Got a call back today :(

OldOakTree · December 2012

After alternating MRI's and mammograms every 6 months for the last 9 years without any major problems I got a call back today to go back for more views. Apparently there are calcifications on my "good" side that weren't there previously. My only consolation is that they are on my good side, so I don't have to second guess my decision of forgoing radiation on the bad side.

I feel so sick about this. I had a 3-D mammo last Dec which was good, an MRI in June which was good and now something has sneaked in. My films always show scattered benign calcifications, I guess these new ones have some cause for concern.

From what I am reading about 3-D there is supposed to be a much lower rate of false positives. This concerns me greatly of course, making me think that it won't be a false positive but a true positive.

When she first called me this AM she said the next available appt wasn't until after Christmas but called an hour later and said she has something tomorrow. I don't know how I ever could have waited another 2-3 weeks.

I just need a shoulder to cry on.

CTMOM1234 · December 2012

Hang in there, those calcs can most certainly be absolutely benign! I know, I've got 'em too in my "good breast" -- there's all sorts of reasons why they appear that have nothing to do with bc, so while the 3-D imaging may be more accurate in detecting calcs, that does not mean they are a cause for alarm.

Oh I totally offer you a shoulder to cry on because the stresss of those call backs is just not something I handle well! I only have diagnostic mammos and ultrasounds -- it means hours of waiting in the waiting room, watching people come and go, but it seems they always want me to have "just a few more pictures" which if I weren't waiting there would mean I'd be getting the stressful call back. Thank goodness they can get you in tomorrow, just one awful night's sleep, but it seems inhumane to expect that after receving a call back one is expected to wait 2-3 weeks.

Focus on the great 9 years of good news, and hoping all continues

OldOakTree · December 2012

ctmom - thank you so much for you kind, kind words. It is so stressful. I sure hope they will give me results tomorrow, right there. I used to go for mammos where I could get the results before I left. It usually only took an extra 15-20 minutes. This was great because I didn't have a call back and if everything was fine I knew it before I left. Then my doctore decided I should get the new improved 3-D and where I go for that does not give the option of waiting it out in the waiting room.

If she didn't call back to change my appt I was going to call my doctor and tell her she must call them on my behalf and get me in ASAP. You are right, 2-3 weeks is absolutely inhumane.

OldOakTree · December 2012

Update -

I went back and had 2 more films taken. The technologist was so nice, she even asked me if I wanted to see the pictures. No one has ever asked me that, it always seems to be so mysterious behind that shield. Then she took them up to the radiologist and came back in about 15 minutes and said the radiologist says they appear to be benign and she would recommend waiting 6 months and then having more pics taken. She asked if I was okay with that and I said not really so she asked me if I would like the radiologist to come talk with me. I was really flabblergasted because again nothing like this has ever happend.

The radiologist couldn't have been nicer. She said they have been watching these since 2008 (I had no idea!!) and they were stable until now. There are a few calcifications in one area, not clustered though, and with this reading there are 2 additional ones, thus the callback. All appear to be round and she doesn't see anything alarming. With my history though, there may be reason to do a biopsy. She said she could could understand that and wouldn't be against it.

All in all, it is fairly good news so far and I feel guilty writing about it here when others are getting worse news. But I can't help but to feel scared and wonder where the next step will take me. I've already done my googling on this and see that round is good but increased is not. I stopped at my surgeon's office before leaving the building and I'll be seeing her next week to discuss the next step.

I do not want unnecessary surgery but neither do I want to go back in June for my mammo and be told there are even more and now a biopsy is a must. And we are talking a lumpectomy/excisional biopsy, I'm not quite "big" enough for a stereo.... (can't spell it).

Any thoughts or ideas?

CTMOM1234 · December 2012

Congratulations on the benign results! See, told you, told you, told you ! You should most certainly NOT be apologizing for writing about it here -- yes, others have worse news, but others have better, and others have the same, we're all in this sucky club that we didn't ask to be in, at least you have someplace to connect and learn and vent and all that!

