these supplements.

3/11/22: Bone Density Test Results

I checked the online patient portal and got my bone density test results. 

These are my T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.9
• Left proximal femur: -1.2

I'm still in the osteopenia range. Compared to my previous test results, it looks like my right proximal femur got a little worse.

The report describes the "change from previous" as "-2.0%, statistically nonsignificant change", which makes it sound not too concerning.

7/15/20: PCP Appointment (Annual Physical)

Today's visit was kind of weird with all the coronavirus precautions; they were much more extensive than at the Cancer Center. I think they did a really good job, but could work on their coordination a bit.

This was my first time seeing my PCP since being diagnosed, and I guess sort of hoped for more personal attention. Not necessarily sympathy, but she did not ask me about my cancer treatment or mental health at all. Everything felt perfunctory and rushed, like she was just trying to get patients in and out as fast as possible; that would explain the physical exam part of the visit, but even the phone call portion felt hurried.

The medical history part of the exam was done over the phone, while I sat in my car in the parking lot in front of the medical office. By now, I've had a couple virtual appointments for my kids and myself, and each time, the provider called at exactly the scheduled time. Today, my PCP called over 10 minutes early. I was still driving, so I didn't pick up, and she called back every 1-2 minutes. Once parked, I answered her 3rd call, which was still well before the 8:40 start time.

First, she went over medications and allergies. She started out by confirming that I have no allergies, but I quickly corrected her and told her about the chlorhexidine. This oversight annoyed me because 2 days ago, the provider's office texted me with an online form to update my medical history; I spent 10-15 minutes entering in all my information, including the chlorhexidine allergy. Apparently, all that effort was for nothing, because she also did not know about my updated medication list.

I asked for her thoughts on whether or not I should get my ovaries removed. She gave me some general advice about weighing risks and benefits, and also talked about osteoporosis being a serious risk. Then she said that if it were her, personally, she would get the surgery, figuring the benefit of reducing ovarian cancer would outweigh the risk of osteoporosis. I did mention that my risk of ovarian cancer is still unknown, and that the genetic specialist said that VUS-es should not drive medical decisions, but she seemed to be in the "a VUS could just as well indicate a higher risk of ovarian cancer as not" camp. I also described the possible medical risks, and she suggested talking with a gynecologic oncologist, who would be more knowledgeable about up-to-date research. It's a good idea, and I'll keep it in mind.

I also thought it would be prudent to let her know what's going on with my hands. She readily attributed my symptoms to medication side effects. When I told her that my medical oncologist and physical therapist are recommending an MRI, she suggested I see a neurologist.

She also told me to be sure to ask my oncologist if I should get a colonoscopy before age 50. Other than the gynecological cancers related to my genetic testing, I hadn't given any thought at all to other second cancers. I'll be sure to add it to my list of questions for my next medical oncology appointment.

Finally, my PCP asked a physician's assistant student who was also on the line whether or not there was anything we forgot. The student pointed out that we hadn't talked about mammograms. I immediately thought of the many posts I've seen on Facebook support groups from women who are now flat feeling upset or angry when their doctors reminded them to get mammograms. I'm glad I had a heads-up to expect this kind of thing. Given the apparent lack of updated information in my medical file - or the lack of attention given to information in my file - I wasn't surprised when it happened. In fact, I think I was bemused! I calmly explained that I don't need mammograms anymore because I had gotten a double mastectomy with no reconstruction. I'm sure if I were the student, I'd have been mortified, so I tried to be nice about it.

Before hanging up, my PCP told me to put on my mask and wait at the main entrance for someone to let me in. Someone had called while I was on the phone with the doctor, so while waiting to go in, I checked my messages. Oddly, it was a rather impatient person calling from the lab, saying, "You can come on in, and you better hurry, it's already 8:45 and I have another patient at 9:00." Shouldn't the doctor and the lab technician have coordinated?

A medical assistant walked me from the main entrance directly to the exam room. The waiting room was not in use, and the medical assistant opened all doors, so I didn't have to touch them. She took my vitals, and I barely had time to change into the gown when the doctor knocked to come in. She apologized for all the hassle, but I said it was great, they are clearly taking all possible precautions. I told her about the message I received from the lab, thinking it could help them to improve their services, but all she said was, "I don't know anything about that." Oh, well!

