Anxiety Health, cancer, scans.

[SJB90BHB]

Hello everyone,

I am very new to mumsnet- this is my first post so hi!

I just wanted to post and get advice or others experience of anxiety.

A bit of a backstory but I have lost a child and also had breast cancer last year so I’m not in denial that I must have some aspect of anxiety and stress after everything that’s happened.

I have been in remission since November last year 2023 but since, I have never felt well. It was always to be expected as chemo battered my body something rotten but I’m 11 months out from my last chemo and I’m still not 100%.

I have had every test known to man and they can’t find anything wrong with me other than my thyroid disease that was caused by chemo and immunotherapy.
I have had (so far) 5 consultants tell me it’s severe, chronic anxiety causing my symptoms and they tend to scan me now “for my peace of mind” rather than for a clinical/pathology aspect.

I feel like I’m going mad because I experience very physical illnesses. Headaches (but weirdly in my nose and eye sockets) chronic dizziness that I’ve had for months and is affecting my every day life, off balance feeling, heart palpitations , being unable to swallow properly in stressful situations, neck pain everyday, nausea now and again and just this off feeling that I can’t put my finger on what it is I feel when people ask me. I feel almost spaced out and like my body isn’t my own- weird I know!

Ive had -
MRI on my full spine - February
CT scan on Head - February
Full blood work done regularly and everything is normal apart from my thyroid that plays up now and again. Managed by levothyroxine meds.
24 hour heart monitor in July
CT scan of head and brain in July
MrI due on brain (for reassurance) on 3rd sept

All tests have come back clear and normal!!! Apart from my thyroid and a damaged pituitary gland in my brain from chemo- but my consultants aren’t concerned at all and have said I’m suffering from severe stress and now there’s even a mention of PTSD!

Im sorry my post is so lengthy but is there anyone else out there who is like this? I feel like I’m going mad and crazy! I feel like medical professionals can tell me it’s all in my head till they’re blue in the face and I still won’t trust them. Why do I think I know better than highly educated professionals! It’s insane where my mind has taken me and what Dr Google makes me believe.

Please tell me this is what anxiety does and I’m not going to end up being sectioned.

Thanks for reading :) xx

I should also mention that my GP recently put me on beta blockers to help my symptoms but unfortunately after 2 weeks of taking them I’ve felt worse not better.

Did you have an anxiety disorder before you lost your child and had cancer? I'm asking for the simple reason of were/are you aware of how anxiety can affect you physically? Because if anxiety is new to you POST your treatment and trauma's then it can be very difficult to accept that that is what it is. When I was first diagnosed with anxiety 15yrs ago I was shocked to my core as I honestly thought I was dying and there just HAD to be a medical reason that they were missing for how I felt. Have you been offered CBT or SSRI's?

It took 2 years for my thyroid meds to get to 'optimal' - if adequately medicated your levels should be quite low (less than 2 iirc) - the NHS is a bit crap at 'within range' and 'optimal' - do you know your levels op?

Could it be the damage to your pituitary gland causing the symptoms?

Thank you so much for your replies.

@Nogodsnomasters no anxiety disorders before or after my son passed away. He was a twin so my grief was almost put to one side as I had my other son to take care of- he was also very poorly but is now a beautiful, crazy, 8 year old ruling the roost :)
To be honest, and this may sound a bit mean but I used to be one of those people who dismissed anxiety. I have friends who used to tell me they were suffering from anxiety and I used to think it was an excuse! I know that sounds awful.
It isnt until you experience it that you realise how debilitating it really is. I had no idea how physical it can be, I always thought anxiety was a mental/emotional disorder.

@BloodyAdultDC Thank you for your comment, yes this is something I have been discussing with my endocrinologist. He seems to think that because I’m in “normal range” that I wouldn’t have any symptoms. My TSH has recently gone to 7.7 so we’ve upped my medication again but I’m constantly told that the elevation wouldn’t cause dizziness or the symptoms I’m feeling. It’s quite distressing as I’m part of a thyroid group on Facebook and most people with thyroid issues have very physical symptoms. The professionals don’t seem to want to listen.
I do trust my endocrinologist though as he said he has thyroid issues and is on levothyroxine too and we’ve spoke about our journeys with it but he is adamant that it wouldn’t cause the headaches and dizziness.

