1/22/21: Lupron + I Picked Up a Prescription

The medical assistant who took my vitals today introduced herself because she's new. She's the second new medical assistant I've had in recent months, and it does make me wonder what happened to my old familiar medical assistant. 

It's interesting... For the 12 weeks I had chemo, I saw the same medical professionals week after week. They all knew me, and their friendly faces were so comfortingly routine. Now that I'm a year out from chemo, I'm seeing new faces all the time. I'm not sure I can describe the feeling. It's kind of like staying an extra year in school; all the people you associated with the place have moved on, but you're still there.  

My nurse today was one I hadn't seen in a while; she used to be the "new" nurse, but now she's just in the regular rotation. I like it when she's my Lupron nurse because her shots are always painless! She says it's because she does the injection veeeeeery slowly. Any time I mention how much I appreciate her painless shots, she says I made her day by saying so!

After the shot, I picked up my Tamoxifen prescription. I'll start it tonight. Wish me luck.

1/21/21: Medical Oncologist Phone Appointment

One of the nurses I talked to last week warned me that my medical oncologist might run behind schedule. She called 30 minutes late today, but I didn't mind. I appreciate it when I am not rushed through an appointment, so I just imagined that she was talking with other patients with lots of questions and issues, like me. 

She said that FSH and LH aren't really reliable measures of menopause while on Lupron, so she mainly looks only at the estradiol. She confirmed that she does look for a very low number, like the "<5" value I had last July, before the spotting started. My two recent blood tests, however, had my estradiol at 31 and 10, which suggests that my ovaries are still functioning.   

So why would the Lupron just suddenly stop working? She thinks it's not that the Lupron stopped working, but that my ovaries starting working again. Typically, chemotherapy puts the ovaries into a chemically-induced menopause - sometimes called "chemopause" - which is sometimes permanent, sometimes temporary. I finished chemo over a year ago, and my doctor figures my ovaries are only now "waking up". The Lupron is probably as effective as it's always been, but previously it was doing a good job suppressing chemo-suppressed ovaries, and now it's doing an okay job suppressing functioning ovaries. I asked if having partially suppressed ovaries is normal? She said it's "a little weird." 

I am already on the highest monthly dose of Lupron. Apparently it's not unheard of to increase the dose even more by giving the shot every 3 weeks instead of every 4 weeks, but she said her colleagues didn't recommend it, since some patients get by on just half the dose I'm getting. There is a 3-month dose, which is 3 times the monthly dose, but it could produce inconsistent results, with the higher concentration of medication at the beginning of the 3 months leading to more side effects, and the wearing off of the medication towards the end of the 3 months leading to estrogen production.  

So, she suggested I stay on the same dose of Lupron, and switch from exemestane to Tamoxifen. This is the #2 scenario of Ovarian Suppression + Tamoxifen that I described in this post. I have to say, I am so glad I have that post to refer back to! I was feeling uneasy about switching to Tamoxifen, because it feels like I'm "settling" for a less aggressive treatment, and I want to feel like I am doing everything in my power to reduce the chances of a recurrence. That post reminded me that I've always been in an intermediate "grey area," not clearly high risk, but not clearly low risk either. The original decision to take exemestane instead of Tamoxifen was an effort to err on the side of caution. I was prepared at the time to switch to Tamoxifen if necessary, only it turns out the precipitating factor isn't the exemestane being unbearable, but rather the Lupron being ineffective. 

I was surprised that my doctor did not even bring up oophorectomy as an option. Since that was the path I was expecting, I asked her why not. Basically, she appears to have a philosophy of being conservative when it comes to surgery. Like, removing body parts is pretty drastic, so don't do it unless you really have to. This is definitely Ken's perspective, and I lean in that direction, too.

I told her my concern about "settling" for a less aggressive treatment, since my current treatment of Ovarian Suppression (via Lupron) + Aromatase Inhibitor (via exemestane) is supposed to be more effective. Shouldn't I consider switching from Lupron to ovary removal for the ovarian suppression, and sticking with exemestane? My oncologist basically answered the question by assuring me that Lupron + Tamoxifen is still an aggressive course of treatment. She didn't say it explicitly, but I got the feeling she thinks, at least for me, the risks of ovary removal are not worth the benefits of exemestane. 

