Third Excision?

SuziePA

Two months ago I had a mammogram because I felt a hard area in my breast.  Not really a lump, but just a small area that didn't feel like the other breast. Anyway, I had several mamograms and an ultrasound.  The radiologist said it looked like calcifications that were normal for my age (59) but he thought I should have a biopsy just in case. He said 80% of biopsies turn out to be nothing.  From the biopsy, they found ADH and ductal papilloma. (not nothing)

The Breast Surgeon said she needed to take out the suspicious area and I would then take Evista.  Five days after the surgery, I got the news that I had DCIS.  She said it was Stage 0 and instead of Evista, I would get seven weeks of radiation followed by Tamoxifen.  In the meantime, she needed to do another excision to get more tissue because she wanted to make sure the margins were clear.

Five days ago, I had a second excision.  The nurse just called and said the rim was not clear in two areas and the doctor would have to operate agin until she was able to get a clear margin.

I'm still in shock and I don't know what that means -- If radiation kills the cancer, why would I have to have another surgery?  If I have another surgery and she still can't get a clean margin, then what?  How many excisions can you have? My biggest fear is that that the cancer is all through me, and they just haven't found it  How could a lump of typical calcifications turn into cancer and three surgeries?   I read so many threads here and I just don't know how you are all so brave, when all I can do is cry.

JanetinVirginia

I feel for you.  Have you had an MRI?  If not I'd insist on that before another surgery.  And I'd strongly recommend you get copies of all your reports/films and go for a second opinion.  After my first excisional biopsy without good margins I had an MRI that showed more areas.  When I asked the general surgeon if he could guarantee clear margins the second time around, he said no.  At that point, I found a breast surgeon (does exclusively breast surgeries) at a NCI hospital & decided on a mastectomy.  It was a good thing because there were more focal areas.  This whole cancer thing can be very sneaky.  I was able to avoid radiation - altho a small percentage do need radiation after mastectomy particularly if the tumor is close to the chest wall and they can't get wide margins.

Here is link to find NCI center near you if that's helpful.

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

SuziePA

Thanks Janet and JB --No I haven't had an MRI nor seen any pathology reports.  I've just been trusting the surgeon as I go along.  I know this is a dumb question, but what exactly should I say to her tomorrow?  If I make an appointment with another doctor, is she going to be offended or think that I don't trust her?  Will a new doctor have to start all over?

Beesie

Suzie, sorry that you are going through all this.

It's normal to get a 2nd opinion - if your doctor is offended then you don't want to be dealing with this doctor anyway.

I'd also strongly recommend an MRI. For many of us, myself included, an MRI was more accurate than a mammo at showing the whole area of DCIS.  Before you have another excision, you want to have a good idea of whether this is going to work and finally result in clear margins.  In my case, my MRI showed that my breast was full of "stuff".  While my surgeon couldn't say for sure that the "stuff" was all DCIS, we guessed that it was.  So as much as I would have preferred a re-excision, I knew that the odds of it being successful were really slim.  So I opted for the mastectomy.  It turned out that all the "stuff" was DCIS so my surgeon would never have been able to get clear margins with another excision.  On the other hand if the MRI had been clear or shown very little, I would have gone with the re-excision.  And as it was, the MRI did show my other breast to be clear so I felt comfortable making the decision to have a single mastectomy.

In your case, I think that having more information before you go back into surgery can only be a good thing.  So ask about the MRI.  (Note that a PET scan is not necessary for those with DCIS since a PET scan is used to check the rest of the body and with DCIS there is no risk that the cancer has moved beyond the breast).  

LisaAlissa

Ask for copies of all of the reports:

Radiology reports on whatever mammograms, MRIs, ultrasounds, etc. you've had.

Surgical reports from the surgeon who did whatever excision or biopsy you've had.

Pathology reports on any tissue that's been removed (in an excision or biopsy).

Lab test reports.

