The post-surgery update

An abbreviated retelling of the last two months

I’ve been remiss (again) in writing an update to the blog. Can we all just acknowledge that I’m apparently as equally bad at updating the blog as I am at keeping in touch with everyone? And can I just totally own up to the fact that this is unlikely to change any time soon? If we can have a tacit agreement that communication will remain sporadic and that this is more than acceptable, then we can remain friends. And I’ll simply write blog posts as they come to me without introducing every post with an apology for my infrequent communication. As usual though, what I lack in frequency, I will make up in length. It’s about quality over quantity anyway (at least, that’s what I tell myself)! Also, as I have a lot to update you all on, I can say that at least this time, you’ll get two posts in short order. For those most interested in the results of my pathology after surgery, please scroll down to the section conveniently labeled “Pathology”.

Surgery

Right, so I last left you before my unilateral modified radical mastectomy and prophylactic lymphovenous bypass (try saying that five times fast). Much has happened since then, the least of which was the surgery itself. But allow me to step back and provide you all first with an update on surgery.

In regards to the unilateral modified radical mastectomy, I’m honestly not too sure what to say here. There’s the informative update on the immediate results and aftermath, and then there’s the longer, what it’s like to adjust update too. I’ll start with the informative update for now.

The mastectomy went as well as my breast surgeon had hoped for. As far as the reactions from my care team and nurses go, they were quite positive about the appearance of the scar in the immediate aftermath of the surgery. My reaction was a little less sanguine, though I wasn’t as horrified as I thought I would be. In addition to the removal of my right breast, my breast surgeon also removed the cluster of lymph nodes that is immediately in the vicinity of my right underarm, which resulted in the removal of 28 lymph nodes.

After I woke up from surgery, my most immediate source of pain was my right underarm. Any time I tried to move my right arm, I would feel an incredibly sharp, burning sensation. In fact, saying “sharp, burning sensation” makes it sound lighter and/or easier than it actually was. Suffice it to say that I wanted to swear like a sailor the first few times it happened. I had been forewarned that this sensation might occur, equally as much as I had been forewarned that my chest area would likely be numb. But, as always, it is one thing to have it described to you and another to actually experience it.

I have to admit that I have no idea what time I made it out of surgery, but by the time I was transferred to the room and coherent enough to be aware of the time, it was past 10 pm. My parents, aunt and uncle were there to greet me, along with my sister who was planning to stay the night with me. While I was initially surprised when I’d been told that I would be sent home after only one night in the hospital, I was actually grateful to know I’d be heading home after actually spending one night there. The night in the hospital was the only illustration that I needed of how nearly impossible it is to rest properly in a hospital (ironic, I know). There is someone or the other entering the room every couple of hours, at a minimum. It varied from nurses entering to check my vitals, or to introduce the next nurse before a shift change, or to evaluate my surgical sites, as well as doctors or PAs entering to check on me and/or provide me with post-surgery updates. Additionally, I couldn’t go to the restroom by myself, not only because my mobility was obviously limited by the surgery but also because the nurses were required to measure my output (TMI, I know).

I couldn’t wait to get home and get some semblance of uninterrupted rest. After early morning visits and updates from both of my surgeons, I was ready to be released by 8 AM. My actual release took a bit longer between care instructions, waiting on items to arrive that had been ordered on my behalf (e.g., a second surgical bra and a drain belt), but I was on my way home, in the pouring rain, by a little after 1 pm.

The updates from both surgical teams (breast surgery and plastic surgery) were brief. In fact, the update from breast surgery was essentially to tell me that the surgery had gone as planned. They asked me to follow the care instructions that I would be provided by the nurses, indicated that a prescription for pain meds would be provided, that the incision site was covered with a special glue, and that due to my body shape, I would have a bit of an extra bit near my armpit which could be surgically removed during reconstruction, if I choose to go down that path.

