type of biopsy to have with large area of calcifications

[mscharisma]

Hi,

I had a mammogram result of calcifications rated "2 - benign finding" in January. Repeat mamogram a couple of weeks with a new, better machine showed "breast composition extremely dense ... suspicious for malignancy but finding does not exhibit classic findings of breast cancer ... large area of calcifications ... consistent with sclerosing adenosis with or without atypia, versus low nuclear grade DCIS." BIRAD 4. The radiologist recommended surgical excisional biopsy vs. stereotactic technique since the area in question is about 5 cm above the nipple. (I don't know if that is diameter or across or what.)

Obviously, excisional biopsy is much more invasive, and at least right this minute excising a 5 cm area + clean margins sounds like a disfiguring thing to me while the language in the report seems to indicate a likely benign problem.

I haven't spoken with a surgeon yet, and I realize that no one but a surgeon having access to the x-rays can give a qualified medical opinion. Nonetheless, I was wondering if you might hae any feedback on the type of biopsy I should undergo and, if not a stereotactic one, could help me underrstand better why not.

Thanks much in advance.

[Montana girl 06]

I hear you LOUD AND CLEAR! The roller coaster of biopsies, 2nd and 3rd opinions, do this, no do that, etc. is very hard to bear. I totally echo your feelings having experienced the roller coaster myself several times. All I can say is, you're doing the right thing by becoming informed and questioning their info and decisions. I hope you can find a surgeon you feel comfortable with to help you make a decision on what to do.

[mscharisma]

Hi, Lisa,

Thanks for your reply and for following my story, even when I'm not writing in the best frame of mind and in various places. I keep an eye on both forums right now, but this one I find easier to navigate although it may contain less information overall. Anyway, I'm very sorry and also surprised to read that you were given no choice but to have a mastectomy, even prior to a biopsy. Did I misunderstand something? I have been told by the radiologist at the breast center (I'm starting to number them, she is R3) and the surgeon there (she is S1) that mastectomy is aboslute not an option if the chances of benign results are higher than those of malignancy. They will not do it. Period. I'm curious why in your situation you were told the opposite, especially since you're discribing your problem "only" (sorry, I can't find a better word) affected one quadrant of your breast. While my calcification area is smaller than yours was, so must my breasts be since I was told two quadrants would have to be removed to take it all out, which they refuse to consider prior to a confirmed malignancy or at least precancerous biopsy results. (Of course, the general surgeon I had consulted for a second opinion, i.e., S2, DID give me the option to take it all out and even suggested that I might speak with a plastic surgeon to see if he/she would suggest an even larger excission if it would help the cosmetic fix afterwards that I said I would want to have.) I just don't get this whole thing. I work in the healthcare industry for 20 years (though on the administrative, not the clinical end), and I have an above average IQ. While I'm definitely not a Ms. Einstein, one would assume I could get at least a half way clear idea from all these professionals what exactly my problem is, i.e., size and location of the suspicious or indeterminate calcifications vs. those they told me they know are benign and then figure out what to do.

Like I would imagine many women are, I am honestly terrified by the thought of a mastectomy or a very large excisional biopsy (am not clear right now if they see that as one and the same). But I am not sure if I'm not even more terrified by the ongoing worry I might have if I don't have it all removed and/or the constant, continuous follow ups, abnormal future mammos, and possibly more biopsies. Not to mention that there is no guarantee that I can afford this in the future. And if it takes the kind of runaround I've so far experienced every time and then waiting another 5 or 6 weeks for the breast center to finally have a surgery appointment available ... no thank you.

I'm hoping that when I see the next surgeon at a different breast center (S3), I will have better luck as far as my understanding goes. And I think, unless something about her will put me off completely, I will stick with her no matter what. The last four or five weeks have been the longest of my life, and I don't want to have to wait another two months for a biopsy result. This IS starting to wear me down.

So I can only one more time say thanks to you and everyone else who has feedback and is willing to share their experiences and, yes, as I see it, hardgained expertise to help us others out. And yes, we should have a cyber party!