She gave me a quick physical and was in and out in a matter of minutes. Instead of going to the lab to get my blood drawn, the lab technician came to the exam room. I don't know if it was the same person who called, but the person who drew my blood was perfectly friendly. Afterwards, the medical assistant came back to escort me out of the building using a different exit than the main entrance I used coming in.

A few hours later, I got a phone call to schedule an appointment with a neurologist; they were following up on a referral from my PCP. I told them I'm not ready to make an appointment yet, but I got the doctor's name and phone number, for future reference. I figure I'll see how things go with the MRI first.

3/9/20: Bone Density Test

My medical oncologist ordered a baseline bone density test because both Lupron and exemestane are reducing my estrogen levels - actually, together, the goal is to eliminate estrogen completely - and that puts me at risk for osteoporosis.

Because of the coronavirus, when I checked in, I got asked whether or not I am having respiratory symptoms and also whether or not I've travelled anywhere within the last 14 days. These questions actually show an evolution from a few weeks ago, when I was asked only whether or not I'd travelled to China in the last 14 days.

Anyway, I filled out a questionnaire about my bone health, and was instructed to change into a gown. I laid down on a table, and the imaging machine above me moved up and down my body making scans. The whole procedure was a lot shorter than I expected, I think it took like 10 minutes.

When I got home, I went for a nice long walk with my neighbor. By the time I got back, my doctor's office had already called with the results. I have osteopenia! I got 3 T-scores:

• Lumbar spine: -0.5
• Right proximal femur: -0.7
• Left proximal femur: -1.2

Only the -1.2 number falls within the osteopenia range, but the nurse who called me said it's enough to consider my overall results to be osteopenia. She said my doctor is prescribing 1200 mg of calcium daily and 1000 IU of vitamin D daily.

My old oncologist already had me taking 2000 IU of vitamin D, so I figure I'll stick with that. The calcium supplement I've been taking is 600 mg, so I'll just take 2 of those from now on.

I'm already trying to walk at least 30 minutes a day, 5 days a week, for breast cancer recurrence prevention. Apparently, walking counts as a weight-bearing exercise that is beneficial to bones, so that makes me doubly motivated to keep it up. 

2/10/20: Medical Oncologist Appointment

I am so sad about my medical oncologist leaving! I got 3 big hugs today. And I teared up.

She told me which hospital she is going to. It's one of the best in the nation. She's going to be an associate director of an inpatient oncology program. She said she'll be working with a number of people who used to work at my Cancer Center. It sounds like there isn't much room for professional growth in my hospital; the other hospital is bigger and has a lot more money. 

She said she worked out a deal with the new hospital that would allow her to continue seeing her existing patients for outpatient care, if they want to stay with her. I love her, but I also love my infusion nurse, and physical therapist, and the providers in the Breast Center. I don't want to change everything in the middle of active treatment, and who knows, maybe I'll like my new oncologist just fine. 

My old oncologist seemed a little annoyed that the new oncologist scheduled my next appointment so far in the future (6 weeks from the last appointment, 3 weeks from now), particularly since I reported the symptoms in my hands at the last appointment. But in her defense, at the time, I had only experienced symptoms for I think 2 days, and I don't think I sounded too distressed about it yet.

Anyway. I gave her the whole history about my hands feeling puffy and tight and numb and tingly. I think the Lasix (furosemide) did work because my hands have continued to feel better since Saturday. I can hold things in the morning without my hands feeling weak or painful, and I haven't felt any numbness at all. I even skipped my morning routine today and yesterday because it didn't feel necessary. I still have a bit of tingling, but it is very mild, and it doesn't interfere with my ability to use my hands. I can tell the swelling itself is better, too, because I'd been wearing my watch wristband on a looser setting since all this started, and today I was able to switch it back to its original setting.

My doctor gave me a prescription for Lasix to take as needed. Apparently, Lasix makes it hard for the kidneys to absorb potassium, so she also gave me a prescription for a potassium supplement.

During my physical exam, she said my hands still look a little puffy, so I can go ahead and take another dose of Lasix to see if getting rid of even more excess fluid might help make the last of the tingling go away.

I told her my theory about my arms swelling because of overuse. She said that's possible, but also said the Lupron can cause fluid retention, which is what the new oncologist said, too.

