Left+ and Right-???

howdidigethere · April 2014

Left+ and Right-???

howdidigethere · April 2014

Previous HX of ovary removal
(1981), melanoma (1988) no rads or chemo, IVF for 3^rd DD (1997),
2007 & 2008 atypia (left). Took Evista for 3 years. On Feb 3, mammo
showed 2 areas of calcs followed by 2 stereos (left). DX of ADH and
differential DCIS. Original GS planned excisional biopsy April 3.

Chose different GS and scheduled
for March 13 (left). The IDC is small at 1.5mm and DCIS listed at
1.8cm. ER+ >95%/PR + 40-45%, HER2-. Need larger margins, rads
because against chest wall and SNB. Easy Peasy.

MRI on April 1. Left corresponds
to surgery with seroma. Right showed nothing on T1, T2 but enhancement
shows 5.6cm x 4.8cm asymmetric area. Area covers nearly the whole chest
wall but does not appear to invade. Small breasts. Lymph nodes appear to
be clear. Over and over I’ve said right has symptoms, inverted last
6 mo. and occasional bloody discharge since Feb 15. GS says not related?

Ultrasound biopsy (right) on
April 7 with small sampling due to size and hard to visualize. Large hematoma
after biopsy. DX of intermediate/ high grade DCIS with minute foci of central
necrosis and lobular involvement. ER- /PR-, HER2 not tested. GS
wants to be aggressive with the surgery on right, MX, and go ahead as planned
on the left. Or BMX. If BMX, I would prefer immediate
reconstruction. Surgeon suggested SNB as a separate surgery as
malignancy may inhibit immediate reconstruction. Can’t get that done
until April 25!

Concerned about the ER/PR
differences, difference in aggressiveness, and the size of the enhancement that
GS feels needs to be removed therefore MX preferred. Should I give up on
the idea of immediate reconstruction given everything going on? Should
labs or further testing before we move forward? Only creatinine run so
far for MRI. Seek a second opinion prior to moving forward? NCI
facility close but will be out of pocket but can afford that. HMO does
not have breast center and had to request the referrals to the plastic surgeon
(saw last week) and oncologist (April 23). Normally those don’t come until all
pathology is in. This seems to be taking way too long with many things
having a 1-2 week time delay built in with the HMO. Anyone out there with
similar experiences? Posting 2 places.

Thank you.

Infobabe · April 2014

I see you have had no responses to your question. It might be better if you fill out the My Profile form on the upper right of this page.

You have an awful lot of information and this will help organize it and make it more comprehensible. If this turns out to be more than DCIS, you may wish to post this on another thread that fits your diagnosis more closely.

deb1973 · April 2014

Hi,

I'm sorry you are going through all this. Pre-treatment is the hardest time, at least it was in my case.

I can't address all your questions, but I can tell you my experience. First of all, I too had bloody discharge. It's incredible to me that your surgeon thinks it"s unrelated to your DCIS. Standard of care with this kind of discharge from what I understand is always an excisional biopsy b/c it can be (but often isn't) a sign of concurrent cancer.

Second, the choice to have a mastectomy is very personal & deserves a lot of thought & reflection. If you make up your mind to have a mastectomy, then you also have the decision about immediate reconstruction v. delayed reconstruction & whether to have a sentinal node biopsy. Bessie has posted invaluable info in other threads about the decision making process.

To address your question, my doctors did everything including a sentinal node biopsy at the time of mastectomy. So it is certainly possible to do it that way. However, your doctor may have sound reasons for recommending otherwise.

Many people say with DCIS that because it's non-invasive, you can take your time. I was advised by a surgeon at MD Anderson that with my aggressive, large-size, ER-negative DCIS, that I shouldn't go more than four to six weeks from diagnosis before having surgery. This is only one opinion, but I included it in my overall decision-making.

With that said, I am a fan of second opinions so my advice would be that if you want a second opinion, try to line up dates for procedures at the same time you are getting additional advice. I was open with everyone on my team about what I was doing & fortunately, I was able to get added insight validating what my instincts were before ultimately having my surgery with my original BS, with whom I had a long and good relationship.

I'm sorry your HMO appears restrictive about second opinions. Maybe others who have dealt with similar hassles can advise you.

I don't know if any of this is helpful, but I hope you come to a decision that you are comfortable with & have a healthy, speedy recovery.

howdidigethere · April 2014

Infobabe, I did fill out some of the profile sections including the diagnosis but it didn't show when I posted. And I couldn't figure out how to add left and right. I marked it public. How do I get it to my signature line?

Deb, my right breast diagnosis sounds similar to yours, ER/PR-, large and aggressive but that is only from the ultrasound core needle biopsy. Today I asked the surgeon's office if the HER2 could be run from that tissue. The left does have IDC ER/PR+ and HER2- with another larger area of DCIS but if it was the only breast would be very treatable.

Worked on second opinions yesterday but today found out that I may be able to get out of the HMO into a PPO plan that would allow me to go to the NCI facility that has a breast cancer center on May 1. So excited!

Infobabe · April 2014

Your profile is showing now. Sorry if I was nagging you.

Looks like Deb is able to answer your questions. You have a lot of decisions to make. I am glad you are getting into a better treatment facility. Is it in North Carolina?

TB90 · April 2014

Howdidigethere: First of all, regarding the mx's or lx's. I too had small breasts and with a large area of DCIS, my BS told me up front that I would not be happy with a lx as my remaining breast would not really be remaining. Even with the mx, as you can see from my profile, I still opted to have radiation due to close margins to chest wall and one focally positive margin in another area. Obviously you have a choice to make regarding the IDC breast but all the DCIS has to be removed also and I would talk to your surgeon about the possibility that a mx may be required anyhow. Many women end up going for re-excisions when margins are not satisfactory. This could influence your decision.

I understand that with pure DCIS, Her2 is irrelevant. They generally do not (cannot?) even test for it.

SNB has to be done at time of initial surgery if having a mx.

I opted out of reconstruction so have no info there. Good luck with all your decisions and so happy that you are now satisfied with the care you are receiving. Really helps to move forward with all the difficult decisions. Looking back on all of mine with relief that that phase is over and hoping you get to the other side as quickly as possible. Take care.

cinnamonsmiles · April 2014

I have a question before I respond....You were diagnosed with IDC (which is invasive and not DCIS) and ILC?

howdidigethere · April 2014

Thanks all for so many good replies and information.

Infobabe, no problem just trying to figure out the system here. And it still doesn't show on the first post? I'm in Denver with a wonderful facility close at hand. Now.

TB90, small breasts here too so with the large area along with the aggressiveness of the DCIS (right), surgeon recommended MX. And the IDC breast (left) needs clean margins and rads (close to chest wall also) so may just do BMX. Unless I get to the NCI facility and they offer a different approach.

Cinnamon, IDC on left breast with larger area of DCIS. MRI found 5.6x 4.8 area of enhancement on right breast. Ultrasound biopsy shows DCIS, high grade with minute foci of necrosis, lobular involvement. Did not say ILC. No excisional biopsy as yet due to size; may need MX. No way to differentiate on DX left and right for the signature line. My husband is also concerned about the reconstruction portion either immediate or delayed. Thinks it is an additional hardship on the body.

Still concerned about the positive and negative hormone receptors difference in the breasts.

Infobabe · April 2014

I guess the profile doesn't show in the original post. How come? I don't know. Glad we got the ball rolling anyway.

Left+ and Right-???

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