Ok, now I have a question.

Hi Carol,

Ahh, yes, I get the itch too even after all these 7years. Although not as much as I used to, it’s still annoying as heck. Mine is right at my scar and although numb, it cannot be scratched or satisfied with scratching. It seems to be deep inside and I have no idea what starts it up or if it will ever go away completely. Is your scar very tight on your chest wall? My scar is very taut; I even have a few stretch marks coming from my incision… I wonder if that has something to do with it.? It’s a mystery to be sure.

~Pam

Just to let you know, it's not just those of you who haven't had reconstruction who have this problem. I have an implant, and I have the itching too. There was a thread about this a couple of months ago - it seems that a few of us who've had implant reconstruction have itching. Just like you, there is nothing that we can do to get rid of the itch - you can scratch the skin but the itch seems deeper, although of course with an implant, it's not really deeper! It also seems to be worse at night and sometimes even wakes me up.

This article was in one of my nursing journals and maybe an easier read than what I found on the net yesterday.
Sas

WHAT IS PHANTOM PAIN?

Pain experienced after Mastectomy
Occurs in 25-55% of women after mastectomy.
If it is going to occur, it usually begins early, within the first month after mastectomy More common in younger women, those who have had children, and in those who had premenstrual breast tension prior to mastectomy. Its occurrence is not related to a history of breast feeding, radiation therapy, chemotherapy or breast prostheses.

WHAT DOES PHANTOM PAIN FEEL LIKE

Initially it resembles clothes rubbing a sunburn or "sore nipples" like when one first breast feeds. Sharp shooting pains may also occur.
LATER ON IT CAN BE MORE OF AN ITCHY FEELING OR A GRIPPING DISCOMOFRT.
Early on it usually feels like it is coming from the nipple area even though the nipple is no longer present. Later it seems to be over the whole "breast.” It is intermittent, rarely constant. Usually it occurs spontaneously, but may be triggered. Common triggers include anything rubbing the incision (early on), vigorous exercise, hot flashes, sexual arousal, menstruation, and changes in weather.
Similar sensations may occur simultaneously in the non-operated breast, or on both sides at the time of a second mastectomy.


HOW LONG DOES IT LAST?

Usually phantom pain decreases in intensity and frequency over weeks to months. It may be replaced by phantom sensation, a tingly sensation and/or the feeling that the breast is still present. Some women only have phantom sensation, never phantom pain.
After 1-6 years, 10-15% of mastectomy patients will still experience some phantom pain. The frequency varies from a few times a year to more than once a day (uncommon). Another 10-15% will have only phantom sensation, the feeling that the breast is still present.

WHAT CAN BE DONE FOR PHANTOM PAIN?

Phantom pain can be treated with capsaicin, a non-prescription cream found in the arthritis section of the drug store. 85% good to excellent response. Cost ~$10 per tube. first few applications. It may make the phantom pain more frequent for the first few days. It takes 2-4 weeks to get maximal effect. Check with your doctor to be sure your incision is healing adequately before starting.

Carol,
I also have the itching, even after all these years (dx '96). It's not as bad as in the beginning, but I get it every once in a while. By the way, it's not a good idea to wear an underwire bra, it could lead to lymphedema. If you like the bra, just cut a small slit, and pull the wire out.

I had a mastectomy 17 years, ago, and I still get the tingly feeling and the feeling that the breast is still there.
Sometimes it feels like my nipple itches. With itching I find that pressing or patting the spot helps.