Have you had a Benign Mass Removed?

Daisey4522 · November 2014

Hello,

My name is Ginger and I am 28 years old. I have what was found to be a benign mass measuring over 8 cm in my right breast. I have met with a Breast Surgeon and they recommend I have the mass removed immediately. Because of the size of the mass, I will require reconstruction surgery. Once they remove the mass I will be approximately 2 sizes smaller in one breast.

Has anyone had surgery of a benign mass? Did you have any reconstruction? What of the surger(ies) did your insurance cover?

I am considering having the other breast reduced to match (I currently have 36 DD). The reconstruction surgeon recommended an implant, but I'm not sure if I want to deal with implant(s) the rest of my life. My main concern is I want symmetry and it looks like I'm going to have to pay thousands of dollars for the reconstruction out of my own pocket. Will insurance pay to at least make the one that they are removing the large mass from not appear disfigured? The mass is directly under my nipple...

I would GREATLY appreciate anyone who would share their experience even if you did not have reconstruction. Thank you!

marie345356 · November 2014

ive had only a 1cm benign mass removed recently. I was the one who kinda pushed to have it removed. It was only a few days ago so I can't tell you too much but it looks fine. Mine again is only 1cm so I wasn't expecting disfigurement. It was directly under the areola and he cut around it to mask the scar.

Surgery was easy. Just a bit sore a few days later. was done in under half an hour.

I'm also from Canada so I can't help for the insurance part, sorry.

Janet456 · November 2014

I had a 5cm by 3cm benign mass removed. I can only assume that normal breast tissue has filled in the gap because it hardly notices and I didn't have any reconstruction. x

Daisey4522 · November 2014

Thank you so much Marie & Janet! The more stories I can hear about the surgery the better!

Marie - When do they want to see you again? My mass is also under the areola so they plan to cut around it to mask the scaring as well.

Janet - A 5cm X 3cm mass sounds significant. It did not leave you two different sizes?? Also of the breast that they removed the mass from, isn't the breast now a little higher? I am only 28 yrs old so I do not have much "sag" yet, but I was told that when they do the surgery on the breast that has a mass it will make the breast sit a little higher... therefore I must have surgery on the other breast to match the size & lift of the other breast.

Did either of you have to have a drain? I was told I will need a drain.

Janet456 · November 2014

It's barely noticeable. If I was being very critical of myself I would say one is a tiny, tiny bit higher now and just ever so very slightly smaller, but I honestly don't notice and nobody else ever would either.

I was told to expect a drain but I woke up without one. I think I got quite lucky all round really. xxx

Daisey4522 · November 2014

Oh that's great to hear! Could you feel the mass? I can feel mine.. it is huge... Also, it's right under the areola right up against the nipple so I think that's why I'm going to need so much reconstruction. I'm getting a second opinion from some very experienced surgeons but I will have to wait until Dec 18 for my appt.

How was your recovery? How did you feel? How soon did you have to go back to the doctors after the surgery?

Janet456 · November 2014

No I didn't feel it, it was picked up on my first screening mammogram, I think it might have been quite deep and I had never done a self exam. That's changed now of course.

I had my op at about 8am and was back home, drain free by 4pm, up and about the next day with no pain. My follow up appointment was two weeks later. I had a very easy time of it really, for which I am thankful.

Keep us posted on how you get on xx

Blessings2011 · November 2014

I had a very large benign fibroadenoma removed when I was 18 years old. I'd had it forever... even passed medical exams with it, and in my perfect teenage denial, figured that it wasn't anything serious.

But a doctor in the college infirmary found it, and I had to have it removed. As I recall, it was about the size of a walnut. Not sure how many ccs that is, but it was pretty big.

I had a small scar, but no significant reduction in size between breasts. Keep in mind that this was 1968, so there were very few choices then.

rakz105 · November 2014

Hi Daisy,

I hope you are well now. I had a benign cyst removed from my left breast whenn I was in my lateb20s. It never recurred. Just be positive that all things will work well.

Stay healthy and strong,

Rakz

http://www.everlastingfootprint.com/

Daisey4522 · November 2014

Hi Janet,

Thanks so much for the information! It does sound like your surgery & recovery went really well! I think it really helps that the mass was deeper withing your breast. Mine is right on the surface up against the nipple so that's why I need reconstruction.

