Received An Incomplete Mastectomy? HELP!

Wheatscapes, I am sorry this is happening to you. I had a somewhat similar situation, although in my case the "incomplete mastectomy" left behind active cancer, so that had to be dealt with very aggressively.

I was originally treated by community doctors, and my original surgeon was very experienced and highly recommended. However, a lot of tissue was left behind after my right mastectomy, including cancer cells - but I didn't know that at the time. A few months passed, and things got weird. I went to an NCI center, and upon physical examination they said I'd had "sub-optimal" surgical management previously, and that removing more tissue was necessary to get local control of the cancer. The NCI doctors basically said that way too much tissue was left behind, and while that might have been appropriate in some cases, in my case it was a huge mistake. The NCI center was 100% right. It's a hard pill to swallow that my original surgeon wasn't aggressive enough in surgery - I have really suffered because of that. But at the same time I'm so grateful that the NCI doctors were able to salvage the situation. Some people at the community surgeon's office tried to give me a guilt trip about going elsewhere, but I didn't fall for it. I can say that in my experience, the quality of care at NCI centers is far superior, and I wish I had transferred there sooner.

Have the NCI doctors told you why they want to remove more tissue? Are the NCI doctors concerned about cancer cells being left behind? If so, I would definitely consider their fears. Don't think twice about the egos at stake for the community doctors - your life is all that matters, not their egos. The important thing is that you get good care, because YOU have to live with the consequences.

Hi Wheatscapes,

Well, I had kind of the opposite experience as you. I had my BMX at an NCI center and went to a different NCI center for radiation. After my RO saw my set-up scans, he told me that my BS had done the surgery with extreme care and attention to detail and it was very complete, but that he often has to send patient for a second mastectomy, especially when they have a mutation which makes recurrence likely. He said he's had patients that just look like someone took an ice cream scoop or melon baller and scooped out the core of the breast tissue. My BS explained that she spends hours cutting out the breast tissue because it often has "fingers" that extend into the subcutaneous fat, and the residents that work with her are always surprised to see that. I was able to see on my pre-op scans what she was talking about. My BMX took about five hours for her to complete.

What I don't understand here is how your new BS knows that you had a lot of tissue left behind. Did she look at the imaging? Has your old BS looked at the imagining? I would sit down with both doctors and have them explain to you what they are seeing on the imaging. But really I would lean toward the NCI center. They tend to have doctors who do nothing but look at breast imaging and do breast surgeries day in and day out, whereas the doctors at a community based center would be doing a variety of procedures instead of concentrating on just breast surgery.

Wheatscapes!

You’ve got your head in the game! Putting all of the pieces together. That is so great to hear!

There are some great doctors and local facilities out there. We mutants, however, have special considerations and it is great to hear that you are now in an academic medicine setting!

Sending all kinds of positive vibes your way! Let us know how the appointment goes today.

Wheatscapes, it sounds like you have a good handle on the situation. I think the concerns about the incomplete mastectomy combined with ATM mutation are valid, and it sounds like the NCI doctors are thinking ahead about that. That's definitely a good thing! Best wishes to you going forward.

Keep on feeling better, Wheatscapes! Sounds like you are moving in the right direction each day!

So glad you are in a much better place for treatment! It can really make such a big difference. Just ok is not good enough when it comes to your health.

Yours in ATM-ness!