• carrie berry

My Mastectomy Story

Updated: Oct 8, 2019


As you can see from the picture I was absolutely thrilled to be there. My left arm was strapped to my body and there were 2 JP drains draining fluid out of my nipple and armpit. I had not washed my hair for a week but would you even know me if I didn't take a picture to document the process?


I am writing this post with some reluctance because thinking about those few weeks has been hard, and there were so many things and emotions going on that I’m struggling to recall them all, and it's also pretty embarrassing for me to expose the nitty gritty details of something so personal. But it is important and therapeutic for me to spill everything in my heart and share this because when I was going through my worst fears and basically having a mental breakdown, what kept me hopeful and calmed me down was reading the stories of other breast cancer survivors who have so generously spent time to share their tips of how to overcome. While some cancer patients seemed really ill and in pain, I realised that some looked really strong, confident, empowered and happy, and the latter was the kind of person I wanted to be no matter what the outcome would be for me. This thought motivated me throughout my treatments, and now that I’m nearly recovered, I would like to project the same possibilities to whoever needs it.


After 4 months of breastfeeding in December 2018, I had a 40° fever and saw the doctor for mastitis. I had a hard time breastfeeding since day 1, but the left side was particularly troublesome all along. She felt the lump and told me to massage frequently and take hot showers. Blocked milk ducts are super common, she said. Shortly after that, I would bleed when I pumped. I asked friends who told me that bleeding was common when pumping hard, google confirming my self diagnosis, so I lowered the strength of my pump and everything was fine again. Then I had my masseuse touch the lump and she said that everyone has these while breastfeeding, and it will go away as soon as I stopped. When Bevy reached 7 months I stopped breastfeeding and the lump did not go away. I went immediately to a breast surgeon still anticipating that milk is probably stuck there. I did a core needle biopsy on the same day and on March 22, 2019 i was diagnosed with stage 0 cancer DCIS. DCIS isn’t really anything, the 5-year survival rate is 99.9%, it’s so irrelevant that critical illness insurance doesn’t even cover it. The plan was to have a lumpectomy (just cut the tumor out) and sentinel node biopsy in my lymph nodes just to be safe. During the 2 weeks time between my biopsy and my surgery, my tumor grew substantially from a pea size to 5cm large (I’m guessing the biopsy triggered this), but my surgeon is one of the best in the city and was confident in a segmental excision of the tumor (cutting a long triangle shape out, including some of the skin, while maintaining the shape of my breast). Although implants are now proven to be a rare cause of lymphoma, the safest type of smooth silicone implant was measured in the rare case that the tumor margins were not clear of cancer and a mastectomy was needed, because I was not mentally ready to wake up to no boob. I had no idea what size and shape and type of implant I got because I was tearing up through the appointment and I could no longer recall what the doctor told me. I didn't even check out what the implant looked or felt like, so it's amazing that it turned out pretty good in the end - another reason to just find the best doctor possible and trust them completely. I had an MRI and mammogram after that to confirm the location of the tumor, and a liver, kidney, spleen and esophageal ultrasound to rule out additional tumors. The MRI showed that one lymph node was enlarged, but the doctor was not worried because sometimes breastfeeding enlarged the lymph nodes too. Since the biopsy showed DCIS, it was unlikely it had spread to my lymph nodes. I was pretty relieved and confident all the way up till the surgery.


