How long before testing?

Twaz

I'm not really sure where to post this, but since everyone here is playing the waiting game, I figured it was a good place.

How long did you wait to see a doctor?
How long after that did you start testing?

My mammogram, US, and biopsy were within 48 hours. I had to wait the weekend for my dx and then another week to see the surgeon- that is this coming Monday. My oncology appointment is IN MAY. My nurse said they would probably move that up, but she just wanted to get me on the calendar. I'm a triple negative and have node involvement, so I know things are pretty dang serious. It seems like everyone else is in within days, so this is scaring me.

LisaAlissa

Hi Twaz!

It sounds to me like you are moving along very, very quickly. Perhaps even too quickly. Increasingly, medical oncologists (MOs) are suggesting pre-surgery chemo (neoadjuvent chemo) to (1) shrink the tumor before surgery, and (2) to see what chemos work on your particular tumor.

If you have surgery before you even consult a MO, you'll never know whether they would have suggested that course of treatment for you. You may want to get a second opinion on something. For example, the pathology...or the treatments suggested by the docs you see first.

Generally, with IDC, there's time. (There are types of BC, like inflamatory breast cancer (IBC) which are a genuine medical emergency...but IDC isn't one of them.)

Hang in there and come back and talk with us if you'd like to discuss what you hear. You may want to record your consultation with the surgeon, as it's hard to hear and retain info when they're talking about your cancer!

On the MO appointment in May, try calling the MO office and tell them you're wondering if they would suggest chemo before surgery, and ask if there is an earlier appointment you could get.

HTH,

LisaAlissa

Twaz

I called my nurse & she said the oncologist is reviewing my slides today and we should know more by Monday. Based on the research I have done, triple negs generally have chemo first, which is why I thought the surgeon first was odd. I don't even know what we will talk about, other than surgery options.

Maya15

Hi Twaz,

Sorry you're going through all this waiting. I think you will get some answers on Monday and would probably get the oncology appointment moved up, or failing that, referral to another oncologist who can see you sooner. It's a good sign that the oncologist is looking at your slides. I saw the surgeon first (I think that's common). Usually the breast surgeon and oncologist work together to come up with a treatment recommendation, and in my case the surgeon had already discussed my case with an oncologist once they got the initial scan results and he took me directly to the oncologists office to see her (I go to a large cancer center where all the doctors are in the same place). It's possible they will need to order some more tests. I also have lymph node involvement, and the surgeon ordered an MRI (had it next day) and a PET/CT to check for spread elsewhere. Oncologist ordered a bunch of blood tests. When the results were all in, the surgeon called me and said he and the MO were both agreed I should have chemo first and I started within a few days.

All told it took about 4 weeks for me from diagnosis to start of chemo. During that time I had all the scans and needed 8 biopsies, with several days wait for results between each step. It felt like an eternity but they needed to know exactly what they were dealing with before deciding on treatment.

Hope all goes well for you on Monday.

placid44

Twaz,

I think the surgeon is often the "lead" on one's team. She was for me and others I've talked with. Can't guarantee that's always the case. So surgeon APPOINTMENT first makes sense to me. I would hope it will be chemo before surgery. I saw your other post about possibly starting chemo in May. I agree that that is too long, if that is what they stick with (instead of just booking you then so you are on the calendar). I started chemo nine days after diagnosis, but that's unusual. On the other hand, the "a few weeks won't matter" doesn't apply to high grade/triple negative. It will be good to get your pathology/grade/proliferation rate. I'm not at all trying to scare you. I felt much better once chemo started

jenn32214

New here, recently diagnosed with IDC as per biopsy of micro calcification cluster in left breast. (Right breast also had micro calcification cluster but that came back benign)

No lump that we know of, but actually leads to my question here. I am scheduled for a breast MRI at the end of the week. I see some of you mention lymp node involvement. how do you know that before surgery? is it felt, showed up on an MRI, something else.?

Thanks again

Maya15

Hi Jenn,

For some people enlarged lymph nodes can be felt, for me they showed up on both sides on ultrasound and MRI. Enlarged nodes doesn't mean there's cancer there, the only way to know for sure is a biopsy. On my scan reports the nodes were listed as suspicious for metastasis, and I had ultrasound guided fine needle aspiration biopsies on both sides. That type of biopsy just tells you positive or negative for cancer. Results were negative on left side and positive on right side where the cancer is.

jenn32214

Thanks!. As I said I am scheduled for a breast MRI at the end of the week. When people on this forum talk about MRI, is it assumed they mean breast MRI, or is that said specifically?

Maya15

Yes it's breast MRI. They can see the breast and regional lymph nodes in breast area.

Kicks

When an MRI is mentioned it may, or may not, be one limited to the breasat. So it is possible that 'one' who mentions an MRI having it limited to breast area however another may be referring to a full body (or limited to other specific area) to be 'looking for' mets or issue(s). We are each so unique (as are our individual DXs) so there is no one answer to fit everyone.

Nodes - it can be known pre-surgery - IF suspicious nodes have been biopsies with the path. report showing positive or negative results. It is true that the post surgery path. report may not show the same results as pre-surgery biopsies did.

Enlarged nodes can be caused by other reasons than BC. They can be biopsies to check if suspected. For me, my IBC first presented with an enlarged node which was biopsied (FNB - Fine Needle Biopsy) with the path. report the next morning - IBC. In the years since, I have had 2 limited area MRIs but have never had a breast only MRI. Others have had breast only MRI and in some contexts it is logical to infer that breast only MRIs are being meant but definitely can not be assumed every time 'someone' mentions MRIs.

It is great to get all the info/experiences you can but it must remembered that there are so MANY variables that make it impossible to know exactly what you will experience in your journey down this road because of what someone else says they did. It is quite possible to be very similar but no way to know for sure what you will until you actually do - be prepared with input as to what might present - but do not decide that all that has happened to 'one' will automatically be what you experience.