What to ask the doctors? (Mets to lungs)

LVFighter_Survivor

I was diagnosed with IDC in September 2016. I have an oncotype DX score of 12 (low risk of reoccurrence); I had a bilateral mastectomy on November 2, 2016. My tumor size was 8.5 cm and 2/15 lymph nodes were positive.

The PETscan I had a few weeks ago had a discrepancy in the report that my medical oncologist missed but the radiation oncologist caught. The report was revised from "no suspicious lymph nodes" to a recommendation to biopsy the lymph nodes surrounding the lungs. The largest suspicious node is 3.1 cm x 1.0 cm but they couldn't biopsy it because of the proximity to the aorta.

On December 7, 2016 the pulmonologist performed a procedure called EBUS for the biopsy of 3-nodes; the preliminary results indicate atypical cells from all three nodes that were biopsied. Several others exist all located around the central part of my chest. I am awaiting final results but my medical oncologist believes them to be breast cancer cells. (I should mention I survived papillary thyroid cancer 15 years ago).

I'm headed out of town to MD Anderson Cancer Centers for confirmation on the course of treatment but any advice others in this forum may have or if there are questions I should be asking my doctors, please let me know.

At the moment my medical oncologist wants me to take 6-cycles of TC chemo followed by radiation then he wants to put me into menopause either through a hysterectomy or chemically induced menopause and give me aromatase inhibitor. Before the EBUS (lung lymph node biopsy) my medical oncologist wanted me to do 4-cycles of TC chemo followed by tamoxifen.

I'm writing to ask for help / advice regarding what to ask my doctors.

Thank you in advance.)

pajim

LVFighter_Survivor, I'm sorry you are dealing with this. My overriding thought is that before agreeing to any chemo you need to know exactly what you are dealing with. Do you have metastatic breast cancer or not?

IF (and from what you describe that's a BIG IF) you have mets, then usually oncologists start with an AI, not chemo. The horse will be 'out of the barn' so to speak, and there's no reason to deal with radiation or the side-effects. Radiation wouldn't make sense to me at all. (But I'm not a doctor)

If this is atypical and not confirmed as cancer you'll want to go for the cure. Chemo, radiation, and either tamoxifen or ovarian suppression and an AI.

So the first thing you need is the results of the biopsy. Since it's not clear cut, ask for the slides (or tissue) to take with you to MD Anderson. You'll want a second pathologist to read them. If everyone agrees these are breast cancer mets you can discuss course of treatment.

As for questions to ask -- ask each doctor their recommendation and their reasoning behind the recommendation. Ask what they believe the second line therapy should be. [Your onc has given you first and second lines. Did he give you a reason?]

Hugs and good luck. . .

barbe1958

I'm not seeing lung mets in your information either. Lymph nodes are all through your body so it's not unusual to find one near your heart. I don't see where they saw nodes in your lungs? Good luck with your continued journey. I did get rads for a local recurrence but was also put on an AI for lymph node mets.

LVFighter_Survivor

Hello Pajim & Barbe1958,

Thank you both for your responses. My medical oncologist is treating this as if the term "atypical cells" means the breast cancer has metastasized to the lungs. Since reading both your posts, I've done some research on my own and I believe you are correct Pajim... it's still a big "if"... atypical cells doesn't necessarily mean they are cancer cells. I guess I'm in the "wait & see" phase of the diagnosis until the results actually come back. (Should be another week or so).

In the meantime I'm headed to MD Anderson in Phoenix for an assessment and to get their opinion based on what we know so far and what they might recommend for treatment (and why they recommend it) given the possible outcomes of the lung lymph node biopsies.

My apologies if I have jumped the gun on posting to the stage IV page. I was truly left with that impression based on what my medical oncologist was telling me.

Thank you for pushing me to research further on the "atypical" cells. I will let you know how it turns out

barbe1958

I guess my confusion is that the nodes aren't IN the lungs but around them. If so, they would still be part of the chest and breast area. You may have positive nodes in your chest but not metastatic lung cancer. Does that make sense?

Don't worry about this being the stage IV forum as we learn from you too. I have a suspicious node IN my lung and now I've learned about a new procedure so thanks.

pajim

I agree with Barbe. I missed the fact that they biopsied lymph nodes not lung nodules.

On top of everything else, even if those are cancer cells you could simply have a regional issue. Stage III cancer. Not mets. Now you definitely need that second opinion.

Hang tight. Waiting is the hardest part. (well, a mets diagnosis is nasty too but then at least you can take action)

singlemom1

Hi Lvfighter, I had the same Procedure As You (EBUS). My hilar node was enlarged. I am a little confused if you are referring to the nodes in your lungs. I assume you are if you had a EBUS done but maybe I am wrong based on other responses you received. I have responded very well to letrozole and ibrance and the lymph node is no longer enlarged. I hope Anderson can provide clarity for you and a treatment plan that you feel is right for you.

LVFighter_Survivor

I'm really sorry for any confusion singlemom1, Barbe1958, and Pajim;

Honestly I'm just as confused as you are... I'll try and attach the PETscan results for the chest area, maybe you ladies or someone else can help me decipher what it means. (It was based on this report that they performed the EBUS biopsy & the preliminary finding of the three areas biopsied during the EBUS all indicated "atypical cells". The pulmonologist and medical oncologist didn't "say" stage IV, but their mannerisms certainly did.). I'm interested in what you guys think.

I will certainly find out soon enough Results should come back before Christmas.

(Thank you for taking an interest in my post - I'm certainly feeling a bit lost without clear direction).

barbe1958

There should be a conclusion or recommendation at the end of the report. Only the 3cm ones would be of concern.

singlemom1

I am not sure why Barb is saying only the 3cm would be of concern. My hilar node was enlarged 2.7 cm. Biopsy determined ER positive cancer. Diagnosed stage 4.

barbe1958

Singlemom, her other ones were under a cm. They normally won't biopsy a node less than 1 cm. That's all.

LVFighter_Survivor

singlemom1 & barbe1958,

Ironically - they biopsied three of the smaller ones & not the 3cm one. They couldn't get to the 3cm because of its proximity to the aorta. 😖

I'll let you guys know what the final results indicate. Thank you for your help. :-)

singlemom1

That was my experience also, they biopsy what they can get to. Please let us know what happens.