Mammogram after a BMX? ...okay,then.
I understand their reasoning even if I think they're overreacting as I had my BMX as a prevention method not because I already had cancer, as I still have my nipple, but I can't seem to convince radiology that nipple grafts don't stretch the same way a nipple left on the pedicle after a more traditional nipple sparing mastectomy. The high risk specialist is insisting on one to get a "post-op baseline", but I could tell her what it is: "There is no breast tissue because the breasts were removed."
Radiology keeps assuring me they can 'pinch and stretch enough tissue to fit into the plates' and I keep telling them that's not possible as I had nipple grafts and the pedicle is gone, so my nipples, while not flat, are NOT stretchy like a nipple on the pedicle is.
The radiologist's logic was, "Well we can do mammograms on men, so I'm sure your nipples will stretch enough." Completely unrelated things; mens' nipples are usually still attached to the pedicle and are, thus, stretchy.
Well, no, they won't...they're grafted and not stretchy. I tentatively, lightly pinched the little nub itself to see how stretchy it was, and it hardly moved. There's no way they'll be able to stretch it to get it between the machine's plates without ripping it clean off my chest.
My PS's reaction over the phone--I called her immediately after getting off the phone with radiology--was silence, followed by, "Are you serious? Are they serious? They can't be serious. You haven't got any breast tissue left, what are they planning to mammogram?!"
That was my reaction too, especially after I explained to them that grafted nipples aren't stretchy like nipples from a nipple sparing mastectomy (as those are still usually attached to the pedicle) AND that even if they were, you can't be yanking, pinching and pulling on grafts less than four full months after they were done, but the high risk breast cancer people are adamant I have to have it done despite it being impossible since the place I go to doesn't have a wand, they just have the "stretch nipples to get pinched in the plates" method.
I may have inadvertently started a battle between my plastic surgeon (who is adamant, as am I, that you don't handle nipple grafts even remotely roughly for a minimum of 6 months) and radiology, and I fully plan on canceling the mammogram the day before as radiology told me I could do so if my grafts 'still feel sensitive' and the high risk specialist will just have to cope with it at my next appointment. That is, of course, if she hasn't already called over to radiology to chew them out about it.
I'm not exactly frustrated by it, it just is a bit silly to me and I feel like it's a complete waste of radiology's time to try and do something that I know they're not going to be able to do.
Comments
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They can do ultrasounds instead.
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I suggested that or MRIs, as my insurance covers both for high risk BC patients but, for some reason, got a whole mess of pushback from the doctor in the high risk department.
She seems dead set on mammograms, which are a physical impossibility.
Chatted in person with my PS today and they're going to call down to Radiology and up to the high risk doctor and explain exactly why this can't be done, so that should help.
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Wow. The phrase that comes to mind is, "Just say No." lol
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Yeah, I had a followup appointment with my PS this morning and one of the first things she asked was if I was actually serious that I'd been told I had to have a mammogram.
I told her I was, we discussed it, and determined what I already knew:
1) Nipple grafts are not (and will never be) stretchy like a nipple still attached to the pedicle, thus making a mammogram a physical impossibility for me. They'll have to order an ultrasound or an MRI if they feel it's that high of a risk (and whether I do that or not depends on whether my insurance company will pay for it).
2) Less than 4 months from surgery, it would be dangerous to the graft integrity if someone were to pull/yank at them to try and force them to stretch; I'd run the risk of damaging the graft or even tearing it.
She told me to cancel that appointment, then let the high risk doctor know why and said if I got any pushback or the doctor had further questions about it, that they were to contact the PS' office to discuss it further, but under no circumstances was I to let them try and stretch my unstretchable nipples into a mammogram plate, especially less than 4 months out from the graft being done.
SO FAR no pushback. I stopped by radiology on my way out to cancel and explained why both to the appointment coordinator (who left notes) and they went and got a radiology tech so I could explain it to them as well. I even stepped around the corner to show her just how little 'stretch' they have (like, if you pinch the nipple nothing moves, really, and even a super gentle tug clearly shows that there is no stretch to them anymore) and told her that wouldn't change as they're grafts, the pedicle is gone, and they're flatly and firmly attached directly to the surrounding skin.