Or you know what? Maybe we should start threads on all the forums we can find where woman post the names and City/State of Dr. and hospitals they had good experiences with? (Good experiences only!!) You know, almost like a referral system?

I hope you and everyone else continues to be well. Even though I'm usually so consumed with my own problems that I typically forget to mention it, but I'm sending you all lots of positive thoughts!

Silvia

[boninclyde]

I have read some of your other post on the other forum and have been trying to keep up here. Seems like your fitting into the normal medical field here. No one knows a damn thing. I had two doctors my PCP and my OBGYN tell me my little lump was nothing. But just a few days later after mamo I was told I had widespread microcalcifications measuring 12-15cm in the upper outter quadrant of the right breast, so for me my only options was masectomy. They still went on to do a biopsy which came back inconclusive and then the second one said DCIS. But after my masectomy they found a small invasion 0.09cm which now after doing much reading I believe was pushed the the ducts upon biopsy. I am not sure if there was invasion before the biopsies.Why with so much widespread calcification did they even need to do a biopsy?  I sometimes wonder if it is all in the pocket book. I am coming up on 1 year NED. Anyone want to have a cyber party? I wish you the best and hope you get answers soon. Vent here anytime.  Lisa

[mscharisma]

As always, thanks for your feedback and kind words. Ironically, even though I don't even know yet whether or not I have cancer, I find myself experiencing the same problems I have read other women mention who have been diagnosed, i.e., that your friends don't know how to deal with what you're going through and distance themselves. Hearing from a total stranger that she will keep me in her prayers does suddenly become the highlight of my day, and I thank you for that. from the bottom of my heart. To be honest, I'm right now going through a phase were I'm getting more and more angry. I understand that medicine is not an exact science and everybody and every situation is different. I also don't doubt for a minute that all the medical professionals I have so far dealt with (3 radiologists, two surgeons - third one scheduled next week - one plastic surgeon, and my PCP) have nothing but the best intentions. However, right now I cannot help but be very angry over the fact that I cannot seem to find two medical professionals that are agreeing on the extent of the problem or on how to approach it. Even the breast center radiologist (radiologist #3), with whom I discussed the excission of a 2 cm area versus the "entire" 5 cm area had to correct herself when, yeap, hard to believe but true, radiologist number 4 said, oops, you know, I just measured this and it looks more like an 8 cm meter problem. I mean, I have no medical background and I am hence not in a good position to pass judgemment, and I'm almost as lousy at math, but mistaking an 8 cm problem for a 5 cm problem results in one hell of a margin of error! I also realize that the size of the affected area  may not be of any importance whatsoever in the overall sceme of things or the outcome. But for me as a lay(wo)man it's bad enough having to understand all this medical **** while trying not to worry about what that all means for the rest of my life.without adding the additional worry that the professionals I depend on don't know what they are doing or, for that matter, can't use a measuring tape correctly. I'm sorry for having such a negative attitude at the moment, but looking at the overall picture of what has been going on in my "case" so far and the runaround I've had, I simply can't help it. Thanks for listening and for - hopefully - not holding it against me that I vented my anger here.

[Montana girl 06]

Sorry to hear the area is bigger than they thought. But, I'm glad to hear you're getting another opinion. These decisions are so tough, and we never know if we're making the right decision. I'll keep you in my prayers.

[mscharisma]

Thanks for your invaluable feedback. I will, in fact, take it with me for my next discussion with the surgeon. Interestingly enough, I spoke yesterday again with the radiologist at the breast center who informed me that they remeasured the area in question. They now told me that previous information was incorrect. The area in question is not 5 cm, but rather 8 cm across two quadrants, meaning I would basically need a mastectomy to get it all out. That in and of itself may change the picture, assuming that the new measurements are accurate. And now I'm switching or at least consulting another surgeon at another breast center to a) see what she says re. size and procedure to perform and b) because the hospital at which my current breast surgeon operates cannot schedule my biopsy until September 11. I'm hoping a different hospital can do it faster because I'm getting to the point where I'm grateful for any day I save myself in waiting for a biopsy result. Thanks for all your help.

