BIOPSY MISTAKE

Frances,

I am not an expert on this, but it was my understanding that once they biopsied the suspected area in the breast (which in my case was ILC on one side and DCIS with a micro invasion on the other) that they only way to determine lymph node involvement was to do first a sentinel node dissection (removal), and the results of that did indeed take several days.  I am basically surprised that anyone could tell you anything before the lymph node was sent to the lab for the pathology work.  It was the same once they found that the sentinel node was positive; I had axillary node dissection (removal), and it was some days before the path report came back with any results.  So it sounds normal to me that it could be days later, but odd that they would have indicated it to be negative before that.  Do ask to clarify what happened; it is very important in this process and your upcoming decisions that you feel very trusting and comfortable with your doctors and other providers.  Thinking good thoughts.  Leigh

Frances: I know this is frustrating, but I agree with Leigh that I do not think it is uncommon, and they really don't know until they remove the sentinal node and do a biopsy. I had a needle biopsy done and was told that it was negative. However, when I woke up from surgery (bi-lateral), they told me I had 6/7 positive nodes. This was hard to hear, but I was glad in the end that I opted for the bi-lateral mastectomy.

I think that the patholgists just want to let you know right away if it comes back negative, though in your case, they should have waited until they knew for sure.

 Have a blessed day!

Yes, I was told that there was a 10% chance that the lymph node status could change from initial pathology testing to final. They should have told you that! I'm so sorry you had to hear that news after believing you were in the clear.

All through ultra-sound, exam and  MRI I was told my nodes were probably clear. I went in for a Mx and SNB and was told immediately after that the nodes were clear. Imagine my surprise when I get the path results a month later and there were 9 nodes with cancer! They had done an axillary disection after all (without telling me afterwards) because the surgeon suspected during the operation that the nodes were not clear. I wish they had explained more clearly that no matter what they think in the beginning, it is only the final path report that has the final answer. I had the feeling that every time I went to the onc I would keep getting worse news. The fact is that my "stage" never got worse, it is only that I found out about what stage I was in bits and pieces.

I know that I had to learn ALOT about BC before I could understand the half of what was happening to me. In all fairness to the doctors, it could be that I couldn't really process all the information of what they told me so I possibly assumed that things were more definitive than they were. But I also think that doctors will rush to tell you the good news while they will wait until they are absolutely certain to tell you the bad news.

Yes, I was told too that Mx vs. lumpectomy + rads has the same result. I had to have a Mx on the left side because I had 2 tumors in different quadrants. I ended up having to have radiation anyway because of the lymph nodes. I'm doing rads now- only 5 left and no burning or uncomfort yet. I'm just a little tired.

I had Mx with ALND on the left and lumpectomy with SNB on the right (biopsy said cancer, final path report no cancer....). The surgery really wasn't too bad. The most painful part was having the drains. Once they came out (after 3 days) I was able to move around more easily and didn't need any more painkillers. Both the Mx and lumpectomy were a total piece of cake. What was sensitive and uncomfortable for a long time afterward was the SNB and ALND. I had some swelling on the Mx side and my arm was uncomfortable for awhile but already 2 days after the surgery I had full range of motion in both arms. 

As scary as the operation seems in advance it actually is not such a big one (assuming you aren't doing reconstruction). It is on the outside of your body so they aren't fussing around with internal organs. I had a hysterectomy three years ago and it definitely took me more time to get over that. I am a musician in an orchestra and could have gone back to work 2 1/2 weeks post-op if it hadn't been for my left pectoral muscle that  was cramping (probably got nicked during the op). I ended up going back 3 1/2 weeks post-op. 

After having ALND you should be careful about lymphedema. Have a look at the LE threads here and see what you can do to help prevent getting it.

Just know that you are going through the very worst part of the whole journey right now. Waiting to get going with treatment and lots of decisions to be made. When you finally get the path report and the docs tell you the plan forward things will fall in place. The next months won't be alot of fun, but it isn't nearly as scarey as what you are going through now.

I know when I had my mastectomy 2 years ago- my daughter was in the waiting room- and she had the list of questions that I wanted her to ask the breast surgeon- she very honestly said- she doesn't like to give prelimary results until she gets the final report- as things do change- some of the tests that are done with the biopsies-takes several days- and they are not 100% proof. She had someone due a double check on the sentinel node- because of the type of dcis I had- was very high risk and appeared to have some cells that could become invasive. -it came back negative but she and my oncologist is keeping a very close eye on me.