Pokemon, I'm just speculating here, but I would think that a breast surgeon, a radiation oncologist and a medical oncologist all may take a different position on rads than the pathologist, a case nurse and a primary care physician. For the first 3, assessing the need for post-surgical rads is part of their job; the other 3 are just offering an opinion.

When it comes to post-surgical treatment, decisions on rads and chemo are never lumped together. That's because whatever the diagnosis, the rationale for chemo is completely different than the rationale for rads. Chemo is a systemic treatment that is given when the risk of a distant recurrence (i.e. mets) is considered to be large enough to warrant the potentially toxic side effects of the chemo. Because DCIS by definition cannot travel beyond the breast, there is no reason why such a toxic systemic treatment would ever be required. So as Janet said, chemo is never given for pure DCIS. Rads however is a local treatment; it is used to rid the breast of any rogue cancer cells that might be left after surgery and that might develop to become a local (in the breast area) recurrence. Rads is almost always recommended after a lumpectomy, and sometimes even after a MX if the chest wall margins are close. There are rare cases where a cancer is not very aggressive and the surgical margins are so wide that rads is either not recommended or considered to be optional - and certainly with small amounts of DCIS, we are seeing this more and more often these days. But still, it would be unusual to see a "no rads" recommendation in a case where the DCIS is high grade with necrosis.

When do you see the surgeon?

Beesie - there should definitely be a "like" button when you post. x

Ditto to what Jelson said about ER status.

The significance of PR status is a bit less clear. Cancers that are strongly ER+ and strongly PR+ are the best candidates for hormone therapy but having a moderate PR+ status vs. a high PR+ status really doesn't change anything.

From the BC.org pages:

How to Read Hormone Receptor Test Results

Hello, Debbie and Others,

I received my diagnosis today - DCIS. I was called into my PCP's office for an 8:30 appointment today and she told me outright that it was DCIS. I was relieved to finally know and to hear that it wasn't invasive. I don't know how to say this, but she was kind of pessimistic about the whole thing. I kept saying, "Well, it's very early stage. Good that it's been found. Very curable.", etc., and SHE seemed to be NOT optimistic, saying, "Well, it's not hormone receptive (they had sent the results out for hormonal testing, which is why they took so long), so they won't be able to use the meds like Tamoxifen." She also said that no matter what it is, "Cancer can be a wild card." It's a good thing I had done so much research ahead of time, or I'd be quite depressed now.

My mother found a lump (walnut sized) when she was 60 in 1978. She had a mastectomy and four out of 10 lymph nodes also tested positive. She had radiation at Mass General. And she lived for another 33 years. My sister found a lump in 1999, had a lumpectomy, radiation and chemo and was cancer free for 13 years, but has a recurrence now. It's hormone receptive so she gets bloodwork and a shot once a month.

What do you think of my PCP? When she called on the day after the mammogram was done, she sounded very alarmed, told me I'd need to have the biopsy and come back to see her and be referred to a specialist, etc. When I asked her yesterday if she'd known at that time that this was cancer, she said that she actually thought it would be benign, but just wanted to prepare people.

My appointment with the surgeon is on Monday and with the Oncologist is on Wednesday of next week, so I'll know more about the schedule of things to come.

"What do you think of my PCP?"

Generously, I'd say that she has a terrible bedside manner. Less generously, I'd say she's not too bright. She clearly doesn't understand DCIS, but worse than that, she doesn't know enough to realize that she doesn't understand DCIS.

I've been on this board a long time and I've found that quite often PCPs and GYNs over-react to news that really isn't very concerning at all, be it a call-back on a mammogram, the need for a biopsy, a pathology report that shows a bunch of harmless fibrocystic conditions, or, as in this case, a DCIS of diagnosis (which, as you said, isn't invasive cancer and is very early stage). I've seen so many women come to this board, scared to bits because of what their PCP or GYN said or because of how they reacted. My advice is always to discount what a PCP or GYN says - this is not after all their area of expertise - and to instead get your information from an expert in the field, someone such as a breast surgeon. So it's good that you are seeing the breast surgeon next week. In the meantime, put your PCP's words and reaction out of your mind. You have DCIS, and pure DCIS has a 100% survival rate. Of course, that's dependent on not having an invasive recurrence at some point in the future, but minimizing that risk is what your surgery and any other treatment is all about.

I'm in the process today of trying to decide whether to change my appointment to see a breast surgeon on Monday at a small hospital near home or cancel that and get an appointment at Mass General in Boston. A very good nurse friend suggests that I do, although it will take longer to get in to see anyone, because they have to have all tests beforehand, and go over them before assigning a surgeon to the case. I think I'm definitely canceling the first and trying to get the appointment in Boston (although I hate the drive), because I'd always wonder if I should have done that.

Because of my family history and the fact that there is no hormone receptor, I started last night to think of having a mastectomy as my Mom did (at Mass General in 1978). My friend told me that they may still have her records in their archives - that would be an interesting bit of information - Am not at all sure, yet, which is the best way to approach this and I'm very anxious to meet a doctor.

To add to all of my recent confusion - just before I was told that there was a problem and I had to have the biopsy - we began a HUGE renovation of our kitchen. It's an addition to the house, so has no floor above and we had opted to have the ceiling taken out and a cathedral ceiling made - complete with the antique beams that were above the ceiling. We are also going to shift cabinets around, get new appliances and get a new counter top. So, when the project started 4 weeks ago, we had to move everything (even refrigerator) out and into the dining room where I now have a "pretend kitchen". The first week was very dirty out there, because the house is about 200 years old and ancient stuff and dust fell down (like a newspaper from 1868 and a pair of shoes which the carpenter threw out - I would have liked to see them). Anyway, it's quite chaotic. When I'm on the phone the carpenter will poke his head in to ask where an outlet should go and the dogs start barking at him! How ironic that these things are all happening at the same time!

Hope you all are doing well!

Hi Jo!

So nice to meet you. I am in southern New Hampshire. It would just be an hour to Boston, but you know how the traffic situation is sometimes. When the doctor asked me yesterday where I'd like to go, and she mentioned Boston, my inclination was to choose a place I could get to myself if need be. My husband is partly retired and I have adult kids (but they work). I was just thinking that if I went to Anna Jacques in Newburyport (1/2 hour easy drive), where the doctor knew a breast surgeon, that would be fine. Of course, I was still processing all this and having my doctor be SO gloomy.

My friend today strongly mentioned what you just mentioned. Why choose any small hospital when I'm perfectly able to go to Boston. So, that's why I've been trying to extricate myself. Did I mention above that the scheduler at my PCP's office said that it will be a much longer wait to see a doctor, because MGH has to register, give you a number, get all the tests, and only THEN assign a doctor and appointment. I'm nervous to wait since my DCIS is called high grade. It seems to have become cancer in only six months, so I want to get to work.

I have a call back to the scheduler to tell her my final answer so that she can start the process, but she hasn't returned my call in a couple of hours. I just called back and she DID get the message to call me for my final decision, but, "she's been very busy". I'm losing my patience because I'd like to get the ball rolling. I'm going to PM you, Jo.