Oncology appointment after having PET Scan

Hi Ballerina the waiting is the worst. I am currently in week 3 of my treatment. All I can tell you is what happened at my meeting with my oncologist. I was introduced to one of my specialist nurses and then he showed me all my scans results and talked me through them and answered any questions I had. He then went through the treatment and the possible side affects amd again answered my questions. I was given information about the treatment etc and what I should and shouldn't do. I then had to sign consent forms. They also gave me an emergency number to ring for out of office hours as such. I wasn't given a start date but that came through fairly quickly afterwards. Make sure you write down anything you want to ask and if possible have someone with you as its a lot of information to take in or if they allow record the appointment so you can listen back. Good luck tomorrow. Xx

Thank you so much, I have no idea what I should be asking other than will this be gone after treatment because I know that everyone responds differently to treatment. I feel like I go into appointments, listen & nod then wait for the next appointment, just plodding my way through them all. My husband comes to the appointments with me so he asks questions, it's hard to think when you're feeling numb xx

Hi Ballerina, I am sorry to hear about your diagnosis and glad you have found this fantastic group which will help you not feel alone during your anal cancer treatment. My first appointment was different to Bungle’s as sure not all hospitals follow the same systems. I saw my oncologist on my first appointment and she announced I would be offered the standard six week chemo radiotherapy route and proceeded to tell me all the side effects which the treatment can cause. Well I was mortified and nearly run out of that room. She said it wasn’t pleasant treatment and as I was young and healthy I should be able to ride the storm so to speak. I was 66 and completely shocked. I initially refused treatment and she said that was my choice and to go home and get back to them when I decided. I then saw my specialist nurse and she was an absolute angel and said she would be with me all the way and help me with creams and pain control. Sounded all very frightening and I was already doing a mental list of what possessions I was going to leave my family on my death! I wanted to hug her but it was a time we were still wearing masks but she talked me into starting the treatment. I was then booked to have the tattoos done on each hip and pubic bone which are markers for when you go for your radiation treatment so they know what position to set the machine. I went home quite depressed but then started googling and they made things worse but luckily found this site. The side effects worried me but I remember reading from a member on here that these side effects which you don’t normally get all of them from what I’ve read don’t come all at once. How it affects your skin, you become your own advocate on what creams and pain relief suits you. I used a gel right from the start called STRATAXRT which I had to buy online and it is initially expensive but you can use it right through and beyond treatment during post recovery stage. Many others have found other creams quite effective but I seemed to find many creams honey based, silver based or lanolin based irritating. Get a sitz bath from Amazon which members on here have found invaluable for cleaning and pain relief. I am three years three months post treatment and I am not back to the way I was completely as I have some gut issues and lactose intolerant but all in all feel great. Some members do manage to achieve getting back to the way they were but for me I now have a life of being aware of how I eat and being as healthy as I possibly can. Good luck with your appointment and keep in touch with us and we will help you through this!

Julie

Good morning Julie and thank you for taking the time to respond to my post. Did you also have Anal Cancer and do you mind me asking if treatment worked for you? There are so many things to be aware of & I also know that they can't tell you for sure how you'll feel because everyone is different but hearing the worst case scenarios is scary. Did you start treatment quickly after you decided to go ahead with it? I guess these are the questions I need to be asking the Oncologist this afternoon xxx I'm so pleased I've found you all & that I'm not alone x

Hi Ballerina yes I had stage 2 anal cancer with no lymph nodes affected but they can never be sure so they usually go for the big standard treatment and blitz any possibility of spread. My treatment from my first appointment with the oncologist I would say started within that month for what I can remember. Anal cancer is pretty slow growing. I would either take a notebook in with you to jot down any answers to your questions or a trusted friend or partner as you may find it’s a lot to take in. I am showing no sign of anal cancer and life is great as it can be. This may be a time to look at anything that can improve your health and fitness to help prepare you for your journey. Ask about what creams they will be giving you as some hospitals are pretty reluctant to give you anything until you have skin issues rather than prevention which I think is due to costs restraints personally. My hospital were pretty mean when it came to giving me anything at first. If you have a maggies based at your hospital they are good for advice and also MacMillan cancer care nurses. Their helpline on here is great. It’s too much to take in at first but once you are booked in for your first treatment you should get a treatment schedule of the times you are booked in for the rest of your treatment. Good luck with your appointment and don’t forget you have got us!

Julie

Hello Ballerina

The good thing to take from all of this is that your oncology team are really on the ball - don't read anything into the rapid appointments, some hospitals are much quicker than others, fortunately.  Waiting weeks for results can be agonising when it seems that your whole life is on hold.  I am pleased that you have your husband attending appointments with you, mine were during lockdown but the department were really helpful and I could have my mobile on loudspeaker on the desk and my husband was in the car park taking notes and asking questions when like you, I was too numb and terrified to absorb much.

Please let us know how you get on, we are all thinking of you.

Irene xx

Hi there's no right or wrong as to what questions you ask. I found myself asking any random thing that came into my head. I think my oncologist was amused by some of my questions but he humoured me and answered. No harm in plodding. Like you say everyone is different but as far as I can see this is a generally successful treatment.  Hope all has gone well today. Xx 

Just got back from my appointment, I'm going to have 28 days of Chemotherapy and Radiotherapy. Got to have a vaginal examination and blood tests prior to everything, something else to stress abou xx

Hey Ballerina!

I so feel for you the beginning of your journey is so worrying but be brave and ask questions x you need it gone and your treatment will do that.  I had 28 days radiochemo therapy as many on here will have had too.  Always ask for help and discuss your pain relief as early as you can!  I was surprised that everyone has different reactions and side effects, some longer and some shorter times, it all depends on your tumour and your body etc x x  when you are through the other side you will be so relieved and can get in with life x 

I reminded my tumour to “get out” every day and at radiotherapy the team were so calming and reassuring.  

I didn’t think twice about turning up and am eternally grateful for my life - the only goal I had x 

Thinking of you and get on here as often as you want to x take your time and use all the creams and meds you can get - also check out the best pharmacy to use as ai have a friend who dispenses but took me a few weeks to ask to use her - she dropped my orders in on her way home x magic x 

Angie x 

Thanks for taking the time to reply, I had some of my tumour removed with surgery as they were going to just do a biopsy but when they were there they decided to remove it but a small bit was left bind. I was feeling ok about everything but today they dropped a bombshell & said I needed an HIV test & a vaginal examination prior to the treatment starting, another waiting game & back to feeling nauseous , when will it end .... Xxx