Surgeon vs Oncologist First?

Hi all,

I was just diagnosed this morning with DCIS plus a microinvasion of IDC, possibly pagets. I am being pushed to go immediately see a breast surgeon. That doesn't make sense to me? I would like to talk to an oncologist first and understand in greater detail what my condition is, what my treatment options are, etc... before I go see someone who wants to cut into me. Anyone else see an oncologist first? Anyone know why it seems the standard approach is to start with a surgeon?

Thanks

While you do have a diagnosis presumably from biopsy, surgical pathology is what will determine your actual diagnosis and suggest what treatment options are open to you.

A surgical oncologist will be able to discuss the results of the biopsy and review your surgical options. S/he can also order any other tests that might be needed in order to get the bigger picture, such as a breast MRI. A surgeon is NOT there just to "cut into" you (and you will, let's face it, need surgery no matter what). Your surgeon should be a member of a team dedicated to helping you achieve the best outcome in the way that best meets your needs. The same holds, of course, for your medical oncologist and radiation oncologist.

You can certainly consult with a medical oncologist at any point but they will be speaking in much more general terms until your surgery provides the complete picture.

As for seeing a surgeon prior to biopsy - that's frequently the case, but not always. Different providers have different preferences in this regard.

Dagny, do you have a nurse navigator at your clinic? If so, she can help you make sense of all of this, walk you through the timelines, what to expect, etc., etc. At worst she can be a good resource for how things are done in your area. At best she can be a great resource and sounding board, someone who really helps you get through this.

i was DX day before Thanksgiving (way to screw up my holiday, cancer!) and it didn’t make sense to me too but I was explained tgat surgery is needed either way (just as Hopeful8201 says) and it will reveal detailed info abt your cancer-the nodes involvement, the grade, the KI-67-even though we have that info from biobsy, I am told it may change when they look at the whole tumor rather than tiny piece of it. They can also setetmune the stage-as it can change from initial diagnosis.

I am curious about one thing and can’t seem to find an answer-can I “graduate” from stage I to say IV after tge surgery? Is it possible that US and MRI showed no nodes involvement but in fact they are really messed uo?

I have my surgery on Dec. 13th and I am really scared-I am waiting on BRCA test results that will determine whether I need a lumpectomy or double mastec.

Anyways, good luck to you

I think I did everything out of normal order. When I found a lump upon self exam I went straight to the oncologist I had with a previous and different cancer treatment. He discussed my options based on the pathology report from my biopsy and had me go see the surgeon to get all options. So I would recommend seeing both and getting all options and making a decision from there. I would also recommend that if surgery is the way you choose you should be aware that you can begin the process of reconstruction at the time the mastectomy is done. I did not know this and might have opted for it had I known. It would saved having to have a second surgery to have the expanders implanted later.

Surgery is not always first. In the case of HER2 positive - chemo is usually recommended before surgery. And any doctor can order imaging.

Honestly yes surgeon makes sense to see first. For most women I think the first step is to remove the offending cancer (we all want it OUT). Some tumor sizes and pathology types do better with chemo first to shrink but I think the surgeon would have a grasp on that and refer to onc as needed early on. I had my surgery consult hours before final pathology reported and a lot of the conversation revolved around waiting to see what the pathology was before making any decisions. Once that came back there was no reason to see onc until later. I also think she presented my case behind the scenes at a tumor board. They all talk amongst themselves, pretty routine in medicine.

Hi everyone, this is my first post. Sorry we all have to be here. I am wondering what to expect at the oncology appointment. I got my pathology report back and I was told the oncologist needed that before I saw them so that they would know what to recommend for treatment. Do they normally advise that you have a breast MRI or Pet Scans?

DagnyT,

No, my IDC was a tumor just under 2 cm with clear margins at ~10 o'clock in my right breast, not too near the nipple. The amount of tissue that was taken during my lumpectomy did get kind of near my nipple, but that was all on the inside! My incision is at the top of my breast towards my armpit- a pretty good spot, all things considered. No pathologic evidence of microinvasion, however, I am planning on radiation therapy just in case based upon my surgeon's recommendation. Then tamoxifen for five years since I am pre-menopausal. I don't expect that plan to change, but hope to meet my RO and MO in the next couple of weeks and I will see what they have to say.

How are you feeling and handling everything? Are you learning a lot and getting a little morepeace of mind? Knowledge is power!

I saw a breast surgeon before an MO, because my biopsy only showed DCIS, and everyone was pretty sure there was IDC as well, just the DCIS was so large that the biopsy couldn't get to it. So I didn't see an MO until after post-surgical pathology reports came back with IDC.

