Feedback on follow ups/screenings

Nancy44 · October 2013

I have repeatedly read here and elsewhere that ILC is harder to detect and "sneaky". Since lumpectomy and re-excision for margins (still LCIS in the margins even after 2nd) I no longer see my BS; just her nurse practitioner who I really don't care for. She is very dismissive with questions and concerns; such as my last mammo being normal, but stated in the report twice that mammography is limited due to heterogeneously dense tissue. So when I asked about 6 month intervals or if rotating mammo, Ultrasound and MRI was an option she basically just looked at me and said no, not necessary. She said LCIS is nothing to worry about, many women have it and don't get cancer. That's good news but I did have cancer and do have LCIS; you would think screening would be bumped up a notch.

I'm not so sure I agree and am pretty sure I'm changing surgeons but before I go making something out of nothing, would love to know what your BS suggests? Sis is now considered "high risk" of course because of myself, grandmas and other health issues. She has mammo and BS appt. every 6 months so makes me nervous that I'm going to miss something.

I do see the MO every 3 months, he does quick exam as well as blood but no tumor markers. No scans unless symptoms present.

Thanks for any input; I don't think I'm being paranoid; I just can't stand the thought of missing something due to someone not wanting to do the extra work.

Rdrunner · October 2013

for lobular my surgeon does mri, did one before my surgery and was schedule to have another one for check up next month but now i have had the other breast removed also no need. The standard for bi lateral masectomy is clinical exam and thats it.. not comfortable tiwht that at all

MelissaDallas · October 2013

i just have LCIS but had ovarian cancer also. They alternate six month mammos and MRIs on me.

Anonymous · October 2013

nancy----I have LCIS and do alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. Did you have any radiation or chemo for your ILC? I would think since you've already had ILC, they would watch you very closely. but ironically they may feel the chemo or rads have "taken care of things"; my mom had to see her oncologist every 3 months for quite a while after her radiation, lumpectomy and rads for ILC, eventually it decreased to every 6 months, then once a year.

Anne

mary625 · October 2013

Do what your mind and heart tells you is right for you and your body. I cannot emphasize that enough. There are more and more stories of women's health neglected by failure to provide appropriate screenings. This week I have traveled from the East Coast to Texas to get the kind of screenings that are appropriate for my diagnosis.

I would not be comfortable with that approach either. ILC is rarely going to show up on a mammogram. LCIS does turn into ILC. You and I are examples of that. My tumor had ILC, LCIS and DCIS in it. No, I would not be comfortable knowing that some of the LCIS was left in there.

MelissaDallas · October 2013

the thing about the LCIS is that there is probably always going to be some left there because it tends to be diffusely through both breasts.

sgreenarch · October 2013

This is a subject that interests me, as I can't find consensus. You'd think there'd be a standard of care for ILC surveillance but there isn't. I read as much as I could and then decided to do what made the most sense to me (how many decisions do we have to make in this journey that seem to require at least a few years of med school?!?!) I have a mammogram every December and then an MRI every June (in other words, a scan every six months.) I've had to argue w the ins company (once) about approval for an MRI and then have a dr ask me why I'm insisting on mammograms if I'm getting an MRI. Well, one of the two tumors at dx was missed on the mammogram and only seen on the subsequent MRI. As for mammograms, my BS insists on them as he said they see things like calcifications that MRIs don't. So, though I'd love to skip the nerve wracking experience of having these scans, I'll continue to insist on getting both. I think that since ILC is not that common, it's not given the attention that idc is given. I've seen that we must be our own best advocates, and that's why I'm tailoring follow up in a way that seems to be my best bet. I think we all need to think about this disease in this way. Our docs see lots of patients, and though they can be very caring and smart, they can be tired and give general instructions based on the average patient.

Anonymous · October 2013

The only info I can share here is that my radiologist, who read my pelvic US last year, told me that MRIs are the gold standard for dense breasts and ILC. I had both. However I've had two breast MRIs since my dx and sadly neither one showed the mild hyperplasia ILC that was discovered in my post-BMX pathology. Personally I'm glad I went with my BMX -- good riddance.

