Hello. Please forgive me for posting in this part of the forum as I am not diagnosed yet with secondary cancer. However I have worrying symptoms that are ongoing for 5 weeks. I hoped your experiences might help
I have had bc twice. In 2014 I had a mastectomy, chemo and radiotherapy. In 2023 I was diagnosed with a new primary on the left side. I had a mastectomy and had a score of 24 on the oncotype test. 25 was the cut off for chemo so I had radiotherapy and am now on Letrozole.
I am anxious- I fully admit that. But having had it twice and my oldest kids losing their Dad to cancer er and then my Dad their grandpa three weeks later had had a profound affect on me. However I feel that due to my anxiety I am constantly having to convince family and health professionals my symptoms are real. I have had may investigations and when I have been told I’m ok my symptoms definitely lessen. However this time is completely different.
5 weeks ago I started to feel really nauseous. My youngest son had had a vomiting bug a few days before so I thought that I had it but I wasn’t sick. My symptoms have increased. I have lost 12 kg since January - some I tried to lose by going on a Mediterranean diet and lost about 6 kg but the other 6 kg have fallen off in the last 5 weeks.
I feel so sick - especially after eating. I can’t hold a conversation I feel like that it’s so bad, I tremble and it feels like I’m on chemo again from what I remember. That horrible inexplainable feeling of being unwell. I’ve been off work 5 weeks.
I’ve been so bad at times I have visited an and e 4 times - needless to say they are fed up with me. My go has run stool sample tests, thyroid bloods and an and e have done bloods, a head ct and a chest and abdominal ct all with contrast. I also had a gastroscopy. Nothing has been found. Now this is the point I would magically feel better - I don’t at all.
The only tests which have come back raised is bilirubin at 27 ( but I have Gilbert’s syndrome so it goes up and down) and I noticed they did an alpha fotoprotein serum test. I had no idea what that was and it’s a tumour marker for the liver. I was worried to see it was 84 and it should be less than 10! No one picked up on this so I asked and the gp said they will just repeat it in a few weeks.
I have zero energy, feel so nauseous a lot of the time and can’t walk about much or do much at all as I feel so yuck.
Should I be reassured by the cts and other tests? I’m not sure what else to do. They just keep saying it’s maybe a long virus but surely I’d be getting better. I had one evening of diarrhoea 5 weeks ago, and then last weekend I had it again for 4 days, then back to being constipated which is usual for me! Sorry tmi!
Xxx
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Hello @treasures
Firstly big hug to you, you need a huge one 
I’m not an expert and not had secondaries, but have been through the stress of the unknown. This worry can be exhausting and super stressful, Your GP has done loads, you have not mentioned your breast care consultant though and I wonder whether you would be able to have an appointment with him/her maybe and see what they can tell you? They could check over the current results and scans and use their expertise to explain to you what it all means.
Being on such high alert and state of stress may make some of your symptoms worse. Obviously it’s hard to stay calm in such a situation but maybe try some techniques to calm your parasympathetic nervous system and try bring yourself into a rest and digest state. It may help with some of your symptoms until you get to the bottom of this.
I do hope you get some relief soon, look after yourself and get your answers. Be kind to yourself in the meantime.
Wishing you well xxxxxxx
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Hello there
I’m so sorry that you are feeling this way . Just wanted to say that my close friend developed Gilberts syndrome last year - they didn’t know what it was to begin with as it presented atypically and all of her liver enzymes were disordered not just bilirubin . It was only diagnosed after other causes were excluded and she found out that another relative had experienced it..A worrying time for her and those of us who care about her.
I’m wondering how long it is since you finished active treatment as your nausea vomitting and tiredness sounds a bit like my experiences of fatigue . I have been told that fatigue can strike anytime within 5 years of having radiotherapy . Also you are on Letrozole which although possibly a lifesaver can come with its own set of problems .
Bloods can go up and down - anyone can have one that’s out of range ( that’s happened to me before with my thyroid 3 months later it was normal again and has stayed that way ) .I would suggest that your surgery should be repeating / monitoring your bloods to see if there is a trend but you might need to leave it a few weeks to give it time to go down . If you are taking any supplements stop taking them a week before your next bloods as they can affect the results . There’s no point asking for any more investigations than you have had as they are unlikely to proceed at this point given the negative results you have had .
Years ago after a period of sustained stress I developed IBS and I couldn’t eat . I dropped 10 pounds in 5 days and ended up on beta blockers which calm the sympathetic nervous system and help induce the rest and digest state that @Ahbc21 also mentioned . These days I try to manage stress with Yoga ,abdominal breathing , mindfulness . Also can I ask if you have had any grief counselling - you are very aware of the affect of the loss on your family and maybe you are trying to keep it together for them but do you need help ? I have had counselling twice in my life and both times it has helped me to recover from and / also adapt to physical problems .
