Cervical cancer

A support group for anyone affected by cervical cancer to come together, share experiences, and ask questions.

Newly Diagnosed, couple of questions + also question about PET CT scan and claustrophobia

PhilippaC
Posted by

Hello all

This is my first post. I'm 28 and was diagnosed with cervical cancer 3 weeks ago. Due to other medical conditions (Cystic Fibrosis and a double lung transplant recipient), I've been going for a smear/coloposcopy every 6 months or sometimes sooner depending on what they find. I've always had CIN1 and occasionally CIN2. My last smear and biopsy in August 2018 showed CIN1. I had another smear and coloposcopy in March this year which is when we received the bad news. We have no idea how this has happened so quickly, especially when I've been kept a close eye on. Thinking back though, I have had some symptoms which started in March such as bleeding after intercourse, discharge and lower back pain.

I had an MRI which has revealed a 5.5cm tumor and we was told it was stage 2A. They said treatment is likely to be radiotherapy and possibly chemo - We are absolutely gutted. 

I went for a PET scan yesterday but they wouldn't scan me as I'm claustrophobic and panicked when they put me on the scanner to see how I would react. Luckily they didn't inject me with the solution or I'd have to wait another 4 weeks. Apparently someone was supposed to phone me to go through a long list of questions such as this and tell me to get some diazepam from the GP. The next appointment to have another go is NEXT Saturday, which has seriously annoyed me. I feel like a bit of an idiot too for not just getting on with it, but I couldn't help it.

I managed with the MRI because they put me in feet first and I could bend my head backwards so it was almost like I wasn't in the tube.

Has anyone else experienced claustrophobia with these dreadful scans? Also, has anyone taken diazepam to calm them down? Does it work? 

Can I also ask how people go about work during treatment? I've been advised to be off for the duration. I am literally entitled to nothing (i'm married, not sure if this is why) so panicking how I'm going to afford to live with being off sick.

We see the consultant on Tuesday - Hopefully we will know more about the next step/treatment plan. She still want's to see me even though she won't have the PET scan results.

Thanks in advance :-) 

summer1234
Posted by

Hi PhillipaC

Im sorry to hear of your diagnosis.  I can totally relate to your fear of scans as I failed one too. I had a big panic attack and that combined with the stress of the diagnosis was just too much so please don’t be too hard on yourself. My GP prescribed me diazepam in liquid form and I find it really helps taken about half an hour before the scan, I also ask for calming music. I found the MRI scanner worse than the PET for me. 

I wanted to work and physically probably could have managed it but emotionally and especially with having a long chemo day think it is wise to take the time off and take care of yourself but totally understand the financial worry, Macmillian have the helpline that could give you benefit advice or if you have a local maggies centre they may be able to help as PIP and contribution based ESA are both not means tested but I’m not sure of the timescales for applying but they could help you.

Wishing you lots of luck for your scan and treatment x

Carolyn28
Posted by

hi

welcome to the online community, sorry you've had to come and find us.

firstly try and focus on the fact these scans are vital, the surgeons and the rest of the team can't do their jobs without them

I hate having mammograms, I'm from the breast group, but I understand that this is the most cost effective way for the NHS to keep an eye on us, it's not ideal but it's what we've got. 

I was given 1 lorazepam tablet to put under my tongue whilst having a PICC line fitted and it worked, not sure why you're having to go and get your own prescription but at least the GP won't be able to tut and lecture you on the potential for addiction etc.  I had one GP tell me he wouldn't give me anything but then handed me a prescription for anti histamines on the basis they make you drowsy, I'm not sure which medical school he attended. 

I'm with you 100% on the fact married women are suddenly supposed to rely on their husbands when sick or incapacitated, despite paying taxes to secure payments in times of need or hardship.  My husband is so ridiculously stingy I used up most of my savings on a previous occasion so now have barely any pension provision. 

luckily I was able to continue working through chemo so didn't have to dig into my savings this time but it will depend on the job you do, if you're a teacher or other public sector employee or have a sickness scheme in place just sign off, this is cancer not a cold.

How will they manage your other health concerns with chemo ??? Will your various health professionals work as a team ???

Here's hoping that the missed phone call isn't indicative of what's to come. 

Sorry you're having to go through all this, you don't sound as panic stricken as I was but you're already dealing with so much

hugs

Carolyn

xxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Medway9
Posted by

Hello, I am exactly like you and take 6 x 1mg of Lorazepam.  I take 2mg the night before, 2mg two hours before and 2mg an hour before the scans.  I don't remember anything afterwards apart from being asked what music i like, earphones and eye mask out on me and it's perfect for me.  If it wasn't for Lorazepam there is no way that I would do the scans.

Medway9