Second re-excision vs. suggested mastectomy

You are very smart to get another opinion. If you didn't, you would be second guessing yourself for the rest of your life. Whatever they say, it will give you some peace of mind. Best of luck!

Welcome, kayhope20!

We definitely agree with others here, getting a second opinion is always a good idea, especially since you have reservations about the recommendations. It's not an easy decision, but hopefully if you have as much information as possible, you're able to make the decision that works best for you. Please keep us posted!

The Mods

I'd get another opinion (preferably from an NCI designated, comprehensive cancer hospital) before going ahead with a mastectomy. I just hope you can get in somewhere quickly with all the Covid19 around!

I don't want to scare you, but let my experience serve as a cautionary tale: I had a recurrence after a lumpectomy, they said I needed a mastectomy. I agreed, since this is standard of care. However, the mastectomy ended up dragging cancer cells all around my chest wall because the cancer was in places we couldn't see. The cancer came back again, this time it was a huge mess and very dangerous because it had been dragged all over the place. I went to an NCI center, they had to do a chest wall resection. I also had to do so much more chemo and hormone medicine to try and counteract this dangerous mistake.

My situation was uncommon, yes. I don't even entirely blame the original surgeon, but this may end up costing me my life. We cannot change what has already been done, but I would encourage you to make sure you are taking the right steps going forward. Best wishes to you, and please keep us posted!

buttons, what was the basis of your doctors saying that it was the mastectomy surgery that caused the spread? Was cancer found in areas against the chest wall that were far from the original site?

Normally the localized recurrence rate after a MX is approx. 1%-2%. That's a low percent, but when you consider that number of women who have mastectomies, it's a lot of women. That's something that everyone who had a MX needs to be aware of.

kayhope, there are some women who, immediately upon hearing that they've been diagnosed, know that they want a mastectomy, or often, a bilateral mastectomy. And then there are others for whom a mastectomy is the last thing they want. Like you, I was in this second group. I too sought a second opinion. While my second opinion doctor was willing to attempt a re-excision, I had dirty margins all around after the first surgery, and I'm small breasted, so I came to realize that a MX was the only way all the cancer cells could be removed. I very reluctantly agreed to the MX - and honestly, it was much easier than I expected, as was my adjustment. I was a lucky one - I had a pretty painless experience with the MX and the expander.

Good luck with your decision and your next surgery, whichever direction you go.

beesie, my cancer is a bit unique in this way, but yes, the cancer cropped up everywhere along the lines of the mastectomy incisions and spanned several centimeters. I also had needle seeding from my biopsy at diagnosis at the point of entry. I know you are very analytical, so here is a link about needle seeding: https://pubmed.ncbi.nlm.nih.gov/28730339/ These things are very rare, but they DO happen, and it happened to me.

But my intent was not to scare the original poster, because my situation is partly due to the unusual aggressiveness of my cancer. My cancer *should* have died, but it didn't. Kayhope20 will not have the situation I did with a grade 1 tumor.

However, I also want her to be careful in taking the next steps surgically, because after my failed mastectomy the only option available to me was a chest wall resection. In retrospect I should have looked elsewhere and done a more effective/appropriate mastectomy. I hope Kayhope20 can get a second opinion from an NCI designated cancer center before proceeding.

Yes this is another very important point. Definitely meet with an MO at your second opinion appointment, and ask whether chemo before surgery, or even some other approach, would allow you to keep your breast. I hope you find a medical team who can help you with this!

Kayhope20, I completely understand wanting to avoid a mastectomy.

I had a large tumor, and neoadjuvant chemo did such a good job it couldn't be seen on MRI - a complete clinical response. Still, lumpectomy pathology showed a few scattered spots of 2mm in the tumor bed, and dirty margins. Had a re-excision, with dirty margins. My surgeon, knowing I didn't want to lose my breast, nonetheless said he thought mastectomy was needed - that he was afraid there might cancer lurking in other parts of my breast.

The emotional side of me was devastated. The logical side of me understood, and I agreed. I cried for a week after the mastectomy, then cried for another week when pathology came back and showed there was not a single cell of cancer in the breast they had just taken. In other words, all for nothing. The odd thing is I found myself trying to comfort my surgeon, who felt awful about it. The truth is, no matter how good the doctors are (and my surgeon is amazing) there are no guarantees, only best-educated guesses.

Fast forward three years. With the mastectomy being skin-sparing, and DIEP reconstruction, I have what looks and feels remarkably like a "real" breast, even with a perfect plastic surgeon-created nipple. It was a long haul, with three different surgeries. And I still wish I had gotten away with the lumpectomy and re-excision. But I find I've adjusted to the hand I was dealt. Yes, there are more scars, but clothed no one would have a clue they're there. And I don't worry as much about recurrence, because I know for certain there was no cancer in my breast.

So, yes, get a second opinion. And I would agree it's best to go to an NCI center. Only you know your tolerance for risk, and it's a difficult decision to make. But if you do go with mastectomy I want to give you hope that you will find your way through it. Wishing you all the best.

I am similar to you and not similar as you say, but I am 54 and have quite the family history of metastatic breast cancer. I was thrilled/not thrilled when I found out I had cancer, but not metastatic, because honestly that is what was always in the back of my mind. I am in a city of about 250,000 people and knew my destiny here would be a double mastectomy and like you struggled with that thought. I knew if I stayed home what my outcome would be, they were very quick to give me my plan on the phone when they gave me pathology from biopsies. I went to MD Anderson in Houston, Texas. I followed this surgery with radiation that ended in March. This surgery was in February and I go back in two weeks to see if I'm where I need to be, if not then chemo comes into play. One of my margins (they took two places on my left breast and three on my right) was not good, but the others were ok.

For me at age 54, I was not a candidate first go around for a nipple sparing mastectomies or I probably would have done that. At my age gravity took control and nipple sparing has a lot to do with whether your nipple aereola complex is placed correctly and chances are high that is is not, so skin sparing most likely yes but then you lose your nipples all together. Some get tattoos and never look back, I did not want that outcome. My surgeon explained to me if this reoccurs at that point (depending on my age) I will actually be in a much better position to do a nipple sparing mastectomy, but nothing is a 100% guarantee because it is a "game time decision" to see if nipple can be saved. They determine that on the surgical table with blood flow and such so you would go into surgery not knowing whether or not nipple were spared.

Women very easily say things like "if that were me, I'd just cut them both off" without really thinking about what they are saying. I chose to do partial mastectomies bilaterally because I had DCIS/Invasive Ductal on my right side and LCIS/mammary hamartoma (benign) on my left side. I had microsurgery directly after other procedures and have kept my breast, retained most feeling and in the process have a "semi-normal" look and feel. I will need a revision in the Fall most likely because radiation does strange things to breasts. Even though this was in many ways a longer process than a mastectomies would have been, it was my choice. ABSOLUTELY get a second opinion and third if the first two make you wonder. Go to the best facility you can that you are comfortable with. Best of luck, sorry you are going through this.