This is the personal story of a bedside nurse taking care of post-mastectomy patients and her own experience of having a double mastectomy.
Read about her experiences as someone who has been both in the shoes of a caretaker and patient. Jeannette tells what to expect and how to make the recovery period speedy and complication free.
The personal story of Jeannette
As a nurse working on a busy surgical floor, sometimes there isn’t enough time in the day to really look at your patient. I’m not referring to assessing or caring for their needs, I’m talking about looking at their expressions, hearing their inflection of voice, their emotional pain that sometimes is only expressed with a flat affect.
However, I do remember the women that had mastectomies and I remember thinking “How sad, their eyes look so hollow”.
Was it the tremendous battle? Was it fear? They had a reluctance to look at the bandages and the empty place where their breast used to exist. Educating them on incision and dressing care was challenging and emotional for both parties.
When caring for people that were ill and had life-threatening conditions, it never occurred that it could happen to me. As a matter of fact, when I was diagnosed with stage 2; Triple Negative breast cancer I thought they probably got my biopsy mixed up with someone else.
However, the PET scan confirmed that I indeed had breast cancer, and for the first time in the 20+ years of being a nurse I stepped into the patient’s shoes. After 8 rounds of chemotherapy my oncologist, myself and family decided that a double mastectomy would be the best option, and give me the best chance for survival.
So on August 12, 2013, I had a double mastectomy with lymph node dissection and immediate reconstruction. I pushed myself through the recovery hoping to put the horrible experience behind me and get on with my life.
Returning to work two weeks post-mastectomy was probably too early, I remember looking in the bathroom mirror at work and crying, there was the hollow eyes, the flat affect and the expression of emotional pain. I needed to help women; I needed to educate them on this process to make this easier for them.
Since my recovery, I have done several presentations on breast cancer, but have not spoken about post-mastectomy recovery. There are things that I discovered through trial and error. Things that I didn’t even know after years of being a nurse. Tips I wish I had known myself that I want to share to make a women’s journey to health easier.
What to expect after mastectomy surgery
The surgeon will give you special activity instructions and most likely you will be given activity restrictions. You will also have up to 2 drains per surgical side. Follow you doctors instructions, I cannot tell you the women that I personally cared for who came back to the surgical floor post mastectomy because they didn’t follow directions.
Case in point, a 37 year old woman who had a unilateral mastectomy and lymph node dissection of 12 nodes went home with strict instructions for mobility. She was told not to carry anything heavy or to lift her arm over her head. She came back 3 weeks later with a large seroma ( pocket filled with serous fluid) that required drainage. She carried her handbag that weighed well over 5 pounds on that side and as a result this required another surgery and longer recovery time.
A mastectomy is an amputation. It is not only the removal of a part of the body but it is an emotional amputation. It can leave you separated from womanhood, and leave you feeling not quite the woman you were before.
People can tell you that you look great, they can tell you they can’t even tell you had the surgery. Your significant other can even tell you it doesn’t matter and that you are just as attractive now as you were before.
Unfortunately, in this matter it’s what you feel, and what you are thinking. Take some time to decide how you want to handle the first time you see your reflection, plan the occasion.
Do you want to be alone, or have the support of a loved one? Be prepared for it to be emotional. There will be a 4-5 inch incision and you might not have a nipple. No one prepared me for the first time I saw myself. That was 18 months ago and to be honest it is still difficult. I have had reconstruction twice and it takes months for the swelling to go away.
They won’t consider reconstructing the nipple or even tattooing one on until the edema is gone, and so I have no nipples even after all these months. I am seriously contemplating not having the nipple tattooed. So here is my tip: seek counseling before the mastectomy and continue to see a therapist after the surgery.
The similarities with war victims
Someone once told me that having breast cancer, the treatment and then a mastectomy is like war and many women have post-traumatic stress disorder.
Talk to someone about your apprehensions and your fears. Do not take your significant other to every counseling session but do include them on occasion. There are times when you will want to talk about how you feel and they will feel the need to reassure you, but remember it is happening to them also.
Relational and sexual consequences
While the breast is not an estrogen, testosterone or progesterone producing organ, they do have sexual power. In other words, they can make a significant difference in the bedroom whether they are there or if not there. As I said before, you may not be feeling like the woman you were before and you may not feel sexy.
Your hormones may have changed also from chemotherapy and you may be menopausal or post-menopausal, which is certainly going to play some havoc with sexual intimacy.
Speak with your therapist first about this because foremost this is part of the healing process. Speaking with your doctor is also advisable, there is some contraindications to treating women with medications for sexual dysfunction who have had breast cancer but is important that you healthcare provider knows that this is an issue.
Breast cancer is wearisome on a relationship and it doesn’t stop with treatment, especially if you have had a mastectomy. Seeking professional help is not a sign of weakness, it is a sign of strength and moving on.
