first oncology appointment tomorrow

Hi TheaT

glad you’ve found the group and hope you find it helpful. Feel free to read my profile to see my story. Currently on immunotherapy for this metastatic womb cancer. Like you, I’m finding the limitations on my mobility one of the most trying issues. Both the cancer and side effects are affecting my muscles and joints and I find I can walk less and less. Stairs are often difficult for me too. I hope it will improve as the treatment is working for now, but ultimately I’ll be much less mobile. I was so fit and loved walking miles over hills - I do miss it.

1. i find the best strategy is to focus on things I can do well. I am doing more writing now and taking time to meet up with friends and family more purposefully. Also thinking about things I wanted to do but didn’t get round to. Not wild stuff like bungee jumping but just perhaps visiting places. Another thing has been to raise money for the Peaches Womb Cancer Trust - aiming to raise £10,000. Yesterday we hosted a Brunch for 60 people and raised £1,400! It puts me in the driving seat - giving me some control while doing something positive for others. You’ll find your own path through this, I’m sure. As others have said, ask questions all the way and don’t let yourself be rushed into making decisions. This is your illness and your journey. Medics and nurses are there to help, not run your life. We’re here for you all the way. Bev
   
   

Hi , your very welcome, I have just been straight forward with friends and family (some have disappeared) but I guess it's as hard for them to know what to say or how to approach? And as a man shaving my head nice and clean isn't a problem although I believe a woman can hold up a chin and do the same , we might be in the don't want to be here club but we can still be strong and happy and stay positive 

Welcome to the group TheaT, it really is, as you say, a rollercoaster of emotions going for routine tests, to being told a few weeks later you have terminal cancer, and i have had serious heart issues all my life and know i am incredibly lucky to still be here, so have lived with the knowledge i am on borrowed time for many years. Like you i found telling family and friends difficult, probably the hardest thing i have ever had to do, and although i am ok "mostly" with my situation i too worry about losing my mobility and as i have had 3 MRIs in 7 months on my lower back  to check for MSCC it's more a case of when rather than if, but i can still do most things at my own speed. Thea take a friend with you to your appointment as it's easy to not not take things in fully at what may be a stressful time, and if you write down any questions you have, give a copy to your consultant, we will all be thinking of you, Eddie

Hi Thea, A warm welcome to this elite group of supportive people! My advice would be that before your appointment you get a notebook and write down all the questions you would like to ask and all the things that you are worried about so that you can discuss them with your oncologist! Writing them down and taking them with you are important as it is so easy to get overwhelmed and forget what you wanted to ask.

I would also be asking to be referred to an Occupational Therapist as they are the ones who will help you keep your independence for as long as possible. My other piece of advice, is not easy but practical! Don't worry about things that may never happen! You said if you start loosing your hair for instance, people would notice. How do you know any treatment they suggest will cause you to loose your hair? The answer is... you don't! So why worry about something that may never happen! Good luck with your appointment and please let us know how you get on please!

I hope your appointment gave you the  answers you wanted and know which way you are now going.

Hi Thea I have been wondering how your appointment went! 

Hi folks

I was too tired to reply yesterday as I had spent the whole day in hospital and had a lot to process - and a few tears today - but I wanted to say a huge thank you for your support. It was so lovely to come online and see that you wanted to know how I was. Can I say that means so much.

My physio appointment was scary as she said there was nothing she could do and that I should prepare for losing mobility in my legs due to the mets on my spine. I walked out of there in shock. And then the best thing that could possibly happen was that I noticed a sign for Macmillan on my way up the corridor and just knocked on the door and two kind ladies took me in and sat me down and an hour later I knew I could do this.

Then I had my meeting with my oncologist. Are all doctors so blunt? I was hoping to have time to talk through what was happening, what my options were and ask lots of questions. What actually happened was a quick exam and 2 leaflets about the medication she had chosen to put me on. I had to stop her and ask her to explain.

What I understand from what she said is this - I have stage 4 metastatic breast cancer that is hormone receptive so all the cancer will be treated using the same medication. It is incurable and inoperable but can be managed. They need to know if I am still producing oestrogen so have done a blood test and will start treatment when they have the results.It will be 2 different tablets I will take every day until they stop working. I will also get two injections once a month. 

They gave me a packet of Letrozole and said to wait for a phone call before starting (pressure that's to do with the oestrogen levels) but nothing else yet and not sure why.

One of the leaflets is about a drug called Ribociclib which says it is a 'targeted therapy drug' for breast cancer. Does anyone know about it?

The other leaflet is about Denosumab which says it is for secondary bone cancer  and is given as an injection. 

I had to insist on talking about the pain I am in and the problems with my mobility and my anxiety as I am living on my own. She said it will take months for any of these meds to take effect if at all. I asked what she could do and showed her how little movement there was in my right arm and how this was my dominant hand. She said she would consider radiotherapy and that I would need to get a scan and tattoo before she saw me to decide if it was viable. 

the whole session was less that half an hour and I had so much I still don't know and don't know who to ask.

Hi TheatT

I cannot make things fill better, though here when needed.

You can do this, Letrozole is the medication my daughter is on, and she had to have blood tests, to see if she had gone threw the menopause..

Denosumab, i believe it is for bone strengthening, i have tablet form for that, and others have injections.

You phone Macmillan the phone number is on this site, in fact i phoned them yesterday, so very hopeful, they have nurses there that can answer all your questions. please try them.

Once you get your head round it all, you will get into a new routine, we all do. this becomes part of our new norm, i  am afraid. 

Though the appointment is out the way now, onwards and upwards, as we say. xx

THanks Ellie

its good to know what everything is for. I was taken aback by how little time the doctors take and how matter of fact they are. I know its their job but a few minutes to take it all in would give me time to know what questions to ask. It was only today that I realised how many questions I should have asked!

I am hoping the pain will ease and that I can start to feel physical more able then I can cope more mentally. 

My Daughter was on Tamoxifen  then changed to Letrozole they like to see how you get on on the medication.

Calcium Tablets are normally given i have them and daughter.