Just waiting and scared

Hi LOO1 and welcome to our group.

I can read the fear in your words, and can completely understand how this feels when you don’t have all the information you need yet. It does seem very scary when you’ve been told your tumour size but you need to have the results of both the pet scan and mri to know things for certain. I’m not sure why you have been told you’ll be having surgery to remove lymphnodes before you have had these scans. How do they know the lymphnodes are affected before the scans? 

The size does not mean it has necessarily spread, but the scans will confirm whether this has happened or not. One of my friends had a 7cm tumour and it hadn’t spread, and she was diagnosed in 2018, just before I was. Her treatment was successful and she has had no recurrence. 

As you’ve said you live abroad, your plan of action may be different from the UK and most, though not all, the ladies in the group have been treated in the UK. It just something to bear in mind when you read posts or receive replies here. 

Many of us, including myself, have been through chemoradiation, so we can help with advice and support from our own experiences of going through this. Some ladies find they can go through this with little side effects, and for me the main side effect was fatigue, with some diarrhoea and cystitis as my radiotherapy progressed. The treatment is intense over a relatively short period of time but can be very successful. My side effects improved by a couple of weeks from the end of treatment and I had no lasting effects. 

Have you got a support network of friends who can support you through treatment if you need some help, since you don’t have family close by? Do you live near to the hospital where you will be treated? Radiotherapy treatment is done daily so it can be tiring doing these hospital visits, and it can be helpful to get lifts. 

Please let us know how you get on with the scans and get your full diagnosis and staging. We will be here to help with support for you going through this. I know you’re frightened right now, which is perfectly understandable, but I’d encourage you not to think of any worst case scenarios at this point-take things a day at a time and concentrate on the facts you know, rather than thoughts which may or may not be correct. Our minds are very powerful and can make us think the worst, but you need to hold tight and get the results of your scans. Things really do get better when you know what the plan is.

Sarah xx

Thank you for the reassurance. It helps a little bit knowing there are others out there who have gone through the same (and survived). It’s also reassuring to hear that it’s possible to have a large tumour without it necessarily meaning it has spread. It’s just how the mind works, going to worst case scenarios. 
I know I need to try to think positively as much as possible, and only focus on what I know or what I can do right now. I’m hoping the next two weeks passes quickly so that I can have more answers and maybe my anxiety can be alleviated a little bit. 
In terms of removing lymph nodes, from what I understood, here in Spain at least, they prefer to take out the closest lymph nodes even if these aren’t showing up as enlarged. I think it’s so that they can check for microscopic cancer anomalies. This was explained to me as a ‘general approach’ so I guess it could be different for me depending on what the scans say. 
thank you again for the reassurance and knowing this forum exists is also reassuring. 

Lots of us have been through chemoradiation successfully, so please hold onto that thought. I’ve even had my cancer recur in 2019 and am still here!

I’ve not seen anyone else post in the group who has had lymphnode removal as a first course of action, but that doesn’t mean it doesn’t happen-approaches are tailored to the individual so our treatments can vary. 

The hardest time for me was the waiting to know more at the start and that’s common for many of us. We are scared, imagining the cancer has spread, all sorts. Getting staging and a plan gives us a focus to move ahead and get on with what needs to be done.

Sarah xx

I underwent a pet scan, and I can access the analysis/report from the pet scan on the patient app. Having access to this isn’t ideal as it has sent my mind into overdrive. The results mention malignant activity in the para aortic lymph nodes. From what I’ve read that means stage 3 as a minimum. I’m just sitting in my flat shaking. Trying to google medical terms and trying not to freak out. Mind is of course going to worst case scenario. 60% survival rates . Distant lymph nodes being involved. I have a call with doctor on Monday, but I wasn’t prepared to be able to access these reports. I saw them looking for a prescription for sedatives as I informed my dr I felt claustrophobic when in the pet scan and need sth to make me be able to handle the MRI that I have on the 2nd january. I’m just all over the place. 

Hi LOO1 

I’m sorry you’ve had this unwelcome shock on seeing your results-it can be very hard to read information that hasn’t been explained to us, so I can understand you trying to interpret this on Google, but I’d not recommend it! We are not trained medical professionals, so it can make anxiety worse trying to understand what medical terms mean.

I know you can’t unsee survival statistics now you’ve read them, but what you need to remember is that statistics are already out of date when they are published, and don’t relate to you as an individual. 

While it is correct that lymphnode involvement would indicate stage 3 cancer, you need to have the results properly explained by your doctor. 

Did you manage to get your sedative prescription? I find mri scans the most difficult type of scans to undergo myself, but I can recommend wearing an eye mask so you can’t see anything. The scan is also very noisy, so just be prepared for that-I wasn’t warned in advance so found it a shock. If you have sedatives, this should help you get through it. 