Can you tell me more about the drain? So the drain is only in there while you are in the hospital? The reconstruction surgeon made it sound like I will go home with the drain and it will be pulled out later in her office. Did it hurt?

Ginger

Daisey4522 · November 2014

Thank you so much Blessings and Rakz! So it sounds likes with your surgeries you did not need any reconstruction. I am assuming your insurance covered the mass removal, am I correct?

sarahjane7374 · November 2014

Before I ended up having a PBMX, I had several benign masses removed - all between 2 and 5 cm. Surprisingly, I didn't even notice the difference in my breast afterwards, and did not need reconstruction. With my PBMX, I had 4 drains - 2 on each side. They stayed in for 6 days post surgery and didn't hurt at all. They are a pain in the ass to deal with though. When pulled out, it just felt kind of weird, but again - no pain. After my exchange surgery (tissue expanders to implants) I had 2 drains. Same deal - in for about a week, no pain.

Best of luck to you Ginger.

Daisey4522 · November 2014

Hi SarahJane,

Thanks for sharing your experience. Were any of your masses close to the surface? Or were they all deep within your breast?

I'm not even sure what drains are... I mean I guess it is to drain fluids so it does not build up. Do you drain them yourself or they do it at the doctor office?

Did your insurance cover everything for your benign mass removal?

I'm sorry for everything you have gone through!

Thanks,
Ginger

sarahjane7374 · November 2014

I had small breasts, so the masses took up most of it, and had increased the size of my breast by 3 cup sizes. There was one that was in the upper outer region that seemed close to the surface, the rest were scattered throughout. The drains are basically tubes that go into your body, with bulbs on the end. The bulbs get squeezed to create suction, which helps drain the excess fluid. If you google Jackson Pratt Drain, you'll see what they look like. They look and sound worse than they are, really. Periodically you'll need to empty them, and your doctor will have you record the amount of fluid they contain. The drains are removed when the output drops below a certain level daily, and the removal is done at the doctor's office.

My insurance did cover all costs related to my surgeries, including the benign mass removals and the reconstruction following my PBMX.

Hope everything goes well for you. Take care of yourself

Daisey4522 · November 2014

Sarah Jane, Thank you so much! I have a much clearer picture of what the drain will be like. What does PBMX stand for? I tried googling it the first time you mentioned it but I cannot find out what it stands for.

Are you saying that the benign masses are what increased you by 3 cup sizes? If that's so, then wouldn't you be uneven in size after the mass removal and require reconstruction?

sarahjane7374 · November 2014

PBMX = prophylactic bilateral mastectomy. Meaning, I did not have a cancer diagnosis, my surgery was preventative.

Yeah, my benign masses increased me by 3 cup sizes. The ones I had removed were just the tip of the iceberg for me - I had an MRI afterwards which revealed several more, including one that was 9 cm. I was extremely uneven, due to the fact that the majority of the masses were on my left side, although my right was starting to catch up towards the end. I was growing them left and right, every time I had imaging done, there were more. Masses were obscuring masses. I was full of 'em. That's what led me to my eventual decision to go with PBMX. My doctor said there was no way he'd be able to surgically remove everything I had in there and leave me with any kind of acceptable cosmetic result, and that if a 9 cm mass had been "hiding", then what the heck else was in there....

But - that's not what you have going on. You just have a mass that needs to come out. Hopefully you can straighten out the insurance issues, move forward, and put all this behind you soon.

Best,

Sarah

Daisey4522 · November 2014

As hard as PBMX must be, it must be nice to know that you do not have to worry about getting breast cancer!

I have 2 lumps in my left breast that they are not going to remove and the one 8 cm mass in my right breast. I'm 28 yrs old with very dense breasts. I have not had an MRI, only sonograms and Mammograms, so it's possible they are not catching everything in my breasts.

Why do you think insurance paid for the PBMX & Reconstruction? Did you test positive for BRACA or something? My mother passed away from Breast cancer early on (Diagnosed at age 40 -- had stage IV already and passed away 18 months later). I tested negative for BRACA.

sarahjane7374 · November 2014

I have not been BRCA tested. My sister was diagnosed with IDC at age 28, and she tested negative. Based on that, my GC said testing for me was not necessary. The reason stated by my surgeon for the medical necessity of my PBMX was "multiple bilateral rapid growth masses". Initially they declined coverage. He had to do a peer-to-peer call with the doctor for Blue Cross to get the surgery approved. And federal law requires insurers to cover all stages of reconstruction if they cover the mastectomy, so there was no fight there.

