It just got real

I’ve had my pet scan today at the cancer centre. Wow! It was absolutely fine and staff there were great but I feel emotionally drained (was my first experience at hospital all other appts have been at regular hospitals). Did anyone else feel like this. I’m confused as to why I’m feeling this way as I’ve known since beginning of October and felt ready but this has really thrown me. I should maybe say I seemed to have been the youngest there at that time I’m 34 I know this affects people a lot younger than me but that was my experience today X

I think there comes a time for all of us when it all gets very ‘real’ - for me I think it was when I had my planning scan and my tattoos - which will be with me forever - and I hoped there would be a ‘forever’ to look forwards to…. Maybe for you it was the regular professionalism of the cancer unit - when you are reminded that you’re now part of the system of cancer care with the professionals who deal with this all day every day. You are only young to be going through this but you can do it! Remember it’s when the going gets tough that the tough get going - and you’ll find that you have the reserves to deal with your treatment. I hope the PET scan results don’t bring any nasty surprises and you’ll be able to put this behind you at the end of your treatment.

Thanks Jacks. I was really confused at how I’ve felt since I got home and also when I was there. I feel ready and just want to be able to get my treatment started and finished. I’m prepared for node involvement but hoping it’s not and it’s just been inflammed for some other reason at my mri the other week. Hoping oncologist appointment comes through tomorrow so I can get more information from him. It’s really reassuring to have other people on here who have experienced similar. My kids are staying with their dad tonight due to the scan today so I’ve probably got too much thinking time. Xx

Also the way u worded that realisation that this was my life for a while now is how I felt. I was looking round thinking how did this happen. Xx

Oh that’s a bit lonely, Steffi - try to avoid staying up half the night worrying and wondering. Get yourself to bed now, maybe with something to read for a while, and try and put it out of your mind. I have my 9 months review meeting tomorrow morning with the result of my blood tests (9 months post treatment) and I’m anxious too, but I’ve done all my jobs and I’m going to take my own advice! Xx

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Thanks. I’m in bed now and gonna try for some sleep. I hope u can get a sleep too and will be keeping everything crossed for u for tomorrow xx

Hi Steffi,

I know how you feel, the first time I entered the building named the Cancer Centre was to have my planning scans done and just entering that building for me was like an outer body experience. I couldn’t quite believe that I was now part of the whole cancer system it really did have a profound effect on me.

All my radiotherapy appointments took place in this building so I was entering it on a daily basis when treatment started. I soon found myself recognising the same faces daily and some of us would have a chat and I quickly became comfortable in the surroundings.

None of us want to attend cancer centre’s but you will get through this, it will become a routine that you will adapt to and I’m sure you’ll find lovely people, staff and fellow cancer patients along the way. This is a difficult journey overwhelming at times but you’ll do it :muscle:.

Fingers :crossed_fingers: for good results from pet scan but no matter what the outcome you’ll deal with it and all the professionals are there to help and support you and to make sure that treatment is tailored to you.

Take care xx

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Good luck today Jacks will be thinking about you xx

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Thank you AMF. Bit of a mixed bag today at the hospital. I had an ‘examination’ which was fine, and all looked good internally, but my tumour markers are up a little - above normal. I was 1147 on the scale before treatment, and 100 at 3 months post check - this is a scale where anything under 115 is within the ‘normal’ range, as things other than cancer can potentially cause fluctuation in the protein marker. Three weeks ago when I had the test (SCC Antigen test) it was 175, which COULD indicate there is still some cancer in my body. I had another blood test today, and they’re planning a CT and MRi scan within the next couple of weeks, with another appointment in a month’s time. This is to see if they can find anything going on in my body.

Obviously this is not what I wanted to hear. A recurrence at 9 months would not be good at all. Of course I’ve been Googling to try and find what the ‘other things’ are that can cause a rise in the proteins, and come up with pregnancy, fibroids and liver damage. The only possible one as I can see it is liver damage, as one of my liver tests was abnormal and this can be due to chemotherapy damage. I’d rather research than just worry. Also the level of this antigen is pretty fluid, hence the second test. Of course I’m worried though. If there is more cancer it will depend where it is, and I could be looking at an operation or/and more chemotherapy with another drug. I guess there is nothing I can do about it, but I do feel as it my body has let me down if it’s holding on to cancer after everything they’ve done to treat me. It may be a false positive, but I just don’t know…

Hi Jack’s,

To be honest I know nothing about these tests. The first bloods I had done were taken the day before my chemo started I was very surprised that they did not do full blood work before this.

