Surgeries on 6/13/2018

It’s time to say farewell to this stupid boob and, for good measure, get some cuts along my arm too!

Saying farewell is something I’ve learned to be good at over time. It comes part and parcel with living a somewhat nomadic lifestyle. You have to let go of what has been in order to truly appreciate what is to come. In fact, focusing on the positives of what’s to come has often been the means through which I move past the sadness of saying goodbye, whether it be to friends, a place, or simply a moment. I say farewell knowing that I’ve been enriched by that connection or experience; an enrichment that will make my appreciation for the next step that much greater. I liken these experiences to chapters in a good book, a page-turner if you will. As much as you loath turning the page, doing so is absolutely necessary to continue the story.

But in the story of life, there are always chapters that insert themselves with or without your consent. Cancer is certainly one of those chapters. Hell, it’s an entire plot diversion. Unlike a “choose your own ending” novel though, cancer is too complicated a plot diversion to even begin to imagine what direction to head in next. The twists and turns of: a) the cancer itself (will it metastasize, will it respond, etc.), b) treatment options and protocols, c) your body’s physical reaction to treatment, d) your emotional reactions, etc. are infinite. In the midst of this cancer chapter, it feels nearly impossible for me to see what comes next.

And since I can’t really see what comes next, I find myself, for the first time in a very long time, at a place where I’m unprepared and unwilling to say farewell. I can’t seem to find the positives in order to get past the bitterness of parting with a part of my body (Let’s please get past the obvious “positive” that this is in a bid to save my life. I’m well aware of that fact, thank you.). While some women view their cancerous breast(s) as traitorous and are happy to get rid of it/them, I’ve never fallen into that category. I’ve never viewed my right breast as the enemy nor have I ever felt betrayed by it.

The Next Plot Device

Now whether I am truly prepared or not, the next plot device to advance my story is on the horizon: surgery.

Sidebar: Let’s be clear, as much as I say that I feel like I’m unprepared, that’s not technically true. I’ve known that I will be getting a mastectomy at some point in time since I started treatment. But being on the precipice of surgery is very different than knowing it will happen at some distant point. Also, unlike the loss of a body part due to an accident or some other misfortune, I am making the active choice to remove a part of my body. I take full ownership for the decisions I am making in regards to my care. While cancer is obviously not a choice, my attitude and approach to its sudden appearance in my life is well within my hands. I always have the option to do nothing or to refuse the advice of my doctors. I can, in principle, opt to not have the mastectomy. Doing so is a seemingly surefire way to shorten the length of my life, but the option certainly exists.

As I’ve mentioned before, I’m relatively ambivalent about my appearance and my body. My feelings about surgery are therefore somewhat complex. While I’m not attached to my appearance per se, that doesn’t mean that I don’t worry about how I will react afterwards. Mastectomy scars are not pretty (feel free to Google images if you are curious). Reconstructed breasts, especially those reconstructed using skin and fat from elsewhere on the body (which is my only option if I choose to get reconstruction a minimum of one year after the end of radiation), are also not visually all that attractive. Again, feel free to use our friend Google for your edification if you so choose.

Adjusting to life as a “uniboob” will be complex and comes with a set of challenges that I will find myself going through somewhat alone. And by alone, I mean that (thankfully) none of my friends are going through this. I am fortunate though to be going through this experience at a moment where there is a lot more recognition for the need for more connections for young adults dealing with cancer and its aftermath. I’m already a part of one such network and will seek others out as needed.

But the reality is that I will face a set of challenges that will be difficult for others in my pre-cancer sphere to be able to relate to. Whether it’s the physical changes to my body, the emotional toll of adjusting to a new way of living, or a lifelong worry about every itch or twinge in my body. There are also seeming hurdles that I don’t even know how to approach, such as how to even begin the process of trying to find a significant other when I not only have the lovely baggage of cancer but also a changed physical appearance.

