Mom diagnosed with IDC on 11/09. Timeline question...

help4mymom

My mother, who is in her 60s, was recently diagnosed with breast cancer. Currently, she has no idea what stage breast cancer she has nor does she know her next steps.

Her timeline is as follows:

• Initial mammogram: 10/5/16
• Follow-up mammogram: 10/14/16
• Ultrasound: 10/14/16
• Biopsy: around 10/24?/16
• Diagnosed: 11/09/16
• BRCA testing: 11/14/16

I do not have access to her pathology report, but she says that it says Invasive Ductal Carcinoma. She also said it says Nottingham 1/3. She is HER2- ER+ PR+. (She had 2+ on HER test, but FISH test said she did not have HER+) The doctor's office NEVER explained her pathology report. The nurse just read the info to my mom over the phone (???) and she had to pick up the pathology report from the doctor's office. I had to google the information to explain it to her.

She had an appointment today, and she said all she did was weigh, have blood pressure taken, and have the doctor tell her that they did not have BRCA results back due to insurance.

They did NOT schedule a follow up appointment. They said if she was concerned, that she could schedule a followup appointment (who wouldn't be concerned?????). They said that they needed the BRCA results back before they could schedule anything further (huh??). That makes absolutely NO sense, as my understanding is many individuals do not test for BRCA.

Am I crazy to think that we should have some sort of removal/treatment/plan scheduled or in place NOW before the BRCA results come back? I am beyond frustrated. Who knows, I might be overreacting. My mom lives in a very small town and I am worried that they are not giving her the kind of care she needs.

How long does it take to find out the stage of cancer? Do doctors typically leave appointments open-ended? Do you have to wait to hear back from BRCA results?

Any clarity regarding an anecdotal timeline or any advice would be greatly appreciated. I am sorry if I seem frantic. I live over 1k miles away and really want to advocate for my mom. Thank you for reading this!

Moderators

Hi Help4mymom-

We can certainly understand your frustration! One of the aspects of all of this that many people are shocked to learn is how slowly things move along in the beginning. Many members wait weeks between diagnosis and start of treatment. At this stage, a few weeks isn't going to make much of a difference, although it can be very frustrating and concerning.

The reason they are waiting for her BRCA results is because if she is positive, her particular mutation can have a bearing on what the best course of treatment would be for her. For example, BRCA 1 mutations are more likely to be estrogen-receptor negative, which means hormone therapy wouldn't be as effective in treating her cancer as chemo would be. You can read more about BRCA genes and how they impact treatment here: http://www.breastcancer.org/symptoms/testing/genet....

We know it seems like everything should be moving faster, but once all of her results come in, it will start moving along. She'll meet with a breast specialist and oncologist to determine a treatment plan, and once in place, it will typically begin fairly quickly. We hope this helps!

The Mods

ElaineTherese

Hi!

Getting a plan in place could take some time. No worries, though. IDC doesn't grow that quickly, so waiting a few weeks isn't a big deal.

The BRCA results could shed some light on your Mom's surgical options. For example, if I had tested positive for BRCA, I might have opted for a double mastectomy rather than a lumpectomy. I also might have opted to have my ovaries removed.

You might not know the stage of your Mom's cancer until after surgery (if she does surgery before chemo or other treatments). After surgery, the doctors will have an accurate measure of her lump, and should have some idea as to whether or not her cancer spread to her lymph nodes. Until then, it's kind-of guesswork. My lump was measured via MRI as 5 cm.+, and we know that one node was compromised (fine needle biopsy). So, I was probably Stage IIIA. But, I had chemo before surgery, so I will never know what my initial stage really was.

Best wishes!

Hopeful82014

Dear Help -

I'm so sorry you and your mom are dealing with this. It's difficult and painful for each of you in your own way and being so far away doesn't make it any easier, does it?

I know others with greater expertise will be along to chime in shortly. I can tell you that being ER/PR positive and HER2 negative with a Nottingham score of 1 as you posted is all good news. The Nottingham score would indicate a slower growing, less aggressive cancer.

I can understand waiting for BRCA results but it does seem to me that her doctors are taking their own sweet time in scheduling things. In addition, there should be a follow up plan that is clearly communicated to your mom. In a small town there may not be too many other choices but she may want to think about her options and whether treatment in a larger setting might be advantageous. A second opinion is worth considering, too.

