Genetic Test Negative, 9 cm+ DCIS, not all resected

Anonymous

Genetic Test Negative, 9 cm+ DCIS, not all resected

KARW41

Hello, I just found out that despite my mother having breast cancer three times and just dying of pancreatic cancer, that I don't have any cancer genes out of the 84 they tested me for at least. I was inclined to get a bilateral prophylactic mastectomy, assuming I had cancer genes, since my mother's great aunt also had a female reproductive cancer, and her half brother throuhgh her mother died of pancreatic cancer. I have 9 cm of not totally resected DCIS after lumpectomy. The surgeon I first talked with said I need a mastectomy on the right side with the DCIS.

I thought to avoid further troubles, do a bilateral mastecomy.

However, now, I'm not as inclined to do both sides, except for the Tamoxifen angle. I watched my mother get a hysterectomy and endure a lot of suffering on Tamoxifen. If one gets both breasts off, one would not need to take that, is what they told me.

They prescribed it and I'm not taking it so far.

I saw something else called "extreme oncoplasty," if I get that right, and sometimes it is done to conserve the breast despite multiple large lesions in lieu of mastectomy. I'm hoping to talk with a surgeon for a second opinion, but until now, assumed after watching my mother suffer so much, that I would need to do the bilateral mastectomy.

If I do the bilateral mastecomy, they said I would not have to take Tamoxifen with the DCIS.

In any case, I guess the question is: with DCIS, has anyone been swayed in how to treat it, knowing you have no cancer genes, or I guess the opposite as well??

I thought for sure I had these genes due to the family history of cancer on my mother's side, but the genetic counselor said I apparently got non-carrier genes from my mother and non-carrier genes from my father. (if I understand right).

AMLMom

Hi Karw41, I also lost my mother to pancreatic cancer. She was 43. I have another presumptive case of pancreatic cancer on my mother's side, although it was never confirmed. I was denied coverage for genetic testing.

If I recall, my DCIS was 9.5cm with multiple areas of microinvasion and a small IDC tumour (0.6 cm left after removing a small portion for biopsy). Originally my BS said he wouldn't be able to save the breast given the extent of the DCIS, but ultimately he got comfortable that he could successfully perform oncoplasty. I am very happy with the results (although at the moment I have one smaller breast and one larger breast - waiting for balancing surgery). Given my low risk of reoccurrence, I am very comfortable with my decision.

The tamoxifen hasn't been easy, but I wasn't ready for a MX - it just didn't feel right.

Good luck.

KARW41

AMLMom, I am really sorry to hear that on your own mother, and at a young age. I am just dumbstruck at how there seems to be so little advancement with pancreatic cancer and how fast it ravaged my mother (2 to 3 weeks from diagnosis).

I am not sure how long ago insurance or providers denied you the genetic testing. I got denied a number of years back and then they approved it the second and third attempts. The criteria for qualifying for it had changed.

I really appreciate your response. That is great that you have a low risk of recurrence. I hope surgery goes well and you get a positive outcome on it all.

I just consulted with a breast surgeon whose specialty is oncoplastic surgery. She did not offer that option to me.

She looked over an MRI that another place did, and she expressed dissatisfaction with the narrative description, versus what the MRI image showed her, so she is having me do another one. Something about blood flow and how the DCIS may be higher grade based on blood flow to the area, if I understood correctly.

I'm going with bilateral mastectomy and am just hoping I hold onto the health insurance this time long enough to get it done, aiming for early July.

I do now understand that it is a very individual decision. I mainly hope to be able to get out there and be active and am doing this in part after watching my mother's experience. I think because of family history with breast cancer and having what appears to be at least some higher grade DCIS, I have got some degree of higher risk in all of this.

AMLMom

Hi Karw41, I think my BS and PS got comfortable with oncoplasty because my breasts are fairly large.

I'm happy that you have come to a decision that works for you. It's not easy, but at the end of the day, we have to make a choice that feels right for us. I had everyone telling me to get a BX, and I hope I don't regret my decision. It was so hard to decide.

When I say I am lower risk, I say that based on the fact that I was stage 1A. My BC was grade 3 and comedo necrosis. I'm not sure how much risk that adds, but my MO tells me that he isn't concerned about recurrence.

I wish you all the best with your surgery, and I hope you have a very speedy recovery.

KARW41

Thank you very much for responding, AMLMom. Your response helped me out. I really appreciate it.