Diagnosed & Waiting on enough information to make decisions

Vermonster

On 4/30/18, I had a routine annual mammo (I am 46). That same day I had an ocular migraine (2nd ever) and my annual Ob/Gyn visit (get all the fun done in one day!) - based on the migraine, my ob/gyn switched me off Nuva Ring onto Errin bc pills (the minipill). Since that day, I've had the needle biopsy by a BS with diagnosis of Invasive Mammary Carcinoma, no specific type, 2.3 cm spiculated mass, moderately delineated. I am er+, pr+, her2/neu- (1st test was equivocal, FISH test said negative), the Oncotype dx is in progress to decide if neoadjuvant chemo is appropriate, I'm also waiting on the genetic results (significant family history of BC: maternal aunt, great grandmother, cousin and OvCa: mother), I had a mapping MRI of both breasts - that report says it's invasive ductal carcinoma and there are "several" satellite lesions (one is identified as about 8mm and is about 1.3 cm away from the primary lesion). All my BS has talked about is neoadjuvant chemo followed by lumpectomy. He hasn't yet answered if I should go off the pill. He seemed surprised when the MedOnc said no to neoadjuvant chemo unless the Oncotype DX score is high enough (not sure what that score is). I don't yet have a next appointment with the BS. But I have a second opinion appointment scheduled for next week with a SurgOnc at a much larger facility. Thank you for letting me vent, suggestions appreciated.

gb2115

Waiting for the oncotype results before making a chemo decision (for hormone positive cancers) is pretty much standard of care these days I think. Sounds like you are on the right track! Hopefully you won't need chemo!! I'm surprised they have left you on the bc pill being estrogen positive. Have your OB/GYN or Onc weighed in on that? I was told I can't use any kind of hormone bc being ER/PR positive.

NotVeryBrave

I wouldn't take any type of hormone pill with a hormone positive cancer. You'll have to use something else for birth control from now on.

With multiple tumors in place, NAC might make a lumpectomy more feasible. However - they do still remove about the same amount of tissue. It's good that you can get the Oncotype now. A lot of people don't get that until after their surgery. And the risks of chemo are not worth it if it's found to be a low number

I'm always in favor of second opinions!

Moderators

Hi Vermonster, and welcome to Breastcancer.org,

We're so sorry for the reasons that bring you here, but we're really glad you found us. As you can already see, our Community is full of super helpful members, always willing to offer information, advice and support. We hope you'll join us often, and feel free to vent as much as you'd like! We've all been there!

Looking forward to hearing more from you soon. Let us know if you need anything at all.

--The Mods

Vermonster

Did just hear from the BS responding to my follow up email asking the bcp question again and he said definitely time to stop taking the pill. Also now have a plastics consult end of next week to review those options before I have to make a decision. Progress, even baby steps, is good. Better than feeling totally out of control.

Vermonster

Update: Met with 2nd opinion SO who pulled strings and got me in same day with the plastic surgeon and who also ordered some same day bloodwork, including CA125 (for OvCa). She was fantastic - her style of explanations is much more suited to what I need so I switched to her care going forward. She is hooking me up with an OvCa SO to discuss ophorectomy. Genetics results are back - no negative findings. Bloodwork came back ok (CA125 not elevated, liver & kidney panels fine). Still waiting on Oncotype DX (next week, they say). I hate waiting. I'm not a patient person. I'm staying busy at work. Still not telling anyone, and absolutely hate polite chit-chat right now.

Decision seems to be coming down to UMX or prophylactic BMX. Would welcome thoughts on that issue from folks (and any other thoughts)... Thanks!

Lula73

regarding MX, that is something you will need to de ice for yourself based on which option leaves you with a feeling of peace. If you choose to reconstruct, know that there are options besides implants called DIEP and SGAP that use tissue from your tummy or upper butt to create new breasts that look and feel natural. If you go with mamts know that you have the option of under the muscle or over the muscle. Under usually means tissue expanders followed by implant exchange months later. On top can usually be do e at time of mx. Same with natural tissue recon - it can be done at time of mx. Also check to see if skin/nipple sparing mx are viable options for you. Better recon results if so. I chose BMX with Immediate DIEP and would do it again in a heartbeat. If you have any questions, please feel free to ask.

Vermonster

Lula - thank you for the input - I'm evidently in a category where I don't have enough tissue to use my own, so there go those options. SO should be able to do nipple/skin sparing, so that's good. Plastic surgeon thinks he can immediate reconstruction under the muscle, assuming SO doesn't find anything to suggest he shouldn't do that. Just got word my consult with SO for OvCa (re: oophorectomy) is set for June 21. More waiting. UGH.

NotVeryBrave

Hi there - Why are you pursuing removal of your ovaries if no genetic mutation was found? Just curious.

And I agree that waiting sucks!

Lula73

Quick question, Vermonster...why do you say you obviously don't have enough tissue for natural tissue recon?

Vermonster

Lula - the plastic surgeon said he wouldn't recommend me as a candidate for using my own tissue for reconstruction, he was concerned there wouldn't be enough tissue there for symmetry. I'm slim(ish) with C cups. He thinks there would be a better result with implant(s).

NotVeryBrave - I am premenopausal with ER+/PR+ and they need to either put me on chemicals to force menopause or take out the ovaries to induce surgical menopause - I don't need to preserve my fertility for any reason - my mother died of ovarian cancer - - there's a significant family history of breast cancer, too - I'm doing a consult with the SurgOnc for OvCa to see what her recommendation is - even though the genetics don't show any mutations, that's only for what they can currently test for - my aunt was tested in 2014 and at that time, they could only test for something like a dozen and my test was for 21 - who knows how many they'll be able to test for in a few years - we shall see. It's not decided or official yet.

Lula73

Vermonster-gotcha! Does that PS do natural tissue recon? If not and if you want it vs implants you’re better off consulting with a PS who does do them as they’re the only ones who are qualified to evaluate you for it. There’s also the option of stacked flaps if not enough in your tummy area. Just throwing that out there.

NotVeryBrave

My mother's twin sister had ovarian cancer. I also have a lot of cancers in my family - prostate, pancreatic, lung, breast - and negative genetic testing, too. You never know what they'll know down the road.

I'm perimenopausal - no periods since chemo ended them almost a year and a half ago but almost 52 as well. I was prescribed Tamoxifen only. I guess without periods, my ovaries are quiet enough!

Vermonster

NotVeryBrave - yay for quiet ovaries - I'm still waiting on the results of the Oncotype DX - if the #s are low, chemo for me is unlikely (perfect timing on the new Tailorx study for me) - the Oncotype results are due Monday. I am signed up for the OvCa consult 6/21 (but on waiting list if earlier appointment is available). Hurry up & wait.

Vermonster

Hi Lula73 - yes, the PS does do natural tissue, and a whole lot of alphabet soup reconstructions - I've looked at those as an option and for a variety of reasons, I don't think they're necessarily for me (I'd be more tempted by going without reconstruction)... there's now almost too many options, it's overwhelming....