Topic: Multiple excisions same site

Yikes, Jen! 

Thank God you insisted on that re-excision! I think the 2nd opinion on pathology is pretty normal.  I had a core biopsy done 10/16 and both pathologists at my hospital decided to sent the specimen for a 2nd opinion.  I think you should ask them ahead of time, so they can prepare 2 samples. Oh, and yes, my insurance paid for it.

Good luck today! You'll be in my thoughts....

~Anne

Hi Adrienne,

 Wondering if you're having lumpectomy?  Sentinel node biopsy?  Be sure to get copies of your pathology reports.  My doc just handed them to me automatically, but I sure would have asked for them if he hadn't.  What I've always told my patients is to speak up- you need to be in charge of your health and your own life, and if you have competent physicians, they won't be offended.  These last few weeks of 3 surgeries and all associated procedures have been full of learning for me, and this is the first time I've ever had to "walk the walk" of what I tell my patients- that is, taking control of what I feel is best for me as the patient.  And Adrienne, if they know you are informed, they will keep you better informed and it all works out as a positive thing for YOU.

 P.S.  For your peace of mind:  all three surgeries that I have just had did not even require a Tylenol for pain, so don't worry about that.  If you feel any discomfort at all, they will take care of it.  But just remember, they won't always know how to help you if you don't tell them what you need.

 Jen (long time nurse, first time patient)

Hi Jenni,

 Yep, I'm having a lumpectomy and sentinel node biopsy on Tuesday. So far, I've been given pathology reports automatically, but thank you for reminding me to ask for them if I don't get the next ones.

 So far, the doctors, nurses and other medical personnel have been wonderful. My pre-admission nurse yesterday told me that she had breast cancer, with a mastectomy about 16 years ago, and she has had no recurrence. When I asked if she was happy with her implant, she totally surprised me by lifting her blouse and showing me her breasts (which look marvelous, by the way). What an amazing and generous gift that was. I thanked her deeply, but she'll never know just how much I appreciated it.

 Thanks so much for your good advice. I'm doing my best to stay informed so I can work with my doctor to make the best decisions for me.

 No pain??? Now, that is wonderful. I had no pain at all from my core biopsy, but that was a very small area compared to what's being removed in the surgery. I've been worried about the excision, and especially the lymph node removal. You have eased my mind greatly. Another gift. Thank you so much, Jenni.

 Best of luck to you on your procedures.

adrienne 

Hi Jen,

Thanks for wondering what's next for me!!

I am also have a lumpectomy on Tuesday. They didn't mention a node removal because the initial path from the core biopsy said Benign Intracysytic Papilloma.  My BS wants it out though(I'm good with that) She said the mass is about 1.5cm, but it is in a palpable cyst which has dilated the duct.  I believe they will be taking the whole duct and doing a biopsy.  She said that there is still a 25% chance that there is a malignancy within the whole thing.  I'm nervous about that because I just have this funny feeling I can't shake...but I'm trying not to get ahead of myself...could be just nerves! 

But even if it isn't B9, I know it was found early, so I will be OK.

I hope this surgery is as easy as the core...I had the tiniest bit of pain and the radiologist stopped, numbed it up deeper and I was totally pain free and watched the whole thing on the ultrasound screen. 

I opted to be put put for the lumpectomy, but I started with a silly head cold yesterday(seems to be just one side) I hope this doesn't cancel it!    If they can't put me out, than I'd rather be just numbed and do it awake!  I can't wait any longer....I think I would lose my mind!   It's been a long month of "Hurry up and wait!".....

~Anne

Hi Anne,

From what I've been reading, things look pretty good regarding the Intracystic papilloma. Love that word "benign..." 

Re the cold symptoms, I think you should load up on Vitamin C and fluids.  Even that "Airborne" stuff works good from my experience.  That's the stuff that was invented by a teacher who got sick from the kids every year.  Now I take it every time I'm going to be in a plane for awhile and I suggest it to everyone I know who is coming down with a cold.  Couldn't hurt...

Oh yes, the waiting is maddening.  I'm emailing my doctor tonight to tell him to NOT make me wait this time.  I don't care about "protocol," I want a phone call as soon as they get the pathology results from this third surgery.  Waited way way too long the last 2 times.

Keeping you in my thoughts.  Won't be long now and you'll be on your way to recovery.

