Bilateral Mastectomy Done - More DCIS Found

KARW41

Just sharing my experience in case it is ever relevant or useful to anyone.

I got the bilateral mastectomy done last Wednesday, almost a week ago.

My pain was somehow minimal (no reconstruction), and only took extra strength Tylenol 1000 mg for two days and then halved it for two days and then no medicine at all.

Drains are a nuisance and only real pain is if I accidentally pull on them, get them stuck on anything, or roll over on them wrong while sleeping.

Also, my feral indoor cat seems to love them, maybe from the smell of blood (??). I have to try to keep him away from them; he's going after them.

I went "flat" and do not regret it.

I am just looking forward to getting the drains out hopefully sooner than later, and to getting to exercise again. My chest muscles were not messed with for implants, so I hope to be back at it soon.

Lymph nodes are clear. They just told me that today. They took out three nodes in sentinel node biopsy.

The injection of the radioactive tracer was not an issue for me at all.

The one thing of note, which I guess in a bad way impresses me about cancer, is that they found a TOTALLY separate area of DCIS in another part of the breast, that 2 biopsies, an MRI, ultrasound, and all the repeat mammograms did not detect, for a grand total of 10 cm of DCIS.

I am amazed that this separate area was only found on mastectomy.

Maybe that happens, but it shocked me that cancer is so secretive despite modern technology.

Only thing is, I have kind of an extra large ping pong ball swelling where they took out the three nodes on the right side, in the armpit area.

I guess I can live with it, if it stays like that.

Overall, I did not have a bad surgery experience whatsoever.

I had to really try hard to find a place that would do the surgery for DCIS with the pandemic. One place (UCLA) told me to wait until at least September due to the pandemic.

In any case, sharing this in case it ever could help anyone else.

Oh, and also: my father and brother keep saying that "I did not really have cancer" with the 10 cm of DCIS.

I guess it is not invasive but it is cancer cells in the ducts and I would have lost one breast because of it, no matter what.

I went with two, given that my mother had breast cancer in both breasts, three times total.

The doctor said with the size and then the pathology finding even more in there that nothing else found, it was the right operation for me to get.

So, I guess I need to go to the DCIS section to ask about that, with them saying "I did not really have cancer."

Thank you all for the support. I would not have made it through so easily without the advice and information here.

DATNY

It is quite amazing to see that size of DCIS without previous warning. How did the doc explain it?

And yeah, after chemo, bmx, rads and one year of immunotherapy I had a close family member telling me that she does not believe it was cancer. But at least, from this experience, I can understand now how some people keep saying covid is not a big deal at all.

December11

If that were my father and brother, I would be annoyed.

KARW41

Meant to reply and tell you thank you JavaJan. I'm glad your surgery was not too bad either.

I am sorry to hear that as well on your own mother.

This is such an insidious disease. I had no genes (currently known anyway) but yet my mother got this three times and now I have it.

It really helps to hear today that the swelling eased up after a while for you.

Very heartening today. Thank you very much.

KARW41

December11, yes, I feel a bit angry but my father spent about 40 years belittling my mother. I used to talk with her about it on the phone, and so I guess his attitude is not unexpected.

LivinLife

Thanks so much for sharing your experience! It will likely help many others. I'm so glad your recovery is going so well thus far!