Port Removal, Tamoxifen, Endometrial Biopsy, & Specialists
Over the last month things have stabilized and then gotten chaotic again. I spent the first month and three quarters doing really well on Tamoxifen (or as well as can be expected).
Appointments with Specialists
I saw an OB/GYN on November 24, and she is amazing. She expressed similar concerns about me taking Tamoxifen and conferred that it does put you at greater risk for endometrial and uterine cancer. She agreed to do a baseline ultrasound to track the thickness of my uterine lining, and also talked me through some of the results that I got on my pap smear the previous week. According to her, because my HPV test came back negative, although my pap smear showed abnormal cells, it’s technically considered a normal pap smear. She put my mind at ease and assured me that more than likely the reason my cells were abnormal was because I just came off Herceptin. It made me feel much better about the abnormal pap and we agreed to do another pap smear in late January.
I got what can only be described as the lightest period ever on November 22, and it only lasted a day. I was sad about this because having no period just makes me feel like I’m less of a woman now. I suppose this is just something that I have to learn to live with, though.
On December 13, I met with an eye doctor to have an eye exam and talk about the risks associated with Tamoxifen. Once again, I was surprised that the specialist not only knew about Tamoxifen but knew that it had side effects associated with the eyes. After being told that none of these concerns were valid by the Oncologist in Boston (as well as my own Oncologist) it felt really good to have two out of the three specialists tell me that I am absolutely right for being concerned about the long term effects of this drug. He examined my eyes, told me that they looked good and that now we had a good baseline to keep track of as I’m continuing to take this drug, and I was given a very weak prescription for glasses to correct some vision issues I’ve had for years.
Finally, I met with my last specialist, and Endocrinologist, on December 21. I was hoping to get some answers about other options to Tamoxifen, because I had been told that Endocrinologists deal with hormone therapy by someone, but she told me that she wasn’t that kind of Endocrinologist. However, she assured me that my concerns about bone loss while on Tamoxifen as a premenopausal woman were valid, that it is something to keep track of, and that she wanted to do another bone density scan in two years. She also told me that because I am premenopausal, my bone density scores are actually in the normal range and that they use a different rating scale for pre and post menopausal women (which was why I was given a diagnosis of Osteopenia originally). It felt good to get some positive news from a doctor, for once, and I am very thankful that I have so many incredible people on my care team.
Tamoxifen Side Effects
Over the last two weeks I’ve really started to struggle with Tamoxifen. I can’t eat, have no appetite, and definitely am dropping weight. I also have been experiencing some pretty significant mood swings and loss of energy the week prior to my period starting. Jason and my mom both told me that I have been really angry lately, and that it’s noticeable to them, which is really concerning to me. I don’t want to be angry and I don’t want to feel like I have no energy/desire to do anything. I definitely don’t want my behavior to impact other people in a negative way and I know that’s what’s happening at least the week prior to my period.
So, on December 17, I stopped taking my Tamoxifen. For four days I didn’t take it. On Monday the 20th, I started my period, and although I’m sure stopping the Tamoxifen encouraged this to happen, I get the feeling I would’ve had my period regardless. I felt significantly less tired and more like myself on Monday, after three days off of Tamoxifen but I still had no appetite and felt really terrible about quitting my treatment. I ended up taking my medicine again on Tuesday and still had a period.
Port Removal
On Monday, I had my port removed. The procedure wasn’t as bad as I thought it would be, although I certainly won’t say that it was pleasant by any means. They only administered a local numbing agent and the doctor and his assistant were very nice. I asked if I could keep my port after it was removed and the doctor said that I am the first patient that he has had that has wanted to take it. He said that he offers it to everyone and nobody ever takes him up on the offer.
The procedure took about 35-40 minutes, and the worst part was after the yard out the port (and trust me there is definitely some tugging that happens to evict that thing from your body) they have to put a bunch of pressure on the wound to get it to stop bleeding. It was pretty uncomfortable for however long it took for them to get the bleeding to stop. Then, they had to stitch it up and that seemed to take forever. I think that if I had to get my port out again I would do the procedure without sedation again, now that I know what it entails.
Endometrial Biopsy
The last thing that happened since my last post, one that I was not expecting, was that I had an endometrial biopsy. The reason that I had to have one of these is because I started my period while on Tamoxifen and although this isn’t uncommon, my OB/GYN wants to be proactive and not assume that I am ok. As much as the procedure hurt, I am glad that she did it. I’m glad that I have an OB/GYN that isn’t willing to assume that I’m ok. The procedure was fast but boy did it hurt. I’ve never yelled while getting a biopsy and this time I definitely yelled loud enough for people in the hallway to hear. I was so embarrassed but she said that it’s common for people to be yelling in the exam rooms.
I’m still really struggling with Tamoxifen. The side effects seem to be worse and it’s hard to continue taking a pill that’s making me feel like this. The only side effects that I was experiencing the first month have been joined by the following:
Tiredness/loss of energy/stamina
Trouble sleeping/staying asleep
Heartburn at night
Anxiety
Mood swings (especially the week prior to my period)
No appetite at all
Hot flashes at night
I’m terrified to be off Tamoxifen and I don’t like how I feel on it. There are no good options. So when I see my Oncologist I’m going to talk about some things that might be able to help with the loss of appetite and the mood swings. We’ll see how that appointment goes in a few more weeks but for now, I’m suffering through hormone therapy just about as much as I was suffering through chemotherapy. I just wish treatment would be manageable. I guess it’s better than the alternative, though.
