10 weeks post op and treatment not started

Hi EP17, my oncologist told me that NICE guidelines were for treatment to start within 12 weeks, and apologised as my start date would be almost that. In the end it was just over 11 weeks. There’s no harm in calling again tomorrow, and Monday and so on, until you hear. You could also ask your GP to chase it as your consultant is answerable to them as they were the initial referrer.

Hi Ep17

I can understand your concern and that you want to get on with the treatments. I also had high grade cancer and know that this can feel scary. 

I suggest you contact your GP in the morning and ask for them to follow up for you. I would consider copying in/writing similar to what you have put on here. 

I did this with my own GP and even though he was not the one that referred me, as he was my GP he was able to contact the hospital directly and chase things up for me. I did it via an online consultation and heard back within the hour. GP had managed to get an appointment to see consultant the following day. 

Good Luck

Jane

Hi EP17,

Sorry to hear about your wait and I can understand your worries.

I think you need to go directly to the medical secretary again. This is likely the quickest way in. Sadly, there are times when you need to approach your local patient advice and liaison service (PALS) but you may have a alternative service locally. It seems unfair to have you contacting all the different departments.

Good luck with everything x

I never thought of approaching my GP at all. I thought that now it was with the cancer centre I could only go to them.

I wasn’t aware of the NICE guidelines but it does seem as if I’m going to be waiting to the wire.

I will call again tomorrow like you all have suggested just to see if anyone can give me clarity. I’m just afraid of being seen as a nuisance.

I had hoped it would start next week, mostly to get on with it but also because we were supposed to be visiting London next week and cancelled it because we thought the treatment would have been started by then.

Hi again EP17, please don’t take this the wrong way but it might be worth you asking yourself why you’re concerned about being seen as a nuisance. First of all why would anyone decent consider someone with cancer to be a nuisance, and, even if they did, why would it matter? The way I looked at it was that they were there to look after me, so it was their job and that if I didn’t say how I felt, they’d think I was okay about how things were. When I was diagnosed with cancer, I phoned my CNS that day, and phoned whenever I was anxious or needed an appointment chasing. They were brilliant and also told me that’s what they were there for. Take a breath, believe that you matter, and phone! And keep phoning till it’s sorted! I don’t know if you’ve had your planning CT yet (pre radio) but if you haven’t, that will be the next stage.

Good luck with getting an answer today, don’t give up until you have some clarity. Hopefully they will say they have completed the planning and you can start treatment next week.  As I was having chemo and radio together, it only finally got sorted at the last minute, but in my case it was the chemo slot they were waiting on.  

Thank you MarmiteFan59.

I know they’re there to look after us but I just felt I didn’t want to pester them until I was having side effects etc from the treatment. Especially given the number of patients they are probably responsible for. You make an excellent point though about them thinking I’m okay if I don’t say anything.

ive been lucky to reach 64 without health problems other than high blood pressure, which I’m not actually helping myself with at the moment. My surgeon actually commented on my sparse medical history when he came to see me before my op. So with this bombshell I’m not sure what I should be doing.

i had my planning CT on 9th January and PET scan on 22nd January but I haven’t heard anything since then.

I’ll give them a call today again.
Again thank you 

Worth a try and it worked for me. Sometimes I found I could be sort of between different people at the hospital and no one could give a clear answer. My GP was able to contact hospital directly on an internal line and bought everything together. 

You are not being a nuisance, you are just worried and trying to find a clear answer as to when you can expect to start your treatment.  Fingers crossed you can get details and a clear plan today.

I tried several times to get talking to someone today but no luck however the consultant herself rang me this evening and told me that treatment would start next week. 
The PET scan showed that the pelvic nodes and the iliac node were highlighted so the plan has changed.

Radiotherapy will be given first but rather than getting Cisplatin on days 1 and 22 they want to give me a higher dose. This would make me too sick and might interrupt the radiotherapy so they want to give me lower doses every week. Carboplatin/Paclitaxel would come after that.

I didn’t ask her but I think that means the stage has changed to 3C1

I am relieved that it will be starting though.

I am glad that you have had contact from the consultant and that you now have a clearer plan for treatment and that it can start next week. 

The changes to the treatment plan make sense and doing lower doses each week sounds like it will be better tolerated. 

I had carboplatin and paclitaxel and for me it was done on a 21 day cycle, which wasn't too bad as it was day 1 at the hospital and then 20 days to recover at home. 

Stage 3c1 is where there is some spread into the lymph nodes but the cancer is still local to the pelvic area. 

I wish you well with your treatment. I found it really hard when it was stretched out in front of me and felt like it would never end- however once started, it did go quicker than expected.

If there is anything you need or want to ask, please do so.

Good Luck and pleased for you that it is starting next week.

Jane