She said she was pretty sure they didn't have equipment that could mammogram that--no wands, aside from ultrasound and she wasn't sure if insurance would cover that, or anything--and thanked me for canceling rather than trying something I knew wouldn't be possible and taking an appointment time that someone else could have better used.Haven't heard back from the high risk doctor yet; last message I got was that her receptionist "passed the information along".
She kind of makes me head tilt a bit, because she knows they're grafts; we had a follow up last week to go over the pathology report and she looked them over to see how everything was healing. She's seen them AND touched them.
Honestly, I chalk it up to it being a non-routine way of "nipple sparing"; my breasts were too large to do a typical nipple sparing mastectomy and trying to do so would have left me with a lot of extra skin and a "permanently perky" look along with quite a lot of skin folds around the nipple itself where they'd have to tuck in the extra skin, which I didn't want.
I'm fairly certain she's never come across nipple grafts before as they're not all that common in mastectomies done to prevent breast cancer, and her entire focus is with high risk breast cancer patients, but dang, if she'd just have listened to what I tried to tell her no less than three times, there wouldn't be any of this silliness!I'm not angry or even really all that frustrated about it all, it's just kind of ridiculous and a little funny to me.
I do understand where high risk is coming from, because nipples are still technically breast tissue, but man, are they being dim about it.
I did briefly consider getting a pair of silicone breasts to take in with a, "Okay, here are my breasts, go ahead and mammogram them!" but I'm pretty sure radiology wouldn't appreciate that.
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I agree with the above poster. The important issue here is that you are absolutely the captin of this ship. You have decided no mammogram. Just say no -and if the radiologist continues to argue tell I would him/her the discussion is ended.
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I do not recommend mammograms on any women who have undergone bilateral mastectomies regardless of nipple preservation. Studies demonstrate that the risk of malignancy recurrence under a nipple is remote (with clear margins) and can easily be identified by physical exam, ultrasound or MRI in high risk patients. Mammogram is painful and unnecessary. I am sorry you have to fight for this when your physicians should support you. Be strong and find yourself another radiologist. Take care.
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LeslieMemsicMD, even if I wanted to continue to have them (for some reason!), it wouldn't be physically possible for me unless they had a wand/ultrasound type device to get the imaging.
Since my nipples were free grafted back on (my breasts were too large and saggy for a traditional nipple sparing mastectomy to give a good cosmetic result), they are no longer attached to the pedicle, and therefore have no stretch to them.
There's just not a physical possibility of them being 'stretched' into the mammogram plates, which is what the high risk doctor was assuming we could do; she'd never encountered a patient who had kept their nipples but didn't have a traditional nipple sparing mastectomy (where they're usually left on the pedicle and are still able to be stretched like a nipple on a normal breast) and I had to actually get her on a conference call with the plastic surgeon to have the PS explain everything I'd already explained to her.She wouldn't believe me, but she believed the surgeon who did the reconstruction and they decided to drop the recommendation that I continue to get mammograms after my BMX as they're physically impossible for me to get done anymore. I really do understand where she was coming from but man, did she ever make it hard to get through to her on the reality of the situation. I don't blame her for not knowing, even doctors can run into something they've not seen before--in her case, it was someone with grafted nipples--but it was a bit annoying that she gave so much pushback and refused to admit that she might be incorrect.
I hadn't planned to go through with it regardless, as I knew it wasn't physically possible (my original plan was to 'keep' the appointment and just cancel it a week out), and my PS' response to hearing it was, "What? *a few expletives* No way. No possible way. It's unnecessary and it's physically impossible, the grafts won't stretch like that and they can't be tugging at grafts less than 4 months out from surgery anyway. If she gives you pushback again, set up a call with both of us and I'll set her straight."
Fortunately, the PS set her straight and there's no more talk of trying to do mammograms.
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