?'Graduating' from followup with an oncologist/breast surgeon?

leaf

?'Graduating' from followup with an oncologist/breast surgeon?

leaf

I have classic LCIS, nothing worse, diagnosed in 2005. I was not impressed by my annual visit to my medical oncologist yesterday. (I get a clinical exam every 6 months, the alternate one by my gynecologist.) The said medical oncologist gave me the option of being ? 'off-clinic', which I guess means I wouldn't see her anymore. (She did not use the term 'graduating'.)  I had trouble taking this in, because I was also getting pathology results from Major Medical Center about another possible rare condition which could affect my cancer risk situation. (The pathology report said I do not fit said rare condition, different from what was implied by another doc.)

We work at the same hospital.  (I'm a pharmacist.)  There are big changes going on at the hospital, and she asked about looking forward to retirement.  I felt like she was saying 'You aren't worth my time anymore.'  I would have thought that the potential of me having another rare condition which would have increased my cancer risk would have made me somewhat interesting.  My former oncologist, who was in practice for several more decades than my present one, said he had only seen a handful or two of LCIS patients.  I realize that most LCIS patients prior to sometime in the 1990s probably got bilateral mastectomies and were not offered tamoxifen or antihormonals, so wouldn't be seen by a medical oncologist unless they got DCIS or invasive breast cancer.

She did inquire about the timing of my appointment, but the timing of my last mammo and visit was what _she_ had requested, because the facility had not given me an appointment.

Although I did take 5 years of tamoxifen, I am not sure if she saw the medical articles that opine that the risk for LCIS women does not go down for your lifetime. I have seen no papers that opine that the risk for LCIS patients goes down over time (although of course the information is quite limited.)

The NCCN guidelines are for LCIS are annual mammograms and bi-annual clinical exams.  I realize this does not specify oncologists or breast surgeons.  She said it was my option, and I do have an appointment with her next year, but I am not impressed.

Do DCIS/invasive breast cancer women 'graduate' - in other words, are no longer followed by an oncologist/breast surgeon? 

 (From what I understand, at least in some circumstances, the lifetime risk of breast cancer for some people with DCIS and/or invasive breast cancer does go down.  I'm sure the initial risk for some/most people with DCIS and/or invasive after treatment is much higher than the initial risk for LCIS women.) 

Has anyone else heard of this?

MelissaDallas

Leaf, I was absolutely outraged by my first appointment with medical oncology on referral from my breast surgeon and the high-risk clinic. She felt like (and I agree) that my history of PE was directly attributable to my being so ill & not being able to eat because of a 20 pound ovarian tumor that went all the way to my xyphoid process. Instead, they pooh-poohed the referral and said I just had a tiny focus of LCIS and should " get on with my life" and basically not worry my pretty little head about it. Now, since we know LCIS is usually multifocal, that was an ignorant statement. Now the surgery dept. keeps pushing another referral to consider Aromasin. I'm still so pissed at them that I can't make myself go back.

Anonymous

Leaf-----my mom was closely monitored for several years following an ILC diagnosis (lumpectomy, radiation, ALND, and 5 years of tamox), weaning down over time from every 3 months, to  6 months, then 9, then yearly, and then basically back to regular screening mammos (diagnosed over 27 years ago; fortunately, she has never had a recurrence). The risk with invasive cancer does goes down after 5 years (greatest risk of recurrence is within the first 2 years) ; the risk with LCIS does not go down over time.  I have been seeing an oncologist since I was diagnosed over 10 years ago and will probably continue indefinitely. (I am not followed by a surgeon currently).  She does a physical exam, monitors my Evista use , coordinates my MRIs and mammos, updates my prescription as needed, and we revisit the topic of risk, BRCA testing, and PBMs (usually due to my questions/concerns).  Initially, they felt my lifetime risk was 36.6% and my 5-year risk was 4.8%;  (although said it was a "guesstimate" as the risk assessment tools do not allow for LCIS); now she thinks it is still about 31% (I guess adjusted for age, since 10 years have gone by).  She actually said "good news! you don't need MRIs anymore, since your breasts are not dense!" at my appt in Dec. Here I really thought she had a good handle on LCIS. So I had to explain to her that I was not having MRIs due to breast density (I don't have any density problem at all, breasts are all fatty and easy to read on mammo; but good to know that she realizes that MRIs are good for women with dense breasts)--I have MRIs due to the LCIS and my family history of ILC, both of which are very sneaky and not usually found on mammo. (and sometimes not found on MRI either). and given that my risk is at least 31% (and may be even higher, we don't really know), she agreed that I should continue with yearly MRIs.

Anne

leaf

Thank you so much, Melissa and Anne.

Melissa - I have the suspicion that some of these docs really are not up on LCIS.  Are you followed by a breast surgeon?  Or another oncologist?  Or another physician specialty/generalist?

I would guess that Anne and I are about the most senior (farthest beyond diagnosis) LCIS-and-nothing-worse people who regularly post here?  Are LCIS women 10 years out after a PBM followed by oncs/breast surgeons?  I would assume they would theoretically have the lowest breast cancer risk post-LCIS diagnosis (although there probably isn't any significant data.)

Anne - If it isn't too personal of a question, does your mother still see an oncologist or breast surgeon?  Or does she get yearly mammograms through her general practitioner/internist/gynecologist?  Does your doctor think your risk numbers go down due to your completion of  tamoxifen/Evista courses?  I guess my doc could say that since I've taken 5 years of tamoxifen, that my risk might be about 50% of ?30% -> 15%, which isn't that much different than 13% in the general population. (Those 50% risk reduction numbers were only for early on, and they don't know these numbers worth beans.)

I will not enjoy seeing a doc who does not want to see me.

MelissaDallas

Leaf, I'm treated by UT Southwestern Medical staff at a high risk breast clinic in our county hospital and am followed by a breast surgeon. These are the same folks who staff Simmons Cancer Center which is an NCI Cancer Center. If they aren't up on it, nobody is. I just happened to get lucky to be seen by a little twerp who had just graduated from med school in Grenada.

They even see five cases or so a year of the mucinous ovarian cancer I had, and it is very rare. Speaking of follow ups, there is a less than 5% chance of recurrence with that, but I still had two years of quarterly follow ups with tumor markers & exams/pelvics and will continue for three more of semiannual. the LCIS is higher risk than that. To me, we're higher risk f/u than DCIS, because it is generally all removed.

farmerlucy

Leaf - For my IDC I seem my onco regularly through year 5, with the option to see her once a year to year ten.

farmerlucy

Leaf - For my IDC I see my onco regularly through year 5, with the option to see her once a year to year ten.