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.