A mastectomy, either single or double, is a common treatment for women with breast cancer.  I asked some of my friends to contribute to the conversation, and this is the information that many from the breast community wish they had known.

1.  I wish I had taken pictures documenting procedure and recovery, and journaled. There’s so much I have forgotten! (I am a firm believer that our mind clouds our memory sometimes to allow us to heal from trauma, but there is still so much healing that can come from the remembering.)

2.  More support from other women who went thru this…You find out you have cancer and without catching your breath, you’re on the operating table.  (THIS is exactly what this community is about.  Supporting other women who have to walk this road after us.  It’s a scary road.  Support from those who’ve walked this road before you is crucial to so many women, and we are here to give that support.)

3.  I definitely wish I had been offered greater choices as far as my incisions were concerned. I made it very clear to my surgeon that I wanted to be completely flat with no reconstruction. For reasons I still don’t understand, he used Goldilocks incisions. I’m really very unhappy about the way they look.  (Choosing to go flat is a type of reconstruction.  For some reasons, there are a high percent of surgeons who feel that a woman who is deciding to ‘go flat’ must not care about their appearance, therefore, they don’t worry about giving that woman a beautiful end result of flat, even incisions.  This needs to change.)

4.  I knew I did not want reconstruction. I wish I had seen pictures of post surgery women and I wish I had shown my surgeon so I could get the results I expected. (I was extremely lucky in that I found ‘My Flat Friends’ prior to explant, so when I met with my surgeon, I had a folder of pictures on my phone of flat results that would be acceptable to me, and results that would not be acceptable.  With that being said, WHY do surgeons not comprehend that flat means flat?  It doesn’t mean just removing the breast tissue and leaving the skin behind…’just in case’ a woman changes their mind.  And by the way, EVEN IF, a woman does change her mind down the road, you can have reconstruction on a totally flat chest.  Why are women having to fight so hard for their right to be flat?)

5.  I wish there was more discussion by the medical community about the option to stay flat. It was disappointing to find the information inside the implant brochures that were given to me to read on my own….it should be upfront and pointed out and discussed by the plastic surgeons. I am so happy I found it and elected to go flat!  (Friends….THIS is exactly the thing I’m talking about when I say that women DESERVE to know all their options, and that our Doctor’s should be discussing these options in detail before expecting a woman to make a decision about how she wants to proceed.)

 6. That the compression bra they send you home with itches and hurts.  Get your own.  (I can not stress this enough!!!  Visit your local mastectomy store and get your own compression tops. Your insurance should cover them!)

7. Keep a small pillow in the car to place against your chest under the seatbelt. My ride home from the hospital would have been much more comfortable.  (I can not stress this enough either!  I found this amazing company online prior to explant and I used this pillow, not only in the car, but at home to keep my arms off my drain tubes.)

8. That it can be a very major surgery with a lot of recovery time and complications. I had been kind of led to believe that I would be broadly fine a few days after, if a bit tired. This was… not the case. I was lucky to not have complications but due to another medical condition it knocked me for weeks and I wasn’t expecting that at all.  (This was also the case for me as after both my mastectomy and explant I had substantial blood loss.  So substantial after my explant that it required me to go back in for a second operation to stop the internal bleed.)

9.  I wish I knew more about some of the side effects of treatment….and how long they may last (still dealing with some side effects nearly 2 years post chemo)

That the side effects of treatment are WAY worse than the cancer, and that I will be a cancer patient for the rest of my life. Its NEVER “over”.

 I am disappointed in how little side effects are understood by professionals and normal people. “We” may look fine on the outside but be so fatigued and miserable at times. When you look good, sometimes a lot is expected of you. Explaining this to healthy people gets redundant. Guess this is the same for any disease.

(This is a common one. Always, ALWAYS ask questions about all side effects of any medication they want to put you on.  Some of these SE’s you will have to deal with for the rest of your life.)

10.  To have a lymphedema check up before surgery — baseline measurements and analysis would have helped with the later diagnoses and treatment.

11.  I wish I’d known that I should plan for manual PT after my surgery; that I should do my research to find out who in my area I wanted to see (the PT my surgeon’s office referred me to did no manual work and wasn’t a good fit); and that I should have called BEFORE my surgery to set up appointments for after my surgery because the PTs in Seattle are booked weeks or months in advance. I wouldn’t have even known to seek manual therapy if it weren’t for this group, and it has done wonders for me. I only wish I’d been able to get an appt fewer than 10 weeks out. (Having a mastectomy can greatly limit your range of motion and strength, and more women than not end up needing PT after surgery.)

12.  I wish they had given us something to hold the damn drains. My drains were huge, so the drain shirts I bought didn’t fit. They were a pain in the butt! (Drains are a nightmare.  They are stitched in your side.  The stitching pulls.  You can’t shower, lift you hands above basically waist height, they get super sore, and they are a pain to try to try to figure out how to attach inside your clothing.)

13.  They make pain pumps that deliver local anesthetic directly to the surgical site for 2-5 days, and typically greatly reduce the need for narcotics. My surgeon used the ON-Q pump. I still had a lot of pain, but shudder to think of what it would have been like without the pump.  (For the love, ask your surgeon about a pump.  It does drastically reduce the need for narcotics.  The LAST thing you want to be dealing with on top of already feeling like crap, is constipation from narcotics.)

14.  That it is hard to lift your arms up to wash your hair with your drain tubes in.  If you have the financial means, I highly suggest a weekly hair appointment to have your hair washed and blown out.

15.  That we were given ALL the information by our medical care team to prepare us for what was to come.   Don’t even get me started on how poorly they prepare us for the surgery and recon aftermath! The pain, the drains, cording, seroma, lymphedema…. (Breast cancer isn’t a pretty pink ribbon.  It’s not a one and done surgery thing for most of us.  It’s months (sometimes years) of treatment, physical therapy, draining seroma’s, fills, weeks of having drain tubes, wound vacs, cording, lymphedema, etc.  It’s a hard road to walk, and we deserve the information so we can best prepare ourselves.)

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