Dagny,

I've finally stuck my toe in the "Just diagnosed" waters. How did your appointment go today? I'm actually seeing a surgeon first as well. Appointment tomorrow. Ill add the question "why am I seeing you first" to my list of questions. Hope you are doing ok

DagnyT - Here's a little about my experience, maybe it will help you with some of your questions/decisions. Mine happened opposite of yours. I noticed the smallest bit of white scaly skin on the nipple back in July. Looked like a skin condition, nothing more. Never peeled, bled, cracked, nothing like typical Paget symptoms. I went to my GYN because I had not had a mammogram last year, I was 45 and my left breast just felt sore in general. Long story short, mammogram was negative but while the peeling never changed for the worse (my husband couldn't even notice it) it never completely went away. My GYN sent me to a dermatologist who after trying creams and steroids finally did a biopsy. A biopsy is the ONLY way to test for Pagets. Biopsy surprisingly came back positive for Pagets. I have no family history. I met with an oncologist first but only because that was the first person I could get into and who the Derm recommended. She ordered the MRI. After the MRI I got a second opinion from an amazing team of doctors who are closer to where I live. They work together as a team with a radiologist and with a nurse navigator who helps coordinate appts between the team. MRI revealed a mass directly behind the nipple (under the Pagets) as well as two more spots, one in each breast. I did a core biopsy of all areas, two surprise spots were both B9 and mass under the nipple was DCIS. I had an augmentation done almost 7 years due to not having much breast tissue that also played into my treatment. I did not have enough breast tissue for a lumpectomy but had already decided that a BMX was the only thing that would give me piece of mind. Also, knowing that I would lose the nipple on the left I wanted symmetry on the right. Last Thur, 11/30 I had a BMX with silicone direct implants. My nodes were clean and I'm still waiting on final pathology but am super happy with my decision and initial results. Hope your appt went well today, keep us in the loop!

thanks ladies (and glad / sad to see you over here pharmgirl). So met with the bs at Dana Farber, who came highly recommended from a coworker that had been a patient of hers. I went to the appt prepared with about 25 questions written out regarding things from interpreting my path report, to radiation and chemoquestions and surgery questions. Pharmgirl, since we have similar dx (although more about that below) if you want to pm me I am happy to email you my question list....it is very comprehensive!

The bs basically said, she couldn’t answer most of my questions about my dx because the samples from the biopsies are small and they need to wait and see the bigger tissue that they would remove during surgery and wait for a final path report. Although she DID tell me that I should not consider myself to have DCIS with a microinvasion....that I should consider myself to have IDC. Because at any time that there is an invasive component shown on a biopsy, they pretty much just move on to ignoring the DCIS and treat the invasive cancer. That was kind of disheartening.....so pharmgirl, be prepared to maybe hear something like that.

All my questions about other things, like radiation and hormone therapy...she just said you’ll have to talk to someone else about that! Which goes back to my original posting.....why start with a surgeon rather than the cancer doc? I am now back to trying to get an appt with the medical oncologist and the radiation oncologist, and the only reason she was going to support that was because I told her that the answers from the radiologist would impact my decision to do a LX vs a MX.

So, a frustrating experience that still left me with a lot of unanswered questions. I have a second opinion appointment with a different bs at Sloan Kettering on Tuesday....maybe that one will be better.

DagnyT, so sorry you had a less than optimal, putting it mildly, encounter with the breast surgeon. Given you told them up front you have a bleeding history, it is annoying that she delegated your biopsy to a nurse, instead of doing it herself so she would be there just in case there was something in her expertise above that of the nurse that could have minimized the bleeding (maybe it would have, maybe it would not have). It was inappropriate in any event of the nurse to joke and laugh about all the bleeding you had, probably nervous "oopsie" laughter because she did not take you seriously when you told her, instead time she should have just apologized and made sure you were ok and told you she would note it in the chart so extra care could be taken next. Next time you go, I would ask them to put in writing into your chart that you bleed easily, and persist in making sure it is there every time you see a doctor. Assuming you are not on aspirin, non-steroidals, some herbals, or other meds that make people bleed easily, and you have a normal platelet count and coagulation profile (did they even check?), this may be relevant to how they plan your upcoming surgery, or they may even want to investigate your coagulation profiles more pre-op.

I am also an easy bleeder and easy bruiser (due to my prednisone therapy for my autoimmune problems) and warn them repeatedly.

A medical oncologist should generally be able to talk to you more about your options and answer your questions, as they are in charge of the big picture and not just the cutting, but it is sad that this surgeon did not even give you an outline, which I understand most do to some degree, of basic pros and cons of LX vs MX. Because, as you point out, knowledge can make a difference in your decision whether to do a lumpectomy or mastectomy, and the timing thereof, it is critical to have those conversations. I had talked to an awesome medical oncologist on the phone about 10 minutes before I saw her at all weeks later (referred by my primary care, the MOC had called me to talk almost immediately, it was the end of a day), then saw the surgeon the MOC strongly recommended as being among the best in the area (she is not on my insurance plan, so insurance only pays a part of her fee, but often you get what you pay for and if I am paying extra , non-preferred providers know they have to offer something extra to patients or no one will bother seeing them, with their higher fees ). The surgeon then outlined options, meanwhile I was doing all my reading, and then, well-informed, we went ahead with the LX (I still had issues with the anesthesiology pre-op, but that is another story). I keep seeing the BS for wound follow-up, but the big plan is now in the hands of the MOC, whom I have met and like. I am happy that she is a person who thinks outside the box and is not just a systems robot trying to push me into just following a standard one size fits all algorithm, she is treating me as an individual with a complicated past medical history that makes decisions not so simple. She went over all my questions, looked at all my notes, seemed to be thinking hard, and spoke frankly about unknowns, showed me papers on her iPhone that addressed specific questions and I took down the citations to read on my own.

Dagny, I hope your next visit with the next BS goes better, that you see a MOC, and that you also keep your psychiatrist appointment to get early input on setting up a plan of mental health care for you.

thank you all for the wise advice. I will be good nag into my second opinion appt on a Tuesday morning feeling much better prepared. And hey, if I feel the same disconnect with the second dr, it will let me know that part of the issue might be me