I’d try and stay off Google  as you wait to see your doctor-it will make you more anxious and you still have a couple of days to wait for your appointment. Your doctor will be able to give you more information, and the mri scan results will be the last piece of the diagnostic jigsaw  to determine your treatment plan. 

I can’t tell you not to worry as you will, but try to keep busy and distract yourself as much as you can over the weekend. Things do become easier when you have a treatment plan and can focus on that rather than a stage number. 

Sarah xx

Thank you for the supportive words. I know I need to stay away from googling but I also find it’s where I can find some information to at least understand things (diagnostic tests, treatment plans etc). It’s a catch 22. My mind is in overdrive and the wait is excruciating. Wasn’t able to locate my prescription in app but will ask dr again when I speak to her Monday, I definitely need it for the mri. I’ve done one before but only on my foot due to a foot injury and the noise was very loud (and that’s when only the legs where inside the machine! It’s a scary diagnostic tool. Especially for those of us with claustrophobia. 

I agree about scans-I have claustrophobia but found this wasn’t an issue in Ct scans or pet scans where things are open and the machine is going over your body. With the mri scans I’ve had for my cervical cancer my whole body hasn’t been in the scanner as the scans have been of the pelvic area and abdomen/thorax. They have been the longest duration for me-up to an hour-but my head has always been outside the machine and I’ve gone into it feet first. 

I didn’t do any Google research about my own diagnosis, not even when I had my recurrence as I didn’t feel that would help my mental health, but I can understand some people want to know more. The danger can be going down rabbit holes of “information” which may not be accurate, so I’d recommend sticking to reputable sites in the UK like the NHS, Cancer Research UK and Macmillan. 

Sarah xx

I had a follow up with the radiologist yesterday, I asked her about the pet scan report that I’ve seen. She confirmed my understanding. It’s spread to lymph nodes both in the para aortic lymph nodes and the left supraclavical lymph node. So it’s stage 4b. Distant spread, metastasis. After the conversation yesterday I felt eerily calm for about an hour, mostly because it means “I know” now and that part of the anxiety isn’t needed anymore. But of course, knowing severity also leads to all sorts of new thoughts. I will find out exact details of the treatment plan after the new year. 

think I’m just trying to process it all, figuring out how to mentally deal with it etc. I’m a fighter. But I’m sure everyone facing cancer says that. 

As the new year messages come in on my phone I have a sense of dread and also jealousy. Two weeks ago life felt so simple and now it’s just the start of a really steep uphill journey. If I knew everything would work out fine in the end then I wouldn’t hesitate but jump into the challenge. I don’t fear the treatment, I will persevere but it’s the end results that I’m worried about, the fact that life now will always be about containing it, stopping it from getting worse, trying to find a way to mentally adjust to that battle while not really knowing for sure if I will win that battle. That for me is the scariest. I’m not ready to hand in the towel, I have so much I haven’t yet seen or done. 

Hi LOO1 

I’m really sorry to read your post and staging-how tough that must have been to hear. It’s very scary to be faced with this, and will take some time to come to terms with it and what it means for you.  

I suppose the main thing to hold on to is that there will be a plan and you can be treated. None of us know whether or not we will “win” with cancer, no matter what the stage, but I never liked to think of what I went through as a battle or a matter of winning or losing. That kind of terminology is often used with cancer but it made me very uncomfortable. 

I used to compare having cancer with dealing with something which crept up on me, which had a head start, while I had one hand tied behind my back-it wasn’t a fair match from the start. 

Your attitude matches mine-I wasn’t ready to throw in the towel either, and I wanted to do what I could to have as much control as possible in a situation which was in reality outside my control. I have been told by more than one doctor that our attitude has a huge effect on treatment and recovery, and I do believe that. Having a positive attitude as much as is possible does affect how we cope. I have known people give up and let fear take over completely, and while I can understand that, I never believed that would be me. 

I’ve had many dark days in the last 6 years, but cancer doesn’t define me, it isn’t who I am. I have a disease that was not my fault, and how I dealt with the hand of cards I’d been given in my life was the most important thing I could think of. I chose to think positively rather than let the negative thoughts dominate, and two doctors I remember in all of this separately called me “remarkable” for how I coped, and tried to keep going, despite everything I had to go through. The human body, and the mind, has a remarkable capacity we can’t even fully understand. 

We are all unique individuals, we all react differently to treatment and we can do amazing things. You have a hard road to travel, I understand that, but I hope you have support around you and can deal with whatever is to come. Please keep in touch and keep posting-I will be holding you in my thoughts. 

Sarah xx