The Infamous Waiting 6 Months Limbo and New Symptoms

Anonymous · February 2019

jp18 · February 2019

I got my 'called back in for more dx imaging' in August (2018) after my mammogram and had a diagnostic mammogram and diagnostic ultrasound. The 'results' led to much confusion and anxiety especially when the doctors provided conflicting information. I have been told that hypoechoic is more solid and hyperechoic is more cyst/liquid - no solid matter. Then I have been told the reverse! Same with 'shape' and 'visual' - as in round/oval clear and hyperechoic is what you want - not the hypoechoic. But then no, you do not want hyperechoic. I tried to get back in early, but unfortunately the protocol from the doctors I spoke with is 6 months before any other steps will be attempted. My point is, if there is a growth/mass/lesion/ found, why wait 6 months if they cannot definitively state that is NOT cancer as apposed to 'PROBABLY' benign? I understand the 'over diagnosing' and too many invasive procedures increase health costs across the board, but the guessing game most of us women are left with is pretty rough to deal with - actually a tad bit cruel. I find myself fluctuating between, "It is all ok. They would get you in if they were worried." to "There are so many cases of women that were told to 'wait and see' that ended up with cancer." These last 5 and a half months I have had to be very aware of my 'Google' time and how it can be my worst nightmare - too much information - almost all of which predict horrible things! Gracious, do not image search with your own ultra sound and/or mammogram images! If I get tempted to 'research', I try to force myself to do something else - away from the computer. If I just have to gather information, I try to only peruse forums such as this.

I am coming to the end of my 6 month waiting period and am actually getting even more anxious. The 'what ifs' are taking over and I am running out of distractions. (My family is getting tired of my knitted scarfs and blankets but Michaels an Hobby Lobby love me!) I have tried to steer clear of too many self checks, but we all know that that has not gone well. I have started to question myself in that sometimes I feel the lump, sometimes I think I don't. Sometimes it feels bigger and I think there is some swelling in my armpit, then I think, 'No. You head is playing mind games!" To add to the glorious mix of anxiety, I have started to have moments of an almost achey and burning type feeling in the area where the mass is located. My right breast feels as if it is a bit heavier and sometimes it looks as if there is a small dent on the side of my breast. I question if it is my eyes playing tricks, fat, shadows, arrrrrrggghhhhh! More rounds of the 'yes/no/head game'.

Has anyone else had these types of symptoms?

I think the point of this word purge rant is that I truly do not understand why we are put through such stress. I tell myself that those in control of our medical journey surely do not know of the intense worry this sort of waiting causes us. Their pat answer of "Eighty percent of all breast growths are benign so just don't worry about it." actually has the opposite impact...along with all of the other stats thrown at it. Lord knows how I will handle if I get another, 'Let's just see if this thing changes over another 6 months.'

My 'Findings' report: (right breast; left was 'unremarkable')

Persistent 4 mm nodule upper outer quadrant consistent with mammogram
asymmetric density in upper outer quadrant
4 mm hypoechoic nodule or cyst with internal septation/internal debris 10 o'clock; 5-6 cmfn
corresponds to mammogram findings
BI-RADS III
Density Category B
Scattered Fibroglandular Densities that could obscure lesions
Hypoechoic area with echogenic center

Thanks so much for reading my post and responding with any insights you may have. I have no one to really talk with so, as you can tell from this post, I have held on to quite a bit of worry!

jp

Jennie93 · February 2019

I'm no expert but I don't think BI-RADS III is anything to worry about. But if it is cancer, six months is no big deal, in almost every case, they say it's probably been there for years before it was seen.

But yeah, they seem to have no clue how this affects us. Why not just do the biopsy (which is no big deal) and be done with it? Then you would know for sure what it is, and have peace of mind.

jp18 · February 2019

Thank you so much for your response Jennie93. You're right. Six months in the big picture is really not much to worry about. I had a crainiotomy for a brain tumor and they told me then that it most likely had been there for years. Isn't it odd to think that our bodies produce these things and we walk around unaware that they even exist!

I probably word purged too much in my original post and my current questions really got buried in the rant.

