Tamoxifen & Me

Big week here, folks! I'm making the transition from primary treatment modalities to...what do I call this next phase, anyway? Maintenance? Watch and wait? LIFE??!!  I still have reconstruction ahead of me, but that doesn't feel like treatment, at least not anymore.

I have 4 quick zaps left at radiation. I met with Dr. Papagikos this morning and he's really happy with my progress. Comparatively, I only have moderate skin changes (burning and discoloration). I'll have to meet with him in 3 months for a follow-up and then again in a year. After that, he predicts he'll be able to "drop off" my team, and then I'd only need to see him beyond that if there was some form or recurrence or second cancer. I needed to talk with him about what to look for in the future. I don't want to sit around worrying and waiting for cancer to rear its head again, freaking out over every little thing that goes wrong with my body (ex: my nose is runny = I need a Brain CT), but I also don't want to ignore or overlook something that indicates a problem.  He gave me a list of things to look for: skin changes, discoloration, swelling, tenderness, and pea or marble sized growths beneath the skin. Easy enough to watch for.  He said that my skin will feel/look its worst next week because the skin burns lag behind the treatment by about a week. After that, he said to expect a significant improvement in 7-10 days, and about 70% improvement by the 3 month mark. A year from now, we should have to strain to notice the changes/discoloration to my skin. He also said most of the "tired" feeling would pass in about a month.

Today, we met with Dr. Kotz to talk about Tamoxifen. I went in to that appointment with a list of really great questions (many thanks to the Stupid Dumb Breast Cancer Community on Facebook for their help compiling the list) and a lot of hesitation about taking this drug. All I hear and read is about negative side effects, like joint pain, weight gain, dizziness, exhaustion, eye pain, nausea, vision changes, mood swings/changes, sexual dysfunction (yeah...that's fair!), liver damage, ovarian and uterine cancer (at least I'm no longer on the line for those), heart damage, OMG this list goes on and on and on.....   My mindset going in was that I should be a candidate for Femara, which seemingly has fewer side effects and better outcomes.

Let me attempt to boil down my research a bit here so you can better understand where I'm coming from. The two drugs are in different classes. Tamoxifen is prescribed for pre-menopausal women to block breast cells from absorbing estrogen. It is a targeted therapy. Currently, oncologists are prescribing it for a course of 10 years (an extension from the former 5 year norm). Femara (and other Aromatase Inhibitors) is prescribed for post-menopausal women. AI's can't help to shut down estrogen production in the ovaries the way that Tamoxifen can, which is why they are the norm for post-menopausal patients. Studies have shown that Femara has better outcomes in terms of survival, even in some pre-menopausal women (those with high levels of  Ki-67 protein, referred to as Luminal B, for those of you that like the real technical data). Here's a downside, one that Dr. Kotz held onto throughout our conversation: AI's have a negative impact on bone health. Tamoxifen doesn't. In fact, Tamoxifen actually works with bone cells to improve bone density.

Now, I'm considered a surgically-induced-post-menopausal woman (because of my recent hysterectomy). I'd read about women not taking Tam because they no longer had ovaries (as in "hysterectomy instead of Tamoxifen"), so I was a little hopeful that he'd reconsider his stance on me taking Tam. He didn't. Did you know that your hypothalamus produces small amounts of estrogen? I'm not having a lobotomy!

Dr. Kotz said if, at the beginning of all this, I'd told him I'd only do one thing, chemo or Tamoxifen, he would have said Tamoxifen (because of its targeted nature). He said he's lost patients due to complications of the chemo regimen I endured (I knew this, but hearing it said so bluntly was shocking), but he's never lost a patient to Tam. He also told us that only half of his patients ever have any significant side effects. He'd prefer me to take Tam for at least 3 years, then switch over to Femara. That way I get the bone density benefit of Tam and the survival benefits of both. We ended the visit with a prescription for Tamoxifen (big surprise) that I'll start taking this Saturday, and a follow-up appointment in 6 weeks.

With that, I'd like to ask for prayers, good thoughts, crossed-fingers, anything really... that I have few, if any, side effects from this medication. I'm so ready to move on with life. There is so much living to be had!!

Almost Done!

Woohoo! I'm so close to the end of this treatment journey, and so ready to move on to healthier, happier things. It's been a month since my last post, and a lot has happened. Let me fill you in:

I've finished 23 of 28 radiation treatments. Treatment has been going well, but I have realized a few things. It never feels normal. No matter how many times you lay on that table, being topless and repeatedly holding your breath in a room of technicians, machines, laser lights and loud noises never feels normal.  Also, for those facing decisions about radiation for cancer treatment, I recommend focusing your search based on the quality of the technicians at a facility rather than relying solely on the reputation of the radiation oncologist. The oncologist has an important role in the decision making of your treatment, but the rest of the staff controls the day to day decisions and actual functionality of your treatment. Beyond "How's it going? How's your skin look/feel? Do you have any questions for me?" the oncologist has little involvement after the initial consult and planning. The technicians and physicists are the ones providing your daily care, ensuring you are lined up correctly so the right part of your body gets zapped. If there are problems with the machine or the patient, it's the technicians and physicists that handle it. And, apparently, the machines have problems pretty regularly due to heat, cold, humidity, general fussiness....  Once, elevated on the table and just before treatment began, the machine quit. I had the joy of remaining on that table, lifted up in the air, for 12 minutes until the machine reset. I've also experienced the technicians forgetting to tell me to hold my breath. Suddenly I was being zapped with radiation, and I freaked out a bit because the breath hold is what clears the treatment field of your heart and lungs. For all I knew, they'd just zapped my vital organs. After discussion with the lead technician and a review of my scans, I was reassured that my heart wasn't in the treatment field (breath hold or not). My lungs are, but only by millimeters, which is a lot or a little depending on whether they are framing the conversation based on their needs or your fears...
I'm faring well through treatments. Around #19 I was noticeably more tired than usual. Right around that same time, my skin started to become bothersome. It's been red since the first week, and was always a little itchy. Now it tingles (not burns) and is really red, particularly under my armpit and beneath my "foob." I'm keeping it covered in RadiaPlex, Aquaphor, and coconut oil, and hoping it doesn't get any worse. For some, it's awful. I feel lucky I've come this far in treatment without much damage to my skin.

A poster at BiB showing the lymphatic system

An insert used under my compression
sleeve to help push stubborn fluid
on its way. Left me with quite a mark.

Physical therapy is going well. I'm so happy to be in a sleeve rather than wrapping, and I've just recently found out that I'll get to have a pump at home, so I can manage the constant fluctuations from the comfort of my home. I've come to love physical therapy and my therapists. The entire staff seems to genuinely care. I'm nearing the end of treatment, and should be able to manage this at home. Honestly, I'm going to miss them. I almost don't want it to come to an end. Almost.

Doug and I went to Duke for that plastic surgery consult. In the end, I left feeling unsure and frustrated. That surgeon didn't think that rupture would be an issue, but that I'd have to stick with a smaller implant. I'm ok with that. Perhaps my local surgeon isn't? Anyway, he saw no reason to change to a flap, but if I did, I'd end up with smaller breasts anyway because they'd need to use the tissue I have around my midsection to make two breasts. I suppose if I was opting for an uni-breast I could get a real whopper?! And I could probably make some extra cash touring with Cole Bros Circus. I'm going to think about my options. I see no real reason to change surgeons if the procedure will be the same (oh, and they are pals, btw), and to travel several hours when the surgeon I'm seeing here is just as skilled in the OR.  If I decide to stay where I'm at, I'll need to have a talk with him about the issues that have built up over the course of my care. It's the responsible thing to do, and yet it makes me incredibly uncomfortable. Time to put on my big girl pants!

A week ago today I had the supra-cervical hysterectomy and had my port removed. Surgery went well, but it took even longer for me to recover than usual. I was wheeled into the OR just after 7. The port removal only took 5 mins. The hysterectomy was finished by 9:30. I didn't wake up, entirely, until just before noon. I had great care, as always, but I was particularly impressed with Cindy. I woke up to her smiling face in the recovery room. I remember feeling really connected to her and talking to her (serious, deep conversations), but forgetting much of it in that fuzzy state as they transferred me to my room. When she popped in to check on me that night, after her shift, it all came back to me. And I was so touched that she took time out of her personal time to come check in on me. I've been in good hands through this whole journey.

Slightly more awake. I insisted
on putting a touch of makeup on
and even sported some earrings
later in the day. You can see my
Lymphedema kicked in to overdrive
as a result of surgery. My left arm
was twice as big as my right.

Post-Op, just barely in my room.
My entire body was puffy from
the gas they pump you full of.
I looked so gross! And so out of it!

This surgery was easy, physically, but by far the hardest on me emotionally. Not only has it removed the remaining organs that make me female, but it has removed altogether any hope of bringing another child into this world. I'm won't sit here and moan on and on about it. I will say that I am heartbroken, and that everyday leading up to the surgery and every day since has been difficult. I'm not much of a crier, but I find myself in tears instantly at the thought of not bringing a child into this world that is a little bit of Doug and a little bit of me. I held it together the morning of surgery until the moment I realized they were getting ready to wheel me in. Doug had run out to the car to get my compression sleeve (not realizing they were going to move me so fast). I remember the nurse anesthetist unlocking the wheels to my bed. I looked up at my mom and felt the sadness and fear creep in. I think I whimpered "no" and just cried as they wheeled me down the hall. I remember crying as they gave me the Duramorph shot in my spine, and then there was nothing. I awoke feeling bloated. It's strange to feel so full when you are so utterly empty.  In the end, the decision was mine to make, and I'm confident I made the right one. Chancing another type of cancer when I have the power to levy a preemptive strike is ludicrous to me. I've been aggressive in my treatment so far and it would be stupid not to continue fighting with all my might. Still, it's a loss. A significant one, and it will take me much longer than even I realized to heal from this. At least the physical healing is going well. And, Dr. Foiles said that the tissue looked good. She doesn't suspect any cancer was present, but we'll wait on pathology for that final report. At least she didn't say the words "small chance" or "very rare." We all know how I fall into those categories whenever available... Hopefully this time, I'm really in the clear.