AT MY WITS END...NEED ADVISE

Hi,

I don't post often but read this site all the time. I could sure use some advise from those of you who have info on reconstruction.

I was diagnosed with stage 2B Invasive Lobular Carcinoma (2.1 cm tumor-(ER/PR positive-HER2 Negative and now on Femara) in May of 2013. I am 65 and had a double mastectomy with immediate reconstruction with tissue expanders. I also had 8 rounds of chemo (4 A/C and 4 Taxotere). The expanders were very painful and I had them in for seven months. After the exchange on December 5th 2013 I developed blood clots in my lungs and am now on Coumadin until next spring per my oncologist/hematologist.

My cancer was on the left side and I also had eight lymph nodes removed during the mastectomies. My right implant seems to be OK but still somewhat tight but I don't notice it that much. My left side, where the cancer was is still very tight (I don't have capsular contraction) tight under my arm and muscle area and  when I do any reaching, pulling etc. It also feels squishy sometimes and it droops below the fold line because the skin is so thin there that it didn't hold the implant in place very well. My plastic surgeon says he can fix that in his office when I am off of the coumandin. I have been to PT three different times for range of motion and myofascial relase...two month at a time for each period. PT does help but my benefits on my insurance are maxed out until January.

I  try to remain positive about the way the impants feel and am grateful to have NED. My clothes do fit great and I am grateful for that. But the tightness, pain, etc gets to me every day. I cannot take drugs for it because I am on Coumadin. My plastic surgeon doesn't seem concerned and says women just learn to live a new way. Easier said than done. I do exercises every day and massage twice a day. Coconut oil doe help too. I also do yoga three times a week. But the constant wire feeling around my chest drives me crazy.  I wear a bra 24/7. My breast surgeon and plastic surgeon tell me it will take 18 months to 2 years before the tightness subsides. I don't know if I believe them.

To that end I have made an appointment with another well respected plastic surgeon locally for a second opinion. I have heard that he is a good listener, which my plastic surgeon is not in my opinion. He dismissed my embolisms as pneumonia and said I was mis- diagnosed. I don't think so!

I really think sometimes about having the implants removed permanently but am afraid to do that as well. I really wish I had taken more time about this decision and had known someone who had had this done.

Any advise or suggestions about pain, tightness or soreness would be greatly appreciated.

Oh, one more thing...does anyone know if the implants are supposed to be the same size as the expanders were. Mine were 650 FOR implants and tissue expanders.

Hoping for some relief.

Mary Ellen