Claire

wallycat · November 2013

I think you have to listen to your gut and know your body very well.

I also opted for bilateral mastectomy and when I read the news reports that blather on about women "over-reacting," I cringe.

My concern is that since I cannot have a mammogram or MRI (no breasts), fundamentally, there is no screening for me except to go by symptoms. In a perfect world, I wish they could scan me from top to bottom via CT and/or MRI, but then I also have to consider that CT scans are extra radiation that is cumulative and MRIs require dyes that are not risk free either....

We've been dealt a crappy hand and I wish technology would catch up to my worry level!

vlnrph · November 2013

If you have dense breasts and a history of ILC, periodic MRI is a perfectly reasonable follow-up procedure. It sounds like Nancy44 also has some family history to consider. As our friend from Israel states above, we have to advocate for ourselves and lobular is not the "garden variety" breast cancer.

Perhaps consultation with another doctor would be helpful. Once you have an order, the insurance company may try to deny coverage which means you need to be prepared for that battle. I was recently successful with my appeal so it is possible to prevail.

vbishop · February 2014

So what is the follow up for those of us that have no "real" breasts anymore? My percentage of distant recurrence is only 7%...but 7% is high enough for me!

I can still do self exams to check for recurrence at the surgical site. I have my new girls now (which are amazing, by the way) and my PS says no more mammograms.

I meet with my oncologist in March. I know he will do blood work. What is he looking for? I don't know if he will do annual MRI or PET.

Thanks in advance for your feedback.

Momine · February 2014

Claire and Wally, same here, especially on cringing at the "overreaction" articles. Not to scare anyone, but at DX I had a giant tumor in the right breast. They did mammo, 3D U/S, MRI with contrast and CT in the course of DX and staging. The left breast showed clear on all of those, except for 2-3 tiny calcifications that everyone swore were benign. I "overreacted" and insisted on BMX. The path showed extensive LCIS and other pre-cancerous junk in the left breast. I still have a high risk of recurrence, given my stage, but at least I don't have to stress over how to screen my boobs, nor do I have to endure constant mammos and biopsies. I consider that a win.

vlnrph · February 2014

Vbishop, the physical exam is probably the main follow-up for a very early stage, no node situation like yours.

My oncologist does labs but I had chemo which has a risk of myelodysplastic leukemia (like TV's Robin Roberts). He also watches my calcium which tends to run on the high side of normal. If it went up more, I might start worrying about bone health. Annual MRI or PET is expensive and insurance companies would probably deny unless your family history or symptoms indicated otherwise.

vbishop · February 2014

Thanks vlnrph -

A little scary, only because ILC is such a sneaky sucker. My largest tumor had close margins...negative, but less than one mm. It wasn't because the surgeon did a bad job, it was because of the location of the tumor. He got all he could. Doctors considered radiation to be on the safe side, but the radiology oncologist said it wouldn't buy me much (maybe lower my risk of recurrence from 7% to 5%) and that the negative side of radiation wasn't worth it. The decision ultimately was mine, but all my doctors recommended against it. And I agreed with them. I think 7% is a nice number. Wish it were 0, but that is a pipe dream for anyone with breast cancer. Hope that decision doesn't bite me down the road.

vbishop · March 2014

Had my follow-up with my oncologist today. Now I know how we're going to watch for recurrence:

Initially - blood work every six months, looking at liver enzymes, bone stuff, etc
Physical exam - checking along the incision line, under the arms, etc.
Self exam along the incision line
Let him know if have any concerns
No imaging - it's not necessary
My risk for recurrence is very, very low
Because I am concerned about the close margin at the chest wall, he ordered a mammogram (they do special ones for us with implants), really just for my peace of mind, that I will do before my next visit in September.

Fortunately, all of my doctors, including my primary physician, keep each other informed. I can't sneeze without my medical team knowing about it. Love that I have a "team" on my side!!

Feedback on follow ups/screenings

Comments

Categories