Ronna's Story - Mastectomy

The Bilateral Mastectomy

Breast Surgeon:

After you have been diagnosed you will be referred to a breast surgeon if you don’t have one in mind. Call me crazy but I didn’t research anyone. I wanted an “all female” team, so I had slim pickings based on the hospital I wanted. I did have two to choose from and I LOVED my surgeon, I was very lucky to have someone so compassionate.  There is a ton of information that will be coming your way so this is where I recommend you record your visits. My advise is don’t wait to have surgery if you don’t have to! I was originally told I could wait three months for surgery by the doctor who did my biopsy, but after talking with my breast surgeon I understood that it couldn’t wait. You may decide to get a second opinion but you might want to make sure your insurance will cover other appointments.

Some questions to ask “before” surgery:

  • Are you board certified?
  • Do you specialize in this type of surgery? I went to a breast surgeon and that’s all she did. I knew that I wanted a bilateral mastectomy so I made sure that was something she did on a regular basis.
  • Do I need any other tests before this surgery? Make sure you request an MRI if is not offered to you, usually this is the doctor that will order this.
  • Can you tell me what stage the cancer is in? What does this mean?
  • Should any of my lymph nodes be removed? What are the benefits and risks?
  • Do I need a lymph node biopsy? How will this affect my treatment options?
  • When do I need to make a decision about surgery?
  • What should I do to get ready for the operation? Do you have recommendations on how to help me relax before surgery?
  • What medications and supplements should I stop taking and when? If you are taking anything with Aspirin you will need to stop taking them TWO weeks before surgery.
  • How long with my surgery take? I also had reconstruction and it took a total of six hours.
  • What are the potential risks and side effects of this operation?
  • What can be done to ease the side effects following surgery?
  • What can I expect regarding this operation?
  • Will I be admitted to the hospital for this operation?
  • How long will I have to wait for the pathology report will come back? Will you call me?
  • How long will it take to recover from this surgery?
  • Will there be permanent effects from the surgery?
  • Will you provide me with post-operative care pamphlets I can take home with me? How long after surgery can I shower or bath? I think it was 24 hours for me.
  • Am I a candidate for nipple conservation? I wasn’t. I teased at Halloween, after having the surgery and loosing my hair due to Chemo, that I was going to go as a “Mall Mannequin!”
  • Where will the incisions be? Will I have stitches, staples, or bandages?
  • Am I a candidate for the BRCA test? I was and it took two weeks for the results.
  • Will I need Radiation or Chemo? I was originally only DCIS so this was not part of my original treatment plan.
  • Are there any clinical trials available to me?
  • Can you recommend a Medical Oncologist?
  • Can you recommend a Radiation Oncologist?
  • Can you recommend a Plastic Surgeon? How often have you two worked together? This is if they are doing the immediate reconstruction. In my case the Breast Surgeon removed one breast and the Plastic Surgeon came behind her and place the tissue expander.

Some questions to ask “after” surgery:

  • What size was the tumor?
  • What is the grade and stage?
  • Can you explain my pathology report results to me? Can I get a copy?
  • Was all of the cancer removed during the surgery?
  • Has my cancer spread to my lymph nodes or anywhere else in my body? The doctor had already come out during surgery and told my husband that the two sentinel lymph nodes were negative.
  • Do I need other treatments like radiation or chemo? This is when I found out that I was stage one and fell into the 5% that needed radiation and because I was so young would maybe need chemo.
  • When do I need to make a decision about starting additional treatments? They don’t wait too long to get this started. I started about two months after my surgery. But then again, we sort of did things backwards do to the pathology report coming back after surgery.

Plastic Surgeon:

My Breast Surgeon made the appointment for me so she had my records when I went to see her. I asked if she was board certified and how long she had been doing this type of surgery. I asked her what type of reconstruction she would recommend and what the complications would be as well as the limitations. They usually say don’t let you lift anything heavier then a gallon of milk for a few weeks. You will also be instructed to do arm exercises following the surgery so your muscles don’t get too tight. I was VERY fortunate to have full range, the next day, in both arms. This is NOT normal. Ask how many drains you may have, I had four.

