"Estimated" Stage 1 but Pending PET Scan Results - Terrified

Faboogie

Hello - I have been lurking through this site since my initial DX on 8/16. I've come to the point where the anxiety of waiting for test results is getting to me (irritable, super emotional, etc). Everything has been happening so fast that when I finally wrapped my head around "good news" = "estimated" stage 1 based on what they've seen so far... I get my PET scan done and realize that this could potentially show the cancer has spread in my body and the not knowing is AWFUL. I've been having aches & pains that I'm almost certain is from the stress of all of this but it still adds to the worry that the cancer has spread. I know I should focus on the positives but I just can't seem to shake theses feelings off, I'm absolutely terrified of the worst. I have two young kids (4 and 1) and an amazing husband - I can't imagine leaving them behind.

I'm ER+, PR-, HER2- with a grade 3 tumor (1.9 cm) on the left side. At the time of my ultrasound there was no node involvement but my MRI found one of my lymph nodes to be "slightly" enlarged & another tiny mass on my right side. I've gotten both biopsied and was told they did not look that sinister but they would rather be 100% sure (still pending results). I've made the mistake of googling symptoms and convinced myself that I have mets. Please tell me I'm not the only one who has thought up crazy things while in the waiting period?

Anonymous

A Stage IV de novo diagnosis only occurs in about 5% of all diagnoses, and usually there are signs beforehand - an obviously swollen lymph node, a painful lower back, etc. With the size and driver of your cancer, it is very unlikely to be a late stage diagnosis and your team is being quite proactive in ensuring their call is correct by doing the PET scan on top of a biopsy, which wouldn't be normal standard of care given your stats as stated. Mets pain is not like other pain, it is constant, unrelenting pain that is only somewhat knocked back by over the counter painkillers, but never really resolved, concentrated in one area, usually the pelvis, lower lumbar, hips, maybe a rib, possibly the liver if the tumor was large enough. What it isn't is random aches and pains showing up.

Googling and worrying is natural at this point but the likelihood is really rather low. And let's say worst case scenarios it does turn out to be mets - there are a lot of drugs on the market keeping us alive and new thinking in regards to stage IV treatments with limited metastatic disease.

Its tough to not be irritable when dealing with a major life curveball and the unknown, but do try and stay off Google, go plan something fun to do with the family, and worry when its time to worry!

sunshinegal

Oh, Faboogle, I know so well the fear and anxiety of this moment for you. I lived through it in March, and the best thing that helped me manage my own panic at that time was reading somewhere on this site not to rehearse a tragedy.

For some reason that was the only thing that really cut through all the swirling thoughts in my head-- I connected with the idea that I was punishing myself by either needlessly sinking into the black place (in the case of a good PET/CT result) or going through the black place twice (in the case of a bad PET/CT result).

I don't know if that will help you, but do know that I'm thinking of you and hoping for a good outcome for you!

Faboogie

SondraF, I really appreciate your statistical positivity on all of this. When I read on the internet that PET scans aren't usually the norm a few days ago, that threw me into a world of overthinking (yet again). Looking back at first appt w/ my onc, I was still reeling from the initial dx (which was only 2 days prior) so when he had asked if I had any symptoms I had mentioned I had pain in my shoulders (more like a muscular pain) and pelvic area (which a week later I had my menstrual cycle so almost certain this is what was causing it) but nonetheless, I'm happy that he took them seriously and is being extra cautious.

I'm having a hard time talking about it with friends/family as no one I know closely has had it and many are shocked that I was dx with this being 31 and having no family history. It's nice to hear from others who have gone through it and see that it does get better - especially during the waiting period, thank you!

Faboogie

Sunshinegal, I like that way of thinking bc all I have been doing the past couple of weeks is rehearsing tragedies in my head. I have my good and my bad days with the bad days usually occurring before/after scans/biopsies/tests. It's good to know that it does get better... thank you for your kind words and thoughts!

MSWife

sorry you're going through this!

You can check out this tool to try and get some idea of the risk of mets with initial diagnosis (biggest risk factor is larger tumor size).

This is of course is not a guarantee or substitute for medical advice.

Faboogie

MSWife, Thank you for sharing! Definitely useful