The Pain of Mastectomy: What to Expect and How to Cope
A mastectomy is painful physically.
A mastectomy is painful emotionally.
My mastectomy was both more painful and less painful than expected.
Please read my account of my own mastectomy for insight, but don’t expect to have the exact same experience I had. I’ve also included tips for living as a survivor.
The Pain of Misinformation
Once my doctor and I had decided a mastectomy was the best treatment for my second incidence of breast cancer (the first time I had a lumpectomy), I naturally turned to the internet to learn all I could about mastectomy.
Warning: Don’t believe everything you read on the internet. This is not because the information is wrong (although some are); it is because every individual is unique. Your treatment and outcomes will depend on many things—what type of cancer you have, how far advanced it is, what type of surgery you have, your level of physical fitness, your age, and your personality.
During my initial consultation with my surgeon, I did not ask her what type of mastectomy I was going to have. It turned out that I would have the most basic mastectomy, called a total mastectomy. This is the least invasive type of mastectomy. I didn’t ask up front, so I was reading a lot about other types of mastectomies that were much harder on a woman. I was needlessly getting myself scared. My advice to you is to ask upfront.
The Pain of Diagnosis
No one wants to hear the words: “You have breast cancer.” The first time I heard them, I was shocked and had a meltdown in the doctor’s office. The second time, ten years later, I was more stoic.
You will first have to decide if you should have a lumpectomy or a mastectomy. Sometimes, the breast cancer is too advanced for a lumpectomy, so a mastectomy is the only option. If you are a suitable candidate for a lumpectomy, you will have to decide if you want to accept the chance of a recurrence of breast cancer or do you want a mastectomy to remove all breast tissue and thus reduce your future risk of breast cancer to near zero.
After my first breast cancer diagnosis, I had a lumpectomy. The cancer was DCIS (ductal carcinoma in situ). If you have to have breast cancer, DCIS is the best type of cancer to get. It means the cancer is inside a duct in your breast and it has not spread. The cancer was near the surface of my right breast so there was minimal scarring.
After my lumpectomy, I had a test done for the BRCA gene since there had been some cases of cancer in my family. The BRCA gene means that the body cannot produce a certain protein that protects against breast cancer, ovarian cancer, and colon cancer. This gene is most common among people of Ashkenazi Jewish descent, and I am of Ashkenazi Jewish descent.
When my oncologist saw the test results, he suggested that I have a prophylactic mastectomy because I had a 40% chance of getting cancer again. I’m an optimist, so I said, “Let’s just watch and wait. The odds are still in my favor.”
The second time, I was not even a good candidate for a lumpectomy. The cancer was in my left breast close to the chest wall. It was time to bite the bullet and have a mastectomy.
I was single and in my early 70s at the time of my second diagnosis. I didn’t need to think about nursing a baby or pleasing a husband or boyfriend. I think the decision would have been much harder if I had been younger.
The Pain of Deciding About Reconstruction
It seemed like both my oncologist and my surgeon were just assuming I would have reconstruction. The reconstruction would be done at the same time as the mastectomy so I would not have to have a second operation.
At first I was excited about the idea of having perfect breasts of whatever size I wanted. I started reading about it on the internet and talking to people who had reconstruction and others who chose not to have it.
I decided not to have reconstruction. The operation would be longer and riskier. Plus, there was the risk of problems with the implants. Some women have to have them removed after a few years.
I spoke to a wonderful woman named Britta. She was a friend of a friend. She was nice enough to talk to me on the phone. She was so enthusiastic about living flat. She told me that she even had a picture of her naked chest on her facebook profile. I took a look and she did indeed look great. I could see how the scars faded to just faint lines.
It was hard to make this decision. I wanted to look normal, but as I thought about it I began to think that I didn’t want fake boobs. (My new breasts probably would not have any feeling. Moreover, I didn’t want to live in denial.) Britta gave me the confidence to opt not to have reconstruction.
I also discovered a group on facebook called “Flat and Fabulous.” It is a great resource because women share their experience in the group.
The Pain of Surgery
I went home from the hospital with major pain. I have heard some women say that they had minimal pain, and I don’t understand how that could be.
In the area next to the armpit, I had sudden sharp jabs of pain. I joked that the doctor must have left razor blades inside me. The pain in the chest was more bearable because it was constant. It hurt but it was like background noise—I just got used to it and was able to ignore it.
The worst part was the burning sensation. Think of the worse sunburn you have ever had and multiply by ten. The pain woke me up in the night.
