IDC, DCIS and LCIS in one biopsy

Tempy

Let me first begin to say I have been extremely frustrated by the process I have gone through with the first facility I have dealt with. Regular screening mammogram in December 2014, called back for a diagnostic mammogram in January of this year to look at a cluster of calcifications on the left and an area of density on the right. The right was ruled out as a "compression artifact" with no further consideration. The area on the right was suspicious and a stereotactic biopsy was recommended "just to be sure but 80% of the time it's nothing." The stereotactic biopsy was done in March and came back with 3 types of atypical cells in two core samples (they were unable to get more because lidocaine wasn't working). Because of the atypical cells, I was referred to a surgeon for a wire guided excisional biopsy/lumpectomy which was done on April 14 and again I was told that it was just a formality, that it was probably nothing. Post-operative visit less than a week later (April 20th) my husband and I were told that it was Stage I, non-invasive breast cancer, DCIS and LCIS and an MRI was ordered. MRI was done and showed areas of concern on the right and the left so next step is ultrasound. Ultrasound on the left showed infra-mammary lymph nodes and an dense area on the right so guess what ... another biopsy, at least this time it was ultrasound guided so it wasn't as horrible as the first one. The results came back as fibrocystic breast disease ... luckily benign this time!! But to go through so many procedures, trips to the hospital, facility, surgeon's office for just one more thing makes me want to pull my hair out! After feeling like we were getting the run around with this first facility, we sought out a second opinion from a highly recommended surgical oncologist.

The second surgeon requested and was provided a copy of the pathology slides, imaging and all reports. She took her time and did a full breast exam and manually checked the lymph nodes on the first visit. We discussed options and names of an oncologist, radiologist and plastic surgeon were provided and, to date, I have only had an appointment with the oncologist. The second look at the pathology slides is more than a little alarming. The first pathology report stated non-invasive ... the second report is stating infiltrating/invasive. How do they make that kind of mistake?

The meeting with the oncologist went well but I believe he went by the first pathology report, perhaps unaware that a second look was being done and stated that his biggest concern was of the LCIS as the cancer was small, non-invasive and the edges were clean. I have sent him a message and will hopefully hear back to see if the second report alters his opinion. He stated though that the lymph nodes should have been checked when they did the excisional biopsy because "if you're going that far you should assume it's cancer." So yay I get to have another procedure when it probably should have already been done to complete staging. Neither pathology report gives a grade (that I have seen) so will have to make a note to ask him about it.

The plan is for a bilateral mastectomy with reconstruction that cannot be done until sometime late July as I had recently started a job and short-term disability is only offered during "benefit fairs" in July and November. Hopefully they don't deny me because it's pre-existing even though it wasn't diagnosed until after I had started. The lymph nodes still need to be checked and I'm not a fan of having to keep getting put under so am inclined to wait until they do the mastectomies.

Holeinone

Tempy, your story sounds kinda like Rita Wilsons. ( T. Hanks wife ). She was told LCIS from the first Dr., had a 2nd opinion and next Dr. Said infiltrating Lobular Cancer. She had a mascetomy, but according to the press, no further tx was needed. Must of been caught early.

Lots if ladies here with more knowledge than I. I would guess it means that it is at a very early stage. I had a punch biopsy on the sentinel node, when they did the needle biopsy on the tumor. Just the local stuff & a Valium......

It's all a shitshow.....if you are able to avoid chemo, that is a good thing. My dx was/is stage 3, lots of Cancer in the axillary nodes. Chemo was a nightmare, but I would do it again if needed.

SummerAngel

I'm sorry for the trouble you've been through! I've had a similar experience. Needless to say I'm now scheduled for a BMX on June 1st and I will have no idea about node involvement until after the surgery. It's frustrating. Hugs to you.

Tempy

Thank you for the support, sometimes we just need to vent a little bit which I guess is why it got rambling ... that and I wrote it at 1:30 in the morning. A lot of appointments still to go but I think we're on the right path with the new team of doctors.

muska

Hi Tempy, if I understand correctly you decided to do BMX because something is not right in both breasts. The question is, why would one want to check lymph nodes in a separate procedure if BMX is in the picture anyway. I can think of one factor to take into account: reconstruction. If reconstruction is done at the same time as BMX but surgical pathology finds cancer in lymph nodes you will need radiation. Depending on the type of reconstruction procedure radiation may be more difficult to administer or result in some complications/delays down the road.

Tempy

The doctors are pushing to check lymph nodes before the BMX to have full staging. I don't want to go through another surgery/recovery when the plan is for a BMX in July/August.

Tempy

The doctors are pushing to check lymph nodes before the BMX to have full staging. I don't want to go through another surgery/recovery when the plan is for a BMX in July/August. As far as radiation, if I need it afterwards I know there's the possibility of problems but they're saying it wouldn't be until after I was well healed. At this point, I'm being told I'm a great candidate for nipple sparing mastectomy and given that option would like to be able to keep some semblance of "me" versus my reconstruction options being diminished with radiation first.

muska

Tempy, I hear you. I had nipple sparing BMX with immediate reconstruction. Nobody expected cancer in lymph nodes b/c the tumor was tiny and pre-surgery MRI was clear. I am still glad I had reconstruction done during the same surgery. The radiated side looks slightly different from the other one but this is not noticeable at all when I am dressed. If reconstruction were not done then I think I would still be working on it or going flat.

dtad

its illegal to be denied health insurance due to pre existing conditions

Tempy

I have the health insurance which went into effect early April, I just won't have a paycheck during my recovery as they don't offer the ability to sign up for short-term disability upon hire but do offer long-term disability *boggle* which kicks in after being off of work for 6 months. Luckily things go well and I won't have to be off for that long so that won't be an option.