As you say the number is up slightly and this could be just a one off so good that they are going to repeat and do scans. Good that the internal showed nothing.

The cancer journey is a difficult one minute positive the next negative.

I recently had my first follow up and it was also a mixed bag. Scan taken 7 weeks post treatment still showed some tumour remaining lymph nodes still clear doctor happy to leave for 3 months and see what happens. I have adenocarcinoma which I know is slower to respond and the grade is 1 which doctor says doesn’t split as often so radiotherapy can take longer as it kills the cells when they split so I’ll just have to wait and see.

I am going back to work next month looking forward to that.

Fingers :crossed_fingers: everything will be fine, you are so positive and that will help you through.

Take care x

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Oh Jack’s I’m so sorry to hear you have more scans and tests after all this time. I am surrounding you with big hugs and love xx

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I’m having a bad day today after coming out of hospital, ive had to have a drainage tube into my left kidney as the tube to the bladder is blocked by the tumor, the urine was clear but now has a red tinge again which has sent me into a full blown panic attack, got blood tests later, chemo chat tomorrow and treatment on Friday, all I want to do is curl up and cry today, hope everyone else is getting there, thoughts are always with you all xx

Oh Dawnann how horrible, hopefully once your treatment starts the pain will reduce and they’ll be able to do something with the kidney problem.

Try to rest and get others to look after you.

Thinking about you :two_hearts:

Hey Dawnann, I had a stent inserted in my left ureter for the same reasons (tumour was pressing on the tube and preventing my kidney from draining properly). I was told by the urologist that it’s common to have a little bit of blood in the urine and some kidney discomfort during the first week or so, which I did, but after that it settled right down and I’ve had no issues at all since (stent was fitted on 28th July and is still in situ).

Hopefully this helps put your mind at rest somewhat; obviously worth chatting to your specialists but I really don’t think it’s anything to worry about.

Jen x

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Sorry to hear this, hopefully u can have ur rest day today and the chemo does it’s job. @Jacks133 will keep my fingers crossed their is a reasonable explanation for your markers being up. Can I ask is that a standard test that they do? I’ve never heard of it before other the being mentioned last few days on here. X

Oh thank you so much it’s only been a couple of days since I had the procedure so that’s reassuring to know that it can go on for a while yet, I’m in no pain just the expected discomfort so hopefully everything is ok xx

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Hi Steffi - there are specific blood tests that can be used to detect a type of protein in the blood (antigens) that are released by cancer. They are otherwise known as tumour markers. There are different tests for different types of cancer. This is comparatively new medicine and means that they can screen patients for recurrence without having to go through scans, only employing scans if there is something to investigate. Some European countries use these tests as a mandatory procedure, and so in America and Canada they are used, but not all hospitals or regions in the UK. I’m at a teaching hospital in London and I was black and blue with all the blood tests, including before I started any treatment, giving baselines for liver and kidney function, for example. These were then checked regularly throughout the treatment. Other hospitals may do things differently, but all will now use the same advanced chemo drugs and targeted radiation.

I was at my review meeting yesterday, and I have two scans booked for Monday! So they are not hanging around, for which I am very grateful.

Would anyone be able to tell me what to expect from my first meeting with the oncologist? Thanks xx

This will be the appointment when they should be able to tell you everything about your case including all the details of treatment, what to expect, etc. - and you can ask questions. I really recommend taking questions with you on paper or your phone that you want to ask, so you don’t come away thinking you wish you’d said something. You should also be given the details of your specialist oncology nurse, who you may even have an appointment with following the oncologist. Of course, there may be a different procedure in other hospitals. I was also sent for blood tests, and had to sign consent forms - or ‘awareness’ forms where they listed all the possible side effects of treatment. If someone asks you to make a decision about your treatment options I would bounce that back at them, because you’re not the expert, they are - and say ‘my priorities are x and x - what do you consider the best course of treatment bearing this in mind’. For me there was no decision to be made - I was basically just wanting to be cured, and they explained why an operation was not advisable or necessary, and why they were choosing the treatment options they had for me. So - mainly advisory, but your chance to ask questions. X

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Great thank you. Did you get dates etc for treatment and planning scan at yours? Xx