Most of you may be here because you follow my blog, others may have Googled Fibrocystic Breast Disease looking for answers.
The first thing I want to tell those of you who are here from a search is not to worry. While I know you are suffering, it is not cancer, and there is help.
Unfortunately there is no cure for Fibrocystic Breast Disease, but there are things you can do to ease the pain and suffering.
I want to share with everyone out there going through this my own story.
While I tell my story I want to be sure that everyone understands I am in no way comparing Fibrocystic Breast Disease to cancer, nor am I trying to make it sound like as big of a health issue as cancer. I am certainly not being insensitive to those who have breast cancer, as it runs in my family on both sides. I have many family members who have had mastectomies, and I would never compare one disease to the other.
My story begins about 3 months ago. I was showering and noticed a new lump in my left breast. Finding a new lump was nothing new to me. I have multiple cysts in my breasts that come and go. I have had two 3D mammograms in this past year, as well as three ultrasounds. This is status quo for me.
With each new ultrasound I lay there listening to the comments from the tech “oh my you have so many cysts I can’t even count them all!” or “I am having a difficult time measuring this cyst, it is right next to a cluster of cysts”.
Disheartening indeed as I lay there thinking, “with so many cysts how could you even spot a cancerous tumor?”
Yes I do worry about developing breast cancer, due to it running in my family. More so I worry that cancer could be missed due to my massive amount of cysts!
Regardless, I have always left the appointments with a clean bill of health.
I never really experienced much discomfort, or pain from my cysts, other than knowing they were there, and feeling them when I washed. Although emotionally it always was in the back of my mind if this lump, or that lump, was the same one I had felt before, already had checked out. It is difficult to determine which lumps are new and which are the same ol lumps when you have so many! I felt like I needed to cartography my breasts!
Anyway about three months ago I did feel a new lump. I knew it was a new lump because of its massive size, and because it hurt to touch.
I waited about a month before calling my doctor because as breast lumps go, with me anyway, they come and go. I did not want to jump the gun. I had already had multiple mammograms, multiple ultrasounds, and to be honest, I was worried about any radiation from them, not to mention what my insurance company would say!
After a month, the lump was not only still there, but it was larger, and more painful! At this point I was experiencing a daily pain level of 6, all day every day. Every day I also had shooting pains at a pain level of 8.
I made an appointment with my primary care doctor. I could have just scheduled an appointment for a mammogram or ultrasound myself, however since I had had more than one in a year I figured if I had my primary care doctor’s referral I had better chances of insurance paying for another. I am still waiting to find out if that is the case or not. I could be getting a huge bill. I will update you all on that.
So yes indeed I got my referral, with an agreement that I did need to be seen at the Women’s Breast Center. I was seen for another ultrasound.
Once again, I heard the same old story, that I had so many cysts they could not count them all. They did however tell me the good news that it was not cancer, just massive cyst.
This time the doctor did not even come in to see me to explain cysts. I guess he figured I knew by now. I was told to contact my primary care doctor to see how, and if he wanted to treat my cyst. They did not mention any specific type of treatment he may offer which left me wondering.
To be honest, I kind of felt left without information. I was a little pissed off.
I made a new appointment with my primary care doctor. He then laid down my options.
Actually, I need to go back a little, as it is important you understand my frame of mind by the time I got back into my primary care doctor. It was a full month in between my ultrasound and seeing my primary. In that time, my pain had increased significantly.
One night, while trying to get into my pajamas, taking off my bra, I literally doubled over in pain. The weight of my breasts had doubled at least. I literally felt as if my breasts, especially my left, weighed 100 pounds! The lump had taken on a life of it’s own. My husband could visually see the swelling, and my breast was bruised. My skin was tight, and you could see redness through the thinning skin.
This time the pain was so intense that I did not even make a yelp, or scream. I couldn’t as I could not breath. The pain knocked the breath out of me and I doubled over on the bed.
For the next couple of weeks after , while waiting to see my primary care doctor, I had to shower in a bra. Yes I should have used a bathing suit top, my husband and I both laugh about this after the fact. I just simply was not in the frame of mind to think of it, nor did I want to take of my bra to put a swim top on!