For the prophylactic lymphovenous bypass, the surgeon and fellow told me that they mapped out the lymphatic vessels in my right arm. The mapping process included a green dye injected into the web of my fingers (which took a couple of weeks to dissipate), along with the surgical team tracing the lymphatic system out on my arm with a purple marker. The mapping process identified three potential spots in which they could perform a bypass. They left one untouched as it could be a path for the future if, god forbid, I do develop lymphedema down the road. The second, they made the incision but realized that the width of the vessels was just at the cusp of what they were comfortable completing a bypass on. The whole goal of this prophylactic surgery is to hopefully avoid lymphedema. The last thing my surgeon wanted to do was to complete a bypass that was too narrow and therefore triggered the very thing I’m trying to avoid. The third, and final, spot they identified is the one that they completed the bypass on.

Now the obvious question that comes to everyone’s mind is: was the bypass successful? There is, unfortunately, no clear cut answer to this. If you evaluate the bypass alone, you could indeed say it was successful in that they were able to complete the bypass. But there is no way to know if the bypass was successful in helping me avoid the development of lymphedema. If, down the road, I don’t develop lymphedema, it will still be difficult to know if I didn’t develop it because I had the bypass or if it was simply my luck not to develop lymphedema. All I can say is that my goal is to try to do everything in my control to try to avoid lymphedema, including following lymphatic drainage techniques and wearing a compression sleeve as needed.

Once I was released from the hospital, I was sent home with two drains in, which, as I explained in my last blog post, are two bulbs that are attached to tubes still inside of my body used to collect fluid. The drains must be regularly emptied and their output measured as they cannot be removed until output reduces below 25 ml (per drain). Bluntly speaking, drains are a pain in the ass (perhaps better referred to as a necessary evil?). I found that the tubing of the drains, which are attached with stitches to your body, tugged and caused pain and sensitivity. The process of emptying the drains and measuring their output was also a nuisance.

In fact, the drains started to leak from the site where they entered my body over the weekend and we ended up coming to MD Anderson the following week just to ensure that there were no issues with the drains. I’m constantly reminded that care post-surgery, much less for something as complex as cancer, is never straightforward. The days of going to the doctor and being prescribed amoxicillin for a simple infection are long gone. But oh how I long for those days!

Getting home was an interesting process, requiring some pain meds, lots of pillows to keep my right arm elevated as well as a pillow under the seatbelt to avoid any pressure on the surgery site. I’d heard over and over again from women who said that sleeping in a reclining chair was the best option for recovery as it helps keep your arm elevated and prevents you from moving in a direction you shouldn’t. Luckily, we have a couch with reclining capabilities at home, so I made that my resting spot for the next week.

The next couple of weeks post-surgery were focused on regaining some of my mobility. I was given a set of simple exercises to do multiple times a day while the drains were still in, which I did religiously. Doing them was painful though. One of the exercises was deceptively simple. The exercise required that I simply bend my arm at the elbow to a 90 degree angle and then alternatively press my arm against the wall and then press it against my own side. After my first attempt, it became the exercise I dreaded most as it would trigger the deep searing sensation in my right underarm.

With time, and perhaps repetition, the burning sensation has mostly subsided though the odd action or unexpected touch to my back right arm will trigger it (huggers be warned when you see me – touching/tapping/stroking/etc. the back side of my right arm is painful for me. Please avoid it!). Additionally, hanging my right arm down in a “normal” way was impossible. I simply couldn’t keep my arm hanging for an extended period of time because it hurt too much. Instead, I would walk around the house holding my hands together at the height of my waist. With time, I am now able to walk normally if not for extended periods of time.

Overall though, I’m a stubborn person (as my family happily reminds me on a weekly basis) and I am determined to regain my range of motion. Once my drains were removed on 6/26/2018, I was cleared to begin working with PT and to up my exercises from the “with drains” set to the “without drains” set. Regaining my range of motion has been a slow process. Now almost six weeks after surgery, I’m still not able to fully extend my right arm up in a straight line when standing. Scar tissue and cording continue to inhibit my motion, no matter how hard we try at PT to break it up. Radiation is only making matters worse as it also tightens things up. Only time will tell if I will ever fully regain range of motion, but I intend to continue working at it every day.

Pathology

Before I jump into the results of the pathology report post-surgery, I need to start this section with a disclaimer. And yes, I’m “yelling” this disclaimer at you! IRRESPECTIVE OF THE PATHOLOGY REPORTS, I WILL STILL HAVE TO GET RADIATION DONE.

