Waiting a Week for Biopsy Results...

Ciarratron

Hello all,

I had my breast biopsy done a week ago today (dang surgical tape is still hanging on for its LIFE!), and I haven't yet received the results.

I know it's probably because of the observed holiday weekend, so of course, the anxiety is rather...HIGH right now. I called the clinic where it was performed, and they had no answers for me.

In your experience, how long have you had to wait? Should I keep making phone calls? The radiologist seemed very concerned when she completed the biopsy, so I've just been sort of sitting in stagnant dread since last Wednesday. It's a lot of fun.

I also just need to scream into the void, and...well...I came here.

Thank you!

Mangosan99

Hi Ciarratron, I had a biopsy the same day you did and received my results in person yesterday. They said that was 2 days later than usual because of the holiday. Continue to be the squeaky wheel. I have seen others that say theirs took over a week but most less than that. It seemed like the clinic should have some kind of answer. Were you ever given a nurse navigator or can you find one affiliated with the place you went for treatment?

Ciarratron

Mango! Thank you - I hope you're alright. Were you planning on sharing your results?

I called my doc again, and she said it would be this week. I called the clinic, and was told, again, that they didn't have the pathology report yet. I was then informed that the radiologist who did the biopsy would need to make "an addendum" to the report, then send it to my doctor. I was also told that the radiologist was out of town this week, and will not be back until Monday (!!!!). THEN, I was told they'd send it to the doctor from the Urgent Care I went to initially, in spite of telling three people at the breast clinic to send it to my actual primary care doctor.

Bloody unacceptable. I've had such an awful experience with all of this thus far, and almost everyone has been incredibly rude and extremely unhelpful (I mean, I DO live in Los Angeles). If I have to wait until Monday for the pathology report, that'll be almost a month since the initial exam. I'm so close to just calling the lab.

Also, the heck is an "addendum"? What kind of "addendum"? All the person at the clinic said was "it means an addition."

...ya don't say.

LiveLoveLaugh2020

Ciarratron so sorry you are still waiting. Waiting is the worst part. I hope you get your results ASAP! 🙏

Ciarratron

LiveLoveLaugh, thank you! I'm thinking a glass of wine might be needed tonight...I have been abstaining since all of this started.

I must retract what I said about "everyone" being awful since this started - I meant on the medical side of things, not you wonderful ladies obviously! And my doctor (and her whole office team) is great, so I have that on my side, too.

Salamandra

I was told to wait 10 days for my biopsy results, and I think they took a bit less than that but then there some complications with the transmission to my doc. Sigh.

Are you sure the radiologist will contact you? They told me that they would send the results to my doctor who ordered the original diagnostics and it would be up to that doctor (my gynecologist) to share the results with me.

LiveLoveLaugh2020

Welcome! A glass of wine is fine, heck you even deserve two after a week of waiting.

It’s okay, no need to explain. You’re getting the run around and you’re frustrated. Vent all you need!

Mangosan99

Ciarratron,

I am with you on the amount of insensitive and unnecessary waiting. It was 33 days between my suspicious mammogram and my biopsy results, and it isn't over yet. I just expect now that much of this process will be waiting for each unintegrated part of the machine to contribute their piece to the process.

My biopsy led to more questions than answers--my husband and I left the BS office wondering if we actually got good news or not?! I was diagnosed with atypical ductal hyperplasia (ADH) with possible DCIS, recommending a surgical excision for further pathology. I saw my BS's nurse practitioner--my BS is on vacation (sound familiar?)--and the plan is to back up a few steps and do a MRI and genetic testing before any surgery--lumpectomy? plus add'l therapies? or semi-preventive MX/BMX? So, more waiting.

There was a weird sense of closure though after getting the results. That niggling of hope that it was "nothing" was taken off the table so I could begin thinking through the future.

Hang in there; and, drink the wine.

Ciarratron

Update...sort of...:

I did drink the wine, and it was very much needed!

