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better safe than sorry

Recap, if you read my last post you know I had a CT scan that showed something looked off with my axillary lymph nodes on my left side (a bunch of lymph nodes in my mesenteric and iliac... and a few other abnormal things). 

I even have a moral to this part of my health journey. Be your own health advocate - even when it's hard (I'm even bolding some of my moments where I had to stand up for myself with and against some of my own doctors)!

PART TWO

Get ready, a ton of things happened over the course of a few weeks...

  • I call my Oncologist the next day after learning my CT scan results.
  • My Oncologist saw the CT results and called me back the next night. She and I don't fully agree on everything in our conversation, and I protest a bit saying better safe than sorry. Despite this, she wants me to wait a month before getting the PET scan.

I don't really like the idea of waiting that long since I know I haven't felt great since April. I did tell her that if I could find an earlier time, I was going to take it.

  • She puts in orders my PET scan for a month away.
  • So, I call and change my PET scan date to an earlier time, and I change the location because I wanted to go somewhere else.
  • I get my PET scan.
  • I wait for the results, but I'm not super concern yet since the Oncologist was very sure I was being overly cautious.
  • PET scan results come in. I have two axillary nodes on my left side light up, but the comments say they think it is more inflammation like Cat Scratch, Minimal chance of Lymphoma, and Least Likely Breast Cancer. Maybe a Needle Biopsy to Differentiate.
  • After a few days since I saw the results, I call my Oncologist office to make sure they received the results since I had it done at a different location.

Get ready because my gloves are about to come off..

  • My Oncologist calls me back that night. She seems kind of irritated I had the scan (and irritated I had it at a different location). She tells me she isn't really concerned. I still feel it's better to be safe than sorry. She says I have to have now have an ultrasound before she will let me do a biopsy and only if the Radiologist thinks I should. I argue I want a biopsy - no matter what - since I have a CT and PET scan that look unsure. Either way, I want to differentiate and find out what is wrong with me.

My thoughts: This would only be an ultrasound guided needle biopsy in the lymph nodes near my arm pit (see picture). It is not a hard or challenging biopsy. I am shocked this is such a big issue.

I do not feel heard... again. I had already complained about not wanting to wait a month for the PET scan, had the PET scan with some lit up issues, and I know I feel off. Still my Oncologist is making me go through another extra test - a test that is not going to show anything more clearly. It is not an MRI! Of course, she wants the Ultrasound to be done at her hospital were she wanted me to for the PET scan. And I am starting to get more upset about her not taken my concerns seriously.

  • My Oncologist orders an Ultrasound (hopefully, like she said, with Biopsy if needed).
  • I feel very unheard and the more I thought about it I felt like this is my health care. So, call Oncologist nurse line back and reiterate that I want the biopsy. I basically leave a message on the nurse line saying something like:
I do not want an ultrasound as I have already had other testing. I have had biopsies for less and am not sure why they are making me jump through extra steps. I am also going to be worried if I do not have a biopsy - what if I missed cancer and then in a few years go by and I find out I have cancer. I will question this exact moment. Maybe, I would have had better odds if I had done the biopsy now and found it. Maybe even, by missing it, I could die. How bad I would feel? How mad at myself I would be for not calling back and saying I want the biopsy? My scans weren't 100% clear. The CT looked off and the PET scan lit up (matching the CT scan). I can't just sit back and not speak up. I would be furious at myself. I would be foolish. If the worst thing that happens is I do a biopsy and it comes back not cancer... great. It is a very small risk procedure. Maybe I do have an autoimmune disease or something else, but let's find out with a biopsy. I do not feel the ultrasound is necessary - and I would like to just have the biopsy! If you are going to require me to have the ultrasound - fine. But in the end, I will be insanely upset if the biopsy doesn't happen when I go to the appointment. 

Ok, I ranted a little. I wasn't ugly... more frustrated... but who's going to speak up for me, if not me?

  • The Oncologist nurse calls me back and tells me the doctor heard my concerns, but is going to make me do the ultrasound first and if the Radiologist at the location she wants me to use says I need one they will do it right after. I tell them I am not being heard, my concerns are being ignored, and the doctor is not really hearing me. They basically tell me they understand, but sorry.

Since no one is listening to me, I am even more concerned that the biopsy isn't going to happen. I have a feeling that no one is taking me seriously. So, I know it is my job to keep pestering and checking on my medical appointments.

  • The Breast Center calls me to get my money and pre-op. I make them confirm that the orders are for the Ultrasound (with Biopsy after if needed). They do.
  • I call the Breast Center again, three days before my appointment, to make sure the orders for the Ultrasound have the Biopsy option afterwards. I am telling them up front, I am basically going to argue my way into the Biopsy & need to make sure they can do it that day. They tell me, if they see a reason they will do it right after the Ultrasound.
  • I go to my appointment.

I imagine you all are like, it all worked out. You had the ultrasound and biopsy, right? It had to happen because you did your due diligence (you were annoying thorough). You literally talked and fussed about it with everyone. You check and double checked with Oncologist and Breast Center, letting everyone know that you expected it had to happen. 

Short answer? NO.

