Waiting on 2 biopsy results

Anonymous

Waiting on 2 biopsy results

HollyBear

I've always known that I was at a high risk for breast cancer. I don't know of many women in my family tree that have not had some form of breast cancer. In 2012 I did the genetic testing and was told that I have the same likelihood as anyone to get breast cancer, but I do not have THE GENE.

Since 2012 I have been on a 6 month schedule of April for MRI and October for Mammogram/ultrasound. I've also had 1 sterotactic breast biopsy (2012) and a core needle biopsy (2018). October of 2019 my mammogram showed new calcifications, but the Dr wanted to watch it. April's mammogram, ultrasound, AND MRI showed "non mass enhancements" in right breast.I was rushed in for a MRI guided biopsy. Friday (5/8) after the MRI biopsy the Dr causally mentions that now I need to go to ultrasound for the other biopsy. Wait, what?! There was a spot in my left breast that was lighting up on the MRI and it looked suspicious enough for the Dr to do an ultrasound guided biopsy that day.

Now I am sore. So very sore. But most of all terribly worried.I am trying real hard to not overthink or overreact, but I feel like a deer in the headlights. I am trying not to try to figure out what the odds are that "everything is fine". I am only 46.

How in the heck do I manage all this time between now and Wednesday? How do I keep my wits about me? Because of the global pandemic, the nurse is supposed to call me. I am just freaking out. Reading the posts here has helped.I just needed to add my voice here.

Beesie

Waiting for results is tough. Do you have copies of the imaging reports that lead to the biopsies? Do you know the BIRADs rating? Since you were sent for the biopsies, I'll assume a BIRADs4 (a BIRADs3 would be "watch and wait") but sometimes it's broken down into 4a, 4b, and 4c. If the imaging was highly suspicious, it could be a BIRADs5. The imaging reports can be very helpful in understanding the likelihood that you will end up with a breast cancer diagnosis, and if so, it might provide some hints on what that diagnosis will be.

Overall, only 25%-30% of BIRADs4 biopsies turn out to be cancer, so without knowing more, the odds are certainly in your favor.

About your genetic testing, did you have a full panel test or were you only tested for the BRCA genes? The BRCA genes are the best known, but there are many others as well. Full panel tests usually include 25-30 genes that are all known to increase breast cancer risk. And even more importantly, have any of the women in your family who've had breast cancer been tested? Usually it is preferable that someone in the family who has cancer be tested first - if this individual is found to have a genetic mutation that increases risk, then other family members can be tested for that specific mutation. All that said, even a negative genetic test result does not necessarily mean that your risk is the same as the average woman, not if there is a lot of breast cancer (and related cancers) in your family, particularly among first degree (parents, siblings) and second degree (grandparents, aunts, uncles) relatives. The science on genetic mutations is in it's infancy and there are likely many genes that increase cancer risk that are yet to discovered. In fact if you haven't been tested since 2012, it may be time to be tested again since there are no doubt many more mutations being tested for now. I'm quite surprised that a genetic counselor would have told you that your risk is the same as average if your family has so much breast cancer. I had my first genetic testing done in 2006, and even back then, the genetic counselor's advice was to come back again in a few years to be retested.

Good luck with the biopsy results - hoping both biopsies are benign. And try not to freak out (easier said than done, I know!) because there's no point in worrying about something that might not even happen. And if it does happen, you'll find that you be able to deal with it - we all do.

AliceBastable

You do something fun to pass the time. Options are more limited than when I had my biopsy two years ago and went to an awesome concert the next night, but you can still watch a goofy movie or play your favorite party hearty music. With each step two years ago, I planned for something fun in between. It really helped.

HollyBear

I am working to get copies of my test results. The Nurse Practitioner I have seen since 2012 is not my favorite person. This April mammo/US/MRI was to be the last with her office. Then I got scary results and scheduled for biopsies. My goal is to get my results (tomorrow) and then look at my Dr options based on the results. Figuring out this whole breast health team has been a bummer. I know I should have been more vocal about my doubts and feelings along the way. Unfortunately, I allowed the nurse to bully me in a lot of ways and I am disappointed in myself for continuing to follow her recommendations/mandates. She gets 'weird' if I ask for paper copies of my tests. I know, I know - I should not allow that to continue. Sometimes my anxiety drives me and this lady gives me anxiety in spades.

I also know that in 2012 I did not have BRCA genes. My maternal & paternal grandmothers, maternal aunts (2), mother and several maternal cousins all had/have breast cancer of some sort. We also have a big history of ovarian/cervical cancer. I had a complete hysterectomy in 2007 due to raging, invading endometriosis. I have zero relationship with my family (due to their toxic nature) so I dont know if anyone has been genetically tested and both grandmothers died from breast cancer (Met).

The Dr who performed my biopsies (I liked him) was "pretty sure" I would need a surgeon "soon". I know none of this provides any clinical information, but its what I have right now.

My hope is that the biopsies will be B9 and I will be able to find a Dr that I trust to move my care to. In the meantime I am trying to remain somewhat calm. But I am not sleeping (duh) and finding it hard to focus for long. Add that to the soreness from the biopsies and you get me stretched tight. I am still doing my projects (I work with wire & beads) and still working my full time job (from home, I am a computer programmer) At least I took a step and communicated on this forum.