I’m still waiting. It’s been two weeks, which seems unusual, from all the stories and posts I’ve read. I don’t understand. On Friday, both the clinic and my doctor said the pathology report had not come back yet. I haven’t made any calls today, as I was told that the surgeon? radiologist? who had performed the biopsy was out on vacation last week and would be back today.

Is it necessary for the doctor who does the biopsy to be involved with the results after it’s been sent to pathology? I assume someone would need to interpret it before sending it to a PCP. But reports are reports, so wouldn’t another doctor on staff be able to handle it?

I feel like I’ve been bumped to a low priority, but the surgeon/radiologist seemed plenty concerned at the time of the biopsy.

Boy, I hope she had a good vacation. Totally hope it was the best vacation ever.

I hate calling the clinic. They’re always so rude and treat me like I’m a first class idiot. I feel old enough at 30 to know how to handle a fair amount of Life Stuff, but this is totally out of my element. I’m terrified, and I wish they could attempt to empathize with that. It doesn’t give me much hope for the future if I end up needing treatment.

Oh, and Mango, what a strange diagnosis...I’m really really happy to hear it’s not aggressive or something invasive at this point. Please keep us apprised as to what happens!

upstate38

Ciarratron,

That is really not okay. I'm absolutely livid after reading your post. It sounds so much like my breast clinic and the last radiologist I had. It is not fun to be treated like an idiot especially when you're going through something like this. I would push to speak to another radiologist or a supervisor. There should be another radiologist at the clinic who could deliver your results. I have never waited more than a week for my results. I'm so sorry you're going through this, and it's totally unacceptable.

Ciarratron

upstate38, it’s really not ok.

I called the clinic again today. They told me my report was sent to my doctor on Friday. Called my doctor, no one answered, so I left a voicemail, then sent an email. Two hours went by, so I called my doc again.

I was told by the receptionist I’d have to make an appointment...so I said “absolutely not. It’s been two weeks.”

They stuck me on hold for 15 minutes, then told me that they never received the results, and that they’d call me back when they find out what happened.

I’m so angry. I’m crying, and borderline hyperventilating.
I just want to KNOW. My trust in the healthcare system is shot already, and I haven’t even been diagnosed.

Feeling incredibly helpless right now.

quinnie

Ciarratrom: I am so sorry you are going through this. Both my biopsies only took 2 days for call back. Its hard to know who to blame in your mess. It has been way too long. I am keeping you in my prayers for the best results. I can say try to relax but that is not realistic. Please keep us posted. We are all on your side and will support you in any way we can. God BLess.

Ciarratron

Ladies, thank you for the super kind words.

I finally got hold of the report - it's positive. I have breast cancer.

Not surprising. I did expect this.

As far as I know, it's grade 3 (yikes) ER+, PR-, and HER-2 negative, and about 2cm. It also says DCIS as well as IDC? I’ve done SOME research, but not totally sure what all that means, exactly. Can one of you shed a little light, pretty please? Thank you!

Waiting for a referral for an oncologist.

Man...at least it’s a beautiful day out here in Los Angeles to be diagnosed.

MinusTwo

Ciarra - so sorry you had this wait. Yes, the next step should be an oncologist. Surgeon's cut but the MO should drive the bus. You're not HER2+ so they likely won't do chemo first, but each doc is different. Be sure you personally have copies of your reports - in your own hands. This likely will be another hurdle I expect, but it's important.

BTW - when docs or nurses start ignoring you, just remember you are every bit as important as Queen Elizabeth and you can demand satisfaction (hopefully in a nice way, but firmly)

I'd suggest that you get a 2nd opinion at an NCI cancer center. There are several in the LA area.

https://www.cancer.gov/research/infrastructure/can...

Hang in there girl.

Beesie

Sorry to hear that you've been diagnosed.

