Normal for changes in reconstructed breast?

arbojenn said:

worrisome
Barb,
Recurrence in a reconstructed breast is rare, I understand. You may have to get really pushy about insisting upon testing. Does the scar look different? What looks like suture scars can be recurrent bc. Have you ever had a PET scan?

arbojenn said:

Barb, I would be concerned that the mammogram would not give the information needed. Did you have an implant put in when you had reconstruction? I can only offer you my experience. I never had the reconstructed side imaged with mammography because it really isn't that effective when you have an implant. Last summer, though, I noticed the scar appeared different and that tiny modules appeared along side of it, and DID appear to be stitches. Then a rash appeared. I do not have much feeling in that side, so I didn't feel any pain until the rash went around to my back where I do still have sensation. The GP thought it was just scar tissue and suggested I see my plastic surgeon. Being ten years out, I had been released from the oncologist and the GP did the follow up as far as blood tests, scans, etc once a year. She wasn't too worried, so I wasn't too worried. Well, I put off seeing my surgeon even though the area now felt "heavy" and was starting to hurt somewhat. Then in March, I got shingles--not relevant to the cancer, but I believe it was heaven's way of intervening so I could get the help I needed to diagnose this cancer early. I went in and asked about the rash which had appeared to have spread onto the flap skin of the reconstruction where it eventually turned into hard lumps that did indeed appear to be scar tissue. The PA I saw was concerned and sent me back to the GP who referred me to a local plastic surgeon. The plastic surgeon said she had never seen such a rash and sent me to a dermatologist who was convinced it was an infection of some type. She took a needle biopsy of two separate areas. Both came back as recurrent breast cancer and all the docs were floored. As it is rare, I think it would really take an experienced eye to suspect it. A third biopsy was done to determine hormone status and thank goodness it was estrogen positive. I was put on Femara which is working beautifully. If this were not a recurrence, I do believe I could get by on the Femara alone! But since it IS a recurrence, I will have to have the reconstructed area excised and radiated. (Due to kidney surgery decades ago, I will have to have skin grafts to cover the area as they cannot stretch the skin to cover the hole.) Then six weeks of radiation. That way, I can maybe zap it out for good.
Long posting, but my point is when something does not occur very often, even the best might overlook it or attribute it to something else. My story is going to have a happy ending but only because Somebody intervened so things would fall into place and my recurrence would be found early. I do not blame anyone--not even myself--for thinking my "spots" were just scar tissue or a rash. Most of the time, that is exactly what it would be. No doctor can know it all. I am just lucky I got Shingles (whoever could imagine that illness could be "lucky!") and the ball got rolling: left up to me, I still would not have contacted my plastic surgeon as he is in the opposite side of the state and I would not have made the effort. (And even though he is one of the best in the business, there is not guarentee even he would have suspected.) Insist that you want to know for sure. I think the best way to tell if you have a recurrence or not is a PET scan, but you have to check with your insurance as that is really expensive.
On a final note, and this is almost spooky: Once I saw that PA, the rash of the shingles remained, but I never felt any more shingle pain at all! And anyone who has had shingles can tell you, that is a miracle unto itself!