My chest felt very tight. One night when the pain woke me up, the tightness felt like the proverbial elephant sitting on my chest. I had to check to make sure I could breathe. Of course, I was able to breathe just fine. My chest was not being crushed; it just felt like it was.
Even now, three months later, my chest is very tight. It feels like a giant rubber band is pressing in on me.
The first doctor’s visit was four days after the surgery. I arranged to have someone drive me there because I was still taking the pain meds. After the first week, I stopped the pain meds and I was able to get around. I could drive and I went out to social functions, to shop, etc. as I normally would.
Many women lose range of motion. I was told to expect “dinosaur arms.” Press your arms against your body up to the elbow and then move just your lower arms and you will get the idea. I did not have this, probably because only sentinel nodes were removed. However, I did find that I could not reach things on high shelves because I could not get my arms straight up. After about two months, I was back to normal.
Ask your surgeon about this before the operation. If you expect to lose range of motion, plan for it. Make sure everything you will want, for instance your coffee cup or a book, is within reach. Some women find that they are more comfortable sleeping in a recliner or using a wedge pillow in their bed with pillows propped up on either side of them t serve as arm rests. I slept in my bed on my back with my arms at my side.
You will be told not to lift anything weighing over five pounds for the first few weeks after surgery. Plan for this as well. For instance, I wanted to change the sheets on my bed so I had someone put the bottom sheet on the bed for me because it involved lifting the corners of the heavy mattress.
The Pain of Post Operative Care
I left the hospital around noon on the day after the surgery. My chest was covered in bandages. A plain white nylon bra was over the bandages to hold everything in place. The bra cups were flat.
After four days I had an office visit and the doctor changed the bandages. I was very glad that I did not have to do this myself.
During the surgery, there were drainage tubes inserted into my body near the under arm area. The tube was about 18 inches long with a bulb at the end. Blood and other fluids drained from my chest into these bulbs. About two or three times a day, the bulbs had to be emptied and the amount of fluid collected had to be measured and recorded. The doctor could then determine when it was safe to remove the tubes. This was done during an office visit about 10 days after the surgery. I expected the removal to be painful, but I felt nothing at all.
During this time, I was not allowed to have a shower. I had to do a sponge bath every day. I never realized it before, but sponge baths are a slow process.
I also spent a lot of time sleeping. I’d sleep ten hours at night and then I would have a two or three hour nap every afternoon. Around three pm, I’d feel so sleepy that I could barely drag myself to bed.
Don’t plan on getting a lot done. Basically my job was to get well and I gave myself permission to do nothing. I bought a bunch of frozen entrees before my operation so I would not have to cook. I stocked up on high protein food.
When I wasn't sleeping, I was watching TV. I have a subscription to Amazon Prime and I watched the whole season of The Amazing Mrs. Maisel. I was able to immerse myself into the world of Mrs. Maisel and forget my pain. I recommend a light comedy with an engrossing story line to keep yourself amused during your first week or two of convalesce.
Physically, I think I was well enough to work as long as it was sedentary work, like working on the computer. But I felt like I just didn't have the mental energy.
The Pain of Mutilation
I hated the idea of having my body mutilated. About ten days after the surgery, my doctor told me I could remove the bandages. She told me to have a hot soapy shower and let the water loosen the bandages and then gently pull them off.
I did this is semi darkness. I had only the light that came in through the doorway of the bathroom. I refused to look at my chest. I was told to continue to wear the post-operative bra and I put it on after my shower with a towel draped over my shoulders so I would not see my chest.
After about a week of this, I allowed myself a quick glance. I would also sometimes trace the scars with my fingertips. It took me two weeks before I was ready to look. Now I am used to it and seeing my naked chest doesn’t bother me.
You may be braver than me and want to see your chest as soon as the bandages come off. I wanted to take it in small steps.
You may have some “phantom pain.” I had this a few times. I felt an itch on the inside of my left breast just above the areola. I went to scratch it, but I stopped my hand in midair, when I remembered that my breast was not there. Fortunately, the itch went away on its own.
One day, in the shower, I wasn’t thinking about the change to my body and out of habit I went to lift my breast to wash under it. I ended up slapping myself in the chin because the breast wasn't there.
I have ropy scars on my chest, especially in the area near the armpit. I expect that the scares will eventually fade.
I also have little areas of puffiness on my chest. This is due to fluid retention and it will eventually go away. I joke to myself that my breasts are trying to grow back.
The Pain of Bosom Replacement
Wearing a prosthetic bra
Some women do not like to wear the mastectomy bras with a pocket in the cups to hold the breast forms. They find them to be too hot and too heavy. So far, I am not having a problem. I put the bra on and it feels so natural and comfortable that I forget that I am wearing it.
