A year later, better informed - Still concerned

Anonymous · October 2018

actualhumanpotato · October 2018

Hi all - I'm sure you see a thousand posts like these every day, but I have to spew (for lack of a better word) my concerns to someone before I go insane. It's a bit long, so I apologize in advance.

I'm 28 years old and while not in the best of health, I haven't had any major issues (outside of an easily corrected case of hypothyroidism).

About a year ago, I noticed what I, at the time, called a large lump over my left breast. It felt firm and as if it were attached to the chest wall, but didn't hurt when touched/pressed. I had my Mom drive me to the local clinic (a prompt-care situation), where a nurse practitioner confirmed that she felt the lump, but couldn't really say much about what it was beyond scheduling me for an ultrasound at the nearby hospital that was in charge of the clinic.

Now, I should say that the hospital/clinic that I'd be usin up until this point was not the best and has a somewhat negative reputation among local residents / other medical professionals. However, it was the only option in the area as I am somewhat agoraphobic and could not manage the over 40 minute drive to a different medical group.

I went and got the ultrasound - but nothing showed up on the scan. Both the ultrasound tech and the head radiologist confirmed that they could feel the lump and advised that I push my GP for further testing - which I did. My GP balked at the idea initially, telling me that she didn't see anything on the scan and said she couldn't feel the swelling (which confused me since three other medical professionals could??), and said that the likelihood of it being anything serious at just 27 years old was monumentally slim. She told me to go home and sleep on it, but if I was still concerned in a few days, that she would order an MRI since that was the next step (honestly don't know why she never recommended a mammogram unless she just assumed my breasts would be too dense, idk). I called her the next day, hoping that it was nothing, but wanting to KNOW for sure. My GP backtracked, withdrew the offer for an MRI and only offered an x-ray after I began to cry, saying "I don't want you to feel like I'm dismissing your concerns - but that might just be how your tissue is!". If that's just how my tissue is, one would think I would have noticed the lump in the prior 27 years of life. Unsurprisingly, the x-ray didn't show anything, though in a twist of fate, the same tech who worked on my ultrasound was helping with the x-ray and asked if I learned anything further about the bump, surprised when I said I had not.

I let the lump go for about a year while I did the occasional bit of research on what it could be. I've since come to the point where I'm not honestly sure if it's a lump or if it's just thickening of the tissue/muscle; I honestly don't know how to tell the difference.

I moved in April to a new town and had to get a new doctor - one who is in a MUCH more highly regarded medical group. At my second visit with my new GP, I casually mentioned that I had this lump of some mild concern on my chest that was still not painful, but also told her that I had had the x-ray and ultrasound before which found nothing. She felt around my chest and immediately recommended that I get a breast ultrasound (after telling me about her own experience with delaying testing on a lump turned out to be breast cancer that was only diagnosed in april 2018 after going nearly 8 years between mammograms). Her words were "It might be nothing, but let's figure it out for sure", which was such a relief after my concerns were so rapidly dismissed by my previous physician. The ultrasound order states that it is for "breast lump on left side at 2 o'clock position", and also that if it is imaging/clinically indicated, that the lab can also perform a diagnostic mammogram, biopsy, aspiration, or ductogram.

I'm scheduled to go in for the ultrasound on November 7th

My question is this: Does anyone else have a lump between their collarbone and breast, rather than in their breast? What if the lump still doesn't show up on ultrasound? Am I just supposed to live with this concern forever?

actualhumanpotato · October 2018

I should also add that I've had genetic testing done for an unrelated colon issue (through Color Genomics) and it came back negative for the BRCA genes

Moderators · October 2018

actualhumanpotato, we are glad that you have found a medical group that is getting it looked at with and ultrasound so that you can hopefully get full clarity as to what it is. It is difficult to live with constant concern. Please keep us posted, and it sounds like you are in good hands.

actualhumanpotato · October 2018

As I told my doctor, I truly do hope it's nothing - but at this point, even if the ultrasound turned up normal again, I'd be pressing the doctor to see about getting the lump removed. Unnecessary? Maybe - but if I don't, I'm going to spend the foreseeable future monitoring this thing like crazy and constantly wondering if it's something that the ultrasounds have missed, etc. (and that's if it doesn't turn out to be some kind of cancer)

I probably wouldn't even be as concerned as I am - but my father had cancer several years ago. He reported symptoms that indicated growth/mets NUMEROUS times, ended up with Bell's Palsy (that the doctors tried to brush off, even though he looked as though he had had a stroke). It took MONTHS for a doctor to take him seriously, coincidentally his rheumatologist and not even his oncologist, and by then, his cancer had spread to the point where no treatment would have been effective.

