Recently diagnosed, met with surgeon, do I need an oncologist?

Nursepatient35

I was recently diagnosed with DCIS 1 cm. My family doctor referred me to a general surgeon. We've decided on a BMX with tissue expander reconstruction. I'm meeting with a plastic surgeon this Friday. No one has said anything about seeing an oncologist, needing an MRI or any genetic testing. Should I be asking about this or do I need it since I'm stage 0. Is this all testing they do after surgery? This is all new to me and I'm trusting the doctors know what to do but I see others doing more testing. I don't want to look back years down the road with another tumor somewhere wondering if I did everything I should've done.

Annette47

If you are having a BMX for pure DCIS, there’s no reason to see an oncologist unless something unexpected comes up in pathology. I had a lumpectomy with radiation, and then 5 years of Tamoxifen. I did see a medical oncologist but his whole function was the Tamoxifen. I actually had my last appointment with him earlier today - he said to finish out the prescription but not refill it and said as long as I am seeing someone (the surgeon and the radiation oncologist) once a year there was no need to continue with him.

There’s no need for an MRI since you will be having all of your breast tissue removed - the purpose is to see if there are any hidden areas of concern elsewhere in the breast which might determine a need for a BMX over a lumpectomy, but you’ve already made that decision. As for genetic testing, the only possible reason would be to get information for your children. The treatment if you are found to carry a genetic mutation is a BMX, and since you are already going that route, nothing would change if you were to be positive.

The main thing you need to be concerned about is whether your diagnosis remains pure DCIS (Stage 0) following surgery or whether as occasionally happens, there is some invasive cancer which is identified following surgery. If that were to happen, at that point further testing would be done if necessary and you would probably be referred to an oncologist.

Sitti

Hi Nursepatient35, I'm sorry you need to be here but you have found a good place for encouragement and support. I was also DX'd with DCIS. For me, I was not initially referred to oncologist for several reasons. Pure DCIS is noninvasive, completely contained within the ductal walls. Also, my hormone receptors were negative. I had BMX and the final pathology did come back as pure DCIS. Had it come back with IDC then I'm sure I would have been referred to MO (oncologist). With all that being said, after I was through my BMX and had expanders in, I did request a referral from my PCP to see the MO to ask some questions for my own peace of mind. I spoke with MO and he basically assured me that with BMX it wasn't necessary to see him, if I'd had an LX he said I would have eventually been referred to him though. But he did offer to follow me once a year and do skin checks if I wanted, if I'd be more comfortable with him following me for a while. I remember asking my nurse navigator about when to see MO and she said usually with DCIS (at least in my case) I'd see MO after surgery if needed. I've come to learn, you are your best advocate. If you have a nurse navigator you can also call her and pose the question to her. Sorry for rambling, hope this helps some.

Wishing you the very best. If you have any questions feel free to pm me. Sending gentle hugs.

Georgia1

Hi Nursepatient. I'm not trying to change your plan, honestly, but I am a bit concerned that you have only seen a general surgeon. An experienced breast cancer surgeon, who specializes in breast cancer, would be better placed to discuss lumpectomy vs masectomy with you, since it is a small 1 cm spot, and also explain the basics of radiation and hormone therapy. So if you feel you would like a second opinion, and it sounds like you do, you can certainly take the time to do that, either with a surgeon or with a medical oncologist. Wishing you all the best.

Nursepatient35

thank you for your reply. It's so nice to talk with people who've been through this. I should've said my general surgeon does specialize in breast cancer as well, she's just not an oncologist. I feel like the lumpectomy with radiation would be such an easier option, but just don't know if I would always be worrying that it will come back someday.

Annette47

One thing to consider is that you can always go with a lumpectomy first and then if you really can’t live with it, go back for a mastectomy, but once your breasts are gone, there’s no going back.

I had a very small (about the size of a grain of rice) area of cancer and never considered a mastectomy. It just felt like overkill to me, but everyone has their own comfort level. I can say though, that 5 years out I no longer worry much about it coming back, although I did in the first years afterwards. Not that the odds have really changed, it’s more that with time comes perspective.

Outfield

Unless you have a specific reason - like a really big tumor that can't be removed without chemo first to shrink it, or you want a lumpectomy but the tumor is too big for anything but a mastectomy - the medical oncologist can't do much until after the surgery anyway. They need the pathology report. As others have said, it makes a big difference if only DCIS is found on your surgery pathology, or if there's something additional. You just can't know until it's done. You also need to know the hormone receptor status, and, depending on the situation (which means depending on the pathology report), possibly the Oncotype (or similar genetic test) score.

LittleLori

Hello! I was diagnosed with Atypical Lobular Hyperplasia after a core biopsy in 9/2014 and had an excisional biopsy (benign), so I've been seeing a surgical oncologist annually. My mammo in 9/2017 showed concerning calcification, and another stereo-core biopsy resulted in a DCIS diagnos, low grade, cribiform type. My local surgeon offered both options, but recommended lumpectomy with rad, stating the long-term outcome was the same as a mastectomy.

Had a second opinion at Univ. of Penn and was given the same recommendation. I chose a lumpectomy with rad, as I did not want multiple surgeries with reconstruction if I could avoid it, while having the same prognosis. I had my surgery two weeks ago, and my final pathology showed a 4mm area of DCIS, with atypical ducal and lobular hyperplasia. Meet with radiation oncologist in 2 weeks and medical oncologist next month for hormone therapy. I feel comfortable with my decision and anticipated long-term outcome, but it's important to do what makes you comfortable.

I would recommend getting a second opinion for peace of mind. I felt good about my decision after getting the same recommendation from two surgeons, one of which bein from a highly regarded cancer center.