I was diagnosed in 2014 and then had a new primary diagnosis in 2023. That one was picked up on a routine mammogram but I had 13 cm of cancer and precancerous in my breast that even the surgeon couldn’t feel. Only one tiny bit in one lymph node.
I’ve had so many scares and mu GP has me down as ‘extremely anxious’
I have had some left side abdominal pain for weeks. Then started itching about 3 weeks ago (are any of these symptoms real? They feel it.) I had an ultrasound at the end of January. Liver slightly enlarged but apparently it was in Jan 2023 too. So no one concerned. I’ve been told it’s fatty before.
Symptoms continued so had blood tests done end of Feb. All ok. Bilirubin top end of ok but still in range. They rescanned my gall bladder. All ok
Symptoms continued so doc has redone bloods. Bilirubin is 33. (I have however had this before where it went up to 48 in May 2024 so they are querying Gilbert’s Syndrome)
I had to have an ultrasound of my neck last week for a lymph node and the lovely sonographer briefly scanned my abdomen again. He said he can’t see any lesions but to make sure I follow up on blood tests. That’s got me worried.
I don’t see doctor till next week to discuss the bilirubin.
Would there be any mets there after ultrasounds so recently?? Am I just panicking again? I find it so hard not to.
Hi @treasures I totally get that you may be ‘extremely anxious’’, I think we all are to some extent after having a cancer diagnosis and not knowing if we will get a recurrence or spread. It’