If my disclaimer didn’t give away the fact that my pathology report was good (hell, great), let me give that away now. My pathology results ended up taking slightly longer because the pathologists found atypical cells in one of the 28 lymph nodes, which they wanted to test further. After further testing of all of the tissue removed during surgery though, pathology was able to confirm that I had what is called a pathological complete response or pCR to chemo. This means that they were unable to find live cancer cells in my tissue (note: it is possible to have a pCR even with some small remaining active cancer)! This is the best news that I could have hoped for, and in my view, is worth the hell that was chemo and surgery.

I know, you’re probably asking “but if there’s supposedly no live cancer left, why do you have to go through radiation?”. The answer to this question is both straightforward and complicated at the same time. I’m going to give another disclaimer before I provide the answers to this question. That disclaimer is: I’m providing a nuanced answer not with the intent of being negative about the results so far or about the future but rather to paint a realistic picture of the challenge I face now and tomorrow. While some of you may want to take my pCR response and start to say that I “had” cancer instead of “have” cancer, it’s nowhere near that simple. I WISH it were that simple.

Please do me the favor of recognizing that my life has been and will be forever changed as a result of this diagnosis, the treatment I have undergone and the long lasting side effects. If the treatment of cancer is this complicated, imagine how complicated the prognosis and potential outcomes are, and how emotionally taxing it can be for me to acknowledge reality but still remain positive. I fully intend to get back to living my life with a new version of “normal”, but I would be stupid to pretend that my new life will look anything like it did before or that I have the luxury of burying my head in the sand about what could happen in the potentially not so distant future. Treating cancer as a bygone is simply not an option on the table for me. That option doesn’t exist now, not one year from now, not five years from now, not twenty years from now, and not even fifty years from now. Now on to the “why radiation” answers.

The somewhat straightforward answer to the question of why I still need radiation is as follows. From experience, the doctors know that just because you can’t find the cancer, doesn’t mean it doesn’t exist. There have been many examples of women with IBC who had a pCR to chemo who had quick recurrences or metastases even while receiving radiation. Additionally, one of the first women to complete the same chemo trial as me (that means she would have been triple negative (TN) IBC), and who happened to be a nurse, had a pCR to chemo and refused radiation. Unfortunately, she passed away as the cancer recurred and metastasized quickly.

In fact, doctors do not use the term “remission” for cases of IBC. In general, the term “remission”, which is so often conflated with “cured”, is being used less and less. Instead, for IBC, doctors use the term NED or no evidence of disease. It simply means that with current testing methods, the cancer cannot be seen (there’s no evidence that they can find), but it doesn’t mean that it doesn’t still exist at undetectable microscopic levels.

The even more complicated answer is in the statistics. A recent retrospective study published by the NIH on April 19, 2017 studied the outcomes of patients with IBC based on their hormone and HER2 status. As this retrospective study was done using data from 2010-2013, most of the women should have received trimodal treatment (trimodal meaning they underwent chemo, surgery and radiation if they qualified).

According to the study, the longtime outcomes for TN IBC patients is, bluntly speaking, dismal. It indicates that the probability of surviving past 40 months, or just over 3 years, is less than 40% for triple negative IBC patients. Additionally, “the loco-regional relapse and distant relapse rate were 38.6% and 56.7%, respectively” for TN IBC (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5564775/).

I don’t take the fact that I had a pCR lightly. It’s not something achieved easily, especially for TN patients. If you’ll recall, the chemo study I joined was established because the current standard of care results in a pCR for TN patients only 14% of the time. The study has bumped that percentage up to 44%, but achieving a pCR still only happens in less than half the cases. All of this means that having a pCR is a good sign for the future. But it’s not a promise.

There are obvious nuances that are not teased out in the retrospective study (e.g., outcomes for TN who were diagnosed Stage III vs. Stage IV, outcomes of those with pCR to chemo, etc.). Each case is individual, and I only need to be "the one" who somehow beats the odds. So I will do whatever I can to increase my chances of being the lucky one. That means radiation is a must and I’m not going to negotiate about it with my doctors.

There’s also some additional information that might come to light on my cancer. But as I haven’t had the chance to speak with my medical oncologist, I will hold off until I have all the facts. For now, I’ll leave you here with the promise to provide an update on radiation in short order (especially since I’ve already started it)!