appointment with a surgeon without my biopsy results?

Anonymous · August 2017

WednesdaySewcialist · August 2017

I had my baseline screening mammogram back at the end of June of this year. I had just discovered that I had the BRCA2 mutation and figured it would be a good idea to start being screened. I am 33 and BC was not even on my radar as I have a whole host of other medical issues I am looking after.

The mammography told me when I left that since it was my very first, often the radiologist will want closer looks at things and not to worry if I got a white envelop in the mail with images, the report, and a referral for follow-on diagnostic work-up.

Being a Marine Corps Vet, all my care is generally through the VA, but they contract out for the majority of "women's services."

Well that white envelop showed up REALLY quickly. I freaked out a little, but then remembered the words I was told and calmed a bit.

Two months later, I finally had my appointment for my diagnostic mammogram. I expected a very similar experience to the VA....walk in, have mammogram taken, be told your results will be mailed to you or you'll be called, etc. NOPE!

Immediately, the radiology tech said "the doctor is going to want to biopsy this."

I had just finished breast feeding my second kid a little over a year ago....what on earth was she telling me?? I was totally caught off guard.

They immediately did additional, even more magnified views that confirmed their desire to biopsy. They wanted to ultrasound as well, but the ultrasonography didn't seem to understand what the doctor wanted because she only looked at one breast while everybody else was looking at both. She didn't seem very in the loop. She said she couldn't find anything, but kept measuring a mammary lymph node and my report from the day note apparent bilateral enlarged lymph nodes.

They then scouted me for the biopsy and scheduled it for the following week.

Fast forward a week. That sucked and they didn't explain sensations very well. They explained forceful movements of the needle and sounds and it was just very unpleasant, but they were also very kind. The first breast went fairly smoothly. The doc took the sample to pathology and everybody began prepping for the second (bilateral because I party HARD!).

After the doc removed the sample from the second breast, the entire team left the room with THE NEEDLE STILL IN MY BREAST and the marker not even placed. they apparently all needed to see the sample and my stomach just SANK and of course nobody said anything to me about it.

So the next morning, the nurse calls to check on me and see how I am doing and then asks me is I have any questions. I ask her if she knows about when I might hear back about the results of my biopsies. She says the results of all their biopsies are given during appointments with the surgeons.

ummmmmWHAT?!??!

So if I have totally benign NON lumps in my breasts and you have removed the calcifications through your crayon-sized needle punching me, now I have to pay additional money to go sit in somebody else's office (who I haven't met yet) so they can tell me this? I get it there is something going on...if something needs to be done. But if they just want to re-mammo in 6 months or a year, then they should be able to pick up the phone and call me.

Any insight?

MelissaDallas · August 2017

A lot of breast surgeons only give results of biopsies in a follow up appointment. Also there are different kinds of "benign." There are flat-out "benign" and then there are other benign changes (different types of atypia) that may signal that you have an increased future risk of developing cancer.and you need a discussion of what kind of follow-up or even medication that may entail. The calcifications are just a sign that there could (or could not be) problems in the surrounding/underlying tissue. The calcifications themselves are not the issue. Most of us develop some calcifications as we age - they are only considered concerning if they present in certain patterns. They do x-ray the sample for calcifications to see if they obtained the samples in the correct area.

So do you sew? I'm a quilter.

MTwoman · August 2017

I think MelissaDallas explained it pretty well. I could give you some statistics about how frequently biopsies come back b9 (70-80%) but we both know your risks aren't exactly those of the general public, so those statistics would not be accurate for you. Have you had a consultation about your BRCA2+ status and what that means for your personal risk for bc? If not, the consult may be your chance. And if so, even if your finding is b9 (which is very possible), certain b9 findings coupled with your genetic mutation, could change your overall personal risk profile and is worth discussing with a professional. Either way, those things should be discussed with you in person, not on the phone. Sorry you are waiting for that appointment! waiting is awful. ((hugs))

BrooksideVT · September 2017

I know it's incredibly frustrating and decidedly infuriating, but, really, a breast surgeon is the professional whose expertise is specific to clarifying the multiple points and issues (even if 100% benign) that the report will document. Probably you will want to spend about an hour with him or her. Your time/money will not be wasted.

Bellapam · September 2017

I just went through the same thing with my biopsy reports. I waited a long time to hear that my results were benign. It made no sense to me, but I also got to talk with the surgeon, ask my list of questions, and make appointments for my excisional biopsy (my choice, not necessarily your next step, fyi). As much as I hated waiting, I was cheered by the results just the same. Please don't read into the procedural stuff ( like I did). Some organizations have a specific operating procedure regardless of the results. I hope your trial ends like mine or even better!

Shellsatthebeach · September 2017

It just seems a little cruel not to let someone know the results ahead of time. I'm the type that needs to have time to digest it before being on my A game with questions etc for a doctor....hoping this is a b9!

53nancy · September 2017

Did some of you actually get to spend time with the surgeon? I had two appts less than 10 minutes each, then he was rushing off somewhere else. I didn't get to ask questions, and more or less just followed orders. Seven weeks after my 2nd biopsy (July 14), I still don't know about my hormone receptors, because they are "still pending", though I know I am her2-/neu. Now I am waiting for biopsy number 3 - sentinel node - and am told if that is positive, I will have to have a 4th one for axillary nodes. I am having a hard time with depression.

Shellsatthebeach · September 2017

Hi Nancy, I can't believe they still haven't told you the results of the hormone receptors. They too found cancer in my sentinel nodes and had to take my axillary nodes out. Fortunately, results were done during surgery so I had it done right away. Sorry to hear you have to go through surgery again so soon. Feeling tired and worn down will certainly bring on depression. Do try to get as much rest as possible, and distractions do work sometimes to get your mind off all this crap.

