A lot of tests - still no definite answer!

Roxanne218

In Feb. I was given a full body PET/CT scan for another health issue. It came back with a 2.6 uptake on a 7mm lesion in my right breast. I went on to do an ultrasound, regular mammogram, and breast MRI. All were negative. Now they're recommending I do the fairly new 3D mammogram, which I've read is only slightly more accurate than the regular mammogram! This is so frustrating and I'm wondering if this next test is even worth it. I know that the PET/CT scan can show false positives, and it's looking more and more like that's the case because of the other tests I've had all coming back negative. What would you do - have this next test and add more radiation to my poor body, or pass on it for now? I keep saying to myself that enough is enough, and I've been happy with the results from the 3 tests, especially the sensitive breast MRI I did this past week. Even that was negative.

fishfish

It is very frustrating I can hear you. I'm the same. From my family doctor feeling some bumps on my breast to now undergo biospy in the hospital. I did three ultrasounds, two mammograms and one biospy. Even if the biospy result is negative they still want me to do the mri focuses on the non-biospy site. But they are not non cancerious base on previous result. The process makes me feel testing is worse than getting cancer itself. Seeing all the sick and sad people in the hospital just creeps me out thinking I will be the same

Egads007

Rox - frustrating with a capital F for sure. In your shoes I’d do the 3D. Imho exploring everything single avenue to err on the side of caution is worth the very minimal risk, and the radiation is minimal. I know it seems endless, but the thought would be hanging in my head like unwanted clothes in the back of the closet. Only knowing I’d done every test and came out negative would convince me of the PETs false positive. That’s just me, it’s such a personal decision. Keep us posted please!

Fish - as a survivor I have to say you hit the nail on the head! Along with waiting, the tests are worse than hearing the bad news. I was relieved at diagnosis, able to go forward. Being in limbo sucks!

Hugs to both of you

Recap

I had 2 mammo's within a week plus ultrasound, then chest xray for unrelated issue 4 mos later, then 1.5 more months went by, then repeat mammo at time of biopsy followed by mammo-guided biopsy followed by repeat mammo after biopsy, all in one go, and then mri 1 month after that. No radiation from ultrasound and mri (not sure whether contrast is radioactive?)

Biopsy was benign. Did you have a biopsy already, or is mammo-guided biopsy what they want to do next? They dont use clear language with patients-for example radiologist used the word "sampling" with me and I immediately responded by asking whether he meant biopsy-he had already turned and was walking out of the room....lol his back went poker stiff/straight when I asked.

 I, like you, had very small mass that was long and skinny (or short and wide lol.) The long part was ~7mm. I had an exposure that increases the odds that my issue was only present for ~5 months before microcalifications were noted on routine mammo. I can't wait for my next uber-mammo (Sept) to see what time has wrought since my biopsy/calc removal.

I have the advantage of working there-so I poured over all of my images. There is a difference between routine and enhanced mammos. You want them to be able to see the calc patterns and count the calcs and more importantly be able to compare those images to the images on whenever your next go-round ends up being.

I was disappointed by the ultrasound tech when it comes to scanning all tissue, but she did identify my lump adjacent to the known calcifications. I was disappointed by the mri images/report. I was not disappointed by mammograms. 

Egads is right-the urge to have it done will hang in your head nagging at you.

You could however let some time elapse like I did? For one thing if # of calcs aka cell death is increasing, a delayed imaging session might prove that upon comparison of old and new images. 

 

[Radiology people wear badges that keep track of how much radiation they have been exposed to. I wonder if anyone gives patients a badge... One of my coworkers has this new watch that is amazing-temp pulse oxygenation ekg yada yada. I think it cost $350 and with a dr's prescription she was able to use her flex benefits to pay for it. I am now wondering if those watches do, or can be programmed to, measure radiation exposure-but since radiation is everywhere in our natural lives I would want to be able to turn that feature on and off so I could only measure radiation from my radiologic testing. lol the watch is probably radioactive to a degree...] 

Roxanne218

Mammo 2D I had done showed no calcs. I'm thinking what if I go have this 3D done and it also shows nothing? What next? A biopsy? I know breast cancer is nothing to mess around with, so I'll probably do this to help finally get an answer..... maybe get an answer.

Recap

The 3D magnifies. Either your lump hasn't had time to cause calcs, or calcs might be so small they can't be seen on the 2D. If the 3D shows nothing, they may not offer a biopsy, and just have you repeat the 3D in ~6mos (because you have a lump.) I don't know what your other health concerns are, but PET scan is big-time imaging, so you must have other indicators already.  Err on the side of caution. 

Egads007

Rox - One step at a time. It could possibly lead to biopsy but it could also lead to putting the whole thing to bed. Unfortunately it’s a process!of elimination that takes time (while taking a chunk out of your sanity). Try to take comfort in the fact that your docs aren’t brushing it off and being vigilant. I’ve seen plenty of folks on here pushing for answers with docs that brush off their serious concerns. Yeah, you want it done and over, we want that for you too...it’s just going to take stressful time. We’ve got your back. Keep us posted please. Hugs n’ luv.

Roxanne218

Finally ended this fiasco with great results! Had the 3d mammogram yesterday (wow, did she compress hard!), and radiologist required one more while trying to come up with a final diagnosis, with 6 compressions in all in my right breast. Sore today, but putting this to bed feels great! Good luck to everyone.