newly diagnosed, no MRI yet, worried I'm stage IV

elise24601

(For some reason I still can't figure out how to put my diagnosis at the bottom of my post.)

I am 31, with invasive ductal carcinoma in the lower outer quadrant of left breast - 2 large tumors (2.5 and 3.5 cm). Grade 3. High proliferation. Suspected involvement of at least 3 lymph nodes (based on ultrasound and oncologist feeling my armpits). ER pos, PR/HER2 neg. Treatment will be everything - chemo, rads, double mastectomy, and hormone therapy.

Anyway, so far I have had the ultrasound, mammograms, biopsy, and physical exam, but NO full body scans. Just started chemo, doctors wanted to do it asap.

I'm terrified that I already have mets - I have constant pain in my sternum (not near the breast tumors) as well as shortness of breath. Chest feels heavy and tight. Nurse thinks it's just stress/anxiety, told me to take Ativan. That plus ibuprofen or Tylenol helps the pain. But at this point I'm so scared it has spread to lungs and/or bone, and I'm not ready to die so young.

I'm literally so scared now that I don't even WANT a PT/CT scan or MRI because I couldn't handle the bad news!

KBeee

Sorry you are dealing with this. Some docs have different perspectives on early scans. Some think if mets are found, then they will treat like stage IV and under treat. Others want to know exactly what they are dealing with. Irregardless, there are 2 things I would mention. 1. It seems your docs are treating you very quickly and aggressively which is good. 2. The nurse has no business blaming pain on stress without ruling other things out. That is being dismissive of a very important symptom, and it is never okay. Readdress it with MO. If he/she does not address it, then go to your family doctor. Sometimes you have to go around the docs to get their attention, and to get appropriate care. Keep us posted. I hope you are tolerating chemo ok

Tmh0921

My Dx was much different than yours so I'll let the ladies with a more similar Dx speak about mets....

When I was going through Dx and treatment I started having shortness of breath, tightness in my chest, dizziness, my arms and chest would go numb, and I'd wake up feeling like I was suffocating. I mentioned this to my oncologist because I thought I was having symptoms of a heart attack or something. He told me it sounded like anxiety attacks and suggested I see a psychiatrist for therapy and medication to help. I brushed it off.... Didn't think I needed it.

This went on for years, even post treatment and years of no evidence of cancer. There were times I even had sternum pain like you describe. One day, after a night of what seemed like one long panic attack, I finally made an appointment with a psychiatrist. After talking to him, he confirmed I was having anxiety/panic attacks and prescribed an anti-depressant and anxiety meds as well as having me in for regular therapy (talking).

I don't know why I didn't listen to my oncologist and do this years before. The psychiatrist said this is one way the brain reacts to life threatening and stressful situations. They key is to recognize it and get it under control so you don't have to deal with this on top of the cancer.

My sternum pain was caused by how d sit when I was tense and stressed and resolved in a couple of weeks.😬😬😬

Anyway... Not that anxiety is fun, but hoping your symptoms are "just" anxiety

(((Hugs)))

Tracy

Artista928

I can relate. I've been fine with txs until I started rads. After a week into it chest pain, can't breathe. 911. To hospital I go. Did find partial collapse of lower lobe of both lungs with some fluid so treated it. But it seems what really caused it wasn't the rads but how I sit, tend to shallow breathe or not breathe so lungs did partial collapse. I got an incentive spirometer to take deep breathes and am more conscious of it now. I have pains that I blame on rads but they all say too soon for it so pcp gave me Flexeril which has helped a lot. They say it's muscular contractions in how I sit, breathe. I'd say ask for Flexeril to take as needed to relax your muscles. It seems to be fixing my problem. I was thinking mets too but it wasn't and my team didn't think so either and turns out they were right. Look into getting anti anxiety med to help you get through too. So many here are popping something for anxiety.

jensgotthis

Have you told your MO about your pain

ElaineTherese

If you don't like a treatment plan, you can always get a second opinion. Yes, you can get scans during chemo; they shouldn't affect anything. I had a PET scan before chemo to rule out mets. Like you, my cancer was Grade 3; it was also HER2+, which encourages cell division. In fact, if you do have mets, it may alter your treatment plan.

However, the other ladies are correct -- you can't just assume that you have mets because of an ache or pain. The last time I went to visit the oncologist, I had an aching pain in my back. I told onc that I thought it was because I had slept in a funny position. Sure enough, within a week, the pain disappeared.

I remember feeling gloomy about my PET scan -- my case just kept getting worse. First, the tumor was supposed to be 3.5 cm. Then it was 5cm. Then it was 5 cm.+ and a node was affected! When the PET showed nothing other than the lump and the node, it was a relief. PETs are very peaceful scans, not like MRIs, where the sounds can be seriously annoying.

Hope you begin to feel less anxious soon, whatever you decide. Best wishes!

Cuetang

For any ache pain, try to give it a two week rule. If it's still there after two weeks raise it again with your MO. The stress of this whole situation impacts your body in so many ways you could never imagine. Throw in "scan anxiety" and you've got a crazy roller coaster ride. Within the first two months I developed both lower back pain and sternum pain to the point where I think my doctor ordered a bone scan just to give me peace of mind. It wasn't fun waiting for results but I did get to see that I had nice healthy bones and it went away after my scan

Here's hoping that your aches/pains are to nothing but stress and anxiety!

dtad

Hi elise. Sorry you are going through this but....I would want to rule out anything physical before assuming its anxiety, which it could very well be. You can always get a second opinion. Preferably at a university based teaching hospital. Good luck and keep us posted

NineTwelve

I was originally staged at III. I also had shortness of breath, and pain in my chest from the first. Because my doctors assumed I was stage III they presented me with an aggressive treatment plan of chemo, surgery and radiation.

My mets were discovered when the surgeon who installed my BARD port took an X-ray, to see if the port was properly placed. The x-ray showed my chest cavity filled with fluid, which can happen when you have tumor on your lung. Followed up with a PET scan, which revealed mets to many lymph nodes, sternum, and lung.

Suddenly, my treatment plan changed. No more surgery, no more chemo, no radiation. Just anti-hormonal medication, which caused my tumors to stop growing. I have had a pretty easy year of it, all told, because I was stage iv from the start. If you're ER positive, you might be in the same boat.

I reccomend that you push as hard as you can to get your shortness of breath looked into (especially if you have a dry cough with it, or you cough every time you laugh, or if you can't walk more than a block or two without stopping to rest.) This is an IMPORTANT symptom.

Good luck, and I'm sorry you have to be here.

dpletzke

I have similar symptoms from Nuelasta and taking Claritin really made it stop. Also I have a Xanex for when I need it which also helps alot.

Good luck