[Montana girl 06]

I've had exactly the same experience! Three times I've had radiologists recommend removal of a large area of calcifications, but 2 different surgeons said no, there was not enough suspicion. Now I have 3 benign biopsies to back up that opinion that my new calcs in that area are probably benign. But, it's also part of the reason I continue to have problems.

On the other side, I think each of my biopsies has caused suspicious calcifications to form. So, removing the whole area still might not settle your problem if you are a person like me whose body continues to make calcifications.

If you explain your wishes to have the area removed to your surgeon he may agree to do it. I think they automatically look for the least invasive measures, but it doesn't mean they can't do more.

[mscharisma]

The MRI and ultrasound, as I understand it, are not able to detect/evaluate  calcifications that are much better to see on a mammogram. Apparently, these other tests may be better to look for masses and high-grade disc (MRI). That still leaves the question what's going on with those indeterminate calcifications, which is what the biopsy is for.

[ziggy123]

I am curious as to why they feel the need to remove anything is "nothing looks suspicious. Is the surgery  just for verifcation purposes?

[mscharisma]

Hi, again. I too currently have problems getting into "the other" forum, and I have yet more questions for anyone who might have answers. To catch up: Meanwhile, ultrasound and an MRI showed nothing suspicious going on. Just a bunch of complex cysts. Nonetheless, everyone I spoke with agrees that surgical biopsy is necessary. Now, however, they don't want to take the entire 5 cm area, but only about 2 sq cm. Supposedly that will provide a "representative" sample of what's going on. I'm not sure I understand that. If stereotactic biopsy isn't an option because it doesn't provide "the whole picture," how can excising less than half provide certainty? I had pretty much resigned to the fact that they basically remove the better part of my breast and I'll have reconstructive or whatever surgery done aferwards to fix me up and be done with the whole thing (of course, assuming benign results). Now the 2 cm thing is throwing me off. If such a large part of the potential problem remains in my breast, won't that mean constant follow-ups and continued worry about the remaining calcs, especially if scar tissue may make the whole thing more difficult to evaluate in the future? The breast center folks say that in a situation with likely benign results, they will not remove the entire area for biopsy. It's just not what they do. And of course, it's preferrable to have a less or non-disconfiguring surgery done, but I really want this all to be over with. Any thoughts or experiences?

[Montana girl 06]

I saw on the other breast forum that you had a question about the 2 different types of biopsies usually recommended for calcs. For some reason my password won't work on the other forum so I'm back here with my answer. My first biopsy for calcs was excisional, marked with 2 wires (located after maaaaaaany mammograms) and then removed surgically. The radiologist marked a very large area with the wires. When the surgeon came in the room he said he just got off the phone with the radiologist to discuss the area. He said if he took out all the tissue marked by the wires it would be almost 1/3 of my breast and that would be a major surgery. So together they decided he would remove 2 smaller areas. My breast tissue filled in well and other than firm scar tissue in my breast and a barely visible scar my breast looks fine. Five years later I had a stereotactic. That was shorter and less invasive. With both proceedures I had to be careful for about a day and not jog or do heavy lifting for a few days but I didn't think either proceedure was that bad. BUT, we have come to the conclusion that my problem with calcifications very likely is related to my previous biopsies (I also had a benign lump removed 9 yrs. ago.) All my biopsies and calcs were/are in the same quadrant. Plus, the scar tissue makes my mammos more difficult to read (in addition to my very dense breasts.) I am not anxious to have more biopsies because in my case they seem to cause more suspicious looking calcification clusters in my breast in addition to muddying my mammos with the scar tissue. Just another thought for consideration. But, when it comes to making a decision about biopsy vs. 6 month follow-up, I listen to my surgeon and tend to take his recommendation.

