Follow-up care after BMX for DCIS? (Dxed at age 27)

delbo

Hi everyone,

I was hoping that someone might have advice for me. I was DXed at age 27 with DCIS via tests prompted by a small lump and bloody nipple discharge. Due to my young age, strong family history, high grade with necrosis, and the location of the DCIS; BMX was actually the treatment that my breast surgeon strongly recommended for me, and it is the only treatment I have received. Because I only underwent surgery without any other treatment, though, I've never met with an oncologist, and I no longer have any follow-up with my breast surgeon because I no longer have breast tissue.

I think that I would like to at least have a consultation with an oncologist, and I would really like to look into the possibility of some kind of regular screening, especially because I am so young. I'm wondering if anyone else has been in a similar position? If so, what route did you take and why? Part of me feels like seeing an oncologist is wise, and I would like to have some of my questions explained by one, but another part of me feels like "well, if I'm not seeing an oncologist, it's because I don't need one, and trying to go see one is a waste of everyone's time." I mentioned this to my gynecologist and she gave me a general referral to go see an oncologist, but I don't know where to go from there, and I am afraid I might just be being needy (but at the same time, I do worry about not being monitored!). Any advice or direction that anyone can offer would be really appreciated!

MTwoman

Delbo,

I can give you some ideas about follow up from my own experience, but things have changed a bit since I finished treatment (14 years NED). I had UMX due to multifocal DCIS, which was ER-/PR-/HER2-. They didn't do rads after MX for DCIS back then (although I hear that they occasionally do now). I went one time to a MO to discuss whether there were any additional recommendations for me. He reviewed my pathology and suggested that there was no evidence that Tamox would be helpful with ER-, but he'd prescribe it if it would "make me feel better" (and not in a sarcastic way, he was truly trying to just provide me with a tool if I felt like I just needed to do something). I declined as I really didn't want to take on potential side effects just to "make myself feel better", and was comfortable I had done all I could reasonably do at the time. After my ps finished my reconstruction, I didn't follow up with him any longer. After that one consultation with the MO, I only followed up with my OB/GYN for 6 month scans at first and then yearly ones. (edited to add, I was 38 at the time)

I don't think it is a waste of ANYONE's time for you to go for a consult and have a discussion about whether there are any additional things to consider. Even if there aren't, just so you can have that conversation and know, its worth it. Making your follow up plan, and what to do in the event of . . . is relieving. When you're just finishing up with "make the plan and get 'er done" mode, you are in transition. It makes sense to have a transitional plan. Just stopping cold turkey can feel quite jarring!

I hope that helps. Sending you light and hugs!

MinusTwo

Delbo - I agree. Make an appointment with the MO and write down a list of all the possible questions you've had in the last year. I insisted on meeting with an MO before my surgery, and was glad to have his corroboration to the surgeon's plan. It's always good to set your mind at ease.

LAstar

Yes, I strongly urge you to find an oncologist that will monitor you. It's good to have established care with someone who can respond to you quickly if something seems amiss. I was diagnosed at 42 and had trouble finding an oncologist who would follow me. After having BMX for DCIS, everyone just kind of shrugged and said that I have a great prognosis but that's all we can do. I finally found an onc who sees me annually, schedules every-two-year MRI's, answers questions, checks my reconstructed breasts, and suggests genetic testing as new tests become available. Given your young age at diagnosis and family history, it should be much easier for you to find an onc. You may need a referral from your breast surgeon or PCP. I suggest requesting an initial baseline MRI for comparison with future imaging. It may take a few tries to find the right person, but it is worth looking around. Best wishes!

delbo

MTwoman, MinusTwo, and LAstar,

Thank you all very much for your reassuring advice! It helps a lot, and, MTwoman, you definitely hit the nail on the head with the idea of "stopping cold turkey" being a difficult space to be in. I'm going to being to write down my list of questions and make some calls this afternoon so that I can meet with a MO.