Scanxiety is real!

[texmexflute]

I just had my first scan since liver resection and sbrt to get rid of liver mets. MRI. It shouldn't be a big deal. I expect all to be clear! But last time I had a scan - after being staged 3b and completing mop-up chemo - mets were found in my liver! Stage 4! It was like a kick in the gut!

So of course now I'm feeling worried, concerned, anxious ..... My course of treatment has not been difficult (surgeries, folfiri, avastin), the side effects minimal, and the surgeries fairly simple and straight forward. It has felt too easy. Is the other shoe going to drop?

After the last scan I had 6 rounds of folfiri + avastin which only kept the mets stable. Then liver resection. Then sbrt. Tuesday I begin 6 rounds of mop-up chemo with folfox. As an instrumentalist (musician) I'm worried about the possibility of neuropathy. How will I be impacted?

I think this may be the hardest thing about cancer - the uncertainty. There are very seldom answers. Only more questions. Is it going to come back? Where will it come back? How is the treatment going to feel? What's next? How much time do I have to enjoy all that is my life? All I know is that I just take each day as it comes and deal as best as I can. And hope that I feel well enough and live long enough to know my grandsons, including #3 who is due to be born this Thursday!

Thanks for letting me dump this here. It's nice to have a place to blow off steam (and uncertainty) without having to burden family with it.

[stu]

Hi ,
You are so right about the anxiety associated with scans . My mum has had over 25 scans and it has eased a lot to be honest but it lurks around like an unwelcome visitor. What I would say that a comfort has grown with the process as we now know from experience that they do catch it quickly and nip it in the bud .

My mum’s grandchildren were5,7,7and 9 when she was diagnosed. Fantastic care has allowed her to input into their lives and they are now 19, 17, 16 and nearly 14 . One at uni and the other heading . She has remained a strong advocate for them and to be honest they take great care of her .

When she was in active treatment it was tough but the intervening years have been great .

I wish you ever success and as for the other boot about to drop I have learnt that thankfully feelings are not a good indicator for disease progression . You have plain and simply had a good recovery . It’s the mind games that are soul destroying .
Take care,
Stu

[Pyro]

Yes it is! It’s taken me a couple of years and dozens of scans but I feel better about them now. It was a process for me, there are only two results, NED or complete loss of control. The idea behind it is either I’m happy, or it doesn’t matter, anything in between I’ve handled (and you have handled) so far. As far as “it doesn’t matter anymore”, at least I won’t be in pain and the f’ing cancer really can’t grow then and even in death, I win. Chemo for life is a bitch, and it’s unsustainable for the long term, I’m so over it, I get a Keytruda “break”, but if/when that stops working, it means more chemo. This was not my normal thought process at the beginning, I was going to win and continue with life. I’ve lost my body, stamina, normal poop function, career, job and skill set to get another one in the same industry, things will never be normal again. Everyone is different, this works for me!

I was a pilot, the FAA is pretty cut and dry with stage 4 and active disease, I’ll never be in charge of an airplane again.

[stu]

Hi Pyro ,

I think that’s maybe where my mum has scored in that she has only had twelve cycles of chemo . She never has post op chemo and has never had maintenance chemo .
She would never do it either to be truthful . I am thinking of you as that is a lot to take on board .
Stu

[Lee]

What got me through, prior to a scan I would tell myself, no one know anything yet. Why stress over something that no one anything about. BUTT once I took that scan, I would let myself STRESS big time until I got the results.

Good luck, that fear is very real.

Lee

[AussieAssCancer]

Scanxiety is the WORST!!!

I normally have my scans the Thursday or Friday before an appointment so I only have to worry about it over the weekend but this time I’m having them Thursday and don’t see doc for another 10 days due to work commitments!

Sending you some positive vibes!

AAC