One thing I was not prepared that they did was to have my photo taken with a number taped to the wall for identification. I probably would have been o.k. but they took the photos before the doctor came in to meet me for the first time. This really caught me off guard and upset me, as I hadn’t even decided if she was going to even be my doctor! Trust me, I explained how it made me feel especially because I wasn’t there for an elective surgery. They understood and have been great from then on explaining exactly what would happen with every visit.

Before the Surgery:

Have a few shirts that button up in the front, it may be hard to lift your arms to pull a shirt over your head. A wedge pillow will help with sleeping at an angle and will help those sore chest muscles that don’t hurt yet; I got mine at Bed Bath and Beyond. Get a bedside table ready and within reach with a few things like a book, lamp, clock, phone and even a bell to ring for help. Have a few meals prepared for several days if no one offers to bring food over. Have a few sets of pajamas that button up in the front as well and take a pair with you to the hospital. You may even want to wear them home so you can go straight to bed. Either the night before or the morning of, the Plastic Surgeon will “mark you up.” I totally envisioned a meat chart complete with little dash lines. To my surprise, she drew them on with a green surgical marker and she drew one line down the center of my body, starting about my collarbone to my belly, under the natural folds of my breasts and above and below my nipples, as mine were being removed.

Sentinel Nodes Test:

I did have to have my sentinel nodes checked on the left side and I was VERY anxious about it. I wasn’t worried about the surgery as much as these injections. However, the doctor gave me a prescription for some “Elma” numbing cream, which I applied before I left home and was on about an hour and half before the procedure was done. The doctor said to NOT rub it in, to let is soak in so I just put some clear wrap on it and taped it down. I was lucky and only had to have this done on the left side and I only had three injections and my Radiologist was FAST! I did feel it but it was nothing like I expected, it felt like a bee sting but some ladies say they don’t ever feel anything. Honestly, it was over before I knew it begun.

After Surgery:

I had four drains and I’ll be honest they were the worst! Mine were the size and shape of a grenade and were hooked to about 18 inches of tubes, which were sewn into me. The tube that was helping drain the lymph nodes was the size of about a pencil and the other three were the size of straws. The hospital provided me with “one” camisole that had like a kangaroo pouch in the front of it. I would recommend seeing if they will give you two or just buy an extra one. Even thought you may only need it for about two weeks, you’ll wish you had more. I wore mine all the time except for when I was washing it every other day. You will also need a few safety pins, the big ones, to pin these babies to a steri-strip. The hospital can give you the steri-strips, they are a fabric about ¼” wide. Get two or three because you will need to pin them up while in the shower and you’ll want a dry one when you get out. The pain meds you'll be on will cause some constipation, so I just bought myself some generic women’s brand laxative, I also took a stool softener, “Colace” brand. I’m not sure if any of you will go through this, but I had horrible underarm odor for about three weeks. The PS said she had never heard of that before, but I had read where this was not unheard of. Other survivors had said the only thing that worked for them was “Degree Clinical Strength” deodorant. It comes in a few scents and it worked for me. I liked it so much that I still use it but its not cheap, like $7 to $9 per stick depending which store you get it from.

Drain Tubes:

My tubes were located just below my breasts to the side. Three of them were the size of straws and one, the side the sentinel lymph nodes were removed, was the size of a pencil. The tubes look like a water hose for fish tanks but the part that is “in” your body has tiny little holes so the fluid can enter the tubes. Where they place these tubes depends on what type of surgery you have, your doctor, and where your sentinel lymph nodes were removed. Mine were on top of each other in one incision. My breast surgeon was able to remove my sentinel lymph nodes through one incision where the breast tissue was removed. You doctor will give you a sheet to take home with you after the surgery to chart the amount of fluid you “drain” out of the “grenades.” You will be shown how to “milk” the tube which is basically taking your fingers starting closest to your body and squeezing and pushing any fluids down the tube into the grenade. The grenade will have a flip top, like a float valve, where you will squeeze the fluid through into cups that have fluid levels marked on them. I had a cup for each tube. The fluid could be yellow, bloody and have some blood clots so don’t be surprised. I was pretty sore at the site where these were sewn into my body but it wasn’t horrible. They are more of a nuisance then anything. By the way, don’t pin these or put these in your pants pockets, you’ll only forget one time when you go to use the restroom and pull your pants down and TUG on those drains. Luckily, I was warned so that never happened to me but I can just imagine how much that would have hurt! Most people have the drains in for about two to three weeks. It really depends on how much your draining, which is good by the way. I was lucky enough to have three of the drains removed after one week and the last one just a few days later. I wasn’t draining very much, which is not bad, but one drain was clogged and the doctor has to aspirate the fluid around the tissue expander a couple of times. Thankfully she numbed the area first. That is not something they want to do, because if she had nicked the tissue expander, it most likely would have leaked. When the doctor removes the drains, she will snip the stitches that are holding the tubes in. This did not hurt, just a little pinch. Then she grabbed the drain right next to my body and pulled it out. I could feel it come out and my husband could see it move under my skin a little. It snaked it’s way around the whole breast and pulled a bit but was not really painful, more uncomfortable then anything. If you think you’ll get sick to your stomach, don’t “watch” it because it looks really weird. The tubes that are in your body are maybe 12 to 18 inches but it only took her one steady pull to get it out, it took all of five seconds. I personally felt immediate relief, having not realized that the tubes were what caused the soreness.

Tissue Expanders:

So while I don’t have too many tip,s I can tell you about my experience with them. The tissue expanders are used to stretch out the skin and muscle and make a pocket for the implants. And will be slowly filled, usually every two to three weeks, with salt water. While they are hard feeling you still can “squeeze” them. I like to say they are like the constancy of a rotting orange, a little squishy but still very firm. I also tell people, they feel like when you go to the dentist and your jaw is numb “you” can feel your jaw but you can’t “feel” it. 

When I first got home from surgery, I felt like I had two lead bricks on my chest when I was lying down. That feeling lasted for about two weeks then it started to ease up. I had to have my husband help me sit up in the middle of the night to take my pain pills and get up in the morning for about four days then, I could roll out of my bed myself. It took about three weeks before I could lift straight up from a lying position. I had 650cc tissue expanders and came home with 350cc in them. My Plastic Surgeon was able to get to my total size 100cc’s at a time, weekly and started to fill them about two weeks after surgery. The expander on the left side, the side with cancer, sat a about ¼” higher and a corner of the thing was poking me under the arm some until I had the second refill and it smoothed it out. The soreness will slowly get better, but with every fill you will have a “tight” feeling for a few days to a week so keep taking your medicine, I had muscle relaxers. The tightness really does depend on how many cc’s you get every time, how lose your skin is, your doctor and just how you personally handle it overall. The doctor would find where the needle would go by using a small “magnet like device.” When she was over the correct area, the magnet would stand up straight and she would take a marker and mark my skin. You can feel the large area with your hand, which is hard, and about 2” in diameter. The area that she can safely inject the salt water is maybe ¼” in diameter. My doctor gave me a shot to numb the area and would then put the syringe straight down into the expander through the skin and muscle. When she did the left side, which sat up about a quarter higher, it didn’t hurt. However, I always seem to feel the right side going in. It wasn’t horrible but it stung a bit. She also numbed the area before injecting the water. They have to go slow so they don’t miss the area and you need to sit still so they don’t! Then they would push the salt water through a bag and a tube to the syringe, which they would then push into the implant. The syringe they used could hold about 50cc’s at a time.

As time goes on, you get used to them and don’t “think” about them as much and although you “know” they’re there they aren’t as bad as you think. I would say they still have a “tightness” to them but it’s not painful. Just be careful to not cut a corner to closely, like I have because these puppies aren’t going to give! LOL

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