As you've gathered, there are probably a lot of reports in your files.  And you're entitled to a copy of each one!  Ask her, ask her office staff.  It's not an unusual question.  Just say that you've been thinking about it and you've seen so many people that you're beginning to think that you should keep your own records.  (For yourself, and in case anyone needs to see something from another office.  It's so awkward to have to redo an appointment because a needed bit of information from another doctor's file isn't at hand.)  You just need to catch up on the records from their office before you get even further behind. 

Often they worry that they'll have to spend time explaining them to you if they give them to you.  That's ok.  You're entitled to understand.  They may have someone in the office (other than the Dr.) who can be your first line of inquiry.  Ask if there is someone you can direct any questions to.  They'll tell you.

She shouldn't be offended if you seek a second opinion.  And, BTW, you might decide you want to seeks a second opinion from another surgeon, another pathologist, another radiologist.  It depends on your circumstances.

A new doctor's office will tell you what they want to see.  They will likely want to see all of your existing reports & results.  They will also want to see the imaging studies themselves.  And they may want to look at the preserved tissue or slides.

HTH,

LisaAlissa 

jring711

Hi, I'm brand new to this- had an MRI last week and then had an appt with the surgeon today...from the mammo he said the dcis area looked to be about 3 cm.  Then he looked at MRI report and it said the area was more like 8cm(!) Then the surgeon and the radiologist were conversing and wondering if the MRI was exaggerating...!  What the heck?!  I thought the MRI was going to make things more clear...not muddle everything..they offered more biopsies and another MRI b/c perhaps the MRI was showing where I recently had the core biopsy..

Yikes...any thoughts out there?

JRing711

Beesie

JRing, unfortunately none of the screening techniques is perfect and none give a complete and sure-to-be accurate picture.  But by having a mammo and an MRI, your doctor has the most information possible going into the surgery (and even more if you had an ultrasound too).  So in your case, what they know is that the area of DCIS is at least  3 cm and could be as large as 8 cm.  MRIs tend to be accurate with high grade DCIS a greater percent of the time (than mammos) but there are cases where it's the mammo that turns out to be right. 

If 3 cm means a lumpectomy and 8 cm means a mastectomy and if you would prefer a lumpectomy if it's feasible, than another MRI and possibly a biopsy might be the way to go. On the other hand, if you know that you'd prefer to have a mastectomy in either case, then there might not be any benefit to further testing.  So it seems to all depend on which surgery option you would prefer.    

JanetinVirginia

Suzie - no, your doctor should not be offended.  If he/she is - that should be a red flag.  Second opinions are done all the time especially in serious health situations.  Your medical records belong to you - not to the doctor or the hospital or labs.  You 'own' your records and you have every right to ask for copies of everything.

No, the new doctor (2n opinion) doesn't have to 'start all over.'  That's why you need to take copies of reports & films to him/her.  They will tell you on the phone what to bring with you.

This is the time to be a strong advocate for yourself & find the best possible care.  You can do this. You are the 'customer.' It's your body & your life.  And, you will actually feel much better and less upset having a voice & some control in your treatment plan.  You may end up wanting the original surgeon - but it is certainly worth the effort to seek a specialist's opinion, request an MRI, etc.  (I went to 3 surgeons before I settled on one - and the same with oncologists. Each time you learn much more and can make better decisions.) GOOD LUCK & keep us posted. 

SJW1

Suzie,

It is perfectly ok to cry. We all did when we were going through this too.

After I had a lumpectomy for DCIS in 2007, they told me I did not get clear margins too, 4 out of 6 were positive. I thought I would need a mastectomy. I had a RODEO MRI, which found 2 areas of suspicion. Both were biopsied and both were benign.

I then consulted with Dr. Michael Lagios, a world-renowed DCIS expert and pathologist, who has a consulting service that anyone can use for a 2nd pathology opinion. He disagreed with my local pathologists and said that, not only did I get good margins, but because my score on the Van Nuys Prognostic Index was low, my chance of recurrence without radiation was only 4 percent. For me it then made sense to skip radiation, since the 50 percent risk reduction it provides was neglible.

Your surgeon wants to get good margins, because good margins are the most predictive factor in whether you will have a recurrence. A good MRI might help your surgeon better see where the residual DCIS to get those good margins.

