This is my personal experience, and this is not intended to be taken as medical advice or to assume that your experience would be exactly the same. If you have concerns for your health, please seek professional medical attention.
In October of last year I discovered a lump in my breast. One could argue that all breasts are just lump sacks, and I’d have a hard time disagreeing with that, but this was a new and hard knot.
Upon initial discovery, my heart dropped. “I don’t think that’s supposed to be there.” I couldn’t help but wonder if this moment would go down in my personal history as “that” moment that changed the course of my life.
It will probably sound silly to you, but I hoped that it was a fluke and it would be gone the following day. For the first time ever, I hoped I had a clogged duct.
The next day, it was still there.
We have all heard that we should regularly do self breast exams and how to do them, but what’s step B when your self exam doesn’t go as you hoped?
Step B was making an appointment with my midwife. For you that may be your general practitioner, family doctor, etc.
I want to be very transparent on what my costs were, because when I was looking I couldn’t find that information, and it really frustrated me. Of course every office and area has different rates. My fee was with an insurance policy, but I had not met our deductible so I paid out of pocket for everything.
The initial appointment:
I paid $100 to meet with my midwife, and she spent about 45 minutes with me. I already go to her because I love her, and her care in these circumstances was no different than what I have come to expect from her. She was very respectful and calming. She let me know what part of my breast she would look at and how she would be inspecting it, and she asked before she touched anything. She also sat with me and asked me how my mental health had been recently; I had been having anxiety which I think would only be natural in this situation. She reassured me that what she felt didn’t raise a lot of suspicion, but since she couldn’t be sure, the best thing to do would be to have an ultrasound of that breast. I wasn’t too alarmed by that because I had already assumed we would need an ultrasound to confirm that it was benign, and in the U.S.of A., you need a referral to get one of those.
I learned that typically if the lump can be moved around, or if you can pinch it between your fingers, those could be signs that it’s benign. Cancerous tumors are typically rooted, and stay in place. Malignant tumors aren’t typically painful either, and I was having some discomfort in the area around my lump, especially before or during my period. According to cancer.org, other early signs of breast cancer are inverted nipples, the skin becoming bumpy or “orange peeling” which is enlarged pores that look like orange skin. Bloody discharge from the nipple, redness, or swollen lymph nodes.
As hopeful as I was that it would be okay, I still felt very distracted, and unable to plan very far into the future not knowing whether or not I might be needing treatment, and I had a lot of anxiety. I reminded myself to control the things that I could, like thinking positively. I tried to prepare myself as best I could that even if the worst happened, I could get through it one day at a time.
Even though I would be paying out of pocket, I wanted to go to a place where I was in-network so I would be paying toward my in-network deductible. I asked over the phone what I would owe the day of the appointment, but I never could get a straight answer. Upon my arrival for my appointment I was informed that I owed $368.00 for the ultrasound.
The tech had me raise my arm over my head, and show her the area where the lump was. She felt around that side of the breast for awhile, and took several pictures.
She then announced that she was going to show the images to the radiologist and stepped out of the room. I laid there with my gel covered boob out and tried to not be suspicious of her abruptly leaving the room.
When she returned, she asked to take more images and in a broader area. She moved her wand under my armpit, along my side and around the breast. I was freaking out a bit at this point.
She left the room again, and when she came back she said the doctor advised for me to have a mammogram. “Like, right now?” “Yes, we can do it now.” “Ummmm, okay.”
I was planning on leaving here with answers, so I would do whatever it takes. For the record, I was totally freaked now. I still managed to ask how much it would cost…I care about those things! No one could give me an exact number, but they said “around $350.” Shortly after I was given paperwork that highly recommended the 3D mammo to get more accurate answers, so I paid more for that. I received a bill for $480, they also had payment plan options.
I am in the under 30’s club, so this was going to be my very first mammo. It wasn’t super-fun times, but it also wasn’t as bad as I imagined it could be. The most frustrating part was that I was lactating, and they were focusing on a concentrated area so they really went to town, squeezing the lower right half of my boob. My poor boobie!
Afterwards, I got dressed and waited in the hall for my results. Thankfully, they were going to give the results that same day. The downside was sitting in a hall with other nervous people for a very long 30 minutes.
Remember this, when the doctor comes around the corner with your results, hit record on your phone. The combination of being nervous and not understanding most medical terms just makes it difficult to clearly recall the conversation.
