I just had THE call

I am so so sorry this is happening. We all know this is the absolutely worst time of it all. As far as what to ask I would want to know the following.

1. What type of breast cancer do you have? There are four main types - hormone positive, hormone positive along with HER2 positive (called triple positive), hormone negative but HER2 positive, and triple negative (no hormone receptors). Hormone positive tumors without HER2 amplification do not have a proven immunotherapy as of yet.
2. What grade is the tumor
3. Does your ultrasound or mammogram at this time indicate whether lymph nodes are involved?
4. How large is the estimated size of the tumor
5. What is the order of treatment based on what they know so far? Surgery by the way is almost always a part of treatment unless your cancer has spread beyond the breast area.
6. Are there any other scans you will be needing before treatment begins.
7. Are you eligible for genetic testing and does your oncologist recommend you get it. I would think that's an easy yes considering your family history.

Those are the questions off the top of my head. I wish you the best of luck tomorrow and if you have any questions don't hesitate to ask us.

Anything you need to ask we'll help you the best we can. As far as surgery goes I ended up doing a double mastectomy. Honest opinion? It wasn't particularly bad. Pain was easily controlled, recovery wasn't awful either. And they were super nice to me in the hospital. I stayed one night.

Great comments by all. I had my left breast removed first and they also took 3 sentinel nodes. No cancer in those. Pain? Between the numbness of the breast and likely nerves removed with the nodes, I had little pain at all. We all are different, and possibly you will not need such a serious procedure. I do know they usually offer high milligram Tylenol or other pain pills with surgeries. You can ask before these questions.

I also had my ovaries and fallopian tubes removed the same day. I had more pain across my middle for sure. I was in the hospital overnight to make sure i was stable. It depends on the hospital. I have met women who went home the same day. Please let us know how it goes.

I had a lumpectomy, and it didn't hurt at all. I went out to lunch with friends two days later. It's pretty standard for at least a sentinel node to be removed for pathology, along with the tumor. My SN had a surprise micromet (not seen on imaging), but all that meant was a longer course of radiation. If you have a lumpectomy, radiation is the standard follow-up. Some people have problems with it, but a lot of us don't. It's very quick each day, but the daily (weekdays) routine gets pretty tedious. I'm retired, but if I wasn't, I'd have probably worked through radiation since I had it very early in the morning and felt fine the whole time.

"Does it really have a lifespan of 5 years once diagnosed?"

No. HER2+ positive breast cancer has a fantastic immunotherapy in fact that has totally changed the trajectory of the disease. And as far as chemo being poisonous, yes it is. But it is also poison for the cancer cells and as of right now it's one of the main things we use to defeat cancer.

Last July I completed active treatment for Stage 2, Her2 positive breast cancer. Mine was also ER/PR positive. According to Dana Farber (one of the top cancer hospitals), the 10 year survival rate for Her2 positive breast cancer is 99%! The odds are very, very good that you will be fine.

That said, you will do chemotherapy with immunotherapy first, before surgery, followed by either immunotherapy or an antibody drug conjugate after. You may or may not do radiation. The treatment is a long process but you will get through it. I know you are scared now, but once treatment starts you will settle into a routine. They have medications to deal with side effects.

MRI’s are painless and non-invasive but they are loud. Most facilities offer ear plugs if needed. Yes, the injection is the contrast dye. No concerns about DCIS since if there are even a few DCIS cells floating around, whatever treatment you receive for IDC will take care of any stray DCIS (nothing can find or visualize every single cell). IDC will be the treatment focus as it is invasive. Take care

To answer one of your concerns… I met with a genetic counselor before they actually did the test. She explained to me what genetic testing could and could not reveal and what the implications of positive genetic mutations might be. She also reviewed my family medical history, which I submitted in advance. All of this could have been a virtual visit. I then went to the lab for blood draws. My follow up, when results were available, was also in person but could have been virtual. I am sure medical each medical facility handles this somewhat differently but my experience explains why a virtual visit would have worked. Take care

The vast majority, 80-85%, of patients undergoing genetic testing show no known genetic mutations. The testing is also far more extensive that just BRCA 1 & 2. I believe folks are tested for over 30 mutations .

I had over 150 genes tested. My younger sister and older brother tested, and they carry the BRCA2 gene. That sister's daughter does too.

pneuma- Ask your sister. It is good to know if she was clear. I will say in my family, my older sister chose not to be tested and she had ovarian cancer two years after my diagnosis. She was never tested. Still has not been.