Expanders and radiation
Talk to the oncologist radiologist, the plastic surgeon and your general surgeon before you have the mastectomy. Many oncologist radiologists do not like expanders in the way if they need to do radiation. The combination of expanders and radiation can cause capsular contractures in the breast that can cause scar tissue, pain and deformity. (What are expanders? Scroll to the bottom of this page.)
In my case I discussed with the plastic surgeon and the oncologist radiologist and had decided that if I had any lymph nodes that were positive and I required radiation I would wait for the expanders. However, I was fortunate to have all negative lymph nodes and did not require radiation and so; I had immediate reconstruction and was able to bypass the expanders completely.
Garments, dressings and other recovery aids
Before you even awake from the surgery you will have a special bra applied. This bra looks more like half of a shirt and is zipped in the front. It gives you support and helps to hold the drains in place. Don’t remove the bra unless you are showering. Sleep, eat, and breathe in the shirt bra. It fits snuggly for a reason; it helps to keep the edema from increasing and also helps the edema to decrease.
After the last reconstruction is complete the plastic surgeon may want you to wear silicone sheeting on the scar. This reduces the appearance of the scar and can even make it somewhat invisible. It can also help to flatten the scar.
What it cannot do is breakdown the scarring below skin level, so if you have some dimpling (it is not unusual) it will not remove, decrease or change it in any way. If you doctor does not suggest this to you then it would be a good idea to inquire. Remember, this will not be initiated until all reconstruction is complete.
Talk to your surgeon about post-mastectomy/reconstruction massage. Put this on your list of subjects to talk to him/her about before and after the surgery.
Take someone with you when you have these appointments and take notes. If this conversation takes place at the time of discharge from the hospital it is most likely that much of the conversation will be missed and/or forgotten. Post-surgical patients can have memory problems for a short time after surgery. Therefore, another set of ears to hear instructions is a valuable asset.
Post-mastectomy massage takes place several weeks after surgery and can help to keep scar tissue from forming; it can also help scars to not be so prominent. If you have had immediate reconstruction post-mastectomy massage can also keep the implant from becoming encapsulated with scar tissue, in which case the breast would become very hard and painful and the implant would need to be removed.
In my case, I had no recollection of a conversation that included massage, despite my surgeon and his nurse practitioner saying that it did and despite my years as a nurse. So as a result of my lack of massage, I was lopsided; I had one implant that rested just under my armpit and the other one had settled in nicely in the pocket. This was just another reason the reconstruction needed to be completely redone 6 months later.
Nutrition and supplements
Nutrition is very important during the recovery period, particularly intake of protein. Protein is essential for building tissue and healing. Your appetite may not ravenous for a while after surgery, so I suggest drinking protein shakes and taking supplements. Your protein intake should be approximately 50-75 gm a day. One average size chicken breast is around the size of a deck of cards and roughly contains 25 gm of protein.
Personally, I have found that salt is a problem for me since my surgery and consuming to much leads to swelling in my hands and arms that I never experienced prior to the mastectomy. So I watch my salt intake and try to increase my water intake.
One more tip that I feel is very important is to ask for a referral for physical therapy both before and after the mastectomy. As a practitioner, I feel it is important to see the patient before the mastectomy for several reasons.
Many women that are large busted and will be having a mastectomy will either have a bilateral mastectomy or a mastectomy on the affected side and a breast reduction on the other. Speaking from experience, this will change your posture, the way you sit, your balance and the way you walk.
The physical therapist needs to evaluate you the way you were before the surgery to see how you are compensating after the surgery. Physical therapy is important also to help restore mobility to the affected side and also show you how to do lymph massage to prevent lymphedema.
Here are the tips that I have suggested:
- Follow your surgeon’s instructions about restrictions concerning mobility and how much weight you should be carrying on the affected side.
- Seek counseling and therapy before and after the mastectomy for both yourself and your spouse independently and as a couple.
- There are post-mastectomy support groups available that meet once or twice a month that can give you valuable information. Seek out these support groups before your surgery.
- Consult with your oncologist radiologist, general surgeon and plastic surgeon before surgery.
- Talk to your surgeon about post-mastectomy care, including drain care, wound care and post-mastectomy massage on the affected site to reduce scar formation, deformity, and encapsulation.
- See physical therapy before the surgery to be evaluated and after the surgery to help restore mobility to the affected side and lymphedema.
Yes, I am a nurse who cared for women after their mastectomies and I am also a survivor who had a mastectomy. Now I am a nurse practitioner and I see women that in some cases had their mastectomy years ago.
When I take my stethoscope to listen to their heart and lungs they clutch their shirt first so they can explain, I just look at them, smile and respond. “We chose life instead of our breast, and I would not have it any other way”.
Jeannette Zelhart-Smith, University of Saint Francis Fort Wayne.
See also: 42 breast cancer surgery gift ideas
Glossary of medical terms
Lymph nodes are oval-shaped organs present throughout the body including the armpit and stomach area. They play an important role in the immune system. After the surgery a pinching pain may occur where the lymph nodes have been removed.
A breast tissue expander is an inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant. Source: Johns Hopkins Medicine.