6 months clear scans

Hi Ker!

I'm so glad to see you posting again. How are you feeling overall?

I would love to see all this as a good sign, but the confusion troubles me. It's probably exactly as your family think, but the switch from CT as they said in the meeting to MRI, and the blood work, plus the VERY troubling  confustication about mets, are all red flags to me.

Can you make an appointment with your actual consultant? Or a member of your original treatment team? 

I don't think you're being unreasonable to want some clarity.

Keep us posted!

Hugs

Suz

Hello Ker25

I am hugely relieved that your six-month scans are clear, that is absolutely wonderful news, you must be walking on a cloud!

It is most unsettling to have question marks over aspects of your diagnosis and we have discussed before about being told that there are mets in the peritoneum.  It was only my main oncologist who said right from the beginning when 'something' was showing up on my scans that she was absolutely convinced it was inflammation and it was.

In your shoes I would ask them to clarify your diagnosis and ongoing treatment.  Only three weeks ago I had an appointment following a scan and finally had the chance to ask the oncologist why both lungs were ablated when I was told there was only one spot on one lung.  She explained that one spot only was FDG-avid - increased take-up, likely a met, and the other lung showed some cell abnormality, so they went ahead and treated that as well.  I am sixteen months since end of treatment and still having three-month scans, last scan was the first time I had CT only but the next one is both MRI and CT.  In fact, (I am happy to be corrected), the radiation comes from the CT scan, not the MRI scan which uses a different type of technology and has virtually no risk attached.

It is very tempting to think that one is at less risk, but this is your health and well-being, I would definitely push for continuing three-monthly scans and ask about the bloods too.

All that said, I hope you are doing well and life is getting back to normal again.  Please let me know how you get on.

Irene xx

Thankyou  Irene and suz. I have emailed my nurse to said I’m not happy. I’ve since had the consultation letter and they have actually booked me a CT and MRI so not what we discussed either. I think the registrar I saw maybe just got a bit confused. Not good when you  the patient. 

Hopefully my nurse will clarify for me. 

otherwise I’m doing really well, I did the race for life yesterday - managed to run some of it. Been doing the gym twice a week for 5 weeks now, just light stuff with a PT through the local cancer charity. 

it’s completely relieved the muscle pain I had.  

now I just have general aches from the run yesterday and a bit exhausted. Lots of rest this week to recover  hope you are both well Xxx

Hi Ker25 ,

Thats great to hear that your scans were clear. 

As both Suz & Irene have both said I would be requesting a conversation with your consultant just to clarify the situation regarding what the nurse has now said about there being metastatic disease in your abdomen, this will be the only way that you’ll be able to put your mind at rest.

I hope you’re continuing to recover well. Let us know if you manage to speak with someone.

Nicola 

Yes I’ve requested on the email to speak with consultant for clarification. Thankyou 

Run?!!!  You are really hardcore, running six months after treatment!  Now take it easy.  Really glad you have followed it up with the nurse.

Irene xx

I’ve spoken with my nurse.  She spoke with my consultant and raised my concerns. 
their response is that they are happy that 4 monthly scans are enough. 

their rationale is that as I’ve had a total treatment response so early on, the risk of long term radiation Damange at this point outweighs the need to scanning 3 monthly. They say that if the cancer were to return the extra time wouldn’t make a difference and the treatment would still be the same. 

I could argue that but I feel like I should just be greatful for being NED. I’m just worrying for watching sake but I can’t help it. They initially said 3 months so to change it has just thrown me. 

they say that they would normally only do a CT every 6 months for someone in my position but as I had the extra “areas” (mets) but they don’t call them mets, they are doing it 4 monthly. 

I am greatlful, I think I’m just so scared of reccurance x