What Are Your Best Tips for Before and After a Mastectomy?

Posted by marybe @marybe, Jan 2, 2019

Hello and Happy New Year. I am scheduled for a mastectomy of the left breast on January 23. I have a 9cm tumor. They will remove my right breast in a later surgery, after radiation and chemo as dictated by my pathology report after surgery. Not sure why they won’t do both at once but whatever. Who else has had separate surgeries? Is this common? I’m preparing for surgery by getting in the best physical shape possible (light arm weights, aerobic exercise, sensible eating) but am hoping you breast surgery warriors have some helpful advice. Thank you. PS I am scared to death tbh

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azlane | @azlane | Jan 2, 2019

Prayers, following as I'm most likely going to a mastectomy next. This is scary, but being proactive and getting in shape sounds like a great plan! Curious too, why not both at same time? Ask your surgeon, that's a very valid question. You got this!

Laurie, Volunteer Mentor | @roch | Jan 3, 2019

I had the same fear before my surgery in Sept. I asked the group similar question and got some excellent advice, See responses to my question on June 28, 2018 at this link:
https://connect.mayoclinic.org/discussion/breast-surgery-any-advice-to-prepare-for-surgery/
Wishing you the best
Laurie

stargazer56 | @stargazer56 | Jan 3, 2019

It sounds like you're making good decisions. Feeling "scared" is understandable. I tossed and turned at night for six weeks prior to my left mastectomy in mid-August 2018. Following that, I felt like a huge weight had been lifted off my shoulders. I pray that you too will feel peace. For my best tip: obviously, wear the front-hook surgical bra provided 24/7 for at least the first couple of weeks, or as recommended. After that, by nightfall I began wishing for something different. In a blog someplace I read a post-surgical tip to try a stretchy sports bra for light, comfortable compression at night. I found a nice one at AnaOno; then later I tried Enbliss by Soma, which I absolutely love. Sleeping in these is much more comfortable than the front-hook surgical bras, although you may or may not need this, depending on your reconstruction decision or timeline. Everyone's situation is a bit different. I'll be thinking of you on the 23rd!

tessfair1 | @tessfair1 | Jan 3, 2019

Hello. I was diagnosed in January 2018. Cancer in right breast. I chose to have a bilateral mastectomy instead of just right breast as I was already (between diagnoses and surgery) beginning to obsess about imagined lumps on my left breast. I was a larger chested woman, 34DD, as well and had decided I wanted to minimize all risk on future surgery and/or possible infection so opted for no reconstruction. I told my surgeon I wanted “one and done” when it came to surgery. And that I wanted to be as flat as a prepubescent boy after surgery. She and I were both nervous that I would not end up with a smooth aesthetic due to my size. She wanted to do two surgeries so she could roll me on my side to tuck the extra skin around my back but I opted to do one surgery and live with the results. They believed I was stage 2 prior to surgery but when surgeon got in there they felt lots of wonky lymph nodes so she was aggressive with their removal because she knew I wanted one surgery only. She took 23 lymph nodes of which 8 were positive. I think the most important pre-surgery thing is to be crystal clear with your surgeon about what you want. And look online at post surgical outcomes to decide what you want. Send your surgeon pictures of what you like and what you don’t like. Make sure you have a surgeon you trust and who respects your wishes and is skilled enough to get as close as possible to those. Also, I’m not good with medical issues, so I made a plan in advance to have someone else do my surgical drains for me a few times every day until I was able to look at my chest and deal with that in my own -it took me almost a week.
I was not prepared for how long the tightness I felt in my chest would last but through PT and movement it has mostly subsided.
I was terrified of the actual surgery and anesthesia but I have to say, it was over before I even knew it and I have no memory what so ever if that time period. I was also shocked that it was performed as a day surgery and I was sent home within hours of the event 1.5 hours away but I was so happy to wake up in my own bed the next day.
You will get to the other side of this. It will be hard. Sending you all my strength, good wishes, and support!

oilermama | @oilermama | Jan 3, 2019

My advice: take the pain meds, do as much activity as you can post surgery, and take advantage of the offers of help. Be prepared to be tired from the anesthesia. Best wishes -- you've got this!

cindylb | @cindylb | Jan 3, 2019

I can't think of any reason you can't have both breasts removed at once, if that's your choice? I would talk with the doctors about that and get more clarification. I had lobular cancer, first time (Stage 0) in my left breast and the second time, two years later in my right (Stage 1).....after they diagnosed the Stage 1 via biopsy, etc....I opted for a bilateral mastectomy because the cancer seemed to be on both sides and I didn't want the on going worry and possibility of spread of the cancer to my lymph nodes before I found it again. I had only 1 node removed on the left, 2 on the right. No cancer in any nodes, I was lucky. Might be that your doctors hesitate to remove both breasts when only one has cancer and you do have the option of reconstruction. I personally either wanted two breasts or no breasts (the idea of managing 1 breast is daunting to me....just to me, others get along just fine).
Perfectly normal to be very stressed about this, it's scary. It's good that you reached out and people on this site are the very best support!!!

My advice - get a post surgery camisole to hold the drains. They have little pockets for the drains and are very helpful and make the whole 'drain' thing a lot more tolerable. My husband tried to do the drains but wasn't very good at it, so after a few days, I did it myself and got pretty good at it. Most people will tell you the drains and the biggest irritant.....but that time passes pretty quickly.
Also, either make food in advance or if you have good support people and friends.....and they ask you how they can help, get FOOD (ha ha). You'll be tired for a while and having easy meals is a great help.
Ask for information on not only the first exercises you should be doing but on going exercise and massage information. It makes all the difference in how quickly you regain movement and reduce tightness and pain. I got lymphedema in my left arm (from only ONE LYMPH NODE REMOVED)...go figure.....I learned a great deal from the massage therapist, not only for the lymphedema but also the chest tightness and on going movement needs. I highly recommend finding a certified massage therapist for mastectomy. Also, it's nice to have a weekly visit that includes some massage and self care.
You can also reach out to a physical therapist who specializes in mastectomy. They can give you on going exercises and management of some of the side effects of the surgery.
Pain - I really had very little pain and I've noticed that many women are pleasantly surprised (as I was) about the pain....not bad at all. The pain for me seemed to come from the lymph node surgery but the movement and exercises seemed to help me keep that in good shape as well.
I had a second scar revision surgery that eliminated my lymphedema and improved my overall appearance (although I'm still a little lumpy looking, but just fine I clothes now).
I feel sad now and then that I don't have my breasts but overall.......don't miss them. Glad not to have to go bra shopping and I think I actually look more 'super model' like (ha ha). Surprisingly, I have to tell people I don't have breasts, no one seems to notice....
Hugs to you............