Take care, Jennifer

Hi guys,

At home recovering from my lumpectomy! The "cold" was more allergies and I didn't have any congestion in my lungs, so the surgery was a go!  Breezed through it, but more than a little sore tonight...the incision is a little larger than I expected -it's about 4.5-5 inches long in a crescent shape on the outside of my breast...but looks nicely closed...

Now like so many of us...I wait for the "final" final report...and hope that I don't fall into the 25% .....(from above post )

adrienne, I hope your surgery went well today! Have been thinking about you!

Jen, I hope your waiting won't be too long so you get on with a treatment plan! Good luck, your support has been wonderful...

God Bless to all

~Anne

Anne

Anne, congratulations on getting to do your surgery -- I've been worrying about that. I hope your wait for results is short, and that you get an excellent result.

Jennifer, I hope you get your results soon. The waiting is so hard, isn't it?

I had my surgery yesterday. It was a very long day at the hospital (8:00 a.m. to 6:00 p.m.), but the procedures were minimally painful, just as you said, Jennifer. During the long waits before/between procedures I was able to nap, thanks to the Xanax the nurse gave me.

The surgeon said that from his examination, the margins of the excised lump are good, and the two sentinel nodes he removed look clean. Of course, they will be sent to the pathology lab for a closer look, so I'm still waiting for the true results.

Best of luck to all of you,

adrienne 

Hi Jennifer,

I tried to post this last night, but the forum software won't let me make more than 5 posts in 24 hours. Then I tried again this morning, and apparently I was still in the 24-hour window. Trying again...

They misplaced you for 4 1/2 hours??? Good grief. That gives you a lot of confidence, doesn't it?

I'm so glad you got rid of that first doctor. What on earth was he thinking? I wonder if he's one of those lucky people who has never been sick.

I feel very fortunate to have a good doctor and very caring, helpful people at the hospital. They told me during the pre-admit that I would be offered a Xanax before surgery. The pre-admit nurse also told me to remember that *they* were working for *me* -- not the other way around.

Thanks for stressing the importance of my checking the pathology report -- I will do it, for sure. Your story has been an inspiration to me. 

Please let me know when you get your results. I have my fingers crossed for you.

adrienne 

Hi Jen and Adrienne,

I looked back on my post and now after some of the initial swellling has gone down, my incision is really only about 3 inches (haha) I think it must have been the exaggeration of the pain meds :) It is not as sore as it was yesterday but I think I went back to work one day too soon....I almost collapsed when I got home, I was so tired.

I might have to be waiting through another weekend. I called the surgeon's office and the results are still "pending" (I'm beginning to hate that word).

Jen, that day must have been horrific for you! And you hadn't eaten anything that whole time, right?  I know how it can happen though. I have worked in many medical offices, so I'm always going out of my way to be nice to staff, but sometimes you have to be the "squeaky wheel" or you get overlooked or they say "she won't mind, she's so nice...."

I have been thinking about both of you and the endless waiting.  Thank God, I can check in here and know that others at least understand how draining the wait is. 

I also asked the nurse at the dr's office if I can have copies of all the reports, U/S, mammo, pathology-all opinions!, so I can start a file....

Keep us posted if you hear anything!  As always...praying for you....

~Anne

Anne- I got your post in my email but can't find it here.  I think you're on another forum?  I read something last night about you going back to work right away..... naughty girl.  Rest.  even though our surgeries are "small," it's still surgery.  I've always been gung-ho, too, but I'm really trying to behave and give all this the importance that it demands.  Not power, mind you, I'm giving it no power.  Funny how philosophical one can become during something like this...  But my plan is to recognize that we have a powerful adversary and not  under estimate it, but do not give it any pathway to latch on tighte, either

Rest this weekend.  I think you will be fine.

Jennifer

Aw, nuts.  But first of all-  Lymph nodes are clear!  That is beyond wonderful. 

Second- I know it's scary, but I promise you, the second surgery (re-excision) is way way easier than the first, especially if you take your Xanax again. Don't have to go through those other procedures again, just the excision, and no new scar- they just use the old one. For mine, they didn't even have to put me out, just gave me some Versed and Propofol and local.  Didn't know or feel a thing, might as well have been anesthesia as far as I'm concerned.  Surgery took about 20 minutes and I was ready to go home immediately, but they made me stay for an hour or so.  

Re you, it's weird that they didn't get it all, being "in situ" and not invasive.  You can bet they'll get it the next time.  I had two types, "in situ" and "invasive," Ductal and Lobular, so maybe that's why it was goofy for me and took 3 tries. Got a preliminary report a little while ago today, looks like margins are clear but have to wait for final.  Been through this before, and I'm making them do a second review.  So we'll see.

