Franklin Journal Title: Surviving cancer: Expectations of a mastectomy subtitle: [quote of point number 11] [printed autumn of 2003]

Last February I underwent surgery for breast cancer at Franklin Memorial Hospital. Later, I found myself wishing I'd had a list of what to expect. These suggestions are made in response to that wish.

I was lucky that both my health practitioner and my surgeon were open, warm, unhurried in conversation, and sharp. But I didn't know all the questions to ask. Moreover, I didn't follow the good advice of more than one person, to have a tape recorder or friend with me to help me remember what was said to me. Certainly, a number of the points in my list were explained to me before surgery.

But I am one who learns better from seeing the words, than from hearing them. I am presenting this list for anyone who also likes to see things written out. I hope this will be helpful to anyone dealing with a similar situation.

Information you need when you are having a mastectomy

1. See if you can find someone to show you what a mastectomy scar looks like. I had a friend who volunteered to. This was very helpful to me, for two reasons. First, I had imagined it would look much worse than it did. Second, her relaxed, matter of fact attitude towards it made it seem much less significant than my fears made it.

2. If you are not comfortable to ask anybody, order the back issue #291 [March 2000] of "The Sun" by calling (919) 942-5282. There are tasteful photographs and short personal stories of women with mastectomies.

3. Wear loose shirts open in the front to the hospital. I, unfortunately, had gone in wearing a turtleneck and a pullover. I didn't realize that after a mastectomy it is painful to lift the arm on the mastectomy side. Going home, I just tied my turtleneck and sweater around my neck like capes, one in front, one in back. It worked, but I would have been happier to be better prepared.

4. For surgery, the IV is placed on the opposite side from where you will have the mastectomy. More later about care for each arm.

5. Following surgery, be aware of the benefits of the variable-pressure cuffs (alternately ballooning and deflating) around your calves. They're not put on you to aggravate your post-operative fussiness, but to prevent blood clots.

6. About post-op care of your mastectomy side arm: stretching is vital. Ask your doctor or physical therapist about how soon after surgery to begin. Breathe in with gradual stretches. Pretend you are breathing healing light into your body with each in-breath, and breathe out tightness. Repeated gentle stretching every so often through the day makes a big difference.

7. About post-op care of your IV arm: probably you won't have a problem with tenderness and swelling from the IV. But if you do, take it seriously. I did have swelling and phlebitis (inflammation of a vein). It might not have taken so many days of hot packs (one hour at a time, three times a day) and Ibuprofen to eventually reduce it if I had asked my doctor about it right away.

8. I created another problem for myself with the IV arm, because I misused it during the days I couldn't use my mastectomy side arm much. I strained the shoulder pulling myself around in bed with my elbow. I strained it trying to do chores single-handedly that needed two good arms. I'm still dealing with problems from the misuse of my stronger arm, long after my "weak" arm is normal again.

9. It feels good to soak in a hot bath once you have your stitches/staples out and your tape off.

10. The ridge that remains parallel to your breast bone isn't something that the surgeon forgot to remove. It's not breast tissue. It's supposed to be there. Surgery reveals anatomy under the breast which wasn't seen before.

11. Listen to your body after the surgery. See if maybe it's celebrating being freed from a threat.

12. If you want to talk, or need to talk, about your medical situation, ask for a contact who could be supportive.

13. Some people, like me, prefer to write their feelings and not talk. [I confess to having stonewalled several kind inquiries.] You could try both writing and talking and see which feels more healing to you.

14. To regain skin elasticity and to help your stretching, you will want to massage your scar tissue frequently. Ask your surgeon or physical therapist when you can make a gentle start. Also, it took me a while to realize that the scar tissue extends broadly above as well as below the visible scar. Nor had I thought about the scar tissue caused by the full length of the tube for the drain put in under the armpit. So when you are massaging vitamin E oil and cocoa butter into the scar tissue, cover a wide area.

15. It's good news when the mastectomy site starts to itch and give you occasional sharp twinges (for me about two or three months after surgery). It means that the nerves are regenerating. In Susan Love's "Breast Book," [p. 439] she says that the site may stay numb. But at only five months from surgery, I already had a large area with normal skin sensitivity; and even in the somewhat numb area below my armpit, I could sense a gentle pressure. Maybe the massages made a difference.

16. The most positive thing about a mastectomy is that it is not ultimately a change in strength or vitality. You can work to make the scar flexible and to retone your muscles. From the purely physical point of view, it is much less traumatic to your body than surgery on a major organ. And in some cases it makes chemo or radiation unnecessary.

17. I understand that the Amazon women warriors used to remove a breast on purpose so as to be more comfortable and efficient handling bows and arrows. That makes me feel sisterhood with those strong women.

18. A mastectomy is a change in shape. It is not a change in self.

I want to thank Marie Wade in the Physical Therapy Unit and Dr. Eric Gunther of FMH for reading these suggestions through. I was happy that they found them useful. Anstiss Morrill, Franklin County resident