Everything you NEVER wanted to know about a mastectomy

I’ve mentioned tidbits on here about my mastectomy but I know a lot of readers will be involved with their own breast surgeries at some point so I thought I’d give more detail about what to expect and how to prepare. It is extremely long, because I wanted every bit to be in one place.

There are a ton of sites where you can find things to do to prepare, but the ones I saw didn’t explain things well. I’m sure these surgeries vary a lot by location and type, but some truths are consistent.

MY TYPE OF SURGERY:
I had what was called a bilateral mastectomy and lymphnode removal, which just means both breasts were removed. On one side, 11 lymphnodes were taken. I had cancer on just one side, but due to my BRCA status and size of the original tumor, it was very likely to spread to my other side anyway. It is also very difficult to “match” a real one during reconstruction, so all-around I felt better with having both removed. In addition, after a mastectomy you don’t need mammograms (usually), so that’s one less thing I have to do (and stress about) in the future.

LUMPECTOMY OR MASTECTOMY?
Many people elect to have just a lumpectomy instead of full removal. The original size of my tumor was 7 cm, so a minimum of 1/3 of the breast would have been removed, which would require reconstruction or weird pads for the future. As you know, I was cancer-free by the time I had the surgery, but because of the stage 4 aspect, Dr. Rassam recommended the full mastectomy in case the cancer returned and could not be reduced (this is called a hygenic mastectomy). Blah blah. I just prayed about it, and the data were very clear that the mastectomy for my tumor type was the way to go. God made me love research for a reason, maybe this was it. I felt fine going through with it.

Radiation also goes smoother without breasts.

If you are ever diagnosed with breast cancer, search and read a lot about the recommendations for your specific type. Your cancer will be tested to see if it is sensitive to estrogen, progesterone and her2. If it is not sensitive to any of the three, that is called “triple negative” and treatment options are more limited. Mine had a slight estrogen sensitivity, and was negative to the others. Anyway, this status and the size alters the effectiveness of lumpectomy and mastectomy. The “worse” cancer you have, the more likely it is that you need a full mastectomy, and sometimes doctors don’t tell you this because they want to spare you emotional pain. But the emotional pain is a lot worse if your cancer comes back. I’ve heard of many such cases, and the person always regrets just getting the lumpectomy the first time around. Regardless, there are a lot of studies on the importance of each type of surgery, and the results differ based on the details of the specific breast cancer. This is, thankfully, one very easy decision to make if you care about the data.

Proverbs 2:6, “For the Lord gives wisdom, and from His mouth come knowleddge and understanding.”

If you’re very sensitive or completely thrown off by the prospect of a mastectomy, it might be that you could have a lumpectomy first, then when  you’re mentally prepared have the mastectomy. You might be able to have that at the same time as reconstruction, which is a LOT better, mentally. I really wanted Dr. Crooms to do my removal though, and a guy in Gainesville is my top choice for the reconstruction, so on top of no one offering the lumpectomy first, I did it separately.

MY TYPE OF MASTECTOMY:
There are all kinds of mastectomies and reconstruction. There are skin and nipple sparing (they sew your nipples to a different part of your body and “save” them for later!) removals, but the plastic surgeons I spoke to requested that my skin be pulled very tightly because that’s better for radiation. Apparently the radiation permanently ruins your skin and tissue, with results changing more for months after radiation ends. So my tissue and nipples were all removed, and the skin pulled taut. When I get reconstruction later I will have new skin put on to replace that.

Some people are good candidates for implants, but I wasn’t. I thought it was because of having radiation but I know of someone who got them with radiation, so it might be up to the doctor. I didn’t want implants anyway, because there are a lot of options now of how the plastic surgeon can use my extra fat to create new breasts. I’m hoping to get one called DIEP, which is when they pull off my stomach muscles, dissect the fat off, then put the muscle back on my stomach. They would give me a tummy tuck and use that skin to create the new ones!!!! I knew I was saving all that tummy fat for something!!!! If I don’t have enough fat (yeah, right!), they will also use an implant.

So, the DIEP sounds great, except that if I was getting implants I could have had expanders put in during the mastectomy. Over time, they are filled with liquid to stretch out your skin, then eventually are replaced with the implants. The point is that after a mastectomy you have something there instead of being so naked (more on that below). That would be awesome and after my surgery I desperately wished I had found someone willing to do that for me. However, a girl who had that surgery around the time of mine just had to have an emergency back flap procedure because something went wrong with the expander. She really didn’t want that procedure done, and was totally unprepared to have to race to the hospital and get it done. Plus, they say those expanders hurt quite a bit.