It was the start of a downward spiral of fear and depression when I woke up from surgery on April 3rd, 2019 with a full mastectomy, the backup implant put in, and complete axillary node dissection (all 24 lymph nodes on my left armpit were removed), having been informed that the cancer has metastasized to my lymph nodes and the entire breast couldn’t be saved, putting me at a stage 2 or 3 diagnosis. I woke up and asked the anesthetist how long the surgery lasted, he said 3.5 hours and I already knew it wasn’t good, as I knew a lumpectomy would’ve only taken an hour or two. I remember my catheter was extremely painful in my ankle because they couldn’t be in my arms due to lymph node dissection (they need to compare both arms for swelling so there can’t be any needles in either arm), and there was a machine wrapped around both my legs for the whole night (OMG - insanely uncomfortable combined with the catheter) to improve circulation and prevent blood clots. The exchanges after that were blurry, but i remember being in shock, followed by tears of my husband and parents, and then more utter shock and disbelief resulting in zero appetite and sleeping pills for the next 11 nights. To shorten this tremendously long story, what happened was that my tumor consisted of a 5.5cm DCIS tumor with a 0.5cm invasive cancer on the edge, which was why it wasn’t detected on the biopsy. That 0.5cm cancer was grade 3, already malignant enough to spread to my lymph nodes. I was lucky I had a big non-invasive tumor attached to it or else I may have never felt it until it was too late. A PET CT scan was scheduled for the 10th day post op to check if cancer had metastasized to anywhere else in my body. This was so utter hell for me, the longest wait in my life and the most despair I have ever felt. I already knew that any metastasis exceeding my lymph nodes would lower my 5 year survival rate from 93% to 22%. I really couldn’t wrap my head around having a stage 4 prognosis at 33 years old. I started gagging at least 30-40 times a day, I later realized from my therapist that this is a classic anxiety symptom. I could no longer eat from severe nausea (another anxiety symptom), and I had quickly lost 10lbs in 10 days, but I tried my best to shovel food down my throat anyways in preparation for intensive chemo. My doctor told me that judging from the current situation I would be looking at a maximum of 8 rounds chemo and 25 rounds radiotherapy, all of it was too overwhelming for me to handle. I spent the next 9 days in bed gagging (this sounds real funny now but it was really sad at the time), reading books, hanging out with Jerry and my parents, praying, talking to the hospital chaplain and some other occasional visitors, and taking a walk 3 times a day (I was not allowed to leave my floor with 2 holes in my chest and holding a bag of bloody fluid, so the walk was literally to and fro a 10 meter hallway). I didn’t see my baby at all and was pretty heartbroken at the prospect that I may have to leave her. Sometimes my parents or Jerry would facetime me with her and i would draw the blinds and cry after I hung up. Mentally, I was trying to distance myself from her in preparation that I may have to leave her. I started feeling pains in my bones and pain in my right ovary, which thinking back is probably just from ovulation and also lying down for too long, but at the time i was sure the that the cancer had spread. I think most people have come to terms and accepted their diagnosis before heading into treatment and that seems like it would be easier. The fact that I was thrown a curveball while I was recovering from surgery and confined to a hospital room away from my family made it a lot more depressing.


On day 10 I did the PET CT scan alone and none of my family came to visit because the radioactive injection emits radiation from my body, hence making me, literally, radioactive. I waited 12 hours for the results, 10 of which I was praying relentlessly - this was when i experienced a life changing realisation of the power of prayer. Though I was terrified, the sense of peace and safety I experienced, and my gradual acceptance for things I couldn't control, grew stronger through prayer and continued to strengthen later through my treatments. The hospital chaplain, and now someone who I'd like to consider my friend, Julia, told me that a mother's prayer can move mountains. With Bevy in my mind God will listen intently, and my prayers were later answered. When my doctor came for rounds at 9pm and told me there was no metastasis I literally grabbed her and gave her a mini arm hug (NOT really socially acceptable here). After 10 days of gradually accepting my eminent death, and reflecting on my entire existence, I was given another chance at life!


You may be reading this post for a variety of reasons, but I mainly want to share the below tips with fellow cancer patients who, like myself, are scared and do not know how to face their diagnosis or prepare for their mastectomy.


PAIN AND PHYSICAL

  • I had very minimal surgical pain other than the stupid catheter in my ankle. I couldn't really move well because my arm was strapped down and my chest muscles were not working because they've obviously been butchered. So when i moved with my upper body, it was extremely difficult (like i had worked out way too hard). But when i was not moving or just walking around, zero pain. I even refused all pain medications starting day 2. They gave me mucus thinners the first few days, even though I had no mucus, i assume so that I wouldn't feel pain through coughing or chest congestion.

