MRI pre-treatment at Kaiser in SF area; any experiences?

percy4

Thanks to ballet12 for suggesting I start this thread to get some advice.  I live in Marin, just outside SF.  I am with Kaiser and cannot afford to go outside for an MRI.  After reading much, I want an MRI before lumpectomy.  Prefer a RODEO MRI, as there seem to be many fewer less false positives, but will take any MRI for the breast if I can get one.  I know I have been "diagnosed" by 2 punch samples (only 2 as the area is so small) with low-grade DCIS, but knowing there are MRIs out there, do not feel fully diagnosed.  When I told MO I'd like one, she said it's not indicated.  When I told her I knew women at Kaiser who've had them even pre-biopsy, she said they probably had a family history or somehing.  They did not.  Am seeing 2nd opinion breast surgeon tomorrow, so need answers ASAP, please, and thank you.  Anyone with Kaiser in SF area (SF, Marin, Santa Rosa, etc.) have an MRI pre-treatment, was it a RODEO or not, was it at least a breast MRI  and not a regular MRI machine, which facility, did you have to request/ fight for it, and, if you feel like saying, who ordered it?  Thank you all so much.  This appt. is my LAST STOP before proceeding.

Rhiannon78

hi there: i just had an mri guided biopsy at Kaiser South SF today. It's not a rodeo but is a breast mri. I dont think Kaiser has rodeo machines? Biopsy was recommended based on 2 followup mri's in april & nov of this year after my diagonosis last year of dcis on right side & adh on left. Had a lumpectomy in jan on the right side, no rad no tamox, no treatment on left even though Surgeon in santa clara breat center recommended excisional biopsy on left; i requested mri's as follow-up after consulting with Lagios who said to watch the left and wait and see. 1st mri in april showed "area of enhancement" on left., however not in the same area as the original mammo/biopsy found. Follow up mri in nov, at which time this area was still enhanced so had biopsy today. So now waiting to see if this is anything. Radioligist today said she hates diagnosis of adh since it generally leads to surgery even though it may ever develop into anything dangerous, but they feel compelled to cut it out and look to confirm that nothing worse is in there. So now i'm waiting for results again, and really hoping no more surgery! Will have to consider tamox if this dcis or even adh. Good luck on everything and keep us posted.

Rhiannon78

also, i guess to answer your question, kaiser may not do mri's prior to surgery unless there is some additional compelling reason. Surgeon agreed to mine after lumpectomy & path report and when I balked at excisonal biopsy on left after consutling Lagios

Blessings2011

Kaiser does not have a plethora of MRI machines.

I know this because after seven different biopsies, my Radiologist REALLY wanted me to go to San Francisco for MRI's on both breasts. She was that concerned that she might be missing something in one or the other breast.

I appreciated her perseverance, but it would have meant a three-hour trip for me. And by that time, I had already decided on a BMX instead of a lumpectomy, so it was a moot point.

wyo

- as with all things like MRI, linear accelerator etc- it does not make sense for every single Kaiser facility to have every single modality. Having regional referral centers means they do a lot of the testing/procedures, are specialized and see many many studies versus every site doing some. I am not aware of RODEO technology in NCAL though UC Irvine and some SCAL locations have it

Rhiannon78

just posting again to say that MRI guided core biopsy results came back and everything is totally B9! They radiologist called me the very next day (I love Kaiser!) Not even ADH, so I'm glad I took the "wathcful waiting" approach when my surgeon suggested excisional biopsy earlier this year for what was supposed to be ADH. There were conflicting reports form the original core biopsies, one said ADH, one said nothing worrisome so,after consulting with Lagios, it made sense to wait a few months and have the additional MRI imaging and track the area of concern. Nothing against my BS, but as they say, if you are a hammer everything looks like a nail, so I can see why she wanted to take a larger sample back then. I'm sure they've seen many cases where it turns out to be more than ADH upon excision. So I am basically off the hook for another year! Percy4, please update as to how things are going for you, and best wishes.

ballet12

Yes, Rhiannon, there can be upgrades from ADH to DCIS. My second dx of ADH (by core bx) had an upgrade, but also, the ADH diagnosis was clear as a bell: "severe ADH" as read by 6 pathologists.

