I feel like I’m on a runaway train and I really want to find a way to know if it’s spread rather than just waiting to see if it pops up through symptoms in years to come.
A routine mammogram found this cancer, I couldn’t feel anything
The lymph biopsy said no cancer but the 2 lymph nodes they removed both have cancer.
I was told I’d need a lumpectomy and 5 days of radiotherapy then I’d be done. Now I need 5 months of chemo.
I was told by my first surgeon that there was no point in doing any further scans. That was the day it was confirmed I had cancer so I don’t remember a detailed conversation about my fears.
There will be no scans on my breasts now for a year. But how can I not fear the worst. Maybe it’s in my liver already, or my bones or my brain.
Surely there must be a way to find out for sure and have a chance to treat that earlier and more effectively?
Has anyone else had a scan or test? What did you have and where did you go to get it?
I had it drummed into me by the BC nurse at the hospital to “learn my body” and go straight to her if I felt something wasn’t right. A year after surgery, ten months after rads, I had a lot of problems with my stomach so through her, I had a gastroscopy and a head and torso CT scan with contrast. I found the CT scan report very reassuring, everything was fine. But I have had to come to terms with the fact that that was a moment in time and the situation can change at any point in the future. I am also aware that having multiple, repeated scans is physiologically not good for the body and also I don’t want to be the girl that cried wolf, so it is a balancing act in controlling natural anxiety and proactively managing any symptoms. I was lucky with my BC nurse, not all of them are so emphatically on one’s side. If you actually suspect that you have spread and can describe the symptoms accurately, you may well be able to get a scan on that body area on the NHS. The NHS will not do regular or repeated scans without a cause due to the negative impact on the body as well as the expense. For reference, a friend has recently had an MRI and a CT scan with contrast privately at a Nuffield Hospital for suspected bowel cancer, which cost £750 and £1,300 respectively but she had to be referred by a private consultant at the hospital which cost £400. Expensive but what price reassurance? Bottom line is you need strategies to control your anxiety and whilst being told following a scan that, at this point in time, you have no spread is an obvious one, it isn’t sustainable in the long term. But maybe once is all you need to help with the anxiety?
@Tigress thank you for taking the time to write such an insightful reply.
It made me cry as I think you’re right, it’s just anxiety. I haven’t even met with oncology yet. I’m in the waiting bit between surgery healing and chemo starting with only the company of brain fireworks.
Getting used to having nasties in your body is tough going.
I don’t understand how it spreads beyond the lymph nodes and having just found out it’s there I have this image of it whizzing round my body finding places to settle.
You’re right though, a scan isn’t going to show me tumours in other parts of my body from this cancer. Not yet.
Oomph. The mental gymnastics needed to calm my brain and find some peace is a real struggle some days. Xx
I can completely relate WF. Having this awful thing landing on you when you didn’t expect it, don’t understand it, can’t control it and definitely don’t want it, is very hard to navigate. I hope this doesn’t sound patronising because it is meant honestly, from someone who has been, is and will continue to be where you are now with anxiety, you are very early on in this process and only time will be able to bring you confidence that your MDT know what they’re doing and your cancer isn’t running amok throughout your body. I could throw statistics and probabilities and rationale your way but I know it doesn’t help the visceral fear on a quiet Sunday. I hope there will be others along to give you some comfort that your response is completely natural and give you suggestions of how to deal with it. The only thing that works for me is distraction. I wish only good things for you during your treatment and recovery. I’m almost three years on and before you know it, you will be too.
@Tigress no that’s not come across as patronising at all. I appreciate the care you’re taking to talk me back to sanity.
You’re right that at just over 2 months in I’m still in the very early stages.
I hate to wish time away but I think this year is going to be absolutely rubbish so I wish it were this time next year.
Sometimes I feel like I’ve got this, I feel mentally and physically strong. Then in a hot minute I can be at my very own pity party or worse in a complete panic.
I’m going to go clean out a kitchen cupboard. I can control that! Lol
Hi,
It’s so hard knowing that the risk of recurrence will always be there. I like you had 2 lymph nodes with extra capsular spread and extensive lymphoma vascular invasion. Mine was also a grade 3. After lumpectomy I was also recommended chemo. It’s sh.t, but 2 year from lumpectomy Ive learned to live with the uncertainty that a cancer diagnosis brings. I’m also on a targeted drug, which I am due to finish the end of October. I don’t count the 10 years of letrozole as compared to chemo and Abemaciclib it’s luckily been okay. I almost forgot about the 5 sessions of radiotherapy.
Prior to cancer I was a fit 61 year old who regularly cycled 50 miles in a day. I was reluctant to take a paracetamol, so ill health has been a major psychological adjustment. Having cancer for me has been a grieving process but in time like me I hope you are able to adjust to this new normal. Sending you my best wishes.
@shade thanks! It’s good to hear from people so much further down the line.
Have you been able to stay fit?
I was just starting to get my weight and fitness in good shape through Padel tennis but I’ve had to stop that completely and have returned to comfort eating.
I’m managing to do some static cycling (30 mins) and enjoying long walks when it’s not storming outside, but I crave that healthy feeling I had. Knowing I’m going to get pumped full of poison is messing with my head!