Because of the Birads III, I am hoping for the best, thinking it will turn out ok, but the new symptoms are creating additional anxiety. The occasional heaviness/achey feeling with the slight burning and dent/shadow that is sometimes there (again - head games I am sure) raise my concerns as these were not present when the growth was first found. I am sure it is all in my head and and if not, then it will be something simple to fix. I didn't mention in my original post another worry and that is my ultrasound images have me concerned as they do not look like the cysts I have seen posted in research studies, but then again - we cannot trust Dr. Google. My husband had asked some questions of the radiologist when he told me he 'found something suspicious' and you could tell the doctor was put off and almost offended that we were asking questions. The 'notes' on the CD with the images were a bit different than the actual paper report.

I am curious if anyone else has experienced these type of symptoms at any point in their journey, benign and/or cancerous.

I hope you are doing well.

Again, thank you for taking the time to read my post and respond.

Beesie · February 2019

"why wait 6 months if they cannot definitively state that is NOT cancer as apposed to 'PROBABLY' benign?"

Because it's impossible from imaging to know with absolute certainty that something is cancer or is not cancer. Imaging is imperfect. A lesion that appears to be extremely like to be cancer might turn out to be benign. This is why BIRADs 5 is defined as "HIGHLY SUSPICIOUS FOR CANCER" rather than stating that cancer is a certainty, despite the ominous appearance of the imaging (95%+ of BIRADs 5s turn out to be cancer). Similarly, a lesion that is assessed to be highly likely to not be cancer might turn out to be cancer, which is why the word "PROBABLY" is used for BIRADs 3 (98%+ of BIRADs 3 turn out to be benign). The exceptions are the rare cases, but they happen, and the terminology by necessity reflects this.

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"Persistent 4 mm nodule upper outer quadrant consistent with mammogram"

"Persistent" does not mean there is a problem. In this context, I'm thinking that "persistent" means that the lesion is seen on both the mammogram and the ultrasound. i.e. it is persistent. The other possibility, but I don't think this is the case for you, is that this lesion is persistent across several screenings over a period of time. That too would not be a problem. While cysts often dissipate on their own, this isn't necessarily a quick process - I've had cysts that have hung around for years.
Consistent with mammogram simply means that the lesion that they are assessing on the ultrasound is the same lesion that was found on the mammogram. Mammograms tend to 'see' cysts but because mammograms are unable to distinguish between solids and fluids, you can't know from a mammogram if a lesion is a cyst (fully or partially fluid filled) or a solid mass. Ultrasounds are able to identify whether a mass is solid or fluid-filled. Your mass, from the description, sounds like a complicated cyst, which is a cyst (fluid-filled) that has some floating debris and/or an internal septation. Breast Cysts
4mm is tiny, just over 1/8th of an inch in size.

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"Density Category B" "Scattered Fibroglandular Densities that could obscure lesions"

Category B, Scattered Fibroglandular Densities, is actually the second lowest level of breast density. It means that your breasts are 25% - 50% dense and imaging is therefore more reliable that it would be for the majority of women, who have either Category C (50%-75%) or Category D (75%+) density. The fact that your mammogram found such a tiny cyst is a good.

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"Eighty percent of all breast growths are benign so just don't worry about it."

Actually, 80% of biopsies are benign. Many breast growths, particularly cysts, which are the most common, are never biopsied. I don't know the actual figure, but I would guess that the percent of breast lesions that are benign is probably closer to 95%.

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For information about terminology and what is favorable and what is unfavorable, see the excellent post from DJMammo, here:

Topic: Interpreting Your Report

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Good luck with your next appointment. What the Radiologist will be looking for is either a reduction in the size of the lesion, or stability. If the lesion has not shrunk in size but is stable, you might be scheduled for another 6 month follow-up, not because of any concern but as a second confirmation that the lesion is harmless. An unfavorable result - which still wouldn't mean cancer - is if the lesion has grown or changed. That would likely warrant a biopsy but still would present a good possibility that the lesion is benign (cysts can and do grow).

The Infamous Waiting 6 Months Limbo and New Symptoms

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Topic: Interpreting Your Report

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