follow-up after bilateral mastectomy

ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I had invasive intraductal bc diagnosed in January and elected to have a mastectomy to that breast. I am now going thru chemo and am about halfway done. Also, I just found out I am BRCA 1 and will have a preventive mastectomy on the other side on Sept. 18 (after I have healed from the chemo). I'm not even done with the chemo yet, but am already anxious about follow-up and recurrence since I will have had a bilateral mastectomy. I haven't asked my doctors about follow-up techniques for mastectomy patients yet in detail (I plan to at the next visit), but so far I've gathered from my breast surgeon that she will just check me by palpating and physical exam. So my question is: are there are special techniques or tests beyond just palpating to check for a recurrence in someone that's had a bilateral mastectomy? I am very anxious about this since finding out I have BRCA 1. Also, I am wondering if I should have radiation, too, and which hormone treatments are most effective in a high risk patient (such as myself with the BRCA)? I am really going through a lot since I have been diagnosed BRCA and am terrified of getting a recurrence, although I am glad I will be having the preventive mastectomy. Any answers to the above questions will be appreciated! Thanks. Ohilly


  • As you know, I lost both breasts at different times...
    Since then my onco does a chest exray at every visit in addition to the blood tests.
    I totally understand your fears....but keep in mind that now you and your onco know what to look for, if anything else SHOULD crop up (God forbid) you and your dr will be on it right away and can nip it in the bud. Hugs.
  • lfly
    lfly Member Posts: 50
    Just want to share a little experience.
    Later on down the road after the healing and you are living life to the fullest again don't forget to take care of yourself.
    I thought i was invincible after a couple of years and went about life. Then i went through a terrible stressful time with husband. I lost almost 40 lbs. and had a back ache that didn't go away for over 4 mos. I thought it was stress related. I still don't much like doctors even to this day so i never had it checked out. Then the injury at work happened. A few days after that i couldn't get out of bed. Yes, the breast CA had mets to the bone, vertebra L5 crushed, and lung, i was thinking my job was causing my shortness of breath.
    Like i said i thought it was my job and other stresses causing my problems. I ignored symptoms that i should have taken warning from.
    The recurrance came almost 5 yrs after the first time.
    The Onc. chewed me out over it and i beat myself up for quite awhile. Almost didn't do the chemo. but i was willing to do the radiation to what was left of L5 so i could walk again.
    Today people that don't know my med. history cannot tell that i've ever been sick. Wow.

    Always have aches or pains checked out especially lasting longer than 2wks. Even though i don't like going to the doctor i do go now and tell them everything. After all they've saved me three times.

    Hang in there ohilly. Recurrence is not what i wanted to happen but it did because i didn't take care of myself and wouldn't go to the doctor. If caught in time they will knock it down again.

    Sending hugs.
  • seof
    seof Member Posts: 819 Member
    I agree with what the others have your Doctor. I have had bilateral mastectomy and plan to have reconstruction with my own tissues (hoping for DIEP procedure, but still a year off, since I am still doing radiation). I expect to continue mammograms, or maybe ultrasound, whatever my Dor. recommends after recon. I think you should write down any and every question you can think of between now and your next visit, and take the list with you with enough paper to take notes on while you listen to the answers. If you can take someone with you to help listen, it could help too...4our ears and 2 brains can hear more than one. Information is the best weapon against fear for me, and the Dr. is the first line of defence for getting the right information that applies to your specific circumstances.

    Take care of yourself, seof.