Thank you for your responses and support. I really does mean a lot to me.

Beesie

With your family history of breast cancer and related (ovarian) cancer, if your biopsies are negative or if they are positive and you have a lumpectomy (i.e. you keep your breasts), you should go back to get genetic testing done again. If you test positive, that will allow you to get into a high risk program which will lead to better screening.

BRCA gene test for breast and ovarian cancer risk

"A negative test result means that no BRCA gene mutation was found. However, assessing your cancer risk is still difficult. The test result is considered a "true negative" only if it finds that you don't carry a specific BRCA mutation that's already been identified in a relative."

"Researchers are continuing to study gene mutations that increase the risk of cancer and developing new gene tests. If your gene test was done more than five years ago, your doctor might recommend testing again with newer tests."

Outcomes of retesting BRCA-negative patients using multigene panels.

"This study demonstrates the feasibility and potential clinical benefit of retesting individuals who previously tested negative for BRCA1/2 mutation. This approach had a significant management impact on patients and their families, with a 13% detection rate of pathogenic mutations."

.

Good luck with your biopsy results! Let us know how it goes.

HollyBear

I was able to get the Radiologist report from my mamm/US/MRI 4/22/20.

There are a lot of words, but the 'IMPRESSION' is quoted below;

1-new area of linear nonmass enhancement measuring 9mm at 12:00 mid-depth int he right breast. MR guided biopsy is recommended for definitive diagnosis.

2-Corresponding to the area of concern in the left retroarelor region at 6:00 a linear enhancing mass is seen, this is unchanged since 2017. This corresponds to the hypoechoic lesion identified on recent ultrasound dated 4/22/2020, since this the area of the patient's concern, although stable if tissue diagnosis is desired then an ultrasound-guided biopsy could be performed.

Assesment: IV - Suspicious abnormality - biopsy should be considered

Salamandra

"The Dr who performed my biopsies (I liked him) was "pretty sure" I would need a surgeon "soon". I know none of this provides any clinical information, but its what I have right now."

The doctor who did my biopsy said something very similar, and it was cancer. I was birads5 (though I didn't know at the time).

I would say - it was cancer, and the beginning was hellish, but the mental part was harder than the physical part and once I had my first oncologist appointment, things just got easier and easier from there. The anxiety at the beginning is the hardest.

I would say, take the time to figure out how to get your results sent to wherever you'd like them to go if they are malign, and go full in on your coping skills. Ask for Ativan or valium from your doc to help you. Computer games, movies, puzzles, chats with friends, exercise, whatever works for you.

You are only Birads 4, so it is more likely NOT to be cancer than to be cancer, and there are definitely other issues that warrant a breast surgeon. But you should know that it's possible for it to be cancer, and you will still be ok.

HollyBear

Thank you for that Salamandra. I am supposed to have a call with the nurse prac tomorrow (5/13) at 9a cst. Between now and then, I will try to not freak out. The lack of sleep is not good for maintaining balanced moods. Also, these darn biopsy sites are sore and that is annoying too. I have now sworn off Dr. Google for at least 24 hours. Nothing I do today can change the results I get tomorrow. Right?!?

Beesie

Well, the good news is that your right breast shows linear non-mass enhancement on the MRI and calcifications on the mammogram, which to my understanding (as a non-medical layperson) would be suggestive of DCIS, if it is anything of concern at all. DCIS is a non-invasive condition; a diagnosis of pure DCIS is Stage 0 breast cancer although these days it's considered by some to be a pre-cancer. DCIS and invasive cancer often go hand-in-hand, so this doesn't preclude a diagnosis of invasive cancer, but should that be the case, from the description it sounds as though it would likely be small (9mm) and early stage.

As for the left breast, it sounds as though whatever is there has been stable for 3 years and the reason that a biopsy was recommended is because the area corresponds with your area of concern. Stability is a good, and again while that's not a guarantee, it's a positive sign that makes it less likely that this area is cancer.

Smart idea to stay off Google until you get the results!

HollyBear

Got my results.

Right breast - Fibroadenoma. Nurse Prac says this is a normal, benign issue that we will just continue to watch, but it is not bad.

Left breast - Could be a Phyllodes tumor or a Complex Fibroadenoma.

I am meeting with surgeon this Friday. I will be scheduled for another MRI to install a wire to point to the tumor. I will then have a lumpectomy to remove the tumor so they can slice it dice it and find out if it is malignant.

So, I *think* this is good news. At the very least I now have a plan of action, which makes me feel better.

THANK you for reading and commenting. It really does help.

edj3

Isn't it amazing how getting some information helps so much with the anxiety?

HollyBear

It really is amazing.

Salamandra

Sounds like good news to me

Beesie

Good news! Since you have one fibroadenoma, I'd guess the odds are the other is a fibroademona too. It's not uncommon for those of us who develop them to get more than one. I had my first at 16 and another at 20. Like you, I had excisional (surgical) biopsies to remove both because they were so large and to ensure that they were nothing more than harmless fibroadenomas.

Good luck with the surgery. Mine were quick and easy.