When I took off the wet bra, I needed my husband’s help. I had to hold my breasts steady while he helped me get out of the wet one into a dry one. It was ridiculous!
So as you can imagine by the time I got to my doctor for my “options” I was sick and tired of feeling the way I did. Not only was I suffering and in pain, but I was feeling really lethargic from the pain. It was as if I had the flu and had no energy left in me to do anything. I worked as little as I could get away with, laid on the sofa most of the time, and was served what I needed by my husband when he was home.
The experience gave me a really enlightened perspective of people who have pain conditions like fibromyalgia, or like my daughter has from her cerebral palsy. Granted, I always had respect, and sympathy for what my daughter goes through, but until you have intense daily pain yourself, you just do not really know.
I did manage to keep up on my blog during this time, but each smile was forced, and I had to pull deep from my don’t quit nature to get things done.
Alas I was face to face with my doctor. I have to say I love my primary care doctor, he is great and takes all the time I need without rushing me.
He told me he could do an aspiration in the office but he did not have an ultrasound machine to guide the aspiration and he really did not want to do that considering the pain I was in.
Now if you are not yet convinced at my pain level at this point, I think you will understand when I tell you what I asked him. I asked him if they ( my breasts ) could be removed. At first he looked slightly shocked, but then he tilted his head to the side and looked like he understood why I asked him that. We went into a long conversation about family history of breast cancer. I was sitting there crying. From pain yes, but also explaining to him the mental torture of always worrying about breast cancer sneaking up. Always worried that if I did have a tumor the ultrasound person would not be able to see it through all the cysts! Fear and worry are also debilitating. Worry about too much radiation from mammograms and ultrasounds. Worry that my insurance company will stop paying for them. Fear that every time I feel a new lump I will have to make another breast exam appointment which always leads to a visit to the Women’s Breast Center! Worry that I will need to make a standing appointment with them! The list went on and on.
My doctor said he wanted me to talk to a specialist. He had a great surgeon that he admired very much, Dr. Hu ( sounds like “who” ). Yes the geek in me giggled. It felt good to laugh about something.
Luckily I was able to get into Dr. Hu three days later.
Yes we did discuss breast removal, very lightly. Dr. Hu explained that with Fibrocystic Breast Disease it was not as simple as it sounded. Also she said I would be trading one pain for another. She also talked about how my breasts would never feel the same, I would lose sensation. They may feel the same to my husband, but not to me.
Honestly, I did not, and I do not want my breasts removed. I just wanted peace of mind, not to worry about what-if’s. I also wanted not to be in pain.
We tabled the idea of removal. Dr. Hu had great confidence that aspiration was the answer. At least for now.
So we went forward and aspirated the cyst in my left breast.
Breast cyst aspiration is a simple procedure, done under local anesthetic injected under the skin of the breast. It was not very painful at all to have the anesthetic injected.
Dr. Hu used ultrasound to allow her to see where, and what, to aspirate.
Now I do not look when needles are being stuck into me. As a Type 1 Diabetic for 47 years, I am used to needles, but I like control, and really do not like to see someone else poking me. When I have blood drawn, or any type of injection, I look away.
It was a good thing I did! This is where I warn any of you going in for an aspiration… if you are squeamish, do not look! The needle and syringe used to do an aspiration is HUGE! My husband watched and said he could see into the needle hole! YIKES! No thank you!
I did not feel it though so do not worry it did not hurt. It did cause pressure, I felt that, but nothing more really until later in the aspiration but that was due to the way my cysts were formed.
You see, during this process Dr. Hu discovered that my large cyst, was not a large cyst! It was in fact a giant cluster of small cysts that were so tightly knit it appeared as one! This was not caught my the Women’s Breast Center! I am not sure why. I forgot to ask Dr. Hu why they may have failed to catch this.
She asked me if I wanted her to keep trying to get this one area that was giving her some trouble. She was worried she was hurting me or pushing it too far since this was my first aspiration. I think she was worried I would never come back again. I told her to give it another try at this one area. This is when it really began to hurt so Dr. Hu stopped.