I'm a bit conflicted. On the one hand, I know I am "settling" for a less aggressive treatment, but on the other hand, I'm relieved I don't have to get an oophorectomy. I was already wary of the procedure because of articles like this that lay out the risks. It helps to remind myself that I can always opt for an oophorectomy later, if I change my mind. Also, it helps to remember that I am following the recommendation of my oncologist; I would have to go against my oncologist to get the oophorectomy, and that would feel weird, too, because I do think she's a good doctor. (I think if I really felt strongly about it, I'd be motivated to get a second opinion, but I'm not.) 

So just when I thought I could get used to a stable set of side effects, I'll be starting all over again with a new medication. I think I can handle stuff like hot flashes and fatigue, but I really, really, really don't want to have any hair thinning! I'm just starting to feel optimistic about my hair growing back, but already it feels thinner than it was before chemo, and I'll be super sad if it gets even thinner. I'll also need to keep an eye out for more serious side effects, like symptoms of a blood clot or endometrial cancer. 

On the plus side, Tamoxifen is supposed to have a positive effect in bones after menopause, so it may counteract the bone loss from Lupron. Also, it can lower cholesterol levels, which is convenient since I now have high cholesterol.

1/15/21: The Cancer Center Called Me

Actually, two people called. 

First, a scheduler called. She said she spoke with my oncology NP, who requested that I be scheduled for a televisit with my medical oncologist. She said they are trying to minimize in-person interactions, so it'll be a phone call, and she made the appointment for next week.

I figured this means there isn't an easy answer, or an automatic next step. As I was wondering what options my doctor might suggest, the phone rang again. 

This time it was a nurse. She, too, said that she had spoken with my oncology NP. But compared to the scheduler, she was much more explanatory. She was like, "I understand you've been having some bleeding, and you're waiting to hear from your doctor..." She said my oncologist wanted to discuss my case with some colleagues in the main hospital in the city before meeting with me. I super appreciated this extra bit of information. It actually builds my confidence knowing that my doctor is seeking out other opinions. (My first oncologist also discussed my case with colleagues, and I appreciated it then, too.) I told her a scheduler had already called, and I already have a phone appointment. Since the scheduler actually set the date, I assume it leaves enough time for the doctor to gather whatever other information she needs. The nurse apologized for calling again when I already had an appointment, but I thanked her for giving me new information. 

1/13/21: My Medical Oncology NP Emailed Me

Actually, she sent me a message via the hospital's online patient portal. It was very short, like two lines, just to tell me that she knows I spoke with my OB/GYN, and that she'll talk with my oncologist about me on Friday morning, so she'll try to call me on Friday afternoon. I super appreciated the communication because it let me know not to expect anything until Friday, saving me two days of anxious wondering!

1/12/21: My OB/GYN Called Me

She got the pelvic ultrasound report. (That was fast!) I've been checking the online patient portal myself, but haven't seen it.

She said everything looks normal. The uterine lining is 3 mm, which is considered "thin" and normal for menopause, when the lining should be less than 6 mm. No polyps or unusual tissue, and the ovaries look normal. There is no "structural" reason to explain my bleeding, so the cause must be hormonal, which implies that my ovaries are not being completely suppressed by the Lupron.

I did see that the online patient portal was already showing my blood work results, so I asked her about those, too. My estradiol number (which should be very low) is still higher than it was last July, but lower than it was in December. This just shows that there is still some notable amount of estrogen in me.

My FSH is still too low for natural menopause, but she explained that FSH should be low because of the Lupron; in natural menopause, FSH should be very high, but Lupron works specifically by suppressing FSH. So today I learned that the markers for chemically-induced menopause are not the same as the markers for natural menopause. Because of Lupron, I should actually have very low levels of FSH (contrary to what I thought in December). My numbers are indeed low, though Monday's blood test showed higher levels than before. Apparently, the FSH may not be low enough, since my body is still producing enough estrogen to stimulate bleeding. 