  • I brought my unicorn button down pajamas to give the nurses easy access to my wound. They were also pretty low cut (meow) which the nurses loved. You won't be able to wear anything that isn't button down for about 1 month at least, not because you can't but because lifting your arms too soon is not good for you. Even if you could, why push yourself? I was instructed to buy post surgery bras but ended up not using them because my bandage was better able to push my implant down to a more natural position.

  • Cold sweats in the middle of the night happened frequently post surgery, probably a side effect of the anaesthesia administered. Remember to bring extra sets of PJs to the hospital, and when you're home, you may want to keep a robe or extra clothes near your bed so you don't have to walk around in cold sweat looking for clothes.

  • All the blogs i read said to bring a fanny pack to put your drains in to that you can walk around with your hands free. Honestly, do you really need both hands free when there is absolutely nothing to do in the hospital? Also the nurses sterilize the JP drain religiously to prevent contamination. If you're going to put the drain in something, you better make sure that the bag is sterilized too. I couldn't be bothered in the end, and i was also too depressed to care about anything, so i just carried my drain baby everywhere with me. They wrapped it in a doggy pad to provide an extra layer of protection and to protect my pajamas from the iodine sterilizer which stains heavily. Implant infections are related to cases of implant related lymphoma, so it's important you take your hygiene seriously. Especially if you are discharged from the hospital before the drains are taken out, don't take the sterilization process lightly.

  • I was ordered to sleep at a 30 degree incline on all my nights at the hospital. I assume that this was to ensure the force of gravity on my implant because it'll easily move up the chest and heal in an unnaturally high position if you don't push it down. The doctor even told me to push down on it myself occasionally, which seems rather unprofessional to me cause uhhh excuse me I don't know what I'm doing! But it ended up healing in a very natural position. After I got home i also realized that it is impossible to sleep flat for the first week or 2 because it is very uncomfortable on your chest, and also you can feel and hear the fluids sploshing around inside if you are not inclined.

  • You won't be allowed to remove the drains until there is less than 30ml of fluids per day coming out of the wound. On youtube I watched so many women waving their arms around like a maniac to show their incision site and share their story, but the wise have informed me that the fluids will slow down very fast if you don't move your upper arm at all. I was literally strapped down with velcro so that I couldn't move it. Sure i needed alot of physiotherapy on my rotator cuff after that cause my arm was basically dead for a month, but there was hardly any fluid coming out after day 10, and i was discharged on day 12. If your drain stays in for over 2 weeks, there is an increased risk for infection as each day passes, ie. higher risk for lymphoma. I was also very good about this because each additional day of stay at the hospital was $$$$$$$$.

  • When it is time to remove the drain, the doctor will snip a suture that holds the drain in place, and just pull it out. It was pretty horrifying because the drain is....oh my gosh....SO long. So she just kept pulling and pulling. But don't worry, you won't feel anything because you won't have any sensation in your breast at least for a year. In fact, most people never regain full sensation in their breast again, alot of people don’t know this prior to their mastectomy because it’s not something people care to consider with their doctors when cancer is growing inside of them!

  • I took the sensation of the lymph node dissection quite strongly. After the doctor removed my bandages 2 weeks after i left the hospital, I felt an empty hollow in my armpit that felt like a whole muscle was gone. Combined with limited mobility in my arm, it felt really scary. My armpit looked concaved and my implant looked like a hexagon (holy shit I am not joking) which made me want to vomit and also made me very skeptical about the aesthetic outcome and whether or not i would ever be normal again. If you are wondering the same thing, I can tell you that after 3 months of intense arm exercises, my arm mobility is now back to normal. I still feel a strain when i reach far, but I am able to do 95% of all activities I used to do. The only things I cannot do are lift heavy things with my left arm (carry my daughter, use a baby carrier or a backpack) and exercises like pushups or strength training. Appearance wise, the compressed hexagonal implant gradually softened and drooped to a natural round shape, and after the fluid leaves the implant will ripple less as well. The concaved spot has also filled itself out a little bit (I assume naturally with fat from all my chemo munchies - yes that’s a thing), so it doesn't look weird at all.


