Hey everyone!
I'm new to this whole blogging thing, so forgive me if I mess up along the way. But I wanted to start a support group for women (or men, I'm not sure if this condition does happen in men, but since they can get breast cancer as well I don't see why not!) who suffer from the disease of fibroadenomas. For those who do not know the definition, I will share my own that I have gathered from being a person living with this disease. Fibroadenomas are benign masses that are only found in the breast (if they are in the uterus they are called fibroids) and they grow uncontrollably. They are generally bumpy and not particularly smooth, and are hard. Fortunately, they are not cancerous, but because they continue to grow surgery is the only option.
I'm starting this blog because I want people who suffer from this disease to have a place to talk about it, learn more about through others experiences and receive emotional support. I strongly believe in order to be resilient community support is imperative, and I hope this blog can play a supportive role for the millions of women who have been diagnosed with fibroadenomas. I will share my story. I have suffered from fibroadenomas for over 10 years and I'm 22 right now. When I was first diagnosed, I was 11 years old and I was diagnosed with fibroadenomas. At the time, the fibroadenomas was in the left breast and was measured at over 7 cm long. I rememeber being in health class learning about breast cancer and how it is important to do self breast exams. Well, I performed one that very night and found a large lump. I didn't tell anyone for about 3 days and I finally broke down in tears to my mom telling her I have cancer. She gently laughed at me (she is a doctor) and explained to me that is most likely isn't cancer and even suggested that it could be a benign tissue ( I was still convinced I was dying anyway) and that we will go see a childrens specialist. After the ultrasounds, the doctors were convinced they are fibroadenomas and I was rushed into surgery. My first surgery was June 5, 2003 on my left breast and I have had two more since on August 19, 2004 (both breast operated)and July 31, 2006 (just right breast operated). Naturally, I thought I had overcomed this disease and haven't had fibroadenomas until now, my last year of college. I went to the doctor complaining of a lump in my left breast and after ultrasounds on both breasts it was revealed that I have 3 in my left breast and 9 in my right (yes 9!!!!). This was very fustrating news because the doctor told me my juvenile fibroadenomas would subside after puberty and my teenage years. The astounding number of fibroadenomas is very surprising and I felt very fustrated and alone with this news. My last surgeries have left scars (although not too visible) but it is always a difficult time when you are required to have major surgery.
I hope my story will help someone in a similar position and demonstrate you are not alone. I have pictures of the fibroadenomas they removed ( I know I'm weird, I asked the surgeon to take a photo before he disposed of them), poems I wrote at the time, and more stories to share about recovery and the process of surgery. Should anyone have any questions or comments please feel free to post. Hope to hear from you soon and take care!
xoxo Lolo
Hi Lolo!
ReplyDeleteIt is 3am ad I have been researching fibroadenomas for quite awhile now and am grateful to have stumbled upon your story. It is nice to not feel like you are the only one going through this. I am 28 years old and I was diagnosed with 1 fibroadenoma in each breast when I was 16. One was the size of a lemon and the other the size of a lime. At 21 I embarked on my 2nd surgery 9 were removed. Then as my 26th birthday approach another 5 had to be removed. Again this last august I went in to have another 5 removed but one specifically that was extremely painful which isn't a normal characteristic. Unfortunately once the swelling subsided I realized the one had been missed. When I went in for an ultrasound to confirm it was the same one, the tech notified me of 4 more she found. The only option they are giving me is a bilateral mastectomy.Who would have ever thought we would have to make the decision we've had to make and go through what we've gone through at such a young age. So thats what happened to bring me here tonight. I am on a desperate search for any information and answers I can get. There has to be a Dr somewhere who wants to research and learn more about this disease. If my participation in studies could prevent or even slow progression for little girl so she doesn't have to live with what we have to, it would be worth it! Again, I am so incredible grateful to have stumble upon this page and your story. It gives me hope that things will get better!
Sarah
Sarah thanks so much for sharing your story! You are so strong and courageous, and I admire your positive attitude after all you have been through. I agree with you that more needs to be done with research and studying of fibroadenomas. It is extremely frustrating, because I feel that it's not at the highest importance because the masses aren't malignant. But your story is proof that this disease can be just as debilitating because you face the same predicaments as a breast cancer patient with a bilateral mastectomy.
ReplyDeleteI strongly believe that our emotional and spiritual health play a direct role in our physical health. Please continue to stay positive! Count your blessings and continue to be your own advocate. Do research and if you find anything useful feel free to post it to this blog. Also, I would love to hear back from you, so please keep me posted on your recovery. Stay strong, and I hope everything goes well! ~Lolo
By the way, Sarah I have a quick question, did the doctors say why you needed a mastectomy? I'm only pretty familiar with my own experience with this condition, therefore I didn't realize that some women are facing this invasive of a procedure to combat fibroadenomas. This is a pretty personal question, so no worries if you don't feel comfortable answering:), it's humbling to hear the choices women like you are facing. Take care! ~Lolo
ReplyDeleteHey Lolo!
ReplyDeleteI have had 20 removed due to the fact that mine refuse to stop growing and rapidly at that. Because of the abundance of surgeries and multiple incisions during each procedure I now have an incredible amount of scar tissue. Once I am old enough to start mammogram screening, due to how much scarred tissue I have already it will be harder to detect cancer because of all it can hide behind. Since there is no known cure for fibroadenomas, my surgeon suggested mastectomy to attempt to stop adenomas completely. I think we can both agree that never having to deal this them again would be amazing. My hesitation comes from the straight fact that they can't guarentee they can scrape out every last part of the tissue which leaves the risk of the adenomas growth to return. Surgery is always a risk but to now have them removed around an implant just raises the risks that much more. I always used to joke around right before they would take me back for surgery that they should just take them all out and give me new one!! :) Now that it has truly come to that it is terrifying!! I am hoping that my research adventures find me and others less drastic alternative. I am still in the state of mind where I just don't know what the right thing is to do yet. But I know the future is bright and good things will come! I will definitely keep you posted!!!
