About Me: Female, 31, fairmont, WV, member since Jun 2011
Hello there, my name is Gabrielle love Anderson; and I have a story to tell you. I’m a 28 yr. old stay at home mom with a beautiful 3 yr. old daughter. It’s been a year in the making of me writing this story but one that I feel needs to be told in the hopes of the other
[More] women out there suffering the same as I have; in the hopes of letting others know what we feel and go thru in the day to day struggle of our internal battle. So let me begin by saying in a couple weeks over a year to the day of my bi lateral mastectomy. And no it wasn’t due to cancer but a lesser known issue called granulomatous mastitis.
Back in early 2010 one evening my husband noticed a rather sizeable knot that was growing in my left breast. I of course had felt it for a little while but like most women because it wasn’t in my face every day and I had many other things to take care of I hadn’t addressed the situation yet. We were living in Florida and my husband traveled a lot for work, we had a small child to take care of which was my focus and unfortunately we were only slightly above poverty level. I went in first to try to see a doctor and didn’t have the money the walk-in clinic required and was turned away. So I started researching and found Komen for a cure which applicants can apply for breast and cervical screens for low or no cost depending, and made an appointment for an ultrasound and mammogram. My results from the appointment which was the beginning of March showed a spot below my right breast and a spot inside my left breast. And from March to October of 2010 I walked into women’s clinics, doctors’ offices, hospitals, and charity clinics, and got turned away from all of them. I didn’t have the money to pay, I didn’t qualify for their program, was below poverty level and didn’t meet their criteria, or in the hospitals case because it was under the surface of the skin it wasn’t something they could treat on an emergency basis. And during this timeframe not only did the knot grow to a lump but I also had an abscess form on the surface of the skin under my left nipple. My breast became increasingly more painful on a daily and weekly basis. When the abscess on my breast popped and drained as it healed on the surface, my nipple started to retract and the pressure in my breast grew. In a panic after I got turned away from yet another clinic I called my sister and asked for help. This was the middle of October 2010. Thank god she works for a wonderful surgical practice and by the end of the month I was on a plane to WV with my 2 yr. old in tow to finally get some answers on what was going on with me physically.
They had another mammogram and ultrasound scheduled and performed which showed growth of the spot in my left and after a physical exam decided a biopsy was the next step. They did an excision on the cyst under my right breast and a biopsy removal of the spot in my left breast which was about the size of a medium grape. Pathology came back chronic and acute mastitis which showed granulomas and large bodied foreign cells. Now because I had this for so long undetected with no way of knowing how I had got it the surgeon was unable to give me answers on whether it was fully gone, how I could help prevent it, or a way of treating it with medicines or antibiotics. I flew back home to Florida with very mixed emotions and more questions than answers.
Although the spot had been broken up and removed my breast was still extremely sore and painful and hoping the nipple would release and start to come back on its own I slept on heating pads and took anti inflammatory round the clock. I prayed and prayed my breast would return to normal and the pain would go away and unfortunately it only got worse. The pressure and swelling didnt go away and my nipple continued to disappear altogether. By Christmas 2010 I was barely able to wear a bra and was having nerve pain attacks that came out of the blue. By February I couldn’t sleep on my stomach anymore, couldn’t hold my daughter, couldn’t wear a bra,couldnt drive without the seatbelt causing me pain. I lived in a state of miserable panic thinking and feeling like my breast was just going to explode. I spent months with no caffeine, chocolate, salt, or anything that would trigger breast inflammation. I watched my diet, took lots of vitamin e, and did anything else i could do to help relieve the constant screaming pain of my breast.
By March 2011 I was a miserable mess. I couldnt sleep, could barely take care of my daughter, was having problems functioning altogether dealing with the ungodly pain and just couldn’t take it anymore. I called my sister again and pleaded for another appointment with the surgeon. Knowing that going back to him meant surgery and permanent changes I really tried to be as optimistic as I could dealing with the reality of what was going to happen. This time we drove from Fla to WV with heavy hearts and weight on our shoulders.