I didn’t hit record, and now all I can recall is a mixed bag of reassurance, and uncertainty. “It doesn’t seem malignant” (whooo hooo hooray yippeeee! Oh wait, he’s still talking) “but I am just not sure, it’s doing this odd shadowing thing. There are no defined edges. I just don’t know what it is. I suggest having it biopsided. Unfortunately, we don’t do those here anymore. Merry Christmas.”
Oh, did I mention it was now the day before Christmas Eve? The doctor has also mentioned that it could be a fibroadenoma.
From my Googling, I had self-diagnosed a fibroadenoma, but of course I wanted to see a doctor to be certain. Fibroadenomas and cyst are actually very common, and usually harmless. Sometimes women will elect to have a surgery because the fibroadenoma can be large and irritating, but if it is not bothering you it can be left alone.
I wanted to feel relief over hearing them saying that it didn’t seem malignant, but the fact that he just didn’t know still left me with a lot of concern. I wanted to push it out of my mind until after the holiday, and then I could schedule a biopsy.
I called around San Antonio to inquire about availability and pricing for a biopsy. From what I was quoted, there was about a thousand dollar variances between different offices. The offices I spoke to also couldn’t tell me what the pathology would cost since that would be done in a hospital. I again chose to go somewhere that was in-network. It took awhile for them to get my images from the imaging center, approve me for a biopsy, and call to schedule an appointment. It was the end of January before I had an appointment. If you’re keeping track, this was drawn out for about three months. It’s frustrating that it wasn’t taken care of quickly. I’ll admit that I did not schedule the ultrasound as hastily as I could have, but the rest was just waiting for them to give me an available appointment time.
Since I was breastfeeding, one of my concerns of having the biopsy was if it would affect my ability to nurse. I could never get a straight answer, some saying that I should pump and dump for 12 hours on the side that was biopsied because there may be bloody discharge from the nipple. Others said it would be fine either way. They use local numbing medicine that wouldn’t be an issue. Having discharge is pretty rare, and thankfully I was able to breastfeed without any issues before and after my biopsy.
However, they did fail to tell me until after my biopsy that I should not lift anything over 5 lbs. for 24 hours. Considering that I am a SAHM who’s nursing and who’s husband was working out of town, I would have loved to know that beforehand. The point of that is to cause less stress/pulling so you will heal quickly and without complications. I obviously had to lift more than 5 lbs, but I tried to be cautious.
The biopsy itself is not complicated and is essentially painless. The worst part by far is the waiting, and the not knowing. A sweet friend of mine offered to come with me to the biopsy and it was so comforting to visit with her while I waited (for about an hour) prior to my biopsy. If you can have someone go with you, it’s so helpful.
The only uncomfortable part of the biopsy was when they numbed me, and it feels exactly like when they numb you at the dentist. About 5 second of pinching, and then nothing! Then they stick a hollow needle into the lump, and take samples. They will take 3-5 samples, and every time they take one it sounds like a staple gun going off. Afterwards, they will place a tiny surgical grade stainless steel “marker” (it looks like a metal grain of rice) in the lump for future “lump referencing.”
Upon leaving, I owed $867. I still expected to receive a bill for the pathology, but months later I haven’t received it. I’m not going to hunt it down. Maybe one day it will come. Like my bill, the pathology results also either took awhile to come, or they failed to call my midwife when the results came in. I was told it would be 5-7 business days, and I waited 15.
On the day of, I was able to have a pretty normal day. The exceptions were not lifting anything heavy, and definitely no jogging. I wore a loose fit (no underwire, no padding) bra and iced my boob on and off.
Day two some minimal bruising began to show. I took the larger bandage off.
Day four bruising and tenderness peaked:
At two weeks the tape didn’t come off completely on its own but it was starting to peel off so I removed it.
Now I have a very small pink scar where the needle was inserted. Any tenderness went away after about a month.
My results were (drumroll please): Xanthogranulomatous––inflammation of the breast.
I am so very thankful and relieved to report that it is harmless, and no treatment is needed. It’s essentially foamy tissue, and the reason why there were no “defined” edges in the ultrasound. According to Google, this is pretty uncommon, and even more rare to have it occur in the breast.
So I have one very expensive foamy boob. It took me approximately 5 months and $1,815 to get a diagnosis.
If you’re going through this process right now, I wish I could come hug you. I know what an uncertain and terrifying time it is. I am so sorry you’re dealing with all the worries this type of thing can entail. I didn’t want to tell anyone at first what I was worried about, because I didn’t want to sound silly or concern others. When I did tell a few close friends, having them check in on my emotional state and be there for me was so encouraging. I also told myself “I don’t have cancer unless someone tells me I have cancer. Until then, I can be healthy and happy.” I’m sending you love and wishes for good health.