Explanting

As I'd written about earlier, I decided to get a second opinion on potentially taking out my implants. One of my biggest regrets with all of my treatment was the fact that I did not get any second opinions. It wasn’t necessarily mandatory, as I decided early on that I trusted my care team, and needed to spend my energy getting through treatment and all other things. But was a very strange approach for me to take, as I’d done just the opposite for all of my family members’ illnesses—reading up on everything I possibly could. I have since come to realize that it was a necessary self-protection at that time. I don’t really regret any of the treatment that I got, and I don’t think that my care was harmful in any way. But given that I have had such issues with my implants since the beginning, I can say (with 20-20 hindsight) that I wish I’d have gotten a second opinion on plastic surgery. Most of all, I wish I had known that it was possible to reconstruct later and that I didn’t have to rush to work with a plastic surgeon from the start. 

After seeking referrals from several others who had been through different types of breast reconstruction, I decided to see Dr. Kinney, although reviews were also mixed on him.

I am so glad that I chose him. He spoke to me as an educated person and he listened to what I wanted (or thought I wanted) and explained possibilities. Most of all, he repeated that whatever decision I made now did not have to be a permanent decision. If I decided to go flat, I could come back in a year or two or ten and he would be able to construct breasts from either my inner thighs (bonus!) or my butt. (Since Sterkin had already used my stomach for liposuction, that would be a bit iffier, but potentially also possible.) He explained the method of surgery that his office does for reconstruction which, unlike “older” methods, uses fat and the fat’s blood supply and does not touch any muscle. And that he will use implants if someone wants them, but that fat makes a softer, nicer breast, so he seldom uses implants. He acknowledged that Dr. Sterkin is an excellent implant surgeon, which I would agree with. Finally, he told me that he could take out the entire capsule (en bloc) surrounding the implant and wouldn’t have to leave some behind, like Dr. Sterkin said he would have to do. I told him that Dr. Sterkin was concerned about causing a pneumothorax, and while Kinney acknowledged that it was a possibility, he has a technique to minimize that happening, and even if it did happen, it simply meant that the lungs would have to be re-inflated and I’d have a chest tube until it healed. (Not something I’d enjoy, but if it means the full capsule comes out, it’s a worthwhile risk, I think.) He also said that he would remove the dead fat from my other surgery (to put in the implants) and send it to pathology to ensure that it is, truly, only dead fat. After two and a half years of wondering about that, I consider that a welcome bonus. 

So my explant surgery without reconstruction is scheduled for 11:00 am on Tuesday, June 18. It will (hopefully) be an outpatient surgery. I will (hopefully) be out of work for only a week, and off my bike for two weeks (can ride a stationary bike, but not move my arms). And then I’ll have PT (with the amazing Dr. Leslie Waltke) and hopefully the pain and numbness and shoulder issues will be better. And my favorite “perk,” as told by one of the bike salespeople where I bought my new bike (more on that later) is that by going flat I’ll be more aerodynamic on the bike! If I feel the need to have “breasts” that are about as functional as the fake ones I currently carry, Cara has promised to knit me a pair of knitted knockers. (Actually she thinks I should build a collection, all lovingly hand knit by friends.)

One more thing about breast implants:

I had posted before about the increasing link between textured implants and breast implant associated lymphoma (BIAL). There have been hearings recently, in front of the FDA, asking for removing textured implants from the marketplace. Several other countries have already done so. Basically, the US FDA will not be removing textured implants, but will increase the reporting requirements of adverse effects and increase the notification and warning to women before they get implants. One other thing that came up in the FDA hearings is something called “breast implant illness,” a non-specific autoimmune disorder that has been used to describe such varied symptoms as fatigue, skin disorders, intestinal upset, and almost anything else that you can imagine. I must admit that I have brushed it off, as there are so many disorders without scientific basis that are somewhat a product of suggestion (culture-bound syndromes). And most of the symptoms that have been blamed on BII are symptoms that arise from most breast cancer treatments. But the FDA, while not going so far as to acknowledge that BII exists, did agree to include the possibility of immune dysfunction following use of implants, and added that to one of the things that women should be warned about prior to surgery with implants. And while I’m still not 100% convinced, there does seem to be some anecdotal evidence that women with an existing autoimmune disorder have more symptoms after getting implants. I do have an autoimmune disorder (ITP), and I wouldn’t complain if, by removing these implants, my body aches, fuzzy brain, immense fatigue, and any other symptoms disappear!

