First post treatment scan stage

Hi and thank you so much I hope your Christmas was a lovely relaxing time.  So good to know you're there! xxx

I had a PET scan around 8 - 10 days ago and my first Oncology meeting on 30th December.  I'm not sure what happens at that meeting but it's not far away and I'm feeling quite nervous to be honest.  Thanks again for your support xxx

I had a PET scan also. My first oncology meeting was with my doctor where he went through my treatment plan. (I was so nervous it was unreal, however I felt so relaxed when he started talking and explaining things) My McMillian nurse was there as well. He went through each treatment, time scales of it and when it would start. He also asked if I would like to see my scan results on the computer (Im not sure why but I said no)

Due to the type of chemo he also said I would loose my hair entirely (this is not the case with everyone) and he also explained possible side effects of the treatment. 

After that I was taken to the chemo day rooms (I was treated as an out patient) to be shown around and to sign consent forms, get bloods taken and a chat with one of the chemo nurses (this was mainly around the risk of infection) I was given a cancer triage number in the event of any issues (saves going through NHS24)

I started induction chemo the week after that. 

I assume this varies hospital to hospital. I also understand that not everyone gets a PET scan however they are very detailed and give your doctor a good understanding of what’s going on.

how are you feeling about the 30th? 

J

xxx

Hi Snobird

It should be an appointment to discuss the scan results, and confirm the stage and type of the cancer (which will determine the treatment plan). If you need chemotherapy, you will be told the type of chemo and how many sessions you will have, and also how many sessions of radiotherapy will be given. The usual chemotherapy given in conjunction with radiotherapy for this cancer is Cisplatin, and this will not make you lose your hair. Other types unfortunately do. But Cisplatin is a low dose of chemo designed to boost the radiotherapy which is the main hitter in first line treatment for this cancer. 

You will likely be sent for a blood test, and given a lot of paperwork to take away and read. I’m not sure in these covid times if you are allowed to have anyone come with you, but if that’s allowed, then another set of ears is very useful as there’s a lot to take in. If not, make sure you understand everything and ask the doctor to repeat or explain anything that’s not clear. If you have any questions you think you’d like to ask, it’s a good idea to write them down and take them with you. My mind tended to go a bit blank at appointments and I’d think of things once I’d left the room! 

Every hospital will have its own procedures-for example I didn’t get to see the chemo or radiotherapy departments until I started treatment. xxx

Hi J... Thank you so much for your reply and explanation of what I can expect.  It helps enormously.  I am feeling nervous but mainly about whether the PET scan threw anything else up.  It is so good to have some insight into this meeting and I am so very grateful.  Like you, I'm not too sure I'd like to see my results staring at me!!  I feel so fortunate to have people like you and Sarah to help pave the way.  Thanks so much again xxx

Thank you so much Sarah!  As I said to J it is so so good and helpful to have you ladies help us understand what to expect.  Thank you both for taking the time.  I will keep you updated once I get my head around what I am told and as always thank you again for your help and advice xxx

You are more than welcome Snobird. 

I am sending positive vibes your way. 

J

xxx

Hi and well done on completing your journey! I already feel a bit less overwhelmed after reading your story. I'm at the very beginning of mine..after internal scans, biopsys and an MRI, I have stage 2b cervical..I get a pet scan then another appointment with oncology team then treatment begins..seems much the same as your own treatment so any advice is most welcome please. I have so many questions..is treatment painful? Do u get very sick? Will I bleed down below?(im post menopausal but heavy bleeding was my first hint that something was wrong) sorry to bombard you..im a 55 year young widow(10 years) so live alone, but have great family and friends support. Just need to hear from people who've been in my shoes. Thanks for reading xx

Good morning Big Bang Theory 

I am sorry to read of your diagnosis and that you have been feeling so overwhelmed, this is 100% a natural feeling although difficult to control isn’t it. 

In regards to your questions, I am no medical expert however happy to answer then from my own personal experience, I imagine everyone is different. 

I didn’t find chemo painful, I did/still do experience some side affects that included joint aches, nausea, fatigue, and skin reactions. Radiotherapy caused no issues apart from bladder and bowel damage that I am still dealing with. Brachytherapy was challenging from a point of staying still for so long and I found the removal uncomfortable however pain relief was given. I terms of becoming very sick, I am not sure if you mean vomiting or poorly with the treatment? I suffered nausea however no vomiting (well controlled with anti sickness tablets) The treatment did however start to effect me more as time went on. Not to the point I could not do anything but I did choose to have a couple of days that I stayed in bed and slept.... a lot. Bleeding was my symptom at the start, well, more severe clotting. Due to the severity of it I needed blood transfusions before starting treatment. This was controlled with medication for the first few weeks and then around week 5 of treatment I slowly reduced the tablets until I was down to taking none, no bleeding started. (This was recommended by my oncologist)  

In all honesty, yes I found treatment tough both mentally and physically. Some days in chemo rooms I was chatty, others I didn’t feel the want to make conversation, and that was fine with all the other patients. Every new side effect I discussed either with my McMillan/chemo/radio nurse which helped me massively put things into perspective rather than let my mind run away with itself. 

one tip I got from the nurse that was with me at my PET scan was to try and eat a little throughout chemo. She used to be a chemo nurse and told me that she found that patients who managed to eat a little while infusions were taking place had less sickness/nausea. Turns out my appetite was boosted with the steroids and all I wanted to do was eat, so this wasn’t too much of a challenge for me! 

I hope this helps a little, as I said, I am far from an expert and this is from my own experience. 

Good luck with your journey, sending positive vibes your way. 

J 

xxx

Thanks so much for the info..it realy helps to be armed and makes me feel more in control. Thanks again. Take care ️