Surgery over... waiting for results

BritValarie · September 2011

I had a wired guided excisional on Friday the 8th. My steriotactic biopsy showed ADH and LCIS.Extensive family history... mother, grandmother and two aunts with BC before the age of 45. I'm 49.

So after the surgery, my surgeon calls me at home (I was asleep) the voice mail said she hoped I was doing good and that she'd talk to me at my follow-up in a week or two. Does she expect me to wait for my path results for two weeks???

This surgeon has a great reputation in my area...and I really like her. But, I feel like I get mixed messages from her. When she suggested this surgery, she said it was a precaution because my calcifications are increasing all the time. But said, I probably didn't have cancer.

Then, when I woke from surgery, my husband said she told him that she took more than expected. I thought I would have an inch or two incision, but it's about 4-5 inches.

I called her office yesterday to see if my path results were in.... left two messages and no one called me back.

No real point to this post.... just venting

I'm not a patient person... the waiting is killing me!

If I just have more ADH and LCIS, what would be the next step? I'm so confused!

Valarie

BritValarie · September 2011

Ok. so just after I posted this, my surgeon called. I now have LCIS, ADH and ALH. She wants me to have another surgery. She said the one on friday was a wire guided surgery, the next one will be to take a chunk out.

She said with these 3 types, they have to rule out cancer. Is this normal... to have to have another surgery?

JanetM · September 2011

I had a stereotactic biopsies that showed LCIS and ALH which was followed up with a wire guided lumpectomy that took tissue from 2 areas that showed LCIS, ALH and ADH. Surgeon also said she took out more tissue that she had expected to and that there were more calcifications than she had expected to find. I have an appointment for a follow up diagnostic mammogram in 8 weeks to see what if anything is going on. I have been on an every 6 month follow up schedule for the last 3 years, and my surgeon said that this needed close follow up so I guess I will continue to be on this merry-go-round.

beacon800 · September 2011

yes I think this does happen. Maybe your surgeon found the abnormalities running all the way to the edges of the removed tissue. Meaning, they did not get clear margins and they want to take a larger piece. Maybe something else, but it's hard to say what.

However, with LCIS it is pretty typical not to have clear margins, so it's a bit confusing why they want more out. If they are just fishing around in there it doesn't seem like a reliable way to find any hidden cancer.

Is your surgeon a breast oncology surgeon or a general surgeon who does breast surgery? Quite a difference. So far you have some high risk abnormalities but no cancer and that is a good thing. You might want a second opinion before you do much more. That's pretty much what I would get, if I were you.

BritValarie · September 2011

Thanks JanetM,

I'm not sure I can do the every 6 month merry-go-round... it will drive me crazy. I just want this to be over with! Sorry for wineing I'm actually a strong positive person, but I feel "stuck" until I decide what to do.

A couple of years ago I had type 2 diabetes and decided to get rid of it. I did a low carb diet and exercised... I lost 45lbs and I'm no longer considered Diabetic. So, I really don't want to go on Tamoxifen. I know it sounds stupid, but I don't want to put on weight and get the Diabetes back again. Plus, I have arthritus in my hip...and don't wait joint pain. Usually, I will get lots of side effects from taking medication. Its why I decided to come off the Diabetes meds.

So, I guess for me, I will see what this next surgery brings, then wait until my next 6 month appointment. If anything else shows up, then I believe I will look into PBM.

Good luck...and please keep me updated.

Valarie

BritValarie · September 2011

Hi Beacon800,

My surgeon is a General Surgeon who specialises in Breast Surgery. I live in Virginia Beach, VA and did a search online and had trouble finding a Breast Specialist. But, my surgeon came highly recommended by a few people in the area.

But, you have a great point about a 2nd opinion before I go through with this next surgery.

Thanks for the suggestion!

Take Care,

Valarie

beacon800 · September 2011

another thing: get your path report and it will tell you in centimeters how much they removed. Your incision size is quite large so I would think they took a fair bit. Is Johns Hopkins too far to go? I used to live in Maryland, but not sure how far VA Beach is.

BritValarie · September 2011

Thanks Beacon800... I will definitely get a copy of my pathology report next week when I see my surgeon.

I think John Hopkins is 4-5 hours away. But, since I can't find an actual Breast Specialist locally, that may be an option. I guess I need to check with my insurance.

Thanks for all your advice...I really, really appreciate it!

Valarie

Anonymous · September 2011

Valarie---I'm a little confused as to why they are recommending a 2nd excisional biopsy. They often have to do that for DCIS to get clear margins, but clear margins are not required with LCIS. Since LCIS is most often multicentric, multifocal, and bilateral, if it is found in one area, is most likely is in other areas throughout both breasts. So unlike DCIS which is more localized and can most often be completely removed surgically, in order to remove all LCIS, you would have to have bilateral mastectomies, as it is thought to be a diffuse bilateral disease.

I would recommend seeing an oncologist and having genetic testing done (due to your strong family history) before you have any more surgery. Both of those would probably help you with making any future decisions. suince LCIS is non-invasive, you have time to make decisions, do research, get as many opinions as you want, or just to mull it all over. Don't let anyone rush you

I was diagnosed with LCIS 8 years ago and also have family history of bc (mom had ILC). I do high risk monitoring of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. I took tamoxifen for 5 years and now take evista for futher prevention.

Anne.

JanetM · September 2011

Valerie -

I hear you about the meery-go-round. It is not a place that I am comfortable being either. Somehow I always feel like the other shoe is going to drop at some point. I am going to see what this round of diagnostic mammograms shows and if something turns up that requires additional surgery I am likely to seriously consider PBM as well. I had a hysterectomy and ovaries removed 8 weeks after my lumpectomy so I need some time let my body recuperate.

BritValarie · September 2011

Thanks Anne and Janet!

Anne... I'm confused, too! When the surgeon called with the path results, I said "didn't you already take a chunk?" and she said no. it was a wire guided biopsy. We need to take another look to make sure nothing else is going on. I guess I'll find out more on Tuesday and will get my pathology report. I agree with your suggestion to see an oncologist. But, ALL my family members have passed away, from my research about genetic testing, I will probably come back as uninformed negative.

Janet... I understand about the other shoe dropping. Everytime I've had a biopsy, they've found a different type of pre-cancerous cell. I just don't know how comfortable I feel about screenings every 6 months. I feel like I have 3 options. 1. Do no more and see what shows on my MRI in December. 2. Go ahead with this 2nd surgery and take it from there. 3. Start researching Dr's for a PBM.

Not sure which option I'll go for yet.

Thanks for replying and all your advice, Ladies!

Take care,

Valarie

Surgery over... waiting for results

Comments

Categories