Re your margins, was it just one margin that still had cancer cells or more than one, and how much did they take out? I know that being a Stage 2 means that the tumor was at least 2cm, right?  I think mine was really that big to begin with and probably was a Stage 2 also, not the Stage 1 that they said. Somehow they just missed it.  I really really really doubt that there will be a problem left in you after the second incision. I think they'll pluck the sucker out and toss it in the NOT WELCOME HERE pile and that will be that.  Then on to radiation and a cancer-free future.

How many nodes did they take?

Get your pathology report (I know that icky feeling in the pit of your stomach when you read about cancer and malignancy and the page has your name at the top...) but what I have always told my patients is that "Information Is Ammuntion" and that is so true.  I'm telling you, when the docs know you are informed, the good ones are quite willing to inform you even more. And it often helps to diminish the fear a bit.  All you have to do is ask. Read the post I left above from my Med Onc re her response to me this morning.  And it's because I emailed her and made sure she knew how upset I was (in a very classy and non-confrontational way, of course).  I wasn't getting that input from the surgeon, so I involved her sooner than she had to be and she responded gracefully.  

Use your email, it's wonderful to be able to correspond with the docs and not have to wait for phone calls, etc. They always get back to you, usually on the same day, at least mine do.  And when I email, I don't leave the office forgetting what I was going to ask, and when they respond, you have it in writing and can take it in and not worry about forgetting something.  So use it.  Make yourself known to them, make yourself important. Because you ARE important.  And you will be just fine.  And we will probably both be in radiation together... well, at the same time anyway.  

Remember remember remember, the lymph nodes are clear! 

Jennifer 

Yikes, guys! 

Jen, I'm so glad your margins were clear finally....and adrienne, I'm so sorry you'll have to do your surgery again, but I'm glad your nodes are clear ! I so hope that everything will go more smoothly for both of you....it sounds like you've been through enough already!

Ya, I went back to work a day too early! I don't have any more sick days at work and money is so tight, that I had to go in....but I feel better today, but will be resting this weekend.

I didn't hear more about the path report, so they didn't get anything this afternoon...I'm getting used to waiting on weekends.....

Thinking of you both...

~Anne

Dear Adrienne, 

I've looked and looked, and can find info on all the separate parts of your path report, but putting them all together takes an expert. It seems like they took a lot out and still didn't get it all.  Just for comparison, I want you to know how much they took from my first 2 excisions:

Surgery #1: Specimen A= 4.5 X 3.4 X 2.7cm

                 Specimen B=  2.3 X 1.5 x 0.8cm

Surgery#2  Specimen A=  2.8 X1.8 X 1.2cm

                 Specimen B=  1.4 X 1.2 X 0.8cm

                 Specimen C=  1.9 X 1.4 X 1.1cm

Surgery#3 Specimen A=  Who knows? Don't have numbers back yet.

                 Specimen B=  Ditto...

(Re: #3 all I know is that there were 2 specimens, both had residual cancer from the first 2 surgeries, but they're clear now.  I will find out on Monday "how" clear.  Wanna make sure those margins are wider this time.  Still could mean mastectomy if all is not good, but I'm optimistic.      

So, if you add this all up, it seems like they took big chunks of tissue, and I don't have big boobs.  But I can't tell cosmetically that there is any difference.  Maybe when the swelling goes down, but I don't think it will be too evident.

 And remember, I don't even know how much more they took out the third time.  My point is, it seems like they took a big part of your tissue and it seems like they should have gotten it, but look how much of mine they took and it was still positive after the second surgery.  Took one more time to get it all.  What was seen on the third path report was that there was a "residual small focus of ILC on both the superior and inferior aspects of the medial margin" from the second surgery, but they supposedly got it all with the third surgery.

I had, as far as I can discern from all the reports, 3 types of creeps in me- DCIS, LCIS and ILC.  And it took 3 tries, but I feel I've won.   However, I am getting that second opinion done (had to really push for it) and then I found several local hospitals and diagnostic pathology services who will, (for a fee if you insurance won't cover it) do an independent pathology review.  I just have to get my specimens to them.  And the specimens, as a patient, are your property, so that is do-able. A local hospital, not associated with UCD where I'm a patient, will only charge $100 to do it - with 10% off for cash payment.  So I think, just for my own peace of mind, I am going to obtain all 3 of my specimens and have a re-eval.  I'll proceed with my radiation, though.  I just want a reassurance after being told it was ok in the beginning and then finding out that it wasn't.