BEFORE YOUR SURGERY:
I read that I would need sports bras that opened or zipped in the front, but I couldn’t find them. It isn’t what you really need anyway. You need to order mastectomy camisoles and sleeping bras with breast forms. You need them because it will probably be 1-2 months before you can wear real prosthetics but you can wear these forms (one size fits all, they’re like little pillows) home from the hospital. They actually provide a little padding that helped me with comfort. They are NOT all the same, so order them with plenty of time. TLC is a common cancer website with some good products, but plenty of bad ones. It can be really frustrating. You can remove the forms and use them in many tops. They don’t touch your skin directly so I was fine with 2 sets. I heard the hospital normally gives you one camisole and forms to wear home, but I didn’t get anything. I found these brands to be good: Too Beautiful (the cutest, by far), Elita and Amoena. I bought a TLC brand open-front camisole and forms, and it was the WORST. AWFUL. Remember that the camisoles/tank-tops that open in the front are helpful at first, but they usually need to be worn under something. Mine ended up looking bulky so either get a smaller size or more sleep/sports bra types. Make sure you own at least one top with a drain holder for the beginning.

Someone lent me a drain squeezer. You can see them at http://www.tube-evac.com. Unfortunately I can’t tell where to buy them but it is worth contacting them (Mayo Clinic just gives them out). It was AWESOME and very helpful. I cannot tell you enough how great it was. Squeezing drains doesn’t seem like a huge problem, but when you use a squeezer you can’t stop smiling from the improvement.

Sometimes it’s better not to know what to expect, or what could go wrong. But you obviously still need to plan for things like childcare or work for after surgery. Make sure to ask your surgeon all about his plan for what you can lift and when. Dr. Crooms is of the “do what you can handle” school of thought, so I didn’t have stipulations. But some peope get very strict guidelines that could change your plans.

Make sure to get mentally prepared for the surgery, but I don’t know how to do this besides through prayer. So, get to it.

“Don’t worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus.” Phil 4:6-8

SURGERY:
If you’ve had other surgeries, this is pretty much the same. Dr. Crooms is a general surgeon so mine was done at the Surgery Center of TMH. Incidentally, some people specialize in breast surgery. I’m sure they’re great, but EVERY time I’ve shown a professional my scars he has wanted to know who did the surgery and remarks at how great it looks. So, if you’re local, go to Dr. Crooms! If you’re not local, you could still go to Dr. Crooms! Otherwise, don’t automaticlly balk at the prospect of having a general surgeon. DO talk to people and get their experienced recommendation though.

I had the typical procedure, including a pre-operative appointment a few weeks before surgery, then the day before the procedure I called for the time and instructions on how to prepare. It was just no food or water after midnight. At the hospital I got the IV quickly and hung out with my mom for a bit. The scary part for me is always when they wheel me into the waiting room, where I’m all alone and completely sober. This time they let me wait in the pediatric surgery room because that’s private, in case he wanted to come in and mark me up beforehand. The last time I had to wait in the other surgical waiting area and I felt like a cow being corralled with the rest of the herd. A nurse said I wouldn’t remember that part so I guess they assume people will be out of it and they can treat us however they like. But I remember every second. Every embarassing question they asked the men around me, etc. It was scary, sad, and very lonely.

Anyway, in the pediatric waiting area there are paintings on the ceiling, signed by patients. It was really sad to think of the children who had waited in that room, so scared, before.

The surgery was a few hours and I woke up in considerable pain. I didn’t know how much pain to expect though, so when a nurse asked I told her I was fine (I meant that I could handle it while she got me medicine). When I finally was about to scream from the agony she said, “can you still not feel anything?” and I realized that they’d really thought I wasn’t in any pain at all. She gave me a morphine drip that I could activate every 7 minutes. I used it frantically, afraid to even sleep in case I would awaken up in severe pain. I thought I needed to let the morphine build up in my system but It turned out I didn’t need it at all. The pain never got as bad as it was right after surgery. After about a day I figured out that I wasn’t even in pain and didn’t use it again. They don’t let you off the IV or oxygen until you’re off the morphine and IV drugs, so it’s a good thing to get off it.

I stayed all 3 days there, because I thought going home would be too hard to deal with the kids, etc. It probably would have been fine but we’ll never know. This type of surgery is not the same as when you have a child though, so my mom stayed the first night to help with all the cords/bathroom trips, but otherwise I stayed alone.

Isaiah 40:29, “He gives strength to the weary and increases the power of the weak.”

AFTER SURGERY:
The nurses took the bandages off before I left, so I couldn’t hide from my mutilated body. I had a drain on each side and maybe 60 staples. They taught me to empty my drains and record how much fluid was removed, but I never reported it to anyone. Nurse Karen at Dr. Crooms office just checked me out then removed the drains at my first follow-up appt (1 week after surgery). She also removed my staples and replaced them with steri-strips. In case I haven’t mentioned it, she is one of my favorite people. She taught me some exercises to do to improve my range of motion too.