P.S. Yes, I’m aware that a tiny violin is playing somewhere since I’m complaining about only the loss of a breast. In some ways it’s nothing compared to the challenges faced by many others in this world. For example, it’s nothing compared to those dealing with Stage IV cancer, to those with significant disabilities, or even compared to those who are fully abled but constrained by location, resources, education, etc. from pursuing their dreams.

All I do know at this point is that a) I’m getting ahead of myself and b) the only way to face whatever challenges and hurdles may appear in my path is to take them one day at a time, as they appear. Now enough with the prevaricating, let’s talk surgery. On Wednesday, June 13th I will be having both a unilateral modified radical mastectomy and a prophylactic lymphovenous bypass. You’re probably asking “you’re having a what, what, what?” right now, so allow me to briefly explain both procedures and also try to answer some common questions I’ve been asked. I must also make the disclaimer that I am not a physician and the information presented here is only my understanding of what I have learned.

Unilateral Modified Radical Mastectomy

You’ve probably heard multiple terms out there when it comes to surgery related to breast cancer. You’ve likely heard of a lumpectomy as well as the term mastectomy, amongst others. In reality, there are around five different types of mastectomies that can be performed. For those wanting to learn more about the different kinds of mastectomies, I’ll refer you to: http://www.breastcancer.org/treatment/surgery/mastectomy/what_is rather than explaining it myself.

What’s of most importance, for me at least, is the fact that I will be having a unilateral modified radical mastectomy. A modified radical mastectomy is the second most extensive type of mastectomy that can be performed. It involves the removal of the entire breast as well as an axillary lymph node dissection (removal of the lymph nodes in the underarm area). Unlike a radical mastectomy, a modified radical mastectomy does not touch the underlying chest muscle. Radical mastectomies are performed a lot less frequently these days because modified radical mastectomies have proven to be equally effective in many cases. Unilateral in my case means that I’m only having one breast removed (the right one that has the cancer, of course).

In my case, my Breast Surgeon will make an incision that extends from the start of my right breast across to my underarm. She will remove a section of tissue under my arms in order to capture as many lymph nodes as possible. Additionally, since this is non-skin sparing, she will remove as much skin as she can while leaving just enough to be able to close the incision. The stitches will be in one long continuous line across the right side of chest and then up into my underarm area.

Why exactly is she removing lymph nodes and as much skin as possible you might ask? The lymph nodes have to be removed because a) I already have cancer in one of them and b) they are one of the means through which IBC spreads to other parts of the body. Removing as much skin as possible is also important because metastasis to the skin are quite common with IBC and we want to reduce that risk.

What about negative margins? What are they and how does your surgeon ensure she has them? Negative margins refers to the concept of having a margin of cancer-free tissue around the cancerous tissue that is removed. This is necessary in order to help reduce the chances of a metastasis or recurrence. As it’s been explained to me, during surgery, the team will immediately take the tissue that is removed and using a simplified process involving dye to determine if any cancerous tissue is too close to the margin. At this time, I have to admit that I don’t know the definition of “too close” and will need to ask my surgeon. If the dye process reveals that the negative margins are not large enough, my Breast Surgeon will immediately remove more tissue while I’m still on the table.

Pathology report – what is that and why is it relevant? The process of evaluating the tissue that has been removed doesn’t end with the dye process mentioned earlier. After surgery is completed, the pathology team will analyze the tissue further to: a) confirm that their assessment regarding the negative margins was accurate and b) to determine how much (if any) active cancer remains. The likelihood that the negative margins weren’t wide enough is slim, but should they determine it wasn’t wide enough, I will have to have surgery again. Additionally, while a discovery of active cancer doesn’t change my immediate treatment protocol (radiation approximately 4 weeks after surgery), it does give my medical team a sense of how successful chemo was and if additional chemo might be required post-radiation. It’s important to note though that since I’m triple negative, it does limit the amount of options available to me post-radiation if there is a lot of active cancer left. But we will cross that bridge if we get there. The pathology report will take anywhere between one to two weeks to be completed after my surgery.