Honestly it is another vial of blood and forms to sign. Ask your sister if she was glad, she got the test. In the end, do what makes you feel right. It is your body.

Pneuma, ask your sister what her result was. Also ask how many genes she tested for. If she was negative with a good panel, that's a helpful thing to know. For you personally, also know that you can test for as little or as much genes as you want. Personally I did not want to do a big panel but only the actionable genes associated with the cancers in my family. For my mental health I knew I didn't want to know about something I couldn't do anything about.

MRI’s are imaging tools. They can visualize a tumor but can’t tell you anything about hormonal status, and more importantly, can’t tell you the grade, so an MRI is not the only component and not the final word. Additionally, if you are having surgery, stage and grade can change from what was estimated from the biopsy sample. It’s usually close to the biopsy estimate but the pathology report after surgery becomes the final word on staging.
I can’t really speak to MRI first over biopsy, but why have to go through an MRI when the biopsy is actually what confirms you have bc? MRI’s are often done after bc is biopsy confirmed but before? Unfamiliar to me but I am not a doctor so perhaps you can ask why you’re getting an expensive test before bc is even confirmed. Take care

pneuma,

I am sorry if I added confusion to your story! I thought you were having an MRI before the biopsy. Mea culpa.

Again, the MRI does not provide the final word on staging. It may help in an initial staging estimate but the pathology report after surgery is the bottom line.
Did you make a good decision to have a biopsy? In my opinion, yes* . If not how would you know you had breast cancer? Imaging alone cannot diagnose breast cancer. If you didn’t have a biopsy, you wouldn’t know if you had breast cancer so how exactly would you have treated it non-invasively? What are your concerns regarding a biopsy and the biopsy marker? Again, without the biopsy, how would they have been able to arrive at a diagnosis (and tested for hormonal profile, critical to treatment decisions)?
*In my 12+ years on bco, I have never heard of anyone being diagnosed without a biopsy. Imaging cannot see things on a cellular level.

Ah, I see. You are referring to something called seeding. While the theory exists, in reality there is little to no evidence to show that it actually happens. So in essence you are concerned about something that doesn’t really happen. Time to put that notion to rest.

My situation is completely different from yours as I was stage IV de novo. Yes, I had rads, but to my bone met, not my chest area. Let me add that I was restaged just 6 weeks after surgery (which I likely would not have had if it was known then that I was metastatic) as the bone met was a complete surprise. I opted for a bmx because there were already calcifications on the right breast. I have never had any type of chemo. This is unusual but was appropriate for my particular situation.

When looking at other people’s treatments, please understand that each stage of bc, hormonal profile, type (ductal, lobular, etc.) can and do have very different treatments. My course of treatment will not be what you will likely experience as you are not stage IV. Breast cancer sounds like a single disease but there are many types, sub-types, and individual variations. It is a hugely complex disease but when looking at treatment decisions, consider your specific circumstances, not that of a stage IV patient like me. Take care

pneuma,

I am unclear about why you are concerned about metastatic bc. Stage IV is complex and it is not curable, so subjecting someone to unneeded surgery is not usually recommended, but treatments have greatly extended the lives of many. It is also unlikely that you would be metastatic at initial diagnosis (only about 6%).
I am not HER2+ but please remember that this hormonal profile had poor outcomes before the discovery of Herceptin. Herceptin has been a game changer but it is given with a chemo regimen. I am no HER2 expert but from what I know, it would be a gamble not to go this route. TBH, AI’s alone will likely not be the best choice because they will do nothing with respect to your HER2 status. Have a look at some of the HER2+ threads and speak to some members to understand what a lifesaver Herceptin has been. I personally couldn’t imagine forgoing it if I were HER2+.

We are all free to choose whatever treatment we wish, or none at all. No one likes the idea of “poisoning” their body, no one but… I have never seen any research/data that has shown that natural treatments work. Yes, there are stories, anecdotes, blogs, regimens, protocols, you name it , all claiming to cure cancer but none of this equals data. Did some people do all natural XYZ and never have a recurrence? Yes, but precious few and with results that could not consistently be replicated.

Pneuma, please take some time to learn about bc from reliable sources, focusing on the particulars of your breast cancer. Learn about HER2+ treatments. Not treating HER2+ is more risk than the vast majority of patients are willing to take and AI’s will do nothing for that. There is a lot to learn and again, it is very complicated with many possible variations.