FRIENDS AND FAMILY

Before this experience, i have always been the yes man, always offering to help others, send gifts, run your errands and do your research for you. I would never ask anybody to help me do things, both because I didn't trust them and I didn't want to owe anyone anything. If people were nice to me, I would always make a mental note to return the favour or gift some day. While I was in the hospital, I realized that people who really care will not let you push them away, and that it is actually very cruel to deny the help of your loved ones. If they treasure you, they will want to do anything they can to help you or cheer you up, and they will feel great about being able to contribute too. I was pleasantly surprised at who came through for me, and eventually I let my guard down and happily accepted calls, cards, flowers, food and gifts. I gained a newfound appreciation for my husband, and my family. If you are in the same situation, please open your heart to accept help from your community or straight up ask for help, and enjoy being taken care of because you deserve it! Keep talking to people and sharing your fears and concerns, because bottling up emotions will not help you resolve them, constantly think of how to release. During my stay at the hospital, I talked to so many people, including social workers, who then introduced me to patients who have recovered. Some even came to visit me and many of them called me to share their experiences. I also reached out to other breast cancer patients all over the world via Instagram and so many of them shared their tips with me on the upcoming treatments. The community is vast, and if you need it, the support is readily available.


FEMININITY

Something that was really hard for me in the post surgical period, other than managing my constant morbid thoughts, was trying to not look like shit. It's true that when you clean up and look fresh, you will feel good and more positive. But I couldn't, I literally could not do anything except brush my teeth and wash my face with one hand (I guess the fanny pack would come handy here). I needed help taking a shower from the waist down and had to have my back wiped down. Some things that worked well for me were:

  • Somewhere around day 7 in the hospital, one of the nurses offered to help me wash my hair in bed with a No-Rinse Shampoo Cap. Genius invention and made me feel so much better. Jerry dried my hair and that made me cry a little.

  • I brought a headband with me and used it everyday to keep my greasy hair at bay. This was a lifesaver cuz with only one hand, I couldn’t operate a hair tie. Oh all the little things we take forgranted!

  • I had eyelashes extensions done before being admitted, so everyone who came to visit me thought I looked really fabulous. It might be a good idea if you want to look good without makeup during recovery, however I ended up having to make a trip to get them removed a while after since I had to prepare for losing all my lashes during chemo.

  • At some point after I returned home, i took out all my maxi dresses and started wearing them at home instead of my usual leggings or PJs. If it makes you feel girly again, do it!

  • Don't forget to pamper yourself during recovery. It will be extremely hard to have a good time when illness is on your mind, but try to find pleasure in little things like a spritz of perfume you save for special occasions, some new all natural and organic skincare, maybe a foot massage if your doctor allows it. There's nothing you can do about the fact that your chest has undergone major trauma and it'll never look exactly the same as before, but reconstruction is amazing nowadays, not to mention the fact that both healing and femininity blooms from within your emotions. I had a huge struggle with my femininity and identity, which I will share more of when I talk about my chemotherapy experience, but I have really come to realize that my story, smile and heart convey so much more of my womanhood than do my breasts or my hairstyle.

At the end of the day (seems like it has been a long 10 years but actually only 6 months have passed), I think that the emotional trauma I experienced through this ordeal way exceeded any physical trauma. If you have come across my page because you are scared and don’t know what to expect, I want to let you know that this experience must seem ridiculous and unfair, and that you probably will hate that the upcoming treatments will impede on the progress of your life, affecting everything that you care about. Your friends will look beautiful and do fun things without you, you will watch TV and wonder why none of these celebrities and royal families have to experience cancer. But rest assured that enlightenment, peace and closure will eventually arrive for you. Don't overthink the reasons, pain or process, focus on internal healing, calming techniques and your nutrition. I truly believe that everything happens for a reason, and this one is to make you love yourself more. I invite you to connect with me on Instagram - DM me to chat and share more:)