She's made a good start by requesting a copy of her pathology report. She'll want to continue to obtain copies of every test result (including her mammogram, etc.) as she goes along. She might find it helpful to record her discussions with her surgeon, etc., using her phone or an inexpensive recorder. It's great to be able to go back and listen to the conversation later and make notes of anything significant or unclear.

I wish both of you the best as you move forward. No matter how good the prognosis, this is never easy and rarely straightforward. There are a surprising number of decisions to make and options to ponder. I hope it goes well.

ShetlandPony

The reason they want the BRCA results before scheduling surgery is that the results will probably affect what surgery is recommended. If your mom is BRCA-positive, they may recommend a double mastectomy. If she is BRCA-negative, they may offer a choice of either lumpectomy plus radiation, or single mastectomy. (Sometimes radiation is needed even with mastectomy.) The test results could also inform the type of chemo given, if chemo is recommended. I assume there is a family history of breast and/or ovarian cancer for them to recommend BRCA testing to someone your mom's age.

The typical order of treatment would be surgery, then chemo if needed, then radiation if needed, then endocrine therapy (also called anti-estrogen or hormonal therapy) with a daily pill for five to ten years. Sometimes chemo is given first if the cancer is particularly aggressive or if they want to shrink a large tumor so breast-conserving surgery (lumpectomy) can be done. For ER+ Her2- with 0-3 nodes positive, the Oncotype DX test can be done on the tumor after surgery to help decide if chemo is needed. I think there is a good chance that if your mom has high ER+ PR+ Her2- and grade 1, she would end up in the no chemo group.

As far as staging, they can assign a "clinical" stage using exams and imaging to estimate size of tumor and how many lymph nodes, if any, appear to be involved. This information should be available now. More definitive staging is done after surgery. Another note about surgery: Make sure your mom has a team experienced in sentinel node biopsy, so that she doesn't unnecessarily lose a lot of lymph nodes just because the surgeon is more comfortable with axillary lymph node dissection (ALND). (This is assuming she is a candidate for SNB.)

I understand the frantic feeling. When you here the word cancer, you want them to get it out now. However, it is important to find out exactly what you are dealing with in order to make the best plan, and you have not said anything to indicate that this is a fast-moving cancer. That said, sometimes you do need to stay on top of things and make sure things keep moving along. The waiting between appointments is so maddening, and it is anxiety-provoking if they won't give you any results by phone or online. Your mom does have a right to her test results and medical records.

How does your mom feel she is being treated? She should be treated with kindness and respect. I think that was not cool of them to have her come in expecting results and discussion and then send her away feeling lost.

The BCO site has a lot of information to help you and your mom with this steep learning curve. Also you can look up the NCCN patient guidelines for early stage breast cancer. Is your mom open to having you research and be involved? A second opinion from a university hospital or NCI center is appropriate for any breast cancer patient. Does her present facility have a tumor board where all the doctors -- pathologist, radiologist (imaging), surgeon, medical oncologist, radiation oncologist, maybe social worker -- confer and coordinate?

Luckynumber47

Dear Help.

This whole diagnosis is such a steep learning curve. I think Shetland Pony covered everything, so reread that as many times as you need to until it starts making sense.

One thing she mentioned is traveling to an NCI center, or a large breast center and I can't agree more. I'm sure the care at my local community hospital would have been fine but it was important to me to be treated by specialists, by the best Drs I could find. The dr I chose was 2 1/2hrs away and we ended up getting a hotel a couple times when I had super early appts. Things can move quickly once the BRCA results come back. All together I had mammogram and then a diagnostic mammogram and ultrasound at my local hospital, then biopsy, MRI and another biopsy at the breast center, 1 (2 hour) appt with the breast surgeon where she explained everything and answered every possible question, BMX surgery, (overnight in the hospital) and a follow up with my Breast Surgeon a week after surgery. A month later I met with my MO and got a prescription for AI (Femara). So even though it may be a long trip to see specialists there might not be a lot of appointments. (Well, there's 3 and 6 month, etc follow ups too but those hardly count and a good excuse to go to the big city)

Those examples are for BMX with no complications, no reconstruction,no radiation and no chemo. If you mom chooses lumpectomy instead there will be daily radiation, which could take as long as 6 weeks so she'll need to take that into consideration. I think we would have gotten a short term apartment in the city if I ended up with radiation. If she needs chemo that can often be arranged locally.

Just wanted you to know there are lots of options besides what's available in a small town.

My best wishes to you and your mom.