Time for another biopsy :(

jmb5

It's been 4 years since my DCIS diagnosis, and after finding pleomorphic calcifications at the site of the original DCIS, I am meeting with my surgeon in a few days to discuss biopsy. After my diagnostic mammogram today, the radiologist said there is no way for him to tell if it is cancer, but after looking at my pictures from 2009 and from today, they look almost identical. Suspicious calcifications in a cluster that are different in size and shape, and in the same spot. He said it could be benign from the previous treatment/scar tissue, or it could be recurrence. I feel so sad tonight. Don't want to do another biopsy, and certainly don't want to do through cancer treatment again. Did I mention that my insurance deductible is $3000? I'll be paying that for the biopsy before the end of the year, and if it's cancer, another $3000 after the first of the year when I have further treatment.

mrenee68

I get where your coming from, I hope that your biopsy comes back benign. I had to do the same thing by paying back to back deductibles, it sure does stink. I'm so sorry you are having to go through this again. Hang in there!

Annette47

Sending benign thoughts your way! Because of when I was diagnosed last year, I had the same thing with the back to back deductibles. But my daughter also broke her hand very badly last October (I was diagnosed in November) so we probably would have maxed out on that alone, even without my biopsy and surgery. Of course doing radiation in the spring ate up the deductible for this year as well.

jmb5

Thanks, ladies! I am actually very calm about it, even though I have a bad feeling. Even though I don't have a diagnosis, I am starting to consider my treatment options if it is DCIS again. Seriously considering mastectomy. Sigh.

jmb5

Biopsy is in two hours, and I'm feeling like a big baby. I don't want to go, and am dreading the waiting period until the results come back. Will probably have to wait until Monday. Someone needs to come up with an instant results machine. Lol!

LAstar

I hope it went well and that you get some good news. I hope you are resting now and eating some well-deserved Halloween chocolate!

Beesie

jmb, I hope the biopsy went well. And I hope that your wait for results isn't too long. Most of all, I hope that these calcs turn out to be benign.

ballet12

Yes, jmb, wishing for benign for you. We'll be thinking of you all weekend.

jmb5

Thanks for the encouragement. The biopsy went well yesterday... just a little sore now. I'm going to use it as an excuse to lay around today. Hoping to hear back from the doctor before the weekend, but it probably won't be until next week.

Annette47

Sending B9 thoughts your way!

jmb5

This waiting sucks! I feel like my life is on hold while I wait for the phone to ring. It's too bad they can't come up with a way to instantly diagnose. Wouldn't that be nice.

fstop

(hugs) Jmb,

Wishing for the best.

CelineFlower

Instant diagnosis...

ya that would be awesome.

i hate the waiting room..

edwards750

jmb - boy we all can relate to the waiting game although for me it wasn't that unnerving because the radiologist pretty much told me pre-biopsy it was the C word. Believe me she wouldn't win any awards for her bedside manner because she just walks in and says you wont like what I am going to tell you...gee thanks. That was immediately following the tech telling me I would be going home - nothing to worry about. Really? She had quite the game face. Sadly for me I misread it. I wish they would tell you asap though because waiting for the phone to ring is beyond excruciating. I can also speak for the deductible - ours is 5k. We buzz sawed through that in 3 months. The good thing was though we were 100% after that which included 33 Rads treatments. I cant begin to imagine what that would have cost. Finally back to the waiting game...I had the Oncotype test done. It takes about 10-14 days for the test to come back. My score decided my treatment plan - chemo or not. When the phone rang and I saw my BS's name on the caller ID I nearly fainted. I was blessed my score was low and I have a non-aggressive cancer so miracles do happen. Good luck. Diane

jmb5

So the nurse just called. My surgeon told her she could call me with the info. There is no "frank cancer", but "atypical cells", and I will need an excisional biopsy. I asked her why and she said he would go over it with me at my appointment tomorrow. Anyone know what this means?

MelissaDallas

jmb-if they want an excisional biopsy it is probably either atypical ductal or atypical lobular hyperplasia. They will excise it to make sure there is nothing worse lurking in there with the hyperplasia.