Sending love xx
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I appreciate both of your replies so much. So much of what you say is true in that the worry and anxiety does make symptoms so much worse and I am truly trying to stay calm and rational. I think the point about grief counselling is right, I have supported everyone through it but I know my wheels sometimes fall off in it all.
This weekend I have tried to get on as normal - even had a couple of drinks, went for a walk, tried to eat normally. However the nausea has been there. Sometimes it disappears for a couple of hours and I feel semi normal, but then it builds up until I can’t speak and my muscles tremble. It seems better if I sit still and do nothing at all? But even if I do something small such as hang some washing on the line it comes back and it’s definitely worse after eating. I just want to sleep constantly.
The gastro consultant repeated that tumour marker on Friday but the results are hidden in my app. Unsure if that’s due to a blanket coving on all those results or because mine are not where they should be still.
I hate this. sometimes I get so sad that this worry and uncertainty about the future we all want is life now. Other times I can stay positive and thank my lucky stars I still have a day. Even if it’s a worrying one. But this has me worn out, it’s now 5 weeks of feeling too ill to function normally and not knowing why. Could they have missed something on the CT? I always thought if something was causing symptoms it would be big enough to see. But maybe I’m wrong in that assumption
Xxx
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Oh bless you
From what I’ve experienced myself and read others on here the NHS app doesn’t hide test results from you - a few people have found that stressful actually as they have found out that they have cancer before anyone has been able to go through their results with them.
I’ve seen a few different posts about high levels of certain things in blood results so you aren’t the only one with this worry .
CT is usually very reliable -but I don’t expect anything can be completely 100,% guaranteed
I had what turned out to be a virus last year and I was ill for a month after feeling unwell off and on for the previous month - the surgery couldn’t find anything wrong with me but did suggest it might be long COVID . I was pretty sure it wasn’t as I had had several negative self tests and previously the same tests had picked it up when I did have COVID but could that be a possibility for you ?
Again I had the fatigue symptoms with extreme tiredness and nausea and feeling generally off balance - I lost a stone in 3 weeks and I wasn’t doing any physical activity at all . I only know it was a virus and not something else because as I was starting to get better my partner then got the same symptoms but for him it only lasted a week . I do think that when you have had chemo / radiotherapy and other treatments it makes you more vulnerable to developing fatigue. I started a post about it to see what others experiences were and was surprised and dismayed to find how many other people were suffering / feeling unwell years after treatment had finished .
For me what helps me with fatigue since the first time I had it when I got labyrinthitis 20 years ago has been lymphatic drainage and cranio- sacral osteopathy . It can make me more tired initially but then there’s always been a big improvement . Worth a try if there’s anyone near you that does it .
I’m a Nurse in the NHS but sometimes in order to get better especially with things that go on and on despite investigation etc. I have had to go outside of the NHS . It might be worth you looking into treatments that are often available as part of cancer er services such as acupuncture which is now accepted as a viable treatment by the NHS . Your BCN may be able to help with that xx
Thank you very much. I hadn’t considered alternative therapies so I will definitely look into that. I’m unsure about long covid it feels like I’m on chemo but my last chemo was 11 years ago.
I feel that this is my liver. I feel so much worse when I eat anything and do get very small but niggly pains on my right side and under my ribs.
I thought I might get back to work today but feel terrible this morning. I run my own business so being off is very tricky and is having an impact financially and on my partner trying to cover. Sorry to be so down, I feel like I’m living in a nightmare and can’t wake up.
Hi again,
My blood test came back as 3.6 so in normal range - how odd that a tumour marker can drop from 80’s to 3. I mean - I’m not complaining!
In the meanwhile my partner had pushed my breast cancer surgeon to refer me for another scan as I continue to be unwell. I am better than I was I think but I get bouts of nausea throughout the day and am exhausted still. He replied and said he would refer me for a PET scan - he had previously said I didn’t need one due to having had imaging. I would have to pay for this as my partner had messaged his private clinic. He now said he will refer me but I’m so unsure what to do now the blood test has settled. PET scans show everything and I’m unsure I want to put myself through the scanxiety. It’s also more radiation and I’ve had a lot.
Thank you for your support. It has truly helped through such a difficult time
Xxx
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Hello again
I’m glad that your bloods are ok now . Whatever you decide to do about your scan / counselling etc. I’m wishing you well . Xx
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