Long answer? Still no, but here it is:
  • I go to my appointment.
  • I tell the nurse as she is taking me back, in a very nice way, that I am expecting the biopsy today and why. I had called and checked. 
  • I get undressed and put on my gown. And wait. (See me in my gown to the left - I don't look like I'm being to evil - do I?)
  • I get on the table. While I know they have to do the ultrasound, I really need to have the biopsy for peace of mind as a cancer survivor with a recent CT and PET scan that looked odd. Whatever they find, I feel like for me the biopsy is something that is necessary - especially since I have had symptoms that could be related. And my Oncologist said I could have it after the ultrasound, today.
  • The nurse tells me to stop talking since it is messing with the ultrasound. It takes maybe 4 minutes. She leaves the room probably thinking I am slightly neurotic (and a hypochondriac).
  • 45 minutes pass... she peeks her head in once to tell me she's waiting for the Radiologist to look at my images. I feel asleep waiting.
  • She and the Radiologist enter the room and I am like, yeah my biopsy... so stupid of me.
  • The Radiologist tells me: my lymph nodes are reactive. However, they do not have my PET scan in the system since the Oncologist has NOT uploaded it to my patient portal. He tells me how he looks for breast cancer all day long, and he doesn't think it looks like that or lymphoma. It is most likely autoimmune or something like that. But, they are reactive and he of course isn't completely sure. He says I could either just wait 6 months and check to see what it does or have a biopsy.
  • As you already know, I respond with I want the biopsy.
  • Guess what? They don't do biopsies on Friday after lunch. My appointment was on Friday at 1pm. Plus, they can't do a biopsy because my Oncologist only sent orders for a Ultrasound (not a Biopsy). If she had sent it as a Biopsy then they could have either done just the Biopsy or Ultrasound and then Biopsy, but of course, not that day - it was Friday afternoon. 

WTF?!?! How is this possible after all the calls to check on this exact issue? At this point, I kind of loose my cool. 

  • I feel so lied to. I feel so beaten down. I go into a slight rant telling them everything. I was so upset and frustrated, I started to cry a little. I was like, I get you aren't super worried - which is great - but I was very clear with my Oncologist and you here at the Breast Center before I even arrived. 
  • Since I was slightly crying, they were like we know you are scared of cancer. NO, I AM NOT SCARED OF CANCER... I AM PISSED OFF I HAVE NOT HAD THE BIOPSY THAT I ARGUED ABOUT WITH MY ONCOLOGIST MULTIPLE TIMES & CALLED YOUR OFFICE 2 TIMES TO MAKE SURE MY ORDERS WERE CORRECT & COULD HAVE IT TODAY. NOW EXACTLY WHAT I THOUGHT WOULD HAPPEN, HAPPENED. 

(Side note: if you are a woman and you cry at all when you speak to certain doctors, they will immediately think or say you need to be medicated because you're too emotional or unstable. This is bulls!*t. This idea has been a problem I have seen throughout my medical journey. Don't let anyone make you feel that way. You are allowed to be upset and cry and have emotions without needing to be medicated - and if you want to be medicated, that is fine too - but to equate crying to being drugged or irrational is just plan sexist and ridiculous.)

  • On the positive, everyone says they don't think this reads like cancer - that's great - but I just need the most accurate confirmation that it isn't cancer - the biopsy.
  • Me being upset isn't going to change anything. I am not getting the biopsy today. The Radiologist is like, I can get you in for a biopsy next week, if your doctor sends in the orders. 
  • It's Friday before Labor Day. I am realizing how screwed up this is!
  • Because I am nice and should, I apologize to the Radiologist letting him know that I realize this isn't his fault. It isn't. He can't do anything that my Oncologist didn't send the orders. Or that I feel like she and everyone lied to me. He just happened to be the one to deal with my messed up, non-biopsy-ing, ultrasound. He understands and leaves. The nurse is still kind of a jerk at the end saying they are generally too busy right now to fit in biopsies, that they couldn't have gotten me in next week anyway. I was like, didn't you hear him say next week. She made me feel even worse - which is pretty crappy considering I wasn't mean to her or anyone, but I did express that I was: Confused. Upset. And Tired of Feeling Ignored!

It's now later on a Friday afternoon... I leave the Breast Center... and I can't stop yet. I have to keep on advocating for myself...

  • I call my Oncologist's nurse line and express my frustration. Yes, I think I left a crying unhappy voice mail. I bet you can imagine how it went.
  • I call my Primary doctor saying, I am upset with my Oncologist and need to get a biopsy done. If she doesn't order it, I need him too. I am so upset and will need a new referral for a new Oncologist.
  • I call my husband and mother. ARGH!
  • The Oncologist nurse calls me back, and after a lot of venting, she does at least apologize and say she's not sure what happened. They are not sure what happened with the orders - she says they think they sent it correctly. Of course, no one is going to admit fault. And they had no idea about the Breast Center not doing biopsies on Friday afternoon. Oh, and my Oncologist is out of town. But luckily for me, since she had said the biopsy could be done if the Radiologist approved it, I could get one. So, she would call and schedule one for next week. WTF... why didn't they do that from the beginning!
  • The Oncologist nurse calls me back with a biopsy appointment for Tuesday afternoon.

For real, this craziness is real. I might be slightly insane by this point. But, I was proactive.

 
Yes, I feel like everyone is looking at me like I am a psychopath. 

And the funny thing is - I am one of the most, "it is what it is" person. Yet, my cancer journey has taught me - I am my own health advocate. I have to fight for me. Sometimes relentlessly. I know me best.

And, if my life is making you tired, imagine how I feel?!? I am going to go relax this holiday weekend and go to my biopsy on Tuesday knowing I made it happen. I didn't give up on what I think is right!




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