Annette47

jmb - sorry it wasn't completely B9, but glad it doesn't sound as bad as you were afraid of. (((HUGS)))

jmb5

Thanks for the encouragement everyone. I've been doing a little reading in the past hour about atypical cells. Looks like about 25% of the excisional biopsies come back as cancer. Maybe some cancer cells are hiding and didn't get taken during the first biopsy. I am feeling so frustrated. I was expecting answers... cancer or no cancer, and then I could plan what's next. I wasn't expecting to be in limbo and have to wait for another pathology report. I have an appointment with my surgeon tomorrow afternoon, so I'm sure he'll give me more details and schedule the next biopsy. I plan to ask him if atypical cells usually turn into cancer.

ballet12

Best wishes on the excisional biopsy. I've had atypical cells twice. The first time was 18 years ago, with both atypical ductal and atypical lobular hyperplasia. 17 years later, they found atypical ductal hyperplasia again. This time, when they did the excisional biopsy, they did find the DCIS, but thankfully nothing more. Atypical cells put you at risk for cancer. ADH is an early precursor, probably more common than we realize.

jmb5

I'm wondering what the statistics are for me since I've already had DCIS. I would think they would be fairly high that these atypical cells are a bad sign.

Beesie

So sorry that you didn't get clearly benign results! How frustrating to have to have this additional biopsy.

"I'm wondering what the statistics are for me since I've already had DCIS. I would think they would be fairly high that these atypical cells are a bad sign."

Well, yes and no. ADH and ALH do signify a greater risk to develop breast cancer. But since these cells are in the same area as your previous diagnosis of DCIS, it could be that you've had this ADH or ALH all along but it was too faint and never was spotted on your mammogram imaging. Maybe your previous diagnosis of DCIS was tied into this diagnosis of atypical cells. So these atypical cells could just be atypical cells but they just weren't found then (and I've heard that rads isn't effective only ADH and ALH - don't know if that's true). Alternately, these could be new ADH cells that have never developed (or not yet) beyond ADH (about 75% never do). When my DCIS was removed, along with the DCIS (and a microinvasion of IDC), there also was a lot of ADH that was still just ADH.

Good luck with the excisional biopsy. Hopefully this time you will get a clear - and clearly benign - answer.

jmb5

Thanks, Beesie! I hadn't thought those cells could be there from my previous diagnosis. I would think they were removed during the lumpectomy. I will ask my surgeon about that tomorrow. Getting my list of questions together. Does anyone know the difference between the stereotactic biopsy and the excisional biopsy? Is it needle vs. knife? And if so, what's the difference between and excisional biopsy and a lumpectomy?

redsox

Does anyone know the difference between the stereotactic biopsy and the excisional biopsy? Is it needle vs. knife?

Yes.

And if so, what's the difference between and excisional biopsy and a lumpectomy?

The differences are: what the surgeon knows going in, what the intent of the surgery is, and how big the area excised will be.

Going into a lumpectomy the surgeon knows that biopsy-proven cancer has been found, but going into an excisional biopsy the surgeon only knows that there is something suspicious.

The intent of a lumpectomy is to remove all cancer with adequate margins, but the intent of an excisional biopsy is to make a definitive diagnosis.

Because of the differences in advance knowledge and surgical intent, the area excised will generally be larger in a lumpectomy than in an excisional biopsy.

jmb5

Thanks, redsox. Great information!

ballet12

"Because of the differences in advance knowledge and surgical intent, the area excised will generally be larger in a lumpectomy than in an excisional biopsy."

It also depends on the size of the calcifications that they see on the mammogram when doing the excisional biopsy, although they aren't aiming for clean margins. In my most recent scenario, they took out approximately 4cm in the excisional biopsy, which to me seems like a pretty large area for an excisional biopsy. Going in, they only had the ADH diagnosis. Going out, they had all DCIS, with no clean margins anywhere. The DCIS was adjacent to the ADH (similar to Beesie's situation). Anyway, jmb, let's hope that you had only atypical cells still remaining from the previous "event". I had also read somewhere that ADH and ALH cells aren't sensitive to radiation in the same way that DCIS cells are.

jmb5

Interesting, ballet. So you were diagnosed with ADH, and they found DCIS during the excisional biopsy? Did you have extensive calcifications? I read on another post where someone said they had a small amount of calcifications, but a large amount of DCIS beside them were found from the excisional biopsy. Also, did you ever have an MRI? I'm wondering if it would do any good to have one now that I've met my insurance deductible.Right now, after already having DCIS, I'm feeling like an ADH diagnosis is no better than DCIS. It seems pretty close to being the same thing, and is definitely troublesome. I'm also feeling pretty depressed about the cost of all of the tests/procedures that are probably in my future. I know I can't put a price on my health, but I feel horrible about the hole I'm putting my family in again. A $3000 deductible, and a new year will be starting in 2 months.

Anonymous

jmb5, I have a $3000 deductible too.