Glad you are off the hook for awhile. I definitely endorse the watch and wait approach. I won't even be having MRI's as part of surveillance because of those false positives (although I'd have to say that I would want it.)

percy4

Good for you, Rhiannon!  Lumpectomy in a few days.  Got the MRI; nothing was visible, including my low-grade DCIS diagnosed by calcs (visible on mammo) and then core biopsy.  That was weird, but, as Beesie pointed out on another thread, I think, calcs don't show on MRI, and neither does most low-grade DCIS.  Went back to my path report from biopsy, and see that of the only 2 punches taken (as area is so small) only one showed low-grade DCIS, the other was normal.  Two sets of path eyes at two different Kaiser labs saw the DCIS, the first diagnosed it as such, the 2nd checked for markers, ER status, etc., which I can't imagine they could do if it wasn' t really DCIS.  Can they tell ER status of just normal tissue, or even ADH?  I don't think those have an ER status, do they?  If two different pathologists had not seen it, I would have asked for that.  I've had a strong feeling from the beginning that what I have would have never changed, so am feeling my body about to be invaded.  If I'm right, especially if nothing shows at all I, will wonder if maybe it wasn't really DCIS to begin with (unlikely to have DCIS all "gotten" in one pen-tip sized punch biopsy).  If I'm wrong, well, we all know the answer to that.  Don't want to be wrong, and won't feel real happy if I was right.  Don't feel I have much choice now, as the area has been pierced, and for some reason that makes me uncomfortabe, although I've read repeatedly biopsy doesn't spread DCIS that may have never changed.  It does break the milk duct.  In fact, the abnormality in first path report which caused it to be sent to other Kaiser facility for a double-check for micro-invasion (not) says right on the report that "the atypical focus appears to have been traumatically introduced into the tissue by the biopsy".  I will be going to Dr. Lagios for 2nd opinion on lumpectomy path report, to decide on rads, but would feel better if he'd seen the biopsy path stuff, too.  Still, again, how can two pathologists both see DCIS, and one go on to do markers and ER status if that's not what it was?  It IS bothering me that this may be being over-treated, but it would appear that at least one punch-sized piece of DCIS was in me; that should justify lumpectomy.  Agreed, all? xx

percy4

I know I  have to, was just venting.

ballet12

Hi Percy,

Hang in there, girl! You're almost there. A bunch of people on the DCIS thread had tiny amounts of DCIS which were removed in the core biopsies. It's possible that that is your story as well. You are right, they can't do estrogen receptor assessment on ADH or normal tissue. It's a special dye that looks for specific responses in the DCIS tissue. Anyway, if you are going to do the second opinion with Dr. Lagios, he will absolutely need to examine both the core biopsy pathology and the lumpectomy pathology. They should both be available for him.

You may very well be spared radiation and maybe even hormonal therapy, but you do have to do the lumpectomy. It's just not yet standard of care to "watch and wait" once the DCIS is found. At some point that may be true.

percy4

Thank you for that.  As I said, I've had a strong feeling always that I was not ever going to be in danger.  This is not denial; it's an awareness.  Still, I can't "know" it, medically.  I guess you are saying (I think) that you agree that if two paths diagnosed DCIS, it's probably true.  I needed to hear that.  While so many of you wonderful women have gone through many surgeries, etc., I think everyone would agree that if even one surgery was not really needed, it shoud not be done.  So.  OK.  I'm trying to prepare for either something more being found, only low-grade DCIS being found, or nothing being found after lumpectomy, and still thinking I had no choice, safely, but to go ahead.

Rhiannon78

hi percy, my situation last year with dcis on the right side sounds a lot like yours...i had 4 path reports: one from kaiser redwood city where the stereotactic was performed, one from kaiser santa clara when i decided to go there for lumpectomy, one from ucsf (kaiser surgeon sent tissue samples there to "break the tie" on diagnosis between dcis/adh), and finally, after lumpectomy was performed, i sent both biopsy and lumpectomy samples to Lagios.

When i met with surgeon before lumpectomy, she said that she actually couldn't see any more calcs on the post biospy mammo, and that since i has such a small area, it was possible that pretty much everything was taken out during biopsy! However, they still recommended lumpectomy to get wide margins and confirm that they had gotten all the nasy cells, since i had made it pretty clear to them that i was going to skip rads if at all possible.

Long story short, had the lumpectomy, got wide margins. Can't find my surgical path report right now, but i seem to recall that there was maybe a tiny single focus of dcis in the middle of the sample, no adh or anything near the 9mm margins. Recovery from surgery was a piece of cake, no problems, my scar isnt bad. I too have small breasts, but one year out there is only a bit of a dimple when i lift my arm where they took the chunk out.