I was 43 when I had my surgery, and also had extremely dense (>75%) breasts, which made imaging difficult even before all my issues started.

I am very sorry to hear about your mother. Have you had full genetic counseling in connection with your BRCA testing? Reason I ask is that my sister was also tested for P53 mutation, which can be associated with early onset breast cancers (before age 50).

Daisey4522 · November 2014

Oh yes, that makes sense.

It sounds like you had a good doctor to fight for you.

It's open enrollment right now at my work and I was considering switching to BlueCross BlueShield... but there are a bunch of other options such as CareFirst that is a little more expensive per month but have lower fees for outpatient, tests, etc.

Do you mind me asking you if you remember a ballpark estimate of how much in copays you had to pay for the surgery of the benign masses (before the PBMX)? Where there many tests that they had to do pre or post op you had to pay copays for? How much do you have to pay for your MRI?

Do you still have BlueCross? Would you recommend them?

Thank you so much again. I can not tell you how big of a help you have been!

sarahjane7374 · November 2014

I have a PPO with Blue Cross MA & I paid $0 in copays for anything related to my tests and surgeries. They covered everything: office visits, tests, labs, pathology, imaging, MRI, surgery, anesthesia, genetic counseling....all of it. I paid $0 out of pocket.

I still have Blue Cross, and have had them for almost 27 years. I would highly recommend them. Until they declined my surgery, I'd never had a problem with them at all. I felt like that was even handled well, and my doctor agreed. He said he's had to deal with much worse.

Good luck

sarahjane7374 · November 2014

Just another thought on reconstruction - have you talked to your plastic surgeon about fat grafting? You don't seem thrilled with the prospect of an implant, and fat grafting can sometimes be used to "fill in the gaps" so to speak. Whether it's an option for you will depend on your specifics obviously, but maybe something to look into.

Daisey4522 · November 2014

I am a Federal Employee and I have 2 options for BlueCross BlueShield. Basic and Standard. The Standard looks like PPO but I was leaning away from that because it says for outpatient services I will pay 15%, but I'm not sure how much that would be. With the Basic option It says $150/$200 for the Surgical Services, but then I noticed something that said 30% of Drugs and supplies... So I wonder if that is in connection with the Surgery. I thought I would just pay $200 for the surgery but maybe I also have to pay 30% of a portion of it. Not sure. I have to decide by next week.

I am guessing you do not have either of those options? Yours must be a different BlueCross plan? Otherwise I'd go with whatever option you have. It sounds like it's really good!

Daisey4522 · November 2014

I did think about using some of my own tissue to fill in the gap! That would be my first choice since I would be able to leave my other breast alone, keep my natural size, and not have to deal with an implant. I asked the first Breast Surgeon about it but she said no.. but that she is not familiar with all of the options (she is not very experienced). I have an appointment in December with a well experienced breast surgeon and reconstruction surgeon (who work together) and I will ask again at that time.

sarahjane7374 · November 2014

I work in the private sector, so there is probably a different plan offering than what you have available. I'm not sure how to interpret the costs you may be subject to - so much depends on the coding applied to the claim. Is there a number you can call at Blue Cross to ask questions, or maybe someone from HR that can go through all the different options with you?

It's good that you are seeing a PS who works with your BS. I had the same type of arrangement, and it makes a huge difference that they are familiar with each other, and have an established communication channel. My PS usually knows all about my most recent BS visit before I even have a chance to tell him. It's nice that they exchange information 'behind the scenes' and are more often than not on the same page and in agreement about what the next steps should be.

I had some fat grafting done with my exchange. He lipo'd out some belly fat and injected it around the implant on my right side to fill in some ripples and smooth out a ridge. It wasn't a big deal at all - a little soreness at the donor site - up top I didn't feel a thing. I'm thinking about a revision soon to tighten up the skin and address some additional rippling that has started to bother me a little bit. May try and sacrifice some more belly fat for that mission, if my PS thinks it's doable.

Daisey4522 · November 2014

Yes, I will be calling the insurance company to ask questions, but at this point I do not know all of the details of my surgery. I will not know until after my Dec appointment and unfortunately I need to choose my insurance company by next week.