I’m going to see if I can get on the gratitude train. I’ve got to do something as I’m getting in my own nerves.
I managed to cycle up to last October when I developed thyroid problems due to a virus I had in August. However I walk regularly with friends. I am due to meet 3 different friends on 3 occasions next week and we walk and talk. We usually manage 10,000 steps and a coffee. I’m not as fit as I was but I am still stabilising my thyroid levels and the Abemaciclib does zap my energy. My thyroid problem was just bad luck, a virus attacked my thyroid gland and initially caused it to be overactive and now it’s underactive but this problem resolves in 95% of people in 12-18 months.
I am hoping to get back on my bike when the weather warms up and I did manage to cycle in the 3rd week of chemo although I only did 20 miles. I often feel less tired if I do some exercise and I find being outside with friends good for my mental health. If you are due to have chemo during the spring and summer it is a good time of year to have it. I would sit outside and have a coffee or if at the seaside it was takeaway fish and chips. I was careful during chemo and luckily wasn’t ill but did still get out. I confess whilst taking Abemaciclib I’ve not been as cautious and subsequently have had a few viruses but I plan to be bug free from now until October when this medication is completed. I’ve still enjoyed life during cancer treatments. I now have a new appreciation and enjoyment in the simple things of life.
Totally get where you’re coming from here. Once you’re through the other side after going through the trauma of it all, then the anxiety starts, hoping it won’t come back!
I begged for more scans but never got any. After my mastectomy LCIS was found as an incidental finding and I worried about lobular breast cancer in my remaining breast. I had all sorts of lumps and bumps a year after the surgery that terrified me but my clinic wouldn’t even do an ultrasound. In the end I went privately and everything was fine. Later on I had a persistent cough and ended up with pneumonia and it was only then that my GP sent me for a chest CT scan - but it was to check my lungs not my boobs! I was convinced it had spread to my lungs but everything was okay. My breast clinic wouldn’t help at all because I’d had a clear chest x ray previously. I think some people have been more fortunate and their trusts have a more belt and braces approach with scans, but mine didn’t.
At the end of the day I came to the conclusion that whilst it was important to stay vigilant, I had to find a way to manage my anxiety and I saw a brilliant councillor through Macmillan who helped me to stop catastrophising everything and to realise that living every day in fear will just ruin my life.
With scans it’s important to realise that tiny cancers or circulating cancer cells wouldn’t show up anyway so being vigilant is important. It’s very unlikely you’ll get scans on the NHS unless they think there is a clinical need. They just won’t do them to alleviate our anxieties.
It just takes time to come to terms with things and learn how to manage health anxiety. If you’re struggling then do get some counselling. Your BC nurse will point you in the right direction.
Hello @warmfuzzies I’m not as far into this journey as you yet. My cancer was found in my lymph nodes at the time of biopsy and they sent me for a CT & MRI to check for spread before they make a full treatment plan (get the results next week ). As your lymph involvement was found after surgery maybe they will send you for scans after you’ve recovered from your surgery ?
I think the mental gymnastics and managing the anxiety is probably the hardest part of all this! Hope having a good clean of your cupboards help you settle a bit x
You don’t say what age you are so I guess it may be different.
I initially had lumpectomy and it was also found in the two lymph nodes they removed, like you I was told the lymph nodes looked okay at ultrasound. I then had a full auxiliary clearance which showed no further spread. I was offered a oncotest after this to see if chemo would be beneficial, that came back at 11 so went straight to radiotherapy.
It was only at my planning appointment did I get my first ct scan which showed something on o e of my kidneys, I was then sent for a ct scan with contrast and results showed a large cyst.
I was 58 at the time, in fact had my first radiotherapy on my 59th birthday.
I was diagnosed with her2 positive grade3, so went through chemotherapy first, then had a lumpectomy. Still waiting for radiotherapy. My lymph nodes were not affected.
During the treatment I developed back pain and requested a CT scan. They didn’t want me to have one, reassuring me, that the spread was impossible at this time and stage. But I insisted.
After the scan I was told that there are two lesions on my liver present. Feel devastated. I am having a biopsy this afternoon. It must have spread by blood.
@Frances55 i think I might try for some confessing as I try really hard not to get worked up but then I find myself holding my breath or sighing and I know I’m stressed inside.
I’m glad your scans were clear and that you’ve found a way to not catastrophise.
@twinks77 i can definitely recommend clearing cupboards! It’s a win-win!
I’ve been offered the option of further surgery to clear all lymph nodes or take treatment. I don’t know what to do so I’ll discuss with oncology as I’m guessing chemo would come before more surgery.
I’m age 55, ER/PR+ HER-
I’m hoping that oncology has a handle on how this may have spread so far although I understand that the only way to tell is to take the lymph nodes out.
To then find cycles in other places is the thing of nightmares and it’s the fear of that which makes me want a big scan.
I guess it’s because I’d have no idea about this cancer if it weren’t for a scan.
). As your lymph involvement was found after surgery maybe they will send you for scans after you’ve recovered from your surgery ?