First off, having IDC and DCIS together is very common; about 85%-90% of patients with IDC also have some DCIS. IDC starts off as DCIS so it just means that some of the cells have progressed to become IDC and some of the cells remain DCIS. The DCIS is the less serious condition so while the DCIS has to be surgically removed, otherwise you can ignore that part of the diagnosis. Anything done to treat the IDC will be more than sufficient to treat the DCIS.

With an ER+ cancer I would expect that after surgery your tissue will be sent for an Oncotype test. This test is used to assess the aggressiveness of the tumor and therefore whether or not chemo would be beneficial.

ER+/PR-/HER2- is treated similarly to ER+/PR+/HER2- (which is the most common diagnosis) but there are some concerns that the PR- may make a diagnosis more aggressive. There's lots of discussion about this diagnosis here:

Topic: Single Hormone Receptor Positive -> ER+/PR-/HER2- https://community.breastcancer.org/forum/137/topic...

.

Until you will know the actual tumor size and nodal status, which won't be until after surgery, and until you get an Oncotype score, which will be ordered unless the surgical pathology makes it absolutely clear that chemo is necessary, the only thing you can be sure of right now is that you require surgery. Based on the tumor size, I'd guess that a lumpectomy, followed by radiation, will be recommended. You do have the choice to opt for a mastectomy, which often means that radiation won't be necessary, although even with a MX, rads might be recommended if the tumor is near the chest wall or if you are node positive. As MinusTwo mentioned, since you are HER2-, it's likely that surgery will come first, followed by chemo, if chemo is deemed to be beneficial.

Hope that you get the MO appointment set up quickly. As you well know, waiting is never easy.

alto

This page has some good info about DCIS and IDC:
https://www.breastcancer.org/symptoms/types

DCIS is ductal carcinoma in situ (in situ means 'in it's original place'). It's abnormal, cancer-like cells that are contained within the milk ducts and are not yet invasive, and and have not moved beyond the duct walls.

DCIS can also be diagnosed 'with microinvasion,' which is where they see a few cells beyond the border of the duct walls.

IDC means the cancer has moved beyond the walls, and they generally want to remove this with a 'clear margin' (no cancer cells on the edge of the tissue), and you will work with both a surgeon to remove the cancer and an oncologist to determine if you need any other treatments.

At this point, you can get a second opinion, too - especially if you don't feel confident in your care so far. Check with your insurance on your options for a second opinion.

upstate38

Ciarratron,

I'm sorry to hear about your diagnosis. I also hate that you were treated like this. Please know that we are all here for you, and there are so many knowledgeable ladies on this board. I don't know the answer to your question, but I know that someone will come along to shed some light on the situation. Please feel free to message me at any time. You're not alone. Sending much love from SC❤️

Ciarratron

MinusTwo, Upstate38, alto, and Beesie,

Thank you ALL for the information!!

These forums have helped SO MUCH in my research - if I hadn’t found y’all, and hadn’t done so much reading, I think I would be a lot worse off. I can’t properly express how grateful I am.

MinusTwo, I’ll check out an NCI center. Thank you!
I have a friend whose dad has got people at City of Hope to introduce me to, as well.

I’m scared as hell, but I guess this is my life now.

Mangosan99

Ciarratron, I came across your update last night right before going to bed and my heart was broken with your news. I am so sorry. I laid awake thinking about how quickly our lives are turned upside down by this disease and how so many women have been suffering. I have been oblivious until now. My mom even had it twice (and is still living BTW!) yet it never rocked my world until it was me.

I hate that you are experiencing it so young but I am optimistic that you have greater strength, overall health, and much support.

After what you have been through with the diagnosis, I hope you find the caring and capable hands of an excellent treatment team. I will be thinking about you.

I am supposed to have an MRI today but insurance hasn't cleared it yet. I vacillate between inner peace, total fear, and outright anger at the system. I am guessing this is normal.

Sending hugs and highly recommend moderate amounts of wine.