Since my last post, I have had another 6 month check with Dr. Shah (still NED!) and another round of Zometa infusion. Dr. Shah is pregnant again with another little girl. What a great measure of time moving along, as I was nearing the end of my active treatment when she was pregnant with her first. I had insurance issues with getting the infusion the same time as my Dr. Shah appointment, so I got two appointments instead of just one. It did give me a chance to try out being poked in my lymphedema arm, however. And the phlebotomist got me with her first poke and I didn’t bruise or anything.

Greg surprised me by showing up at my infusion, since it was at the end of the day. And when I got home, he’d bought flowers. Given how hard the infusion hit me the last two times, I decided to pre-medicate with Advil and Tylenol before and through this infusion. I took a total of seven rounds of 1 Advil + 1 Tylenol, and not only was it much less terrible of a process through the infusion, but that many NSAIDs had me pain-free for the first time in ages. I literally was skipping around! I certainly can’t take that many NSAIDs regularly (besides liver and kidney damage, it’s not good for me to take them with ITP), but if I have something big coming up (like, say, riding a Century…), they could be helpful. J

Which brings me to my other big news—which those of you who read my Facebook already know.  Team Phoenix introduced me to biking, which I love. And I started 2019 with a goal of riding 2019 miles this year. I also want to ride a century (100 miles). Which is possible, but would be more difficult, on a hybrid. So all my biking friends have been telling me that I should get a road bike. While I was going to wait until next year's big birthday, I taught a class at UWM as an adjunct, which gave me some extra money that I wasn't expecting. And so I decided to look at bikes. And somehow, after months of comparing online and in stores, I ended up with an amazing, beautiful, fast road bike, who I call Roz. I feel quite spoiled, but she makes me very happy.

(Photo from Trek website)

Surgery in one month from today. I can do this. :)

Return of the Roller Coaster

Over three years ago, when I was first diagnosed, I wrote a post about feeling like I was on a roller coaster. My friend Katie gave me that visual, along with the permission to throw my hands up and scream some of the time. Well, I have felt like I've been on a roller coaster more than I'd like these last few years. Sometimes there's a long stretch of easy, winding track, but then the steep inclines and the gut plunging dips come along.

Last week was my routine 6 month check-up.  It's really nice to not have such frequent visits, except that I now usually have a huge list of questions for Dr. Shah. This was no exception.

My lab results were good. 
Platelets holding at 88K
Everything else in the normal range

Unfortunately, I've gained 7 pounds in the last 6 months. I kind of knew this, but it was still depressing to see in my chart. I've been more active this winter than in any winter I can remember, but not as active as I'd been the previous 6 months. I think I need a workout buddy. I'm hoping that volunteering with Team Phoenix 2018 will get me back into a better routine. (I wonder if I can get a copy of this year's plan and follow along on my own to build back up to that awesome strong place that I was last year...)

I'm nearing the two year mark on aromatase inhibitors (first Arimidex, now Femara), so I will need a bone density scan before my next appointment in 6 months. (The aromatase inhibitors decrease estrogen, which frequently results in loss of bone density.) 

While Dr. Shah was examining me, I mentioned that I'd had some trouble swallowing on occasion (usually when I'm drinking water and I kind of choke on it) and that I felt like my neck was a little swollen. She felt my neck and then looked at it, and said, "Oh. And the swelling is uneven." I said that I felt a lump lower, too, on my left clavicle. She said, "let's order an ultrasound to make sure nothing is going on."