Since DCIS is non-invasive cancer, it can not spread throughout your body. In fact it doesn't have the biological capability to get out of your milk ducts into your breasts.

Feel free to send me a PM or check out my story on my website if you need more info:

https://sites.google.com/site/dciswithoutrads/home

Best wishes and hugs,

Sandie

SuziePA

I just got back from the doctor.  She said that 90% of the time, she can get a sample with clear margins.  Sometimes, for the other 10%, she has to go back and get more tissue.  However, she said she is 99% sure she can get a better, clear sample, and I am scheduled for another excision tomorrow. 

I asked about the MRI and she said that I could have one if I wanted it, but my cancer is non-invasive, and the MRI wouldn't be better than the mammograms I already have. 

I asked about a second opinion and she wasn't upset, but she said that would take time and she didn't want me to delay treatment.  The only other option to more surgery was a mastectomy, and she didn't think I needed that. 

I did get my pathology reports.  In the first surgery, the specimen was 3.3 X 3 X 0.9 cm.  The diagnosis was intermediate grade ductal carcinoma is situ.  In the second operation, there were six specimens submitted.  Of those, four are multifocal intermediate grade carcinoma in situ.  Two specimens have microcalcifications present involving DCIS.

So that's where I am.  Operation tomorrow and hopefully better lab report next week. 

Say a prayer for me and I do the same for you all.  Thanks.

Suzie

Beesie

Suzie, what your surgeon said about MRIs and DCIS is old thinking.  Because MRIs don't spot calcifications, it used to be believed that MRIs wouldn't be effective at 'seeing' DCIS, because most DCIS is found as calcifications. However, it turns out that while MRIs don't spot benign calcifications, they are actually very good - better than mammos - at spotting calcifications that are DCIS.  So it's not just the experience of some of us here but it's medical research that has shown this to be the case.  Here is a write up from this website about one of the studies that showed this:

MRI best at spotting ductal carcinoma in situ 

Good luck tomorrow.  I hope that your surgeon is able to get clear margins.   

SuziePA

Checking in with bad news.  There were three areas that did not have clean margins.  The surgeon said that my only option is a mastectomy.  I did manage to get an appointment with a new surgeon at University of Pennsylvania next week, and his office is going to handle getting all the mammograms and pathology reports from current surgeon and hospital.  No  tumor, confined to the ducts, and just cancer cells floating around, I guess. 

I do have a question if anyone knows...Before the biopsy, when I just had hyperplasia, I was told my cancer was stage 0.  Since I now have a diagnois of DCIS, is my cancer stage now  at 1?  I don't see any "stage" listed on any of the pathology reports.

Thanks again.

SuziePA

The pathology report says "multifocal intermediate grade" and that doesn't sound too promising.  I guess I've accepted the probability I will lose my breast, but since it's still DCIS, is it also most likely that I will be finally rid of the cancer?  Does it always come back eventually in the other breast?

Beesie

"Does it always come back eventually in the other breast?"  No, absolutely not! 

Suzie, breast cancer - even invasive breast cancer - very rarely travels to the other breast.  DCIS cannot travel to the other breast; the cancer cells are confined to the milk ducts and the milk ducts of one breast are not connected to the other breast or to the lymph nodes.  So if you have the mastectomy and if your final diagnosis remains pure DCIS (and given all your surgeries to-date, there's every reason to believe that the final diagnosis will be pure DCIS), then you have no worries about the cancer moving anywhere outside your breast.

After a mastectomy, there is still a very small chance that you could have a local (i.e. in the breast) recurrence. Generally there is about a 1% - 2% risk of that.  Usually a local recurrence is quite easy to find because there is no breast tissue in which the cancer can hide.  So a lump or nodule becomes noticable quite quickly.  Most often recurrences happen at or near the scar line. This isn't something that's likely to happen or something that you should worry about, but it is something that you should be aware of, so that you continue to check your breast area (after the mastectomy) for lumps.