Sarah
I'm not sure if anyone will read this, but I am in a similar situation. I first found my fibroadenomas when I was 16. I had the two removed when I was 18. I foolishly thought I would be forever done with them. December 2009 I found 4 more lumps. They were biopsied August 2010 and confirmed to be fibroadenomas. Since then I have developed around 40. I had a breast MRI last Monday, and I have so many they didn't even count them. They are taking up 1/5 of my breast tissue. My doctor is having me consider a double mastectomy with reconstruction, because I tend to just keep making more and the ones I have continue to grow. I am heartbroken over this, and I am desperately hoping it doesn't come to this. I am only 22. I was wondering what ended up happening with you, Sarah. If you or anyone else can help me I would really appreciate it. I am in graduate school right now so I'm trying not to have a mental breakdown.
DeleteSorry to respond so late dreakkel! WOW. I am so sorry to hear that you are going through this right now. That is such a dramatic occurrence to have so many. Have you thought about changing your diet and natural treatment options? I would suggest going vegetarian, since yours is so aggressive, and eliminate as many extra hormones you take in as you can. So no meat or soy products (drink almond milk instead of regular milk). Try wheat grass juice and veggy juice as well. Overall, I would follow the "breast cancer diet".
DeleteGirl, I'm so sorry to hear about you going through this especially while being in grad school. I'm 23 and I just graduated undergraduate. My last surgeries I planned for over break so that I wasn't too distracted. But I wasn't facing that dilemma of a mastectomy, like you are. Have any other environmental factors changed in your life? I would recommend 1. Don't lose hope! 2. Start a vegetarian diet and eliminate extra hormones 3.DO NOT take birthcontrol 4. Keep that support system alive, we are here for eachother.
Stay Strong beautiful
xoxo
Lo
I just wrote this super long message to you two, but it just got deleted when I tried to post it...I'll try my best to re-write it all.
ReplyDeleteFirst off, I'm so sorry that you two are facing this annoying condition! Sarah-good luck with your decision, I can totally see each side to your situation and there are pro's and con's to each. Be sure to put your body first!
As for myself, I'm a 24 year old female who has been getting numerous fibroademonas since I was in high school. I've lost count on how many I've had removed but it is somewhere between 20-30 lumps. each lump I have left alone until they grow uncomfortably big (when they hit the size of a golf ball I usually give into surgery). I have 7 huge scars on both my breasts and have had over 8 surgeries. These little suckers just won't go away for me. It seems like every month I find a new lump. I'm a small chested girl as well (small 34B on a good day).
A few questions I want to know about you two. 1. Have you heard/tried of cryoablation? I never have tried it, and cannot find a doctor to try it on me. and 2.are you/have you ever been on birth control? My doctor does not want me on it in fear that it will only make more lumps on me.
I'm very thankful that this is non cancerous, but its still a hard struggle to deal with your breasts filled with lumps and scars (especially at our prime age!!) I can't wear a bikini bathing suit top in the summer or a tank top without some of my scars peeping through.
I know this is something we all are probably just going to have to endure in life and roll with the punches on this one, but it feels so good to find other people my age with this problem to chat with!! Keep going strong, ladies. Maybe soon they will think of something to end this!! :)
-C
C,
DeleteHey girl! I responded to your comments in my new blog posts. You should become a member to the blog if you haven't already! That way you can get direct emails when I post something. Hope you are doing well.
xoxo
Hello ladies. I am an 18 year old girl dealing with fibroadenomas in both of my breasts. I found my first one when I was 15. They kind of blew it off and I didn't worry about. In fact, I stopped doing my self examinations because I didn't want to worry about it. Now, I'm dealing with fibroadenomas that have converged into large masses. The one in my right breast is so large, it's a completely different cup size than the left one. A double mastectomy has been strongly recommended and I'm at my wits end. They're extremely painful all of the time and I'm too embarrassed to wear low cut shirts and bikinis. Should I go forward with it?
ReplyDeletehello. I am a 20 year old girl, and i have discovered that i have fibroadenoma when i was about 16 or 17. apparently, it was in my right breast and it was infected, but everything worked out with antibiotics, and i never faced a similar problem since. However, like most of you, my breasts get tender and fibroadenoma in my left breast gets swollen and more lumpy than usual just before my period. I have done multiple ultra sounds and they have shown that i have multiple fibroadenomas in both breasts.
ReplyDeleteyour stories made be embrace what i have in a way. i dont feel as alone as i used to. Yet i still don't know how to deal with it. Its just there, lumpy and unusual. i can feel it, as if im more sensitive in that area than i was before. My doctor told me that i shouldn't be sleeping on my chest (like i normally do), that in some way its a factor. I don't feel comfortable when i sleep anymore. im worried, and frankly i dont know of what. i was also told by my doctor that i could wear a sports bra when i sleep, to hold my breasts and not leave them loose, wandering left and right.
How do you girls think i should act upon this?
i never thought of having it removed. In fact, my doctors barely brought up this option. I don't want to make a big deal out of nothing. But is it a big deal to start with?
yes, i've had it for some time, but its now that i'm fully aware of it. most probably because its grown or is showing more.
Thank you all for sharing and helping out. I really appreciate it, and i hope that in whatever i've written, that i've helped you guys understand my perspective. Im also open to any question or suggestion.