The bottom line is that I shouldn't be producing estrogen, because estrogen fueled my cancer. The whole point of Lupron hormone therapy is to stop my ovaries from producing estrogen, to reduce my chances of recurrence.

So, now I wait for my medical oncology team to call me. I figure they will want to talk to my OB/GYN before circling back with me. 

1/11/21: Pelvic Ultrasound

This post being about a pelvic ultrasound should presumably serve as a TMI warning in itself...

I was supposed to drink 24 oz. of water 60-90 minutes before this appointment, to make sure I had a full bladder for the procedure. In recent days, I did a few trial runs of drinking various amounts of water and then waiting 90 minutes. I think if I had followed the instructions exactly, I might have peed myself during the ultrasound.

Luckily, the person on the phone with whom I made the appointment did clarify at the time that it's not the exact amount of water that matters, and I should not drink so much that I feel uncomfortable. So, I ended up drinking only about 12 oz. I felt plenty full by the time my appointment rolled around, and the technician didn't comment one way or the other.

I was surprised that the technician didn't ask me to change into a gown right away. Apparently the first part of the procedure is a transabdominal ultrasound, so I just had to lie on my back and lift my shirt just high enough, and push the front of my pants just low enough, for the technician to rub the transducer around on my lower belly. There was a lot of gentle pushing around, and I could not relax at all, my stomach muscles were actually tense from trying not to pee! This part lasted maybe 10 minutes, and she explained that the next part would be transvaginal. I said I was worried about my full bladder, and she said I'd be able to empty my bladder in between. Phew!

After coming back from the bathroom, the technician had me undress from the waist down and lie on the table with my feet in stirrups, with a sheet draped over me. She actually asked if I wanted to put the transducer in myself? I was not expecting that question, but I told her it's okay for her to do it. I thought she might slowly talk me through it, like the OB/GYN usually does, but nope, in just a couple seconds, before I knew it, the transducer was inserted. The next several minutes were about as uncomfortable as you would imagine.  

The whole appointment lasted about 30 minutes. 

Afterwards, I headed over to the Cancer Center part of the hospital for a blood draw, as instructed by my NP. Everyone seemed surprised to see me coming in off-schedule. I think they might have even called my NP to double-check the order. 

1/8/21: My Medical Oncology NP Called Me

She called to give me an update after having talked to my medical oncologist and OB/GYN about my spotting. 

First, she asked me to go in on Monday, after my ultrasound, to get my blood drawn. They want to test again for FSH and estradiol, to see if the numbers fluctuate at all.

She said the most important message my medical oncologist wanted her to convey is that the situation is not catastrophic. We are still gathering information, and we will figure this out. It may take a few weeks, but should not drag on for months.

I appreciated this explicit message because part of me had already gone down this thought train: "So, if the spotting is a light period, that means I'm producing estrogen, which means the Lupron is not sufficiently suppressing my ovaries... I'll have to get my ovaries out, but in the meantime, what if all the estrogen is fueling cancer cells again!? But wait, the chemo was supposed to have killed all the cancer in me, so what are the chances of there being any lingering cancer cells that managed to evade the chemo, or any altogether new cancer cells?"

Anyway, the NP reassured me that there are many patients who end up having to temporarily discontinue Lupron or exemestane due to side effects or other surgeries or any number of reasons, so not having effective Lupron for a couple months is not an unusual situation. 

She also said that getting an oophorectomy was only one of a number of options my medical oncologist mentioned, if the problem turns out to be the Lupron. She said something about looking into whether or not Lupron can be given more frequently than once a month, but I have never heard anyone on any of the Facebook groups mention that. She also said something about switching from exemestane to Tamoxifen, and not doing any ovarian suppression; from what I've read, this was the typical pre-menopausal line of treatment until studies showed that ovarian suppression with an aromatase inhibitor (like exemestane) actually works better. 

