Waiting

Hi Micha and welcome to the group! 

I think we would all agree that the waiting is the worst of times, and unfortunately there is a lot of waiting for tests/scans and results and for a plan of action. Hopefully your MRI won’t take as long as 6 weeks, as that does seem a long time to wait.

However, it is important that your team has the right picture of results to decide on the correct treatment: at stage 1b2 you could be looking at having a hysterectomy, but higher stages would involve chemo and radiation, so they need to be certain about the stage before a decision can be made. 

If you are having pain and symptoms which are getting worse, have you been in touch with your doctor to get this managed properly? You should always be able to access appropriate pain relief, but sometimes you need to be quite firm in explaining your own situation. You shouldn’t need to put up with pain as you wait.

I hope you’ll find the group supportive and encouraging-we’ve been through lots of different treatments so can give plenty of advice based on our own experiences. Please feel free to ask any questions, and use the group to discuss any worries or simply have a vent if you need to-it’s a safe place to say whatever you need. You can add details to your own story by clicking on your name and updating your profile and this lets others see where you are in the process and what has brought you here. If you click on other members’ names, you can read their story if they have completed their own profile.

Keep us posted with how things go, and let us know how you’re doing.

Sarah xx

Hi Sarah, 

Thank you so much for your comforting reply to my post. Yeah I hope my MRI doesn't take 6 weeks too as from smear test to diagnosis it took 7 months! When I went for my 1st colposcopy I went to talk about my symptoms and the Dr cut my off and said "that's nothing to do with this". Then when he called me in to discuss the results/diagnosis after my 2nd diagnosis he still didn't even ask if I've been having any symptoms! I'm now experiencing aching pain in the top of my legs and hips! I'm not sure if I should called the Dr to say or just wait for the MRI as I imagine that's all he'll say to do anyway.

Xx

Hi Micha

Some doctors can be very unhelpful when you’re trying to tell them about how things are, but I luckily didn’t experience that. You could try calling your GP to see if you can be prescribed any pain medication if you’re not already on any, but in general GPS want you to consult with your gynaecologist/oncologist as they are the specialists. The GP may be able to try and push for a sooner scan, although as you are already marked as urgent, this might not be possible. There are some big backlogs in the system, with people waiting much longer than usual in these post covid times.

Could you ask to be put on a cancellation list? If you are able to attend the mri at short notice then you might get called sooner if they have a cancellation slot. It’s really awful for you to be left in this limbo of waiting. My mri and Ct scan were done within a week or so of my diagnosis, but of course that was pre covid. Even after the scans is took a number of weeks for treatment to start. Once you get the scan results, and confirmed staging you will know what will happen and things do become easier to cope with.

Sarah xx