It's just great to hear what type of options there are, because I've never had to deal with something like this so I'm completely clueless.

Thanks so much for everything you've been a great help! The more experirences with the surgery and/or insurance issues I can hear the better!

Daisey4522 · January 2015

I wanted to update this discussion thread (and my other threads) in case it helps someone, because I know reading others' experiences really helped me.

I ended up seeing the top surgeon for a second opinion in December. WOW! That was the best decision I ever made! My biggest advice to anyone out there is be your own advocate and do your research! I always look at reviews before making any decision, whether it is to go to a restaurant or buy a particular item, so why not do this with the most important thing, your health?

This breast surgeon looked closely at my mammogram and sonogram images and said that he did not believe it was one 8 cm mass, but that it was actually 2 masses (granted, they are still large) but he thought he could take less mass from my breast. The first breast surgeon and 2 reconstruction surgeons all told me that I would lose 2+ cup sizes or about 40% of my breast after they removed the mass(es)! This surgeon told me that since I was young, he thought I would heal well. He said with his experience what happens is he removes the mass(es), it fill with fluid and then turns into scar tissue so I should look the same. I was very skeptical because the mass(es) were so large that I could easily feel them, right near the surface of my skin, and this completely went against what the other surgeons said. I knew he was a top surgeon and had many years of experience so I decided to trust him. He said if I was not happy after the surgery we could involve the reconstruction surgeon at that point, and that insurance WOULD pay for it without a problem, unlike what the first inexperienced reconstruction surgeon told me. I also saw a second reconstruction surgeon (before seeing this breast surgeon) and he also said that insurance WOULD pay for reconstruction!

I had the surgery a week ago and everything turned out great! I was completely shocked that I look exactly the same as I did before the surgery! This surgeon was right, it was actually 2 large masses, not one. The incision was made around the top of my areola and is about 1.5 inches. I think because of the location of the incision, you will not be able to notice much if any scaring. They just used surgical glue (no stitches) and everything looks great.

I have some swelling, bruising, and pain, but I expected this all and I honestly don't feel any worse than I did when I got the Stereotactic biopsy. My right nipple has been slightly inverted/retracted for the past few years but since the surgery it has become very inverted. It may be due to swelling and could resolve on it's own. I have a follow up appointment in another week.

Also, I got the final pathology results today and both masses are benign (Nodular Adenosis). What a relief!

I have one more piece of advice that may help someone. If you are getting a biopsy or a breast surgery where they ask you to wear a tight fitted bra, sports bra, or ace bandage after the surgery, I found a bra that works so well! It really helped keep my pain down by applying the right amount of pressure. It's called "Knockout by victoria's secret front-close sports bra". It has a double closure in the front. It would be so difficult to slide a tight sports bra over your head right after a biopsy or surgery, and a back closure bra would also be more difficult that is why I was so happy when I found this front closure sports bra. The first closure is like a regular bra that snaps in the front, then another layer zips in the front over it. They also sell one that has only the zip layer, but I found that it was harder to hold the fabric together to zip without having the inside layer option.

Good luck to you all! This place has been a really great support for me and I hope it is for you too no matter what the outcome of your test results, surgery, etc… that have something for everyone here and I'm really appreciative.

roadrash · January 2015

Hi,

I read your post and I am so happy that you received a great report! YAY! I hope your breast issues are over and thank you for the tip on the bra. I have been buying mastectomy bras that are super expensive and UGLY. I googled the knock out bra and they are cute.

Daisey4522 · February 2015

Hi roadrash,

Sorry for the late reply, I did not have email notifications turned on for this string for some reason so I did not see this message until now.

Unfortunately my breast issues are not completely over because my breast filled up with an enourmous amount of fluid and then on Saturday it started pouring (literally!) out of the incision site. It was the most tramatizing thing I have ever experienced! I was convinced I would have to be rushed to the ER, but I called my Doctor and he returned my call quickly from home. He told me that it would be okay and to just use gauze to soak up the fluid, then call back on Monday. I called today and they are having me come in tomorrow morning since there is still some fluid left. Luckily, it does not look infected, but they mentioned that they might drain it. I really don't want to have it drained because in my case, they removed 2 very large masses right next to each other (5.6 cm & 4 cm). I was told by another surgeon that I would lose 2 cup sizes and another said I'd lose 40% of my breast. I did a lot of research finding the best Breast surgeon and the Breast Surgeon I went with told me that since I'm young he thought I would be completely fine (and so far he seems to be right, my size looks the same!). He said that fluid would fill the cavity and then turn into scar tissue, and so essentially "fluid is our friend", thus why I am skeptical to let them drain the fluid. The appointment is with a nurse tomorrow, not with my Surgeon. I really wish he could see it and tell his opinion.