I was hoping to wait until after natural menopause to get my ovaries out because this article says that "women under 45 who had ovary removal without hormone replacement therapy were at increased risk of dying from a range of medical conditions later in life," and this other article says, "There seems to be no increase in medical side effects if oophorectomy is performed after a woman undergoes natural menopause." It's not clear but I suspect both articles are referring to the same study. Anyway, my OB/GYN already pointed out that cancer is the more pressing threat right now, so I should weigh the possibility of cancer recurrence with more priority than the possibility of unknown mortality risks later in life. She hasn't come right out and said it, but I get the feeling she thinks an oophorectomy would make sense, and the risks are acceptable. 

Okay, I am obviously going down the rabbit hole that my NP specifically didn't want me going down just yet. Who knows, maybe the ultrasound will show something completely unexpected... I need to stop speculating. I will get the ultrasound and blood test on Monday, and then I'll re-group again with my medical oncologist or NP.

1/7/21: NP Appointment

Today's appointment was a routine follow-up with my NP in the Breast Center. I don't get any regular imaging to look for cancer recurrence, just these physical breast exams.

I had forgotten how thorough my last appointment was, so I was pleasantly surprised when she asked me how all my various side effects and treatments are going. I told her about my recent spotting and upcoming pelvic ultrasound, and she seemed to think I will most likely still be able to continue with Lupron. I couldn't tell if she was basing that on experience and what she's seen in patients, or if she was just trying to be encouraging because I said I wasn't excited about potentially having to get my ovaries out. 

During the physical exam, I was happy to hear her say that my DMX incisions look good. She asked if I'm using anything on them to reduce the scarring, and I said no, because I don't really care how they look since no one sees them but me. I asked if I should be using any products for healing purposes, but she said no, only for aesthetic reasons. I told her I am using Mederma on my port scar, and she said the port scar is always worse than the mastectomy scars! She said she sees it all the time and doesn't understand why. I said, only half-jokingly, that maybe my breast surgeon is just that much more skilled than the port installation/removal surgeons. 

She also mentioned that if I ever feel uncomfortable with my dog ears, I can have them removed with revision surgery. My dog ears are pretty small, they're a bit of extra skin at the end of my mastectomy scars, under my armpits, that pucker out a little. They're annoying, but relatively minor, and I'm okay just living with them, at least for now.  

It was something of a relief to have a medical appointment that went so smoothly, with no new or on-going issues to manage. My next NP appointment in the Breast Center will be in a year, the longest stretch I'll have had between appointments. I think it's noteworthy that at this point, I do feel comfortable with yearly appointments; that "baby bird" feeling is subsiding, and in its place, I'm feeling an increasing eagerness to get to a point where I just have a stable schedule of routine appointments without any new concerns.

1/5/21: (6 Weeks of Using Scar Cream) Port Scar Update

I started using Mederma PM Intensive Overnight Scar Cream about 6 weeks ago. Here's how that's going.

The lighting in the two photos is different, but I think the scar looks the same, or maybe even worse, more red. According to this informational page, "Scars can go through a phase of becoming pinker or slightly red." 

It also says scars should not be exposed to sunlight, and I can say for sure that, being winter, and having no place to go in a pandemic, my scar has been 100% hidden from sunlight. 

I know that scars take a long time to fully heal - the web page I just linked says 12-18 months - so I'm not surprised at how the healing is going; I'm making this post mainly to acknowledge that I know not to expect any remarkable changes at this rate. Even the directions on the scar cream says to use the cream "once nightly for 8 weeks on newer scars and 3-6 months on older scars" and adds for good measure: "Don’t get discouraged if you don’t see improvement right away."

I know I've talked about this scar a lot, but compared to how I feel about my hair, it's not so bad. I mean to say, I'm vain enough to really hate having to wait for my short hair to grow long again. But I don't feel anywhere near as strongly about the scar. Sure, it would be really nice if the scar faded a bit and was a lot less noticeable, but the scar doesn't upset me like my hair does. Maybe I'll feel differently in the summer, when the scar is actually visible to others. Who knows. In the meantime, I'll just keep using the scar cream and hope it's doing what it's supposed to be doing.