Have you already reached your maximum? Would it be possible to wait to have the excisional biopsy until after the 1st of the year (obviously with docs blessing). After my biopsy which confirmed IDC, I waited 2 months for the BS and PS to coordinate their schedules to do my mastectomy. I would think they would okay you waiting 2 months in your case? Just throwing it out their as an option. I know it's hard to be in limbo.

jmb5

Susan, the stereotactic biopsy will get me to my deductible. They're pricey. I might as well go ahead and have the excisional now. If I need further treatment after the first of the year, I'll have to pay another $3000, but hopefully that won't happen. I am assuming they won't recommend a mastectomy if it's just atypical cells, even with my DCIS history. (Mastectomy is the treatment if it is cancer again.)

Anonymous

Wow, I didn't know that biopsy was so expensive. Crossing my fingers for no treatment needed after the excisional.

Beesie

jmb, I'm another one who had ADH on the stereotactic biopsy, and then DCIS (plus a microinvasion of IDC) on the excisional biopsy. But even my surgeon was surprised about that. He expected that it would all be ADH, which is what happens in about 75% - 80% of cases.

My mammo showed two distinct areas of calcs, and lots of calcs in both areas. So my excisional biopsy removed a lot of breast tissue, from two separate areas. There was DCIS throughout it, and there were no clear margins anywhere. That's the point at which I was sent for the MRI. The MRI showed that my breast was full of "stuff" - that's actually the word that my surgeon used. His point was that there was something there that the MRI was seeing, but there was no way to know what it was. He didn't expect to find any large amount of invasive cancer (although more microinvasions certainly would have been possible), he felt it probably was DCIS, but it also could have been just ADH or something fibrocystic. When I had my MX, it turned out that all that "stuff" was more DCIS.

I'm really glad I had the MRI. Although a lot of my ADH and DCIS showed up as calcs on my mammo imaging, there was a lot that didn't show up and was only seen by the MRI. If I'd proceeded based on the mammo image, I probably would have opted for a lumpectomy re-excision rather than the MX. That either wouldn't have resulted in clear margins, or worse, it might have delivered very narrow margins while leaving a lot of DCIS still in my breast. Since you've never had an MRI before, it is possible that these current calcs could all be part of the initial diagnosis - this ADH (or DCIS, if that's what it turns out to be) might have been there all along, but was not yet visible on mammo imaging.

By the way, at the time of my diagnosis, suspicious calcs were also found in my other breast. I had a stereotactic biopsy, and those calcs were totally benign - no ADH or anything. When I had the MRI, my other breast came out completely clear. So my case fit perfectly with what I've read about MRIs, which is that they aren't good at spotting benign calcifications, but that they are good at spotting DCIS, and particularly high grade DCIS.

Not sure if any of this is helpful or not!

ballet12

Hi JMB,  to answer your questions:

1."So you were diagnosed with ADH, and they found DCIS during the excisional biopsy? Did you have extensive calcifications?"  I didn't have extensive calcifications.  They were clustered. Only a BIRADS 4B.  Having previously had ADH, I wasn't getting too excited about it.  I put off that excisional biopsy for 7 weeks (wanted to go on summer vacation and swim, etc.) Don't forget that DCIS can be in areas that don't have calcifications.  The calcifications, themselves, aren't the DCIS, they are only markers that there might be something suspicious in the area.

2. "I'm feeling like an ADH diagnosis is no better than DCIS. It seems pretty close to being the same thing, and is definitely troublesome."  Well, I think that DCIS and ADH are different diagnoses with different treatment ramifications, although some researchers do group low grade DCIS with ADH.  High grade DCIS is a completely different animal from ADH, much more high risk for invasive cancer.  Low grade, might be closer to ADH. It is also sometimes difficult for pathologists to distinguish between low grade DCIS and ADH, and in those situations, a second opinion on the pathology is often recommended.  Now, I'll throw in something else.  Both times that I had a diagnosis of ADH (and the first time I also had ALH), the pathology of those specimens was labelled "severe", as in the ADH looked very abnormal.  So, I'm thinking that there may be an association between severely abnormal ADH and high grade DCIS (whadaya think of that, Beesie?). 

Anyway, I think you will be in much, much better shape if all they find is ADH, but you'll probably need to think about throwing in the towel and taking the Tamoxifen.  That's easier said than done.  After all, I had the high grade DCIS, and I'm (like you) not taking any hormonal as of now.  I was advised; however, if my last biopsy of the other breast (this past June) had been ADH or DCIS, they would have more strongly encouraged me to take the Aromatase Inhibitor.

Hope this helps. Best of luck with the excisional biopsy.