[mscharisma]

To stick with a radiologist/lab I trust is good advice. Believe me, I will follow it! And no, they did no ultrasound. Thanks for bringing that up. Another question I will ask the surgeon(s). Just have to wait right now to get another radiologist involved. I can't do that until after my appointment with the second surgeon on Tuesday since I have the originals of the x-rays and need to bring them to that appointment. After that, they can go to a lab for a second opinion from a radiologist. Wouldn't be surprised if I'l be back here with more questions after that. :)

Thanks for all your help.

[Montana girl 06]

I hope all goes well at your appointment. Keep us posted.

[mscharisma]

Yes, you are right, this is exactly what happened. January mammogram on film, June digital mammogram, which does explain a lot. However, in my situation, there were any number of other inconsistencies in the reports (I posted the whole thing already in the user forum and don't want to swamp the whole site with my story) and their delivery to me (or lack thereof) that I am simply not able to trust their content or the recommendations made as to the biopsy. (January BIRAD of 2 was changed by second radiologist to 3 without any explanation whatsoever and report contained no information at all about the findings other than "benign microcalcification" (end of finding); in June, one biopsy recommendation by the initial radiologist was later deemed by a second radiologist to be a procedure that supposedly doesn't even exist, those kind of things.) In fact, I cannot even get a clear answer if there was indeed an increase or change in the calcifications of any kind from January to June.

So yes, I am looking for a second and, if necessary, third and fourth opinion to get a better idea what exactly the xrays show and what is recommended. I simply do not want to have a relatively invasive procedure and sacrifice a large portion of my already small breasts if I'm not convinced it is necessary, and most certainly not based on seemingly questionable information. (BTW, my previous post was unclear due to leaving out a few words: the clacification is 5 cm IN SIZE AND above the nipple.)

I have seen a surgeon at a breast center today who preliminarily evaluated the xrays and didn't see anything alarming in the xrays right off the bat. She will set me up with a radiologist at the breast center to go over the xrays, and we'll go from there. She is generally in favor of a breast tissue conserving/noninvasive approach even with large areas of calcifications unless, of course, the radiolgist will see anything that counterindicates that. I'm hopeful that the radiologist at the breast center will be experienced with the issue of film vs. digital mammogram findings, and I will, in any event, consult yet another surgeon for an opinion.

Thanks for sharing your experience with this. It is very helpful.

[Montana girl 06]

I'm so glad you're able to go to a breast center. Once you get a surgeon and radiologist you trust, it would be best to go there for future mammos. My calcifications continue to be a problem at every mammogram. That's why I ask for 1 specific radiologist to read mine. However, he was on vacation the last time and that's why the other radiologist did the initial report recommending biopsy. I assume they will recommend a 6 month follow-up mammo for you whether you have a biopsy or not. They do like to keep a close eye on our calcs. Also, did they do an ultrasound to make sure there were no masses?

[Montana girl 06]

Was your January mammo done on film and the recent one with digital mammography? If so, the new digital machines show so much more detail,  and that needs to be allowed for. My experience in switching from film to digital this year was that I was told I needed an excisional biopsy (BIRAD 4).This first radiologist said he allowed for the more detailed pictures and the increase in calcifications was still significant  I asked another radiologist to read my films and he said the increase was due to the clearer picture. He gave it a BIRAD 3. (I've already had 3 benign biopsies, 2 for calcifications.) I don't mean to confuse the issue, but a 2nd opinion never hurts. I found out from my surgeon that radiologist 1 was over cautious, recommending more biopsies with the new digital. My surgeon felt radiologist 2 was more experienced so I went with the 2nd opinion. It sounds like there's a significant learning curve to reading the digital mammos, and lack of experience can be a problem.

I also know from experience that a radiologist might recommend a large area of calcs to be removed and the surgeon may feel the area is larger than necessary in light of the low chance of malignancy.

I hope you can get your questions answered to your satisfaction by your surgeon.

[Cleveland Clinic]

Dear mscharisma:  There are pro