On the off chance that this lump of mine IS something serious, I don't want doctor's to brush it off until it can't be fixed, y'know?

jilliankap · November 2018

I have had a lump in my left breast, up top, for a long time, it appeared out of nowhere. I have had mammograms, ultrasounds and have seen a respected breast surgeon. I was the same you can definitely feel it, but on ultrasound you can't really see it. Mine does occasionally hurt around the time of my monthly period, but I also have fibrocystic breasts, so it's more likely that. Anyway, all of my doctors and the surgeon have all said it is glandular tissue.

Recently (now 40) have had another mammogram and I was given a BiRad of 4B, I have to get a biopsy. I did ask the radiologist if the cluster of classifications was near the glandular tissue and she said, "surprisingly its in the same area of the breast" but confirmed "they are not at all related".

actualhumanpotato · November 2018

Well, the appointment was at 9 am this morning and I left feeling....well, a lot like I did when I walked in.

The radiologist only really moved the sonogram wand over the lump, rather than the entire breast (so I'm not sure you could even call that a breast ultrasound), said that she didn't see anything that would indicate swelling or lump - which I was 100% not surprised about, since the first ultrasound last year showed the exact same thing: Nothing.

She had the tech take me to another room, took two separate images of the area with the mammogram machine - and told me that those also showed nothing (and she was vaguely hesitant about even doing THAT because of my age and the fact that anyone under 40 tends to have denser breast tissue). The radiologist said she thinks it's just breast tissue, but admitted that she wasn't sure WHY it was forming the way it was, which didn't make me feel any better. She tried to suggest that no one had symmetrical breasts (which I didn't understand the tangent, as I am aware that breasts are frequently different sized, etc. and hadn't expressed any concern about the fact that one of my breast is larger/saggier than the other), that the lump might have been caused by as little as a 5 lbs weight gain or weight loss. The problem with that is that when I noticed the lump initially last year, I hadn't experienced any kind of weight gain or weight less; In fact, I've been steady in terms of weight for the last 1 1/2 - 2 years.

All in all, I'm not very happy with the second ultrasound/mammogram. Obviously, I'm glad they didn't find anything obvious - but the idea of living with a "Well, we THINK its this" with no definite answer for the foreseeable future scares the crap out of me. I think if my GP calls to check in, I might try to pursue some kind of further testing for my own piece of mind. Maybe it's overkill, but I know that until I know with any kind of certainty what is going on, I'm never going to feel truly at peace with the lump being on my body

Is that ridiculous? Am I being overdramatic in wanting further testing to know for sure?

djmammo · November 2018

actualhumanpotato

How big did the lump feel to you when you first found it?

How big does it feel now?

Any lumps deep in your arm pits?

actualhumanpotato · November 2018

@djmammo - it hasn’t changed in size from a year ago when I first noticed it. It extends from just beneath my collar bone to the top of my left breast, a bit egg shaped. There are no other lumps to be found on that side, in the armpit or otherwise

MexicoHeather · November 2018

There is a lymph node up in that area. I can feel mine. Are you rather skinny?

djmammo · November 2018

actualhumanpotato

Is it hard or soft?

actualhumanpotato · November 2018

@MexicoHeather - i haven't been skinny in a long time, LOL, but that was my thought as well. I know there are all sorts of lymph nodes in that area.

@djmammo - it feels hard for sure. It feels like a larger lump, instead of something like a smaller, perfectly round lump, if that makes sense

actualhumanpotato · November 2018

They've actually already uploaded the report online, figured I'd post it here as well

They did the sonogram, and took Left MLO and exaggerated craniocaudal views with the mammogram machine. It says that additional 3-D tomographic mammography was also obtained (Don't know what that was all about; I only remember her taking two pictures). They also apparently evaluated it with a Computer Aided Detection (CAD) system.

"The tissue density is heterogeneously dense, which may obscure small masses. No suspicious masses, calcifications, or other significant findings are seen. No mammographic finding is seen to account for superior left breast swelling and palpable lump. No mammographic or sonographic finding is seen to account for superior left breast swelling or reported palpable lump 2:00 position. ANy further management should be based on clinical assessment. There is no mammographic or targeted sonographic evidence of malignancy."

Towards the bottom of the report, it adds that I'm BI-RADS: 1 - negative.

Again, I'm glad that nothing serious was found - I really am. I just don't want to blindly accept the explination of "Well, we THINK it's just extra breast tissue", and run the risk of it actually being something serious - especially now that I know I apparently have dense breast tissue. I've seen too many "Horror" stories of women whose cancer was missed by ultrasound and mammogram to just take things at face value.

