Radiation vs. Mastectomy with ATM defect

BostonHomie

Great community site! Would love input...

Tested positive for the ATM defect. Invasive carcinoma, ER/PR +/HER2- stage 1. Lumpectomy completed. Margins and lymph nodes clean. Tumor 14mm scored 11 on oncotype so no chemo. Post menopausal, hormone therapy planned

Question is whether or not to have radiation which had been the plan. Then met with RO who raised concerns re: possible significant side effects due to the ATM defect. After 30 minutes of hearing the risks, negatives, RO said she would not necessarily recommond against radiation (though that was the message I was hearing).Alternative is mastectomy.

Second opinion with another RO scheduled.

Would love to hear from others who have been down this path. I need to decide soon.

jayca66

if it were me (also have ATM but not discovered until my recurrence and radiation) I would do a bilateral mastectomy and chemo. Reason being is the significant increase in risk for a recurrence including opposite side breast cancer and you don't want to have to go through more surgery 2 yrs down the road just to get a mastectomy anyways.

Not advice, just what I'd do. I had the bilateral mastectomy and chemo the first time and radiation the second. Nothing but more knowledge and understanding would have changed our decisions if we'd known about the ATM except the radiation. I would have insisted on more systemic treatment instead. I also had a complete hysterectomy as a proactive measire.

BostonHomie

Wow, you’ve been through a lot. Thanks for your input, Jayca66. 

I’m a bit confused though. You had a bilateral mastectomy and chemo for your first occurrence, prior to knowing about the ATM mutation. And then had a second occurrence which was treated with radiation following learning of the ATM defect. Is that correct?

Guess I’m surprised at the second reoccurrence following the bilateral mastectomy  And also surprised a bit that radiation was an option after the ATM discovery.

If I can ask, what was your age at initial diagnosis and the stage the first time around? Was an oncotype test included the first time?

This is all mind-boggling. Thanks again.

SimoneRC

Hi Bostonhomie

I too have the ATM mutation. The decision for a bilateral mastectomy was a no brainer for me. I have a first degree relative with the mutation who developed significant, disabling issues 5 years after completing radiation. Also, the risk of contra Lateral breast cancer was not something I wanted to deal with, especially given the radiation issue. My RO at a major cancer center did not want to do radiation on me.

It is a big decision. Follow your head and your gut! Good luck and feel free to reach out any time

BostonHomie

Thanks for your response to my note, SimoneRC. Brave of you to jump to the double mastectomy based on the ATM defect. My oncologists have said nothing about a double. Do you mind sharing the side effects your relative encountered with radiation?  Interesting (and scary) to hear the side effects were much later to the treatment. I hope she is improving. I’m leaning toward the mastectomy but any info helps. 

How did your reconstruction surgery go?  Thanks, again. 

SimoneRC

Hi BostonHomie,

Radiation induced plexopathy. Relative had radiation for different type of cancer. Has progressive and irreversible loss of feeling and muscle atrophy in feet and ankles. It is really bad.

Bilateral mastectomy as there is a risk with ATM of cancer in the other breast, contra lateral breast cancer. Both my BS and Genetic Counselor at major cancer institute discussed this ATM risk with me.

I have been super lucky so far with my surgeries. No infections, kept nipples despite super thin skin, not a ton of pain.

I was able to do pre pectoral reconstruction. I have no issues with animation deformity and can freely and totally use my arms and shoulders with no loss in range of motion. I have full strength.

I will most likely have some follow up in the spring. With my thin skin, I am a bit more asymmetric then I want to live with. But we will see. In most clothes, nobody would ever notice.

If we ATM'er's with breast cancer were to get radiation induced plexopathy it would brachial plexopathy. Shoulder, arm, hand. No thanks, I will skip that!

It is a super tough decision and lot's to think about. There is no right answer, everyone is different and needs to make the decision that they can live with best. For me it was clear cut. Others in the same boat may make another decision. Please though at least consult with an NCI as ATM is not as known as some of the other gene mutations.

Keep us posted!