How we all live day in and day out under the radar is such a personal thing. Once diagnosed, the doctors are much more guarded about dismising anything -- so they aren't going to give you the option to hold off on a biopsy unless they really feel it is OK. For me, I always prefer less medical intervention. In other words, lumpectomy rather than mastectomy if given the choice, monitoring via mammograms and ultrasounds rather than biopsies, etc. I've had a fibroadenoma (completely benign bugger in a different quadrant) that they've been monitoring since a year before my bc diagnosis and I am so glad I never messed with it, it's never gotten bigger and has even shrunk.

It really depends on your own personal risk level. FOR ME I'd take the path of least cutting. I've already had a false positive mri which led to a mri-driven biopsy of my "good" side, no one asked me if I was willing to wait 6 months, so I did it because it seemed likely that it could have been something (which thankfully it was not).

What next step will help you best sleep at night?

OldOakTree · December 2012

I've pretty much decided I will have a biopsy, I don't see this as "benign" but more as "it could be benign." With my DCIS I had a good sized chunk removed and there was no mention of normal tissue in the pathology report. It said something like "remaining tissue is atypical ductal hyperplasia, sclerosing adenois, and a whole lot more that I don't remember. Yeah, it was benign but heading towards malignant. I have no reason to believe that the rest of my breasts aren't like that.

Now I find there is an area they have been watching on the other side. I wish I had known this earlier. Whatever it is that is going on in my breast is obviosly some kind of change, thus the increase of calcifications. And I don't think that things change for the good and create calcifications at the same time.

So unless my bs can give me a real good reason for not having a biopsy along with a good reason as to why I have these I want the area removed and I want to know for sure what is going on in there.

Am I being unreasonable?

proudtospin · December 2012

no you are not unreasonable, but if I was me, I would ask for a 2nd opinion which for me is my onco! I ask her all the time before signing off on my mamos (which are ordered by my BS out of a dif hospital.)

while at times having docs at 2 dif hospitals is ...a pain in the whatever, they do know each other, work well together and when I need a second opinion......got it!

0000 · December 2012

Knowing what I now know, you are NOT unreasonable. You will feel more relived knowing the results of a biopsy. That is really the only true way to know. Hope you get some piece of mind soon.

~Jenifer

CTMOM1234 · December 2012

OldOak - Whatever you decide is absolutely the right decision -- no, you are not being unreasonable, inner peace is so important! Hope your meeting with your bs gives you all of the information you need!

Beesie · December 2012

I think that both options - waiting 6 months or having the biopsy - are reasonable. If you are more comfortable having the biopsy, then that makes sense.

It certainly could be that these calcs are a sign of DCIS. Or maybe not. The thing to remember is that 50% of women develop calcs. About 95% of calcs are benign. Your calcs have been stable since 2008. That would suggest that they are most likely to be benign. Benign calcs don't turn into cancer. Now a couple of new calcs have shown up. Those might be random unrelated calcs that have developed for one of the many reasons that calcs develop in women's breasts. Of course, it's also possible that the calcs that have been stable since 2008 always were a sign of DCIS or ADH that was sitting dormant for all these years and now has finally come out of dormancy, with the development of new calcs. That's the other possibility.

When I was diagnosed, I was found to have suspicious calcs in both breasts. It turned out that my right breast had ADH, plus 7cm of high grade DCIS, plus a microinvasion of IDC. The biopsy of the calcs in my left breast were benign. So I had a single MX. That was 7 years ago. At some point I know that I might develop new calcs in my left breast; if I do, since I know that the original calcs are benign, any new calcs would be unrelated to those. And any new calcs would have a 95% chance of being benign, and a 5% chance of being cancer. Your situation might be very much the same.

Good luck! Let's hope that this turns out to be a false alarm.

Got a call back today :(

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