How long will the surgery take? This is a harder question for me to answer at this moment. A modified radical mastectomy usually takes somewhere between two to three hours, however, I am also having an additional procedure done at the same time (see below for more information on the prophylactic lymphovenous bypass I’ve elected for). I don’t currently know how long the second procedure will take so I don’t have an accurate answer for you right now. But what is important to note is that this is still considered an outpatient procedure and I will released from the hospital on Thursday, June 14th. I will be on what is called “23 hour observation” where I will spend the night at the hospital, but I will not be considered inpatient. This is all assuming that there are no complications, of course.

So why aren’t you doing reconstruction immediately? Based on the current leading opinions on IBC, immediate reconstruction is not an option. Reconstruction of any sort is not recommended until at least one year has passed since the end of radiation. There are a multitude of reasons for this. The first is that since radiation will occur shortly after surgery, you do not want to radiate a reconstructed breast. The reason for this is two-fold: 1) a recreated breast makes it more difficult for the radiation beams to hit the targeted tissue and kill off any microscopic remaining cancer and 2) radiation can affect the acceptance of the reconstructed breast by the body. Additionally, the highest chances for recurrence are within the first year and within the first five years post-treatment (in that order). Specialists in this area do not want to have anything that can obstruct the detection of a recurrence within the first year. And of course to complicate matters, the use of implants is discouraged for IBC patients. If you do eventually choose to have your breasts reconstructed, this can be done but only with the use of skin and tissue from elsewhere on the body. If you were to reconstruct a breast from skin and tissue from elsewhere in the body and then radiate it, you significantly increase chances of rejection by the body. Getting to radiation is far more important than starting the complicated and arduous process of reconstructing a breast.

Will you be in a lot of pain? What happens immediately after surgery? It’s hard for me to answer the question about pain because I honestly have no clue. While many of the women in the IBC group I’m a part of have said that their pain decreased after a couple of days, it obviously depends from woman to woman. I’m also the type who prefers to deal with a bit of pain than run the risk of getting addicted to pain medication, and I will most likely stay true to form even now. What I do know is the following:

- I will be sent home with drains in. Drain tubes and drain bulbs extend out from the surgical area and are used to collect blood and lymphatic fluid. These tubes will remain in until the amount of fluid collected each day reduces past a certain point (about 25 ml in total, not per drain). On average, the drains remain in for about two weeks, however, I have personally heard examples of times where they have remained in for six weeks or more.

- I am not allowed to lift weights over 10lbs for at least two weeks post-surgery.

- I am not allowed to lift my arms past shoulder height for approximately two weeks post-surgery.

- Many women say that their chests feel numb after the surgery due to the removal of the breast tissue and skin where nerves were located. Instead, they experience a burning sensation on their underarms where cut nerves from the axillary lymph node dissection are regrowing. This burning sensation can last for six weeks or longer.

- I will begin seeing a PT specialist and a lymphedema specialist shortly after surgery. PT will help me regain my range of motion while a lymphedema specialist will work with me to provide exercises on how to prevent and/or detect lymphedema (more on lymphedema in just a second, literally).

Prophylactic Lymphovenous Bypass

You’re probably thinking to yourself “that’s a lot of words that don’t make a lot of sense”! Before I can even begin to explain what a lymphovenous bypass is, I first need to touch on the subject of…you guessed it…lymphedema! Let me try to provide a brief overview.

We all have a lymphatic system which is a network of vessels that helps the body get rid of toxins, waste and other unwanted materials. Lymph nodes are a part of the lymphatic system and serve as “cleaners” that help protect you from bacteria, viruses and other unwanted invaders. While there are hundreds of lymph nodes throughout the body, there are certain areas in which clusters of lymph nodes can be found, such as in the underarm area.