Peregrinelady · November 2018

I was misdiagnosed for 20 months after a negative ultrasound, so I would push for a MRI. Also, just because you were BRCA negative does not mean there isn’t something genetic going on in your family. What kind of cancer did your father have? Several are related to breast cancer. My father passed from pancreatic cancer and I didn’t think that pertained to me until genetic counseling. Please keep us posted.

actualhumanpotato · November 2018

That's one of my biggest concerns, to be honest. I don't want to brush this off and then discover months or years down the line that it WAS something that would have been easily treated if I had just pushed for answers. I'm hoping for the best, but want to be prepared for the worst, too.

My Dad had esophageal cancer, but there's plenty of history of various cancers on my Mom's side as well (Her dad had prostate cancer, her grandma had Lung and Skin Cancers).

djmammo · November 2018

actualhumanpotato

Has anyone suggested a cat scan of your chest? That this may not be related to your breast?

Also as a rule of thumb, most cancers get noticeably bigger in a year's time.

actualhumanpotato · November 2018

The first doctor I saw about this last year had initially said that a CT scan was the next step if the ultrasound had shown nothing, but ended up deciding to do just an x-ray instead (kept saying she was concerned about exposing me to too much radiation).

I sent a message to my GP this morning, so we'll see what she suggests and go from there.

djmammo · November 2018

AHP

What kind of X-ray? Chest? Ribs? Do you have that report

actualhumanpotato · November 2018

it was a chest X-ray; I don’t have the full report, but I remember the doctor telling me that it came back normal, didn’t show anything

actualhumanpotato · November 2018

The doctor has apparently been out sick for the past few weeks (She herself was just diagnosed with breast cancer in April), but the nurse practicioner eventually wrote back about my concerns.

At first, she was INCREDIBLY dismissive, including putting lump in quotation marks and saying things like it didn't show on the scans because it was probably a swollen lymph node that had decreased in size (even though the lump has been there for over a year and is still there today, same size it has always been) and told me that they'd just continue to monitor it with a follow-up mammogram in a year (which I figure would be followed up with another ultrasound since I have dense breasts, and that's the protocol they tend to use on my Mom, who also has dense breasts).

I told her that I still had lingering concerns and was told that she ordered a CT of the chest. Most of y'all seem to recommend using MRI - but would a CT scan be able to produce similar results?

djmammo · November 2018

actualhumanpotato

The CT would before your chest (thorax) not the breasts.

Has anyone of your docs discuss the fact that the lump you are feeling has not enlarged in a year's time?

Parrynd1 · November 2018

One of my tumors didn’t really show up on US or Mammogram and was only caught during an MRI because I had the first tumor already come out positive for BC. I also had a local recurrence with 2 lumps that were examined by 3 different breast oncologist who dismissed them. Those were doctors who this was their specialty. It’s something until you know it’s not anything to worry about. I ended up having an MRI guided biopsy for the second lump that they couldn’t get on imaging. Some BC can be aggressive so maybe ask if you’re life is worth that 40 minute drive if the care you are getting now doesn’t seem so concerned. I was 28 at diagnosis. Of course there’s many other things it could like a lipoma or maybe a cyst, but that doesn’t mean you shouldn’t be advocated for to find out by your doctors. They should want to know just as much as you and direct you to where you need to go to find out.

actualhumanpotato · November 2018

@djmammo - Not really. The tech who did my latest ultrasound said it was encouraging that it hadn't really changed size (which I agree, very encouraging), but that was the extent of it. I just want to know what the heck it is at this point; I don't care if it's a cyst, a swollen lymph node, just a random wild pattern of tissue. I just want to know with certainty that there isn't something lurking in the shadows that basic testing of ultrasound/mammograms are missing, y'know?

@Parrynd1 - That's pretty much my thought process. I am fully aware that I may be overreacting and it could very well be nothing at all (I would love nothing more than for this to just be my anxiety blowing things out of proportion), but as I initially told my GP, I'd rather be "that patient" than to sit back, do nothing, and wind up regretting my lack of persistence down the road. As far as young diagnosis, one of my brother's best friends during high school had three older sisters - and all three were diagnosed with BC in their early to mid 20's (all got tested after their Mom was diagnosed); I take the whole "it typically doesn't happen until this age!" thing with a grain of salt.

actualhumanpotato · November 2018

had my CT scan yesterday (boy, they aren’t kidding about the feeling caused by the contrast LOL), doctor called today and said she thinks everything looks normal.

Apparently, my breast tissue just decided to grow in a weird way. I’ll probably try to keep up with yearly mammograms and ultrasounds now that I know I have dense breasts, though, just to be safe (even though general screenings don’t start until 40)

I hope any of y’all waiting get good results

A year later, better informed - Still concerned

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