@Owly11 I'm hoping it has something to do with the symptoms I’m feeling. This is part of the reason they’re doing an MRI just to see the size of the gland to make sure it’s not completely damaged- they’ve told me it’s been flattened but still present and showing partial empty sella. However because my periods are back after chemo (a little too frequent cycle every 21 days), prolactin is normal, oestradial normal, thyroid working even though I’m on meds and cortisol in normal range they’ve said it’s unlikely to be damaged as everything is still working. It would only be damaged if labs were out of range. So I’m a mystery. Because I’ve had a CT scan to rule out any nasties like tumours etc and it’s clear… they’ve said the mri is just a routine scan to see how the gland is performing and mainly to reassure me that all is okay. They weren’t going to do an MRI but because my anxiety was all over the place they’ve said it’s the right thing to do to help my nerves!! It feels ridiculous to be having a scan just to calm me down.

@SJB90BHB
I could have written your post myself.
I had BC in early 2022 and had Herceptin along side chemo as cancer was HER2+ so immunotherapy was necessary. My body reacted badly to Herceptin (some heart issues and enlarged lymph nodes in my lungs) and I was stopped after 9/18 cycles. I have never felt completely well since. I also had some horrible experiences during treatment which has left me with ongoing MH issues which added to existing CPTSD issues. My treatment has also damaged my joints/spine and caused terrible stomach problems so a physical recovery hasn't been completely possible either.
No one wants to know though - they 'saved' my life and I just need to pick myself up and start living because apparently it's all my 'issue' and I just need to make myself happy
I can exactly see where you are coming from. I think that the impact from cancer treatment is very misunderstood and I believe that psychological therapy should be given along side during & post treatment as a standard because a few sessions via Macmillan just doesn't cut it. I also suspect that Herceptin is the main cause of this feeling of not feeling completely well but there's so little research on this. I do know that I'm not alone in feeling this way. I just wanted to get back to 'normal' but it just hasn't been possible.

@MothralovesGojira oh lovely I’m so sorry that you’ve been in those awful shoes! It’s an absolute rollercoaster isn’t it.
Im so sorry you’re not feeling well either.

I Don’t know about you but when you consent to chemo and they explain all the side effects it was all the “now reactions”
-could cause heart attack
-could cause stroke
-could cause allergic reactions etc etc..

No one tells you about the life long side effects to treatment. I remember my oncologist saying to me -
”Get through this treatment and you’ll be back to normal once it’s all over!”
I’m still waiting to feel “normal” :(

My cancer was triple negative so I don’t have any follow up treatment (other than yearly mammograms) so i don’t know physically what you’re going through but I do know how awful the post cancer treatment can make you feel as my best friend has it and she has never felt well on the after treatment either. She said the aches and pains are the worst and with all the information about secondary cancer that they ram down our necks after treatment she said it’s distressing trying to differentiate between what’s her new normal and what’s not normal- if that makes sense!

I too had some awful reactions during treatment and spent 18 days in hospital with neutropenic sepsis, it was horrendous and I don’t think I’ve forgotten what I’ve gone through. No one tells you how bad the cancer journey is- the whole thing is a trauma.
Do you feel the same?

I totally agree with you about the psychological support. It’s pretty much non existent unless you’re willing to pay for it yourself. I had a few phone call sessions with macmillan which were amazing and my therapist was great but they lasted 6 weeks which isn’t enough to help.

I hear you about the comments from others about moving on and “just be happy!”
I’ve heard that many times and I want to scream at them that I’m not choosing to feel this sad and miserable. I wish there was a switch to turn on to make me better and happier but no matter what I do to try, nothing works.