You see, this troublesome area was an area of the cyst that did not want to give way to the needle. Every time Dr. Hu tried to poke it, it squirmed away from the needle, like a slippery, rubber, fluid filled ball.
After all was said and done, I was bandaged up, and ready to go, but Dr. Hu did pause. She started to tell me that if we found aspiration did not work for me she would talk to me more about removal!
WHAT? Ummm okay.
Things flipped a little.
Granted the aspiration had went 90% well, but I could tell she was more concerned since seeing the huge cyst cluster with her own ultrasound she performed. I could tell she was worried about that one area she could not penetrate easily.
She was opening up the potential future dialogue, just in case.
I was a little worried, but more so relieved that she was willing to see just how bad things were inside my breasts!
We only focused on the left breast at this appointment since that was the one causing me such excruciating pain but I have another appointment with her in one month. At this follow up we will see how my left breast is feeling, and address issues in the right, and again in the left if needed.
See, with aspiration, the cysts can fill back up with fluid. It is not necessarily a means to an end. It can be, but more often than not, it is not.
Only time will tell.
I will say that at the time of writing this, three days after aspiration, I feel 95% better!
The first night after aspiration I was sore, but mostly from the poking. I had a few bruises on my breast where it was injected.
So the breast was tender to say the least. That night it was difficult to tell if the pain was any better or not.
By the second night, I could tell I was no longer having the shooting pains that were at level 8, and the level 6 pain had reduced to a solid 4.
By the third day, I was feeling nothing more than a slight but of pain every now and then of at most a level 2.
By the third night, I was able to shower without a bra, with a pain level of 1 at most, and it feels so good to be almost completely pain free!
The huge cyst is now a very small lump, and yes I do feel pressure from it at times, but again only a level 1 or 2 pain now and then. I still have to be a little more aware of how I sleep, and keep my cats from jumping on my chest when I am laying down, but overall, I am very happy with aspiration!
I still have Fibrocystic Breast Disease, and I always will. I am still not sure of the long term outcome, but I will update as I go further into my experience.
For those of you going through this, there are some things I picked up along the way. Things from my own personal Google searches, and some info from Dr. Hu.
Keep in mind, when it comes to Fibrocystic Breast Disease, like many conditions, what works for one person may not work for another. More research needs to be done on FBD, and I hope that it is being done! These suggestions are not meant to be medical advice, and please ask your own doctor before trying anything, but some of these ideas may help.
10 Home Remedies For Fibrocystic Breast Disease
1. Aleve, or Advil – yes I know it sounds fairly elementary, but it can help.
2. Evening Primrose Capsules. This is one you absolutely want to check with your doctor as there can be negative side effects for some people!
3. Hot or cold compresses – better if you alternate hot and cold.
4. Wearing a bra at all times worked for me but some of my researched turned up that some women could not wear a bra without it hurting more!
5. Aspiration – obviously has worked for me so far.
6. Limiting or eliminating caffeine intake. This is highly debated. Some women say eliminating caffeine did nothing to help, others swear by eliminating caffeine. Every one is different. It is worth a try though!
7. Eliminating alcohol – same as above, works for some, not for others.
8. Vitamin E
9. Dandelion Leaf – While I never tried it for FBD I swear it removes warts!
10. Vitamin B – especially B6.
Again please be sure to check with your doctor before starting any home remedy.
There is nothing more frustrating than having a condition or disease that has no cure, no matter how serious it is, or not.
If you suffer from FBD please seek help, you do not have to suffer, or suffer alone! While the positive effects of my aspiration may be temporary, I would do it again, and again if I need to. At least this is how I feel right now.
If my feelings change, or I have new experiences to share, I will update you all.
I would love your comments! If you have FBD, or know someone who does, have an experience, or frustration to share, please comment below.
I love comments! Please join in discussion, ask questions, or leave tips for other readers. Comments truly are the driving force behind any blog as it helps the blogger to know what you, the reader want to see more of!