Scanaxiety - I have come to hate tests

2019whatayear

After Memorial day I had a CT- chest/pelvis/abdomen. It was totally routine ordered by my MO since I was done with Rad in Feb and coming up on one year since surgery. I get the test, then I wait- tech said doctor should have results next day. I didn't hear from Doc so I sent message on the app. Next day the office calls to schedule a Telehealth visit to go over my results. That's new and that freaked me out right there, but now I know this is their new system. All phone calls go thru this whole procedure now where I have to go thru this long list of cancer symptoms before speaking to the doctor. Anyway the Doc was not my doc she was on vaca. The Doc was not very familiar with my history. In hindsight I should not have gotten a test while my MO was out of town. Anyway he skims my history and then goes over the results b/c I'm riddled with anxiety= near panic attack.

The results 2 new findings. 1 lung nodule 5mm and some sort of nodularity looking thingy in the upper sternum area - nothing in any bone or organs. Everything clean. Doc says don't worry follow up scan in 3 months, but all looks good enjoy life, Radiologist have to note everything b/c of cancer history and if I didn't have that , then they wouldn't even bother follow up scan. And my doc will probs also call me when she gets back. OK.

Then the other day while I'm out for a run - doc office calls to schedule a PET for me. I, freaked out, plead to talk to the doctor. Then again they have to do the whole telehealth visit set up thing.

I get to talk to the doctor. My doc says b/c I am BRCA 2 she wants to do the PET re. the upper sternum nodoularity thickening thing. I asked a bunch of questions and she said if not for BRCA2 she would just wait 3 months do CT. I ask her if she can says if it is likely or not likely cancer. I didn't expect an answer to this question b/c my MO doesn't like prognosticate. But this time she says it's not likely cancer. Could be something related to post chemo or radiation changes or who knows.

I know , I know this should be very reassuring for me and I should schedule the PET scan and get it over. I have no symptoms of anything. I had cancer removed in Jun 2019 and the only area the found was the OG tumor and micromets in 1 node. Then I had all the scans and nothing else was found, then I had radiation, nothing weird there. then I had a prophylactic ovary Fallopian removal and the scraped my uterus to biopsy that and nothing there. -woo hooo. I had ER over 95% and PR over 90 percent and I am taking generic Femera daily and doing well. Two MOs said this is not likely cancer and I can not breathe! I just had a CT scan that said my organs and lungs are clear, only a little weirdness that they want to classify and have on the record for future reference and I cannot get my head to dial down my anxiety.

I know I need to find a therapist, gosh darn it it's a real crappy time to try and find someone to talk to. I asked my MO's office if they had any referrals for post chemo treatment help and they told me to contact my Primary care physician and I almost cried in frustration. How lame is that - they don't have resources - I cannot be the only person who struggles mightily w/the desire for monitoring and fear of scans.

Thank you so much for reading this. and thanks to the mods for this community. xoxo. I am hoping writing all this out will help me manage today better. I do have a peer support person and spoke to her this week already, but I'm am feeling at this point I need some prof. help.Ugh sucks to try and find the right person to talk to when you are feeling like you are having a crisis. Hard to think

berries

Same thing is happening to me right now! I am so sorry you are going through this, too. I finished chemo Jan 30th, had my exchange, then went into radiation and just finished about a month ago. Had a follow-up CT and bone scan and they found a tiny thing on my rib and other small areas that did not show up on the bone scan. Everyone is scratching their heads on what to do, biopsy or repeat scan in 3-6 months is what the radiologist recommended.

The waiting and agonizing on the what ifs is so, so painful and your mind goes to 100 different places. First, should I start selling my stuff? Finding a new wife for my husband? what I have tried to focus on is the positive. Not "what if" it is bad news, but it WILL be good news. And in life, you just never know anything. At 35 years old, I could live until I am 90 and I will look back at this and wish I enjoyed my life more.

The good news: Your doctor (and mine) do not think it is cancer. We both do not have symptoms, we are active (I am a runner as well!). Chemo can cause bone damage. CT does not tell you what is/is not cancer, it just shows trauma.

What is your next step? Are they just repeating the scans in 3 months?

Keep us posted! Sending you love. xo

2019whatayear

I need schedule a PET so my doc can have a bEtter view of what it is- I'm trying to get myself to just do it - schedule the scan and get it over with

I have been reading your posts and I hope you get news that it's nothing ASAP

Flo80

I am so sorry you are going through this. I had a ct scan of my chest as I was having some chest tightness and there is a tiny 3 mm spot and the doctor says it's likely from some inflammation. They think it's not related to cancer as it's apprarance is different and not to worry . Still they will do a scan in three months .they think the chest issues are from anxiety

Flo80

Hi Berries I also am hanging with a 3 mm spot in my lung as my oncologist thinks it’s from inflammation. They will do a repeat scan in three months just to be safe side

GiGiL

We are all going through such anxiety right now with the world being in such chaos and then to have suspicious things showing up in our bodies when we thought we had beaten cancer or were well on our way to beating it. It is so hard to find help in the mental health field. All coping strategies seem to have gone out the window. Where does a person turn? I started taking Xanax again after having stopped once I thought I was past most chances of recurrence. It helps a little but there are so many lonely hours, aren’t there?

2019whatayear

yes this is so true it’s like oh my gosh what next 2020! At the same time I had my CT scan freak out - my father was in the ER states away from me. So it’s no wonder my anxiety from scans is barely able to be tamed ( he is OK now he had a TIA)

Thanks for your kind words everyone it’s good to have a place to let it all out with the only people who really really get it !

GiGiL

I will be here. PM me if you want to talk I'm 70 years old and I am a good buddy to ride out the storm with. TIA's are no walk in the park either. Glad your father is doing better.

AliceBastable

I have to get scans two or three times a year due to a different cancer history. From what I've been told, everybody has nodules here and there, especially in the lungs. As long as they stay relatively stable, no need to worry. We just don't know about them until we start getting scans. I had one suspicious spot in a post-surgical area that led to a PET scan and biopsy, and it was just scar tissue. Now I just approach scans as routine maintenance and don't worry about them. If something gets found, well, better early than later.

GiGiL

Alice, thanks for that. I love your approach to all of this medical surveillance.

2019whatayear

thank Alic

Flo80

Thank you ladies. I am three months post radiation and it hurts if I press on my ribs both sides . Does ct scan capture ribs? When I press both on the cancer and non cancer side the skin hurts

2019whatayear

yes it captures ribs . :-)

2019whatayear

Reporting back to say my PET scan was all good no areas of uptake! Yes!!!!!!

BTW the prep for the PET involves no carbs the day before and I tell you what - this girl really needs her carbs daily - I am not about the no carb lifestyle!

I also have appt tomorrow with a therapist to talk about my anxiety as well

LiveLoveLaugh2020

Glad to hear. So happy for you! 🙂