This stuff we get involved in with this BC diagnosis, wow, it's so consuming isn't it, But it's so important to have as much information as you can take in.

Don't lose faith in your doctors.  One of the surprising things I found out in all this is that the surgeon cannot see where the edges are, and sometimes can't even discern the tumor when he/she is in there; they have to go by the immaging, wire guide, dye, etc. And that's why so often we need those extra surgeries. 

So, to wind it up, I'm saying that we all have to go by our instincts.  I did- when they said the first surgery margins were "clear" when they really weren't.  One good thing re you is that you have definite proof that the margins aren't clear, so you need surgery one way or the other, for sure.  Ok, so that decision is out of the way.

Now, which surgery for you?  I was ready for a mastectomy and had thought it all out, took pictures of my boobs secretly, visualized how it would look with one gone, researched  reconstruction even though my kids are grown and I'm older (don't feel it, though) and don't have a husband or boyfriend. Even read about how they make a new nipple.  'Cause I decided I like my boobs and wasn't going to be lopsided for the rest of my life.  So I was ready.  So I know what you are thinking this weekend.  

I don't mean to be so wordy, just want you to know how much I'm thinking about you and how fragile and frightened you are right now.  So lastly, I want you to know that if you decide on a re-excision, it was so easy that I left the hospital, went shopping and out to lunch. (Took my make-up along).  The reason I'm telling you this is because it was so easy, just a simple re-excision and then you still can do the mastectomy if there is a problem afterward.  It's up to you. 

I just want you to have all the info you want.  If for any reason you need to see my path reports for comparison, or need my help in anyway, just let me know. I'm a good researcher.

Meant to write last night, but fell asleep with the laptop in my lap.  But I check my messages frequently.

Thinking of you today, and how lucky we are to have insurance and good doctors. 

 Jennifer

Hi Jennifer,

You are so sweet to look at my results in such detail. I can't thank you enough.

Reading the size of your excisions is very encouraging to me. It looks like they removed about as much from you the first time as they removed from me, although in two sections for you. And if your breasts still look normal, then I have hope that mine, which are also small, still will look good after more is removed. And if my breast is a little lopsided, well, I can live with that. The important thing is to get rid of the cancer. If I'm interpreting the pathology report correctly, there are small, localized (focal) areas of cancer at the margins. With any luck, that means that we are close to getting it all. 

After a lot of thought, and after reading what you have said to me, I'm willing to try excision again, provided the doctor doesn't see something that makes it a bad idea. Certainly the recovery time should be a lot faster than for mastectomy. Heck, I'm pretty much totally recovered from the first lumpectomy already. There's some soreness when pressed, but I went for a 4 mile walk at my normal aerobic speed today, and it felt fine.

Your point about insurance and good doctors is right on. My heart goes out to people facing cancer without them. 

Jennifer, I hope your final report comes back just the way you want it: wide clear margins. 

Anne, hang in there. I'm thinking of you this weekend.

adrienne 

Hi Jen and adirenne,

You guys are so awesome to check up on me! I am trying to rest today.

It's been raining hard up here all day and not too cold today(52)-remnants of tropical storm Ida...Jen, I live in a small quaint town called Exeter which is in the Seacoast area of New Hampshire.  I always say I'm from the Seacoast because it is as beautiful as it sounds. I'm about 10 minutes away from the Atlantic Ocean.

Adrienne!!! 4 miles...I'm with you , Jen. I'm a wimp I'd last 4 minutes(maybe)

I should be more active, but I've had so much crap this year-shoulder surgery in April(rotator cuff, etc) physical therapy and then a bulging disc in my neck with nerve pain down my arm(sort of a result from the shoulder) with 3 epidural steriod injections and just when I thought I was better, I started with occipital neuralgia which is nerve pain going into my head and around my scalp. 

I was at my Drs for pain meds for that when I asked her to just take a look at the lump which I thought was just a cyst.... I swear 2009 will not go down in the books as my favorite year! 

I feel bad sounding like a whiner when I haven't even had any bad reports yet...I am just hoping that this feeling in my gut is nothing....I keep trying to not go there, but Murphy's Law has been working aginst me all year... BUT you two are comforting and strong and if you can do it, I can too if I have to!

Wating on the sidelines....and thankful I found this site...

~Anne