I went to a professional fitter to get my prosthesis and I wore it home. That night when I took it off, it fell out of my hands and landed on the floor. I wasn’t expecting the weight of it. Now I hold it with a firm grip.
The prosthesis and three bras cost about $500. I am lucky to have Medicare because the cost was covered 100%. So I did not have the pain of having to spend a lot of money for these items.
Alternatives to the prosthetic bra
Although I am fine with wearing the mastectomy bra, I wanted something lighter and more comfortable for around the house and for exercise. I found some great inexpensive bras. I looked for bras with a pocket in the cup and a foam shaper. I then needed something to stuff into the pockets. After some trial and error (socks won't work), I came up with an ingenious solution.
I bought a bunch of the shower balls that are made for use with shower gel. I cut the cord in the center of the ball that holds it together and ended up with a long ribbon of nylon lace. I then stuffed this into the pocket behind the foam shaper until I got the amount of fullness I wanted. It is very lightweight and comfortable and looks and feels natural. The shower balls can be purchased for about one or two dollars each so this is an inexpensive solution. After I stuff the pocket, I sew it closed. I wash these bras by hand and hang them to dry.
The “” is ideal for this purpose. It is stretchy, lightweight, and inexpensive. I already had a couple that I used to wear around the house because they are much more comfortable than bras with underwire. The front closure nakes this bra very easy to put on. Miracle Bamboo Comfort Bra
I also looked around to see if there were other bras that I could use. I found some lovely lace bras called bralettes that had a pocket with a foam shaper. They are so pretty and feminine. These bralettes, with the foam insert removed, are great for wearing when going flat, but I also used the shower ball ribbon to stuff them. I bought theand they are excellent worn stuffed or flat. They are made of a beutiful stretchy lace. However, if you do not have full range of motion this bra may be difficult for you to put on because It does not have any type of closure. You simply stretch it to get your arms into it and then it snaps back into shape. Delta Burke Seamless Padded Comfort Bra with Removable Pads
(If you want to wear them flat, buy one with the band size you wear and the smallest cup size available.)
Why wear a bra when going flat? I don’t know. Perhaps wearing a bra is just a habit. Perhaps the pretty lace makes me feel more feminine. I often wore sexy lacy bras before the operation.
The swimsuit problem
Swimsuits presented a problem. The prosthetic breast forms cannot be worn in water. There are some bathing suits that you can buy online that have the mastectomy pockets, but the silicone gel forms made for use in the water are very expensive. I sewed the above mentioned “Miracle Bamboo Comfort Bra” with the shower ball stuffing right into a swimsuit I already owned. It worked great. I wrote an article giving the step-by-step instructions for making your own post-mastectomy swimsuit.
You can also look for a swimsuit with a blouson top. You can cut the bra out of the swimsuit. The shown below is especially good because the bra has pockets with shaper inserts so you have the choice of stuffing the pockets or removing the bra. Spanx 2381 Bold Blouson One Piece Swimsuit
The Pain of Not Fitting In
I’m referring to not fitting into your clothes. Some women find that a lot of their clothes don’t look right if they go flat. I expected that, but I had almost no problems. In fact, I was very surprised to see how well almost everything I already owned fit. I thought my T-shirts would be too big, but they fit just fine. Having a problem with fit might depend on the style of clothing you have. For instance, if your blouses have darts, those items might look odd because the dart is there to accommodate the breast. Lucky for me, most of my clothes are made without darts.
Since I began wearing the mastectomy bra with the prosthetic breast forms, I have found that there are a few things I can no longer wear because mastectomy bras fit right up against the armpit, are cut high in front, and have wide straps. Therefore, I can no longer wear anything with low-cut armholes, anything low cut in front, and anything that has wide neckline.
I was never big on showing cleavage anyway. If a top is too low-cut, I wear a camisole underneath or fill in the neckline with a scarf.
The Pain of Shame
I saved this one for last because I do not feel any shame, but I have I have heard that some women feel embarrassed about not having breasts. I decided that was not going to be me. I don’t care who knows it. I’m proud of being a survivor.
I don’t think about what I lost. I think about how lucky I am. I didn’t have to have chemo. I didn’t have to have radiation. And I will never have to have a mammogram again.
I am not less of a woman. (Well, I am about two pounds less—my doctor told me that my breasts weighed about two pounds.)
I am still feminine and sexy and fun-loving. I am still me.
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© 2018 Catherine Giordano