Lymphedema is a condition that develops when there is an impaired flow of the lymphatic system. The impairment results in the swelling of one or more extremities of the body as fluid collects and/or gets trapped there (e.g., leg or arm). Lymphedema can range from being only mildly apparent to being debilitating and severe. If long-term accumulation of fluid and proteins in the tissues occurs due to lymphedema, then a person can develop scarring and thickening of the skin that can result in the loss of mobility and/or flexibility. Additionally, those with lymphedema must be careful with infections to avoid the development of sepsis.

There are some things that can be done to reduce the risk of developing lymphedema. Historically, these measures were along the lines of avoiding restrictive clothing and/or jewelry, avoiding heat (e.g., a heating pad) on the affected side, avoiding heavy lifting, etc. But these measure seem inadequate for what can be a serious problem over a lifetime.

There is no cure for lymphedema once it develops. Treatments are designed to reduce swelling and manage other symptoms, and may include tools such as compression sleeves and pneumatic compression devices. Breast cancer patients who have undergone surgery and radiation are often at risk of developing lymphedema. For IBC patients in particular, the risk of developing lymphedema is as high as 60%, in part because of the removal of the lymph nodes from the underarm on the cancerous side.

Doctors have, in recent times, developed additional measures to help manage lymphedema once it develops. Surgical procedures include performing a lymph node transfer and/or performing a lymphovenous bypass. I’ll explain more about these two surgical procedures, but it’s important to note that both of these options have only existed after someone develops lymphedema. The two surgeries, in a couple of brief sentences are:

- Lymph node transfer: This involves the transfer of lymph nodes from one part of the body (typically the groin area where there is a cluster) to another part of the body where lymph nodes have been removed (e.g., to the underarm). In IBC cases where doctors have completed a lymph node transfer prophylactically, they’ve often completed the transfer while a patient is undergoing reconstruction surgery, though there is no requirement that you do the transfer while another surgery is being performed.

- Lymphovenous bypass: With a lymphovenous bypass in a patient who has already developed lymphedema, the doctors first determine where there are blocked lymph vessels in the extremity where the bypass will be performed. For those vessels that are blocked, they reroute the vessels to the veins by using microsurgical techniques on the extremity and then performing the bypass. This helps ensure that lymph fluid continues to drain properly and reduces swelling and discomfort.

Both of these surgeries have proven to be such effective measures to help manage lymphedema once it develops that doctors began to wonder if the procedures couldn’t be performed prophylactically (or proactively) instead. Why wait for a patient to develop lymphedema, a lifelong condition, when you could potentially spare them the trouble? The issue was convincing insurance companies to get on board with a prophylactic approach. Luckily there are doctors who have pushed to have research studies approved to determine if there is an advantage to performing either of the surgeries prophylactically.

In my case, I cannot have a lymph node transfer done prophylactically due to the radiation I will receive immediately after surgery. There is a high risk that the radiation would essentially “kill off” the transferred nodes, which would defeat the purpose of having the transfer to begin with. But I can participate in a study that is evaluating the effectiveness of a prophylactic lymphovenous bypass. While this will further impact the immediate use of my arm immediately after surgery, the arm itself will not be radiated so it’s safe enough for me to have the bypass done.

To be clear, there is a risk that having a lymphovenous bypass done prophylactically can all be for naught. Because I don’t actually have lymphedema, my doctors will have to make their best educated guess as to which vessels may potentially get blocked in the future and perform a bypass on those vessels. That means that I still run the risk of developing lymphedema if they’ve “guessed” and completed a bypass on the “wrong” vessels. Also, there are risks associated with the surgery itself that the vessels that are rerouted end up getting clotted. But given the fact that I have a high probability of developing lymphedema, I’d like to do everything I can in order to prevent it.

As with so many things related to this disease and its treatment, only time will tell what will happen. I take comfort in the knowledge that I’ve informed myself of my options and am trying my best to select or push for the treatment(s) that feel right for me.

Tomorrow, 6/12 is a long day of pre-operative visits and then 6/13 will be my surgery date. I hope to be back with a positive update once my pathology report comes through. For now though, I will leave you here with a humble request to keep me in your thoughts on 6/13!