I holed up in our bedroom for almost a week after surgery. I just sat in the dark watching tv. I imagined spending a lot of time with God during this time, but mostly felt numb and a little abandoned by Him. He snapped me out of it one day though and that was the only depressive-type of episode I had about it.

I was not ecstatic that Karen made me start “exercising”. I hoped bedrest would be on the prescription pad, not a bunch of uncomfortable moves. I did them a few times a day for a few days, then petered off. I at least try to do some extra stretches as I’m sitting around. I ended up with full range of motion in my right arm (no lymphnode removal), and almost full range in my left arm. So, God is awesome and maybe my full-time job of child-rearing works my muscles well.

The most helpful thing I learned while recovering: Karen said, “it’s going to feel like you’re doing something wrong or pulling out your stitches”. That was VERY good to know, because that is EXACTLY what it felt like. It’s actually just breaking down scar tissue, but I feel it ripping and it definitely seems like I should stop. Instead I know I should keep going.

RANDOM FACTS AND GROSS STUFF:
There is gross and weird stuff going on now. I don’t look like you’d expect–I imagined looking like a man, but it’s worse than that. I look like a mutilated person for sure. People were created in God’s image, and He did NOT look like this. I still have my post-pregnancy fat stomach, but as it goes upward I actually have a “two-pack” of muscles that jut out. If my stomach was flat this might be normal-looking, but as it is is creepy.
Next–you know that crevice between everyone’s breasts/chest muscles? Cleavage, I guess. Well, I still have it. I guess it’s bone or cartilage, so I have that indention, and the outsides of that protrude from the middle of my chest. Then it all sinks in around it.
Finally, the GROSSEST is so bad. I would actually put a picture on here because I feel like an alien already, but I wouldn’t want it to be banned from the internet due to the yuckiness…Are you ready for this? When I move a certain way when getting ready, it makes my tiny pectoral muscles flex. They are the size of ping pong balls. The rest of my chest stays flat, and these little golf balls pop out, very similar to “bug eyes” that might burst out of a cartoon character’s face. I’m probably not describing it well, but it is SO weird and icky.

That’s all I can think of. I’m so fortunate and blessed to have been healed of this horrendous disease that I don’t feel sorry for myself when I see the scars. I just feel joy that I am a child of God, and that this gross body is just temporary.

2 Cor 4:16, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”

Make sure to ask any questions I didn’t answer while it’s all still fresh in my mind! Also, add any helpful tips from your own experience to the comments section!

ADDED 8/9: If you live in Tallahassee, you can go to A Woman’s Place at TMH for prescription prosthetics. It’s a little complicated but much easier than dealing with online purchases, because there are so many types, materials, sizes, and shapes to pick from. At A Woman’s Place you call them and they arrange for a prescription from the surgeon, a referral from the general practitioner, and a fitting 4-6 weeks after surgery. You can try everything on there and let you take some things home, ordering the others for you.

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Tips for those getting assessed for breast cancer

Well, I’m an “expert” now so I’m going to make some lists of random things that have or could have helped me through cancer and beyond. Maybe I’m not actually an expert but I know more than I wish I did about it. Today I’ll write up some things I verbally advise people about for early days in the diagnosis process, and then sometime soon I’ll put in one about surgery tips and how to support people with cancer. These tips are from my own experience and remember I am very, very unique (just like you!) so just consider these guidelines.

The secret reason for this post is that people give me inside info (yes, gossip) about some of the doctors in Tallahassee, and one in particular has done something so awful his patient is unlikely to recover, even though his cancer was initially curable. But the other day I ran into someone who sees him and I found it really difficult to hold my tongue. I did, primarily because she’s almost done with treatment so it would have just been gossip. But it got me thinking that maybe I could help people be aware of ways to prevent awful situations like that.

Cancer and health problems are scary, so I hate the idea of adding fuel to anyone’s fears. But I know of lots of horror stories, and my own could have been one. Very narrowly missed being one. So for the few people whose fears become reality here are a few tips starting with diagnosis:

1. Do your monthly self-exam ALL the time. By the time you can feel a lump (which is called being “palpable”), it’s well-developed. If any women in your family have had breast cancer, you could be eligible to get early mammograms. My doctors recommend having my girls get screened 10 years before my diagnosis. That’s when they’re 22 years old. I am BRCA1 positive and thus can get them tested via blood test for that when they are 18. If you can’t demonstrate a genetic or other cause for early mammograms, your doctor will recommend them starting at either age 40 or 50, there is some debate on this. Remember that mammograms are not enough–I know someone who had a clear one last year and this year was diagnosed at Stage 4.