Im sending you a huge hug! You’re not alone and how you’re feeling is valid. So many of us are feeling like you are. I hate that you feel the way I do but I take comfort in the fact I’m not alone in my thoughts.

thank you for being so lovely xx

It’s never ridiculous to take charge of your own well being and I am glad you are having the scan. Just because the numbers seem ok doesn’t mean there isn’t something going on. And putting your mind at rest is a completely legitimate reason on it’s own to do the scan, given you are having unexplained symptoms.

@Owly11 thank you! I feel like a hypochondriac these days and the doctors are forever telling me I’m fine and to go and live my life but the symptoms are very real. I have to keep telling myself that the CT scan was clear and any nasties like tumours, bleeds etc would have been picked up but I think having another scan for reassurance is what’s triggering more anxiety! Everyone is saying I’m fine and nothing will come from the second scan but it’s almost like I don’t believe them. I think it’s because I’ve heard the worst news in the past that I can take my hands off the steering wheel and relax with the thought I’m okay in fear that the worst news will come again! It’s a viscous circle.
I’ve read that being on my phone constantly won’t help with dizziness as the constant screen flickering and scrolling upsets our vestibular balance. I’m trying everything to get well and have my life again.. it feels so unfair xx

@SJB90BHB I am sure everyone offers suggestions so if this is unwelcome please ignore. If all the scans do come back clear maybe have a look at Feldenkrais. It’s a very gentle movement therapy that helps you learn new ways of moving your body when habitual ways of moving are causing a problem. It may help you find new ways to do your everyday tasks with less nausea/discomfort. And perhaps even more importantly your teacher would take you and your symptoms and your trauma seriously.

@SJB90BHB
Thank you for your lovely reply. I'm so sorry that you and others on here feel the same way. It isn't right that we can't access proper help without paying for it.

Sadly for me it's all a moot point as my cancer has returned. I knew it back in November but I wasn't seen for a scan until late February because my phone messages were ignored. It turns out that they undertreated me last time (which I thought was the case at the time) and this on top of the trauma from my previous cancer treatment means that I have decided not to have any treatment this time at all because I can't trust them. When I told the BC consultant that I felt low, ill and under the weather at my first post surgery mammogram (Feb '23) she told me to go on anti-depressants and make myself happy. I can't take AD's because of the CPTSD & complex MH issues and the wait for psych therapy is currently four years here.

Oncology stopped seeing me shortly after (against best practice) and it was only when I put in a request for my scan results/consultant letters a few months ago that I realised that I have developed so many issues as a direct effect of chemo + Herceptin. My new BC isn't new as it's the same tumour which they've said will keep on returning regardless of treatment.

So, here I am. Traumatised and ill and now terminal with no oncology care because they will not accept me back as a patient because I refused the surgery because I can't face the whole treatment thing again. I actually had a full blown panic attack in the hospital car park and passed out. I am apparently being unreasonable because the nightmares & panic attacks caused by: crashing after surgery; being given a few days notice of chemo starting and being told that if I didn't agree then I would have to wait weeks for another slot; being sent home with oral antibiotics with post chemo sepsis (+ in horrible pain) because the hospital was full; being held down by two nurses while my PICC line was torn out painfully; being told that I don't need hair at my age when it didn't regrow; being shouted at for voicing concerns; having my records lost...a lot etc; are not good enough reasons to fuck their stats up and not have treatment...apparently.
Now that I have taken the decision to not have any further treatment, I actually feel better. My biggest fear was that I would be subjected to the same once again and that caused the panic attacks to start again along with insomnia and my anxiety was off the scale. I have taken the decisions off of people who don't know me and who have dismissed the trauma of treatment. The rudeness and lack of care from oncology has actually damaged my faith & trust and it has made things so much worse. I hope that my case is unusual and not typical but who knows but it has definitely and majorly contributed to my lack of a complete recovery despite being told that 'everything returns to normal' post treatment. It most certainly does not for a lot of people.