I guess what i'm saying is i had similar feelings, didn't want to over treat, but am glad to have the offending crap out of my breast and feel good about no rads/no tamox (which was supported by my kaiser team as well as lagios).

Hang in there and let us know how everything goes. When and at what facility is your surgery scheduled?

Rhiannon78

also, just wanted to note that the ucsf pathologist said that the biopsy sample "failed to meet the criteria for dcis" and was classified by them as adh. So it could be argued that had i been getting treatment there instead of the more conservative kaiser, i would not have had a lumpectomy, but perhaps only an excisional biopsy ( not that there is much of a difference surgically speaking: one is a diagnostic procedure and one is is to remove tissue with good margins that has been diagnosed as cancer). However, lagios agreed that there was a tiny area of dcis found in the lumpectomy sample, so in the end i'm glad i had it taken out since 3 of the 4 path reports felt it was indeed dcis.

ballet12

Hi Percy, I'm not necessarily saying that if two say it's DCIS it's gotta be DCIS. It most likely is, but as Rhiannon said, even if it were ADH, they'd still need to do surgery. It would be called an excisional biopsy and not a "lumpectomy" and they wouldn't be striving for clean margins (because it's not "cancer"). That's exactly what I had. My stereotactic biopsy showed only ADH ("severe" ADH). It was read by 6 pathologists (all working together). Then I had the excisional biopsy. The titanium marker had migrated away from the spot, but they were able to find the calcifications and they also have a recording of the location. When they went in with the "excisional biopsy", they found loads of DCIS. So, even when they definitely say it's ADH beforehand, you still need the surgery. On top of that, you'll have Dr. Lagios review everything. No matter what, the surgery won't have been done in vain.

Go for it. You'll be fine, and if all goes well, that may very well be the only treatment you need.

percy4

Thanks so much for the input.  I feel like that's probably going to be my story, too.  If I had even a stage one, I would not be so upset about appearence (of course!), but I feel that taking a walnut-size from my little breast for a speck is an awful lot.  I have an "A" cup.  Are you that small, and besides the "dimple", is the size of your treated breast noticeably smaller than the other one now?  Did you have an olive-to-walnut size taken out?  I just want to be prepared, if one breast is going to be smaller than the other.  Thanks. - P.

ballet12

Hi Percy, the breast has a way of "filling out" or filling in the hole after they take tissue out. I don't have an "A" cup, but I have now had six surgeries on that breast. There was nothing really noticeable after the first two, other than small fading scars. Now, yes, but it's a more extreme situation after six, and I asked for wide margins.

ballet12

You will also need to give it time to heal, before you can see what the final result is.

When is the surgery, again?

percy4

Thanks, ballet, again, for all your caring advice.  My surgeon has a "specialty" of sewing the lumpectomy together in layers under the skin, to avoid the dent, which might have later naturally "filled in".  That's the only way she closes.  There won't be anything to fill in, but it makes sense that if you take volume out of something, then sew together the dent, the remaining whole volume would be less.  Just wonder if in Rhiannon's case, she had a simillar-sizd lumpectomy, and/or breast, and if she ended up smaller on one side.  A little dent seems almost better than two different-sized breasts.

percy4

Sorry; forgot to say.  It's Wed. xx

percy4

As you can tell, I'm not big on surprises these days (have had enough, lately).  Don't mean to sound too vain, but just had a box full of hard-backed books fall on my face from a high shelf 4 mo. ago; broke my nose in four places.  Has healed, but not as attractive as before.  Maybe I'm a little sensitive to body changes right now.

Rhiannon78

hi there, for the record i too am an a cup (was a b cup at some point, but i shrunk!). I can't really say a year out that my right breast is noticeably smaller than the left. Maybe a little, but for me not enough to worry about. The scar is fading, but still visible. I don't have a dent at the scar line which is near the top of my breast, but more of a small dimple is visible underneath when i raise my arms and look for it.

Try not to worry, my guess is that yours will be a pretty straightforward deal. Sounds like the broken nose would have been more traumatic:-) my path report says they took out 22 grams of tissue (5.5 cm X 3.5 cm X 2.2 cm). That's a bit bigger than a walnut, but as i said, i was insistent on wide margins and not really concerned about post-op appearance. And really, even with my small girls, i don't miss it!

percy4

Thanks, Sweetie.  Yes; the face was traumatic  Just feeling a little too physically messed-about lately.  I'm pretty sure that, in reality, it won't be too big a deal, physically.  Or medically, either, I hope. xx