2. If you have a lump of any sort, don’t panic! Pray and repeat important Bible verses, like Ps 56:3, “When I am afraid I will trust in you.” Don’t let your mind wander or worry. Just call your doctor immediately (general practitioner or gynocologist will be fine) and get in right away. If he won’t find a way for someone to see you within a business day he’s not a good doctor. You might think I’m kidding. I’m not. (There might be an exception if you freak out about everything, because then they might not take you seriously. Not sure how to fix that, but try!)

3. Most lumps are nothing. Almost all of them, actually. The younger you are and the less family links to cancer make it more and more unlikely to be cancerous. Still, there are tons of stories about misdiagnosis, etc. My general practitioner sent me for an ultrasound and scheduled a mammogram, but the ultrasound technician misdiagnosed me then canceled my mammogram. So, no matter what they say it is (a cyst, galactocele, fibroid, adenoma, etc.), I would say pray about it (of course), but at least consider demanding a biopsy. The biopsy is a tangible way to determine what a lump is, whereas the others require more human interpretation and thus mistakes.

4. So, you still don’t panic, whether your tests come back as clear, abnormal, or cancerous. Just keep praying. There are a few types of biopsy (needles are not intrusive, surgery is). I had a fine needle one and core needle one. Neither hurts, it’s just a mental issue. Just feel like a shot. My fine needle one came back as abnormal, which is again, very frequently NOT cancer. I saw Dr. Crooms (my general surgeon) after that, and he could have chosen to do a surgical removal (lumpectomy probably), but decided on a core needle biopsy first. That is a really, really big deal. If I had gone to a bad general surgeon, he might have skipped the second needle biopsy and done a surgical one instead. It happens all the time. That mistake can kill you! If you have a lot of cancer you often need chemo BEFORE surgery. If you have surgery first it slows you down because you have to recover before treatment. Sometimes they cut you open and can’t even get all the cancer, so you have tons of extra stress and trauma.
The point? Always, always, always get personal recommendations for your surgeon and doctors, AND a second opinion or hard evidence before surgery. In my case Dr. Crooms chose to get the evidence* before recommending surgery. I’ll talk about that below, but it definitively showed it was cancer so he ordered a PET/CT scan and brain MRI to see if it had spread BEFORE surgery. Good move!!!!! Great move!!! I didn’t get a second surgical opinion, but the oncologists I saw all agreed with that decision.
*Abnormal biopsy results are not always cancerous, especially as I was also breast feeding which can confuse cells. That first biopsy could have come back as conclusively cancerous then there wouldn’t have been a need for another biopsy. So the second biopsy was basically for more info. The frozen section is a way for doctors to get a quick look at the cells that were removed. They are only slightly less accurate than a permanent section and take much less time. I believe a permanent section is always done, but ask your practitioner (and insist on one) first. My frozen section came back as an adenoma even though it was cancer. So a few days after receiving “good” news, we got the call that it was actually bad.

5. Always get multiple opinions BEFORE surgery or treatment starts. If it looks bad you will be anxious to hurry up but if you start the treatment first it can be much worse to change it later. For example, many (or all?) types of chemo can only be given once in a lifetime because your body builds up immunity to it. So if you go for a few treatments then ask another doctor what he thinks, you either can’t take his advice or have to waste your chance to ever get the original treatment again down the road. And who wants to doubt that choice forever?
One trick about getting the multiple opinions is to schedule them at the same time. You don’t need to meet with one doctor then make an appointment with the next. Just call them both and schedule for ASAP. It’s your life.
When possible, try not to tell your other doctors what the original said. That way they won’t accidentally be biased by evaluating the original advice. You want independent information first, then you can ask each what they think of the other.
Take notes on EVERYTHING. Remember to get lots of doctor recommendations, but go with the one you fit with best. Some people prefer a good bedside manner over certain medical training, especially if their cancer has a relatively standard treatment.

Psalm 112:7 “He will have no fear of bad news; his heart is steadfast, trusting in the LORD.”

6. If you end up with cancer you’ll probably have a medical team treating you. You still don’t panic though because God is in control. He IS!!!!! At many hospitals the cancer doctors work together so you don’t have to figure it all out. Mine don’t exactly work together so I sort of make sure they know what each other is up to as needed. My medical oncologist is (or should be) the boss though. This depends on the whole issue, but he should be very aware of surgery and radiation stuff/scheduling before you do any of it. I know of a case where a patient started radiation without his oncologist being aware, and they were supposed to be done in conjunction. That will keep your treatment from working. Boo!!!!!!!!!!

That’s all I can think of right now. If anyone has things to add, put them in the comments section. There are more details and verses about my own experiences throughout this blog,  but I couldn’t explain much without including some personal details.

Psalm 86:2, “ Guard my life, for I am devoted to you. You are my God; save your servant who trusts in you.”