As for your other breast, I was told by my oncologist that anyone who has BC one time is higher risk to get it again. This wouldn't be a recurrence of the current cancer; it would be the development of an entirely new cancer. What your risk is to be diagnosed again depends on your personal and family health history however the 'rule of thumb' that my oncologist told me is that on average the risk level of someone who's been diagnosed before is about double that of the average woman of the same age.  The average woman in North America has a 12.5% chance of being diagnosed during her lifetime (from age 20 to age 90).  I was diagnosed at the age of 49. An average 49 year old has an 11% remaining lifetime risk (from age 49 to age 90).  So my oncologist estimated my risk to get BC again to be about 22%.  You are 59.  The average 59 year old has about an 8.5% remaining lifetime risk (from age 59 to age 90). Using the same assumptions, this would put your risk at about 17% (plus or minus, depending on your personal/family health history). That might seem high, but consider that it means that there's an 83% chance that you won't be diagnosed again. And every year that goes by, your 'remaining lifetime risk' goes down (simply because there are less years left in your natural lifetime!).  Talk to your oncologist about your specific risk level; as I said, this is a general formula that my oncologist shared with me.

About your diagnosis, "multifocal intermediate grade" is nothing to worry about.  You already know that it's multifocal - that just means that there is DCIS in more than one area of your breast, and that's why it's so hard to get clear margins.  Multifocal DCIS is pretty common.  My DCIS was all over my breast.  And intermediate grade is grade 2, which is not the least aggressive DCIS but it's far from being the most aggressive, which would be high grade (grade 3) with comedonecrosis (which is what I had).  All DCIS, whatever the grade and whatever the amount, is Stage 0 pre-invasive cancer.  I don't know why you were told when your preliminary diagnosis was hyperplasia that you had stage 0 cancer.  Hyperplasia is not cancer and therefore isn't any stage.

Hope that helps. 

SuziePA

Beesie - I can't tell you how much I appreciate your thoughts and explanation in English.  It's so hard to be in the doctor's office when I'm in shock with more bad news and she says,"Any questions?"  I can't think straight and then drive home to sit and cry.  Thank God I found this message board and you and all the nice ladies who have been through it.

This is the first time I have felt hopeful in two months.  -- will post again after I see the doctor on Wednesday.  Thank you again.

Suzie

Stanzie

Bessie - When you say breast cancer rarely travels to the other breast are you only referring to DCIS? What about LCIS. When I was diagnosed it was with both in the same breast. My BS said it complicated everything. I talked to all the doctors over and over and because of the LCIS decided on a double MX. Just wondering if you know happen to know any more. Thanks.

SuziePA

Well, it's been awhile, and I ended up with another round of mammograms, sonograms and an MRI with a new surgeon.  I'm scheduled for a mastectomy and reconstruction next month.  It's strange looking back over my previous posts.  I was so scared, and I still am, but much less.  I feel like at least I now have a plan, and the cancer will be gone in a couple weeks.  The doctor thinks I will not need any additional radiation or chemo.  So I'm moving over to the mastectomy boards but wanted to tell you all again how much it meant to me when I first got diagnosed and thought the world was ending to have total strangers willingto share their stories and offer prayers and help.  You guys are great.

Flopsie2

Suzie, I've been down this road; annual mammogram (no lump felt) - great radiologist found the
changes that had been occurring and recommended seeing a surgeon.  Within 2 months I had
three surgeries, multiple tests (MRI's, ultrasounds, needle biopsies - UGH)!  Finally, I discussed my options with my surgeon and two women doc's - both radiologist/oncologist and both were very honest and they listened to me and how I felt about cancer! This is my second time dealing with cancer - I was previously diagnosed with anal cancer and I've gone through chemo and radiation - I didn't want to deal with that again. I had DCIS in one breast and the other breast had several different cancers - go figure. I'm happy to report that I made the right choice for me - bilateral mastectomy with tissue expanders (TE). I've received a total of 650cc's in each breast and May
10th I'll have surgery to remove the TE's and my "new" silicon boobies will be placed. I've been extremely pleased with all of my PA docs! If you need anything - the women and information here is great - you are never alone to fight this battle!!!  My very best wishes to you!!