Waiting on pathology results

mkbw

I am new to the forum and have never posted before although I've spent many hours going through the forums when I was first diagnosed. I have been in remission from TNBC for over two years. The other night I was having trouble breathing and my husband took me to the emergency room. I expected to hear I had a respiratory infection since I've been coughing the past few weeks. Instead they told me my right lung was filled with fluid and it was most likely a recurrence of my cancer. I am now waiting on pathology results which I've been told can take up to a week. All I can find is information that says the prognosis for TNBC recurring with a malignant pleural effusion is very poor. Has anyone else had experience with this?

ElaineTherese

bump

Moderators

Hi there, mkbw. We're so sorry you find yourself here with this worry, we can certainly understand that this is a scary time. It's never easy to face this, but it's particularly hard when you're faced with the possibility to dealing with this a second time around. Please keep us posted on what you learn when your results come back, we're thinking of you!

The Mods

mkbw

Today it was confirmed that my cancer is back. I am now experiencing metastatic disease with what appears to be mets in both lungs. I will find out Monday what the recommended course of treatment is, and start all the imaging and tests to confirm how far it has spread. I'm really overwhelmed right now. There seem to be so many decisions that I need to make regarding my education and work, and I can't deal with any of them until I have more information. My family and friends are rallying around me, but this time I feel more alone than I ever have before. I told my kids today. Most of them. I'm going to visit my oldest at school tonight (she just started college a few weeks ago). I'm really worried about the impact this is going to have on them and my husband. Friday the 13th has always been considered a special day in our family because one of my girls was born on a Friday the 13th. Today has definitely been the wrong kind of special.

ElaineTherese

Hi!

I'm sorry that you're feeling so overwhelmed. Being diagnosed with Stage IV breast cancer is definitely a shock. I would encourage you to visit the Stage IV threads on this website. I've linked to a thread below just about lung mets. The Stage IV threads are full of lots of good tips about treatments and managing their side effects. But, most importantly, they are full of hope. Stage IV breast cancer patients are living longer, more active lives these days, and several here on BCO.org have lived for many years with mets.

https://community.breastcancer.org/forum/8/topics/780588?page=1

I would also encourage you to send away for Bestbird's book about mets and their treatment. See:

https://community.breastcancer.org/forum/8/topics/831507?page=4#idx_91

Hugs, and good luck!

ElaineTherese

How did things go with your oldest daughter? I hope it went OK. By the way, I forgot that there is a thread just for Stage IV, triple negative breast cancer patients. See below:

https://community.breastcancer.org/forum/8/topics/799766?page=91#post_5438768

Maybe, that will be helpful. Thinking of you! ((Hugs))

santabarbarian

I am so sorry you find yourself facing this. I am TNBC too, and It's a scary beast.

Were they able to make sure it is still TNBC?

Maybe it's a good time to seek an opinion from a TNBC expert. Melinda Telli at Stanford is one. Tiffany Traina at MSK is another... there are surely more. Certain places have unusual programs (like UMD with hyperthermia, for example) that can also enhance the performance of chemo or rads. The experts in TNBC will be aware of clinical trials and what other actionable things (PLD1) you may want to test the cancer for.

I also want to mention the integrative MO who I got a consult from, whose advice to me was very helpful: Dr Keith Block, The Block Center. He is not specifically a TNBC doc but rather a longtime MO with a ton of experience using complimentary therapies alongside chemo meds. He sees a lot of stage 4 people as he can give chemo in innovative ways.

I am hoping you get answers soon and a treatment plan. I am so glad you have the support of loved ones! (((hugs)))

mkbw

Thank you all for the kind words and suggestions. It has been a roller coaster of emotions the past 48 hours. I did tell my daughter and it went about as well as can be expected. She wants to be here to support me and I want her to stay on track and stay focused on school. She has already been establishing her own support system at school which I think will be a great help to her. I'm also a student so finding time to get my school work accomplished, juggle doctor appointments, be a mom. It was already a struggle to manage time and I know now it will just be worse. I'm rambling. It feels good to have a place to ramble a little and not worry about the emotional avalanche I am dumping on the other person. How do you tell others about a stage IV diagnosis? I can't even begin to comprehend how to share this news with others.

ElaineTherese

Hi!

I'm a college professor, and if there were something interfering with a student's capacity to focus on schoolwork, I would want to know. Not the details necessarily, but if a student was going to have to miss classes because of medical treatment, that would be good to know. Could you get your oncologist to write a letter for you, attesting to the fact that you are going to be missing some classes because of medical treatment? You could also meet with your instructors, and ask how you can keep up with your coursework, given some absences here and there.

Re: friends -- I can't say because I'm not stage IV! This might be something to ask on the Stage IV boards. Since Stage IV involves a chronic disease, and you probably will be doing some kind of treatment from now on, you might want to share the details with only your best friends. On the one hand, you want to avoid the "pity" stares, but I'm sure that your closest friends will want to know. I would focus on the chronic part, less so on the fact that cancer will probably contribute to your demise at some later time in the future (hopefully, years and years into the future).