BMX-after lumpectomies - how reliable is pre -BMX SNB?

dragonsnake

I would really appreciate your take on my situation. I was diagnosed with 3 cm high-grade+ comedonectosis DCIS, had two lumpectomies that removed about 9 cm of it total,  one margin is still focally positive. My surgeon offered a SNB with the first lumpectomy, but did not insist. After reading some papers that leaned toward not doing SNB for DCIS I called him and asked if it was OK not to do it. He said it's ok. After no clean margins, we agreed on MRI. MRI of the  breast that had surgeries was inconclusive, with two small suspicious nodules that may be malignant. The other breast also showed high signal when contrast was used, suspected cysts, but otherwise seemingly benign. RO and MO said that there is no sense to save the affected breast because almost half was already removed anyways. Second opinion at UCSF: reviewed all pathology  slides and MRI;   surgeon at UCSF suggested  a biopsy for the two suspected nodules, cleaning up the DCIS, and performing an  oncoplasty, but also was not against the mastectomy for the cancerous breast. All docs say that BMX is not medically need, and suggest UMX only. I was talking BMX without reconstruction, and my surgeon can do it, if It's my wish; he  scheduled it reluctantly for this week. My reasoning for BMX is that imaging is not effective in my case, future monitoring is torturous, I do not want hormonals if they do not upgrade me to IDC,  I do not want rads, and I want one good arm with unaffected lymph nodes, which is my right arm that I use for writing on the board every day for hours, and for other tasks, of course. I think that it will be more trauma to the chest, and I can possibly get  PMPS. I understand that lymphedema is also possible even with one lymph node removed. I think that I may end up with all these side effects even with UMX, although BMX is certainly more traumatic.

 Surgeon also said that lumpectomies messed up the lymph drainage patterns, and it's possible that he will remove up to 3 nodes on the cancerous breast. I asked about the breast that is considered to be healthy, and he said that he is not doing SNB there, because mapping is good only for the short period of time , the dye will be gone pretty quickly, and he would not be able to find these nodes  after mastectomy anyways (apparently, the nodes  are about 1 mm each). He said that there is no value in removing lymph nodes, and it's done mostly for the purpose of staging should the invasive cancer is found.

I'm afraid that after these two lumpectomies they will find cancerous cells in some nodes  that are first to drain lymph now, and miss possible mets in the ones that were working before the lumpectomies which occur in 5-10% of pur DCIS cases.  

I would really appreciate your opinion and grateful for sharing your experience: Was your LNB done after the lumpectomies?  How many nodes were removed?  What was the status of the nodes? Do you have the lymphedema on the healthy side as well,  or only on  the SNB side?

Thank you

dragonsnake

Here is the update on my condition.

After many consultations and many  considerations taken into account, after two lumpectomies that failed to achieve clean margins, and an MRI that showed more suspicious spots in the DCIS breast and high- background signal in the contralateral breast,  I proceeded with  a double mastectomy, no reconstruction. I had a SNB on the cancerous side only; two lymph nodes were removed during the surgery.  I requested to be given a toradol/ketorolac pre-incision.  I was given ketorolac as a pain-killer after the surgery  (every 6 hours for the first 24 hours) . I did not take opioids, only extra strength Tylenol afterwards.

I had my drains removed on the 7th day. I have a reasonable range of motion, within 90 deg, but cannot dress myself independently. My left hand hurts and feels weak, my shoulder is sore,  but no apparent swelling. My chest swells by the end of the day, though. I do a modified bikram yoga for the muscles in my back and legs, without moving my arms beyond 90 deg.  I also went for a walk several times. .  I still do not have my pathology report because they are waiting for my previous pathology slides to be returned from UCSF where I had my second opinion.

I really wouldn't be able to go through all this the guidance and support of wonderful ladies on this board . THANK YOU for being there for me, for your wisdom and kindness, for your hard work educating other members, and your relentless following of all relevant research.