Wish me luck tomorrow!

LaurenElizabeth · February 2015

From the age of 17, I had 8 incisional biopsies and several core needle biopsies. I had one Breast MRI, which was torture due to my anxiety and bad back/knee/shoulder. In Oct 2013, I bit the bullet and took the BRCA test after my uncle passed from Prostate cancer. My mother, grandmother, great aunt and 2nd cousins had breast cancer. All but my mother died from BC. My mother died of Ovarian Cancer.

I was diagnosed as BRCA 2 in November of 2013. After knee replacement in November 2013 and 6 week recovery, I began searching out a gynecologist oncologist to do the removal of my tube and ovaries (I had a LSH to remove my uterus in 2006). I had the oomphrectomy and salpingectomy in May 2014 followed by a prophylactic mastectomy with sentinel node testing in June 2014. I wanted to reconstruct using the Diep procedure but my BMI made it too risky. So I had to go with implants. I just had final fat grafting, nipple and touch-ups done yesterday.

Due to the new knowledge of my BRCA 2 status, my original breast surgeon wanted another MRI. Unfortunately, some meds hurt my kidney function and the radiologist said MRI was out. So we did an ultrasound and it showed so much junk, it was impossible to read. So we took the 5 most worrisome areas and had core needle biospies. I was shot eight times, which is crazy, but I didn't want to come back (a 112 mile drive). I was bruised for a month. This is NOT usual. In the end, I decided to get it all out. I'm on the back side of it now and I'm relieved I didn't wait until I had cancer. The return rate for BRCA 2 cancer is very high.

As I said, I had 8 incisional biopsies, all benign. We tried hard to avoid the last three. Prior to my BRCA diagnosis, we were watching two lumps that looked benign. I always saw top tier breast specialists after the third or fourth time.

I had one removed that was large and embedded in my chest wall. I could feel a slight indentation but it really didn't show. All but one was reached using a cut around the areola. This lead to my not keeping my nipple during reconstruction as the blood supply was compromised in that area.

The important thing is the surgeon get good margins. That's why I did my homework and went to the best breast surgeons in my plan, even if I had to travel. They are usually done outpatient and I have been known to go to the movies and dinner that night.

I hit my $3000 out of pocket in 2014. It came to $3500 as office visit co-pays aren't included under my plan. All my surgeries have been covered, except for co-pays and deductibles.

I'm glad I finally took the BRCA test as it was time. I picked a year where my out of pocket costs were already paid due to the knee replacement. So it cost nothing out of pocket. It is a relief to know what I was fairly sure was the case. I do not regret being proactive, although it has been a trial.

Hope someone can benefit from my journey.

Daisey4522 · February 2015

Wow! What a journey Lauren! Thanks so much for sharing! It's so good that you are so on top of your health!

My mother passed away of Breast cancer at age 42 (she was diagnosed with stage IV at age 41!) so I also had the BRACA Test, but mine came back negative.

Also, when I was looking up reconstruction surgery I had decided to do the Diep Flap (my reconstruction surgeon thought I'd make a good candidate) but then my Breast surgeon said it was not necessary since I was so young.

Just an update on my situation, it turns out that all of the seroma (fluid within my breast) became highly infected. It's thick yellow and has a strong terrible odor. I'm on antibiotics and it has been draining through the incision site on it's own. Very disgusting... It has not leaked since Saturday morning but I can feel that there is still more fluid left inside. I'm wondering if the antibiotics are going to be enough to take care of it without having it drained in teh doctor's office (they do not recommend at this point). They want me to call in tomorrow (monday) so we will see what they say then.

Moderators · February 2015

Daisey, so glad to hear of your biopsy results, but sorry to hear of your seroma and infection.

Look after yourself and we hope the antibiotiocs start to kick the infection.

The Mods

Have you had a Benign Mass Removed?

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