53nancy · September 2017

Hi Shellsatthebeach, thank you for your encouraging words. The city (an hour away) where I will have treatment has only one radiological oncologist and we cannot afford to go to a bigger centre. I finally heard from my doctor at home that she called the Lab and they will look into why the results are still pending, but it will be a while before I hear. Do you mind if I ask how many biopsies you had? Have you had radiation, and do you expect to have chemo? Things move very slowly here. My first biopsy in early May indicated B9 with recommendation for excisional biopsy, which was July 14th. By the time I have my next one, it will be two months, and it drives me crazy that they didn't take sentinel nodes the first time, and I don't see why they can't take axillary nodes at the same time as the sentinel nodes. I wonder if so many biopsies are actually the norm? I did go out for a half hour walk this morning and have been trying to do that at least once a day. It's when I have time to sit still or when I go to bed that the depression hits.

LisaAlissa · September 2017

Hi Nancy,

I know that the process is tortuous. However you don't want to have biopsies that are unneeded, or an an axillary node clearance that isn't required.

The "process" in most breast cancer centers is a step-by-step one so that they get the information needed, without doing procedures that are unneeded (and have their own risks--scarring, pain, making later screening more difficult, anesthesia risks, lymphedema, etc.). The time you describe (first biopsy in early May 'til now) does seem a little more extended than some I've heard of--but BC is (generally) very slow growing.

I'm not clear on your experience, but I'm guessing that the excisional biopsy confirmed a suspected BC diagnosis from your first biopsy (a less-invasive biopsy; perhaps a Fine Needle Aspiration (FNA) or a core-needle biopsy? that didn't settle the question for some reason?).

And It sounds like you don't have copies of your various reports. Ask your docs for copies. You will want to have procedure reports (from the biopsy procedures--where the medical professional describes what they did), pathology reports (from the pathologist who examined the tissue, and imaging reports (from the radiologist who read your mammograms/ultrasounds/MRIs, etc.) and lab reports. Some of us even want office visit reports.

On pathology reports, there are often "initial reports" and then supplemental reports, as additional findings are added. But you can ask for all of the reports to date, and then ask when any supplemental reports that are expected will be received.

Have you been assigned a "nurse navigator?" If not, ask if your medical center has one available. That person can help you make sure that your diagnosis and treatment is "on schedule," and talk with you about why they are proceeding a step at a time and why the next step is next.

They used to "clear the lymph nodes" immediately after a BC diagnosis (which, if I've guessed correctly about your experience, would be after the excisional biopsy). However as an axillary node clearance can have debilitating side effects, you don't want one if the cancer hasn't moved into the nodes. And in what now looks like the "dark ages" of breast cancer treatment, it was often in one grand surgical procedure--mastectomy/lymph node clearance. Which medical professionals ultimately decided was overtreatment for many women.

Lesser, but still effective treatments have since been developed. For example, the excisional biopsy you had is substantially similar to a lumpectomy (it's called a biopsy when BC hasn't yet been diagnosed, and a lumpectomy when it has). That may be all the surgical treatment you need to remove your breast cancer. Are you expecting to have additional breast surgery?

The Sentinel Node Biopsy (SNB) was developed to further limit what is now viewed as over treatment. The idea is that if cancer cells have moved into the nodes they'll follow the flow of lymph through the nodes, so that if there is cancer in the nodes, it will definitely be in the first node drained from the breast--which is called the "sentinel node." So they do a SNB to see if there is any reason to subject you to an axillary node clearance.

The more extreme/extensive the surgical procedures, the more likely you are to have adverse effects (for instance, lymphedema) which are life-long problems.

Granted, if it turns out you need a node clearance, you'll feel as if they could have done it all at once...however imagine that your SNB is negative! You get to avoid more lymph system damage, and reduce your chances of lymphedema substantially.

Hang in there,

LisaAlissa

Shellsatthebeach · September 2017

Hi Nancy, I guess I was very lucky that I had my biopsy on the same day as my ultrasound. My guess is they saw my results on ultrasound and they had concerns. My cancer is in the more advance stage so things needed to move quickly. With that said, at the very least you should have gotten your receptor report by now. I had chemo before my surgery since they needed to shrink the lymph nodes prior to surgery. At Dana Farber, they automatically do the sentinel nodes first, but get lab results on them during surgery so you don't need additional surgeries which was a huge reason I wanted to go to them. I knew I had a lot of lymph node involvement from scans. Due to this, I will need radiation. Hoping all works out for you and they show a bit more urgency on getting your results back in a timely fashion. Some times you just have to light a fire under their butts. I hear you on having to much time to think as things slow down near the end of the day. That is the hardest time of day for me too. Sending positive vibes your way!

53nancy · September 2017

LisaAlissa and Shellsatthebeach, I do have all the reports that I'm aware of, but a lot of info seems to be missing. With the excisional biopsy, they took a 2 inch x 3 inch mass that had a small tumor abiut 13 mm in size. There was also a High Grade DCIS. The surgeon said he "got it all", but I didn't know until mid-August that here were two diagnoses and the surgeon was so rushed that I got almost no info. He just said SNB and left. So I don't know if getting the DCIS was part of that mass. Do you know what kind of protection the heart and lungs receive during radiation? I am concerned about that. Thank you LisaAlissa for the suggestion of a nurse navigator. I will certainly look into that. And as far as I knw, no further surgery. Just hoping that is true.

Thank you both for your support and wishing you the best in your journey. Hugs to you both

Beatmon · September 2017

Your hormone receptors should be back... before the her2. Can you drive o where the medical records are and request a copy? Sounds like you may be getting the run around just a little. The hormone status is done quickly compared to the her2 . Good luck figuring it all ou

appointment with a surgeon without my biopsy results?

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