She said my recent blood work showed that my vitamin D is low, so she gave me another prescription for a vitamin D3 supplement.

Also, my "phos" (phosphate) is a little high. She said she doesn't know why my phos would be high, but maybe taking the vitamin D will help that, too. If not, then I might need to see another specialist, like an endocrinologist. 

I remember that my phos was high back in December, but I didn't ask about it then. I guess I figured it might just be a fluke. A little bit of Googling tells me that a high phosphate level could be linked to osteoporosis, which I know is a risk when taking exemestane. I checked my labs online, though, and my phos has been high since before I started exemestane. (My phos went back to normal after that one time it was high in December, and then it was high again on 1/17/20 and 2/7/20.) Of course, osteoporosis is also a risk when taking Lupron.

I have to say, it's pretty depressing, having all these prescriptions, and worrying about osteoporosis, at age 43.

12/13/19: I Tried Lactaid Milk

I became lactose intolerant sometime in my 30s. (Being lactose intolerant means my body doesn't produce enough of the enzyme lactase to digest dairy products, leading to uncomfortable symptoms.)

With the help of lactase pills, I can still occasionally enjoy ice cream and pizza, as long as I have some pills on hand. It's not fool-proof, though; I'll still suffer if I don't take the right dose, and there's no clear formula for figuring that out. Usually I just guess at how many pills I might need for a "serving" of dairy.

I never really liked the taste of milk. As an adult, I used it mostly in cereal and hot chocolate. After I became lactose intolerant, I just stopped drinking milk. I'll eat dry cereal as a snack sometimes, and I switched to water for hot chocolate.

But now that I'm looking at the possibility of taking an aromatase inhibitor, which causes loss of bone density (increasing my risk for osteoporosis), I'm thinking about ways to increase my calcium intake. Ken suggested I finally give Lactaid milk a try.

Interestingly, with my chemo-induced lack of taste, when I sat down to eat a bowl of cereal with bananas and milk, the only thing I could taste was bananas. Since I never really cared for the taste of milk to begin with, I'm sure it'll be fine. I'm going to try to incorporate Lactaid into my regular diet.

10/3/19: Medical Oncologist Appointment

My medical oncologist is so warm, she gave me two hugs! One at the start of the appointment, and one at the end.

Mostly we were touching base before I start chemo tomorrow. The biggest update she gave me was that she spoke with the genetics specialist about the VUS in my BRCA2 gene, and she does not recommend getting my ovaries removed to prevent ovarian cancer. There just isn't enough known about the VUS, and it's not enough to justify ovary removal. I was relieved because in the limited research I've done so far, it sounds like a pre-menopausal oophorectomy carries a lot of unknown long-term risks.

She confirmed I will start Lupron with chemotherapy tomorrow. It'll be a monthly injection in the butt. We talked about how Lupron will cause a chemically-induced menopause, so expected side effects are basically the typical symptoms of menopause. I asked if that includes osteoporosis. The short answer is yes; but given my current health, she said she wouldn't expect me to be at high risk for early onset osteoporosis. Chemotherapy itself can actually increase a patient's risk for osteoporosis, so she said she typically orders a bone density scan about 2 years after chemo. She also talked about ways to promote bone health, like doing weight-bearing exercises.

At last week's meeting with the oncology nurse, I got the impression that my risk for nausea was relatively low. But my medical oncologist seemed surprised that the nurse hadn't prescribed this other anti-nausea medication called ondansetron hydrochloride (name brand Zofran), so she gave me that prescription today. Googling it now, it sounds like a preventative medication that is usually taken in advance, but both the doctor and the oncology nurse who sat in on the appointment today (not the same nurse I met with before) said I could take it as needed.

I now have three anti-nausea prescriptions, so I asked how do I know which one to take when? The nurse said the Zofran should be my first option for severe nausea (even though it might cause constipation), and I could use the other one (prochlorperazine maleate) for mild nausea. They didn't mention when to choose the third one, which is primarily for sedation anyway. The nurse also said I could alternate them every 6-8 hours, and that the chemo nurse might give me a kind of calendar or schedule as a guide for when to take which medication.

She reiterated a desire for me to connect with the social worker. The oncology nurse said she'd see if the social worker can stop by during my infusion tomorrow.