After the pre surgery requirements were taken care of I had the appointment with the breast surgeon and made my case for the surgery. We discussed all the possible options and I told him to take as much as he needed to take to take care of the problem. I was done dealing with the pain, and just wanted it gone. I didn’t want to lose my breasts but there really wasn’t another option without several surgeries and the end result being the same anyway. The surgery wasn’t all that difficult from the surgeon’s standpoint but was just as surprising to him as it was to me. I awoke in post op knowing that my breasts were gone and finding out that my nipples were as well. When he had opened up my left breast he found a mass the size of a baseball, it wasn’t a mass on its own it was corrupted breast tissue that turned into its own mass. The mass was attached to the back of my nipple and when he went to cut the mass away my nipple busted it had become so infected and retracted. He cut into my right breast and found that the tissue was already starting to corrupt and change the same way my left one had, He had no choice but to leave me with enough tissue to reconstruct. If he had left my right breast and nipple intact it would have only been a matter of time before I was back on the table for him to take it as well. This was the best choice either one of us could make. I was floored, unprepared for losing it all but knowing that soon the pain would be gone completely as my chest healed and tried to find some normal balance. I went from a curvy thick hourglass with dd's to an abnormal pear shape. Talk about an identity crisis.
My man of 3 years loves me so much that April 5th 2011, 5 days post op wrapped in bandages just having had my drains removed we got married. Chest less and still in shock with my family surrounding me he pledged to love me no matter what form my body may take.
And this last year well it’s been rough. I have a wonderful husband that grounds me and loves me for me, but that doesn’t mean that I wasn’t a wreck. I definitely continue to go thru the stages of grief where my breasts are concerned. I cried for days asking why it had come to this point. I ranted and raged over the fact that if Florida’s healthcare system had been better maybe I wouldn’t have slipped thru the cracks and it could have been treated before it got to a critical point. If one of the many times I had applied for assistance been approved then maybe I might still have my chest, and it would have been just a common thing for any provider to handle. In part I blame Florida for the failure and know that in not the only one that’s been ignored or denied having a valid medical reason and need.
I may not have had cancer but I still paid my pounds of flesh for something just as detrimental to a woman’s health, that’s ignored or mistreated and misdiagnosed. Many women do not know of the dangers of mastitis. It’s not just something that you can get while pregnant or breastfeeding, it doesn’t age discriminate and can hit at any age for a female from 20's to your 50's. It isn’t just an infection but an inflammatory disease which infects and affects your breast tissue, ducts and lymph nodes. It isn’t something that’s widely known about whether its cause, duration, or treatment. And most of the time when you tell someone about it they have the tendency to go huh? And OMG ouch. And then well thank god it wasn’t cancer. If it was cancer I might still have my breasts...It could have been treated and taken care of more easily. I’m extremely thankful that the excruciating pain is gone and I can hold my daughter again, that my husband can hold me without causing me pain is a blessing.
We moved from Florida to WV so I could be closer and be able to be treated post op for this whole process. I am going to an immunologist in hopes to try to find if there is an underlying condition or cause that I may have to have started all this. And at least for right now reconstruction is at a standstill. I need clearance from all my doctors to be able to qualify for it, and even then I may not be able to get tissue expanders or implants if there is the slightest doubt that my body won’t come back with the mastitis after reconstruction.
Thru all of this I will admit that I miss having my chest and hate the shape that I've become, but I miss having my nipples just as much or more, looking in the mirror and knowing I’ll never be the same again. Knowing that someday my daughter is going to ask why I look different, why I bear the scars I have.
And truly the real shame in all of this is that there is no American support group or foundation for mastitis mastectomy sufferers. There is so little known about it. There is one small web based group of women from all over the world that share their stories and treatments and trials and tears over their suffering and knowing that this small group is the only forum where someone else truly understands the hand I’ve been dealt. Knowing that there are others out there suffering with no help or understanding of this inflammatory disease is frightening. I hope in writing this that maybe word will spread that there are other things just as detrimental to a woman’s health and sanity besides cancer. I don’t wish for any woman to walk a day in my shoes. And I pray for the day that I can really talk about this without tears in my eyes or emotion in my voice knowing that it all could have been prevented if it had been treated in time.
Thanks again for calling me yesterday. After reading through today, I'm starting to wonder if I shouldn't see a Rheumatologist instead of a plastic surgeon? I'll ask about it Tuesday. Thanks again for listening. Call anytime.
I thought that when I requested the second mastectomy that my problems would be over. They seem so much worse.
The large hole being packed daily as well as the allergy to all skin preps and adhesives is making everything
so much worse. There is only one type of adhesive that I can use and it doesn't come big enough to cover the wound.
I wish you all the best.
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