And here's where the roller coaster takes off.

My brain thinks all of the following, in this order:

• How nice that Dr. Shah senses my concern and is ordering an ultrasound to put my mind at ease.
• She must have an inkling that something is wrong, or else she wouldn't have ordered the ultrasound.
• (I'm just going to google what a swelling in the neck/throat after cancer could be.)
• Oh yeah, my thyroid is in that area. Thyroid issues cause weight gain, tiredness, numbness or tingling in the hands, hair loss. I have all those things. That might explain why I have all those things.
• Huh. Research shows that there is an increased chance of thyroid cancer if you've had breast cancer.
• Oh. My. God. I have thyroid cancer. I KNEW IT! I can't go through cancer treatment again. I just can't.
• OK, a secondary cancer is actually better than metastasis of the original cancer. There's better outcomes, as long as the secondary cancer isn't Stage IV. I can do this.

Of course my insurance plan has just added a new program called, "CancerCARE," and touted as "helping prevent you from receiving inappropriate or delayed care." Their oncology nurses review every treatment plan so you get "the best care." What it really means is that now every cancer-related treatment must get additional approval from their oncology nurses before the patient is allowed to receive it. So I didn't get the ultrasound for almost a week. Plenty of time for all those crazy thoughts to percolate.

Then I'm in the ultrasound and the tech looks at my thyroid and tells me it looks great. At least 50% of people have benign nodules in their thyroid--usually lots. I have one tiny one. (No thyroid cancer! But then what explains my exhaustion and weight gain?)

She then moves to the left clavicle and it takes awhile to get a good image of the bump on it. It is not, as Dr. Shah thought, just that my clavicles are uneven. It is actually a lymph node that is located in front of my clavicle, and it's somewhat enlarged. A lymph node can be enlarged for any number of reasons, so this is just a wait and watch situation. But at least nothing to worry about now. 

The last thing Dr. Shah had discussed at my appointment last week was something I'd asked her about at my last two appointments: using a bisphosphonate (Zometa or others) to prevent osteoporosis and bone metastasis. The Femara that I am taking (as with any aromatase inhibitor) is known to have a relatively frequent side-effect of osteoporosis. One of the ways to counteract osteoporosis is with use of a bisphosphonate, which acts by inhibiting osteoclasts (which break down bone) and allowing osteoblasts (which build bone) to work more effectively. Research showed that when women were on bisphosponates for bone loss, they had a decreased chance of bone mets developing. As with all research, a single study doesn't prove anything, but three studies back in 2011 gave at least some support to starting bisphosphonates even before bone loss occurs. I'm not sure if Zometa has made it into standard of care, but Dr. Shah actually was the one who brought it up this time. It is an infusion (i.e.: given by IV) that you get every six months for five years. Side effects include a few days of flu-like symptoms, and possibility of osteonecrosis of the jaw, which is much more scary.

And this brings me to even more frustration with CancerCARE. Normally, I'd have left the exam room after my check-up and walked to the infusion bay, gotten my Zometa, and not had time to worry about it. Instead I was not able to get approved and then administered the Zometa for 9 days. 

In the end, it all went well. Greg saw how worried I was (I get PTSD when I have to sit in the chemo bay), and went in late to work so he could make sure all was going well. I got an AWESOME nurse who took her time to find the best possible vein, and got my IV in on the first try. I have had the flu-like symptoms (achy, chilled, tired), but that improves when I take a Tylenol and an Advil. And I don't have to do this again for six months! 

And so I'm back to that nice, cushy straight-away on the track, where it's good to be outside, feeling alive. Where I vow to do my best to appreciate all the good in my life--including my current good health. Where I think that this may actually be the time where I stop worrying about every little thing being a return of cancer. 


For the record, I've never liked roller coasters...