Waiting and Waiting. Is it taking too long?

labelle

I'm new here and have posted a few times, but mostly I've been reading a lot. 

Here is my story so far, I was diagnosed w invasive breast cancer on Monday, Sept 29th of this year-routine mammo ordered by gyno gone bad-diagnosis via stereoscopic needle biopsy. Fortunately (?) I was at home with a migraine when they called rather than in my office. Oh, that would have been so BAD. 

Anyway, my gyno referred me to a local surgeon with an appt in 2 days (Wed. 10.1). In the meantime I did a lot of research and had questions ready. The surgeon told me all breast cancer is the same, he could try for a lumpectomy but implied I was kind of silly for wanting to have breast conservation since I am all of 51 years of age. He declined to answer many of my questions and told me I would probably be happier going to a breast center. We (my husband and I) certainly agreed and pretty much ran from his office.

My gyno then referred me to UT Breast Center and Vanderbilt (since I said I wanted two "real" opinions-that first consult did not count IMO). Vanderbilt got me in for surgical consult on 10/13 and oncology consult on 10/14. UT's breast center did not want to even see me before I'd had an MRI and they scheduled that for 10/16 however Vanderbilt will not accept and MRI from UT (only their own) and my insurance will only pay for one. Fortunately, UT will accept Vanderbilt's. Canceled MRI at UT, am now scheduled for an MRI with Vanderbilt on Tues Oct 21  (this coming Tuesday). They will share result with UT, then another surgical consult with Vanderbilt surgeon on NOVEMBER  3 after he's seen the MRI and a consult (finally) with UT Breast Center re: surgical and oncology options (they do a team consult of my records then I meet with the team surgeon to discuss all aspects of treatment) on NOVEMBER 4. This is 5 weeks after my diagnosis! My Notingham scores were all 1, ER+/PR+ / Her- per first testing (FISH result pending but expected to be negative according to oncologist). Have been told my cancer is mostly tubular, not terribly aggressive, unlikely to have spread to nodes, no idea how big it is / limits of stereoscopic biopsy, that the MRI should tell us more, that I've got time to make good choices, yadda, yadda, yadda, but I feel like I have a ticking bomb inside of me!

I like the surgeon okay at Vanderbilt, though he did not seem very concerned about cosmetic results of lumpectomy (my choice if possible). Loved the radiologist and her plans (radiation, tamoxifen, removal of ovaries-I'm perimenopausal-to allow use of aromatase therapy)  skip chemo if my Onoctype score is good and no nodes involved. Does this sound reasonable to you? 

Looking forward to the consult with UT if I can keep my wits about me that long. Is this a really, really long time to wait or what? 

Thanks for reading. I'm starting to understand why these boards are so busy. Just writing it all  down is fairly therapeutic, although any input from those who've been there/done that would be greatly appreciated.  

MelissaDallas

It's not. It seems pretty normal around here for additional testing and appointments to take a couple of months after diagnosis. With rare exceptions, like inflammatory breast cancer, a few months makes very little difference. They estimate most cancers have been there for years before they get big enough to show up.

dlb823

labelle, it sounds like you're doing exactly the right thing getting an appointments at both Vanderbilt and UT.   If you read my bio, you'll see why some institutions don't accept MRIs done elsewhere, although I am surprised that Vanderbilt wouldn't take one from UT.  But it sounds like you've gotten it all figured out, even though it must have been kind of frustrating initially.  And I think it will be well worth having two opinions and a choice of medical teams to compare before going forward.  And with the info' you have so far on your stats, it doesn't sound like waiting a couple of weeks more should be an issue.  Tubular is a pretty indolent bc.

As far as the cosmetic results, it seems like very few women actually need plastic surgery after a lumpectomy.  Of course it has a lot to do with a woman's size and how much tissue needs to be removed, but highly competent breast surgeons know how to get good cosmetic results with a lumpectomy.

Good luck, and let us know what happens!   (((Hugs)))  Deanna

Anonymous

I would definitely get a 2nd opinion before having ovaries removed. (it's irreversible, and there's significant SEs from immediate surgical menopause).  They may have other meds you can take for your bc without having to remove the ovaries,

labelle

Actually, I'm not too concerned about having my ovaries removed (maybe I should be) as I haven't had a period since July, already have night sweats and hot flashes regularly-not horrible, but not pleasant. Being perimenopausal seems problematic re some therapies are good for postmenopausal, others for premenopausal and the oncologist seemed to think hormone suppression to avail myself of various therapies might be more problematic than just having them removed, although she said if I were 30 or even 40 ovarian removal would not be good option. Mine are pretty much on there way out anyway the way I figure it and she said it surgery could be done laparoscopically ( I had a tubal years ago and recovery was nothing)  but I  will definitely ask about that (and many other things) at the UT consult. Thank you.

And thank you to everyone else for responding. Relieved to read that this is a normal, albeit very slow to me, wait time for any actual treatment to occur. I keep thinking about those cells multiplying and dividing everyday. UHH! I just want it gone, but I do know the decisions I make now may be critical so I need to make the best ones possible. 

labelle

Had an MRI today (not as scary as I'd feared) and genetic counseling w a blood draw for BRCA 1/2 testing (pending approval of my insurance company). My mother died of breast cancer 8 years ago, so they think my insurance will approve the testing. I feel like it really needs to be done for my daughters (both in their twenties now). Anyway, I finally feel like we are moving along and hope for good things from both tests. 

Also heard from my sister-in-law today. She had a mammogram shortly after I did and then a needle biopsy. Her path results show triple negative breast cancer and she has surgery scheduled already for the Nov 3.  So glad things are moving faster for her, as it seems like hers is a diagnosis that demands faster action-she lives far away and has an entirely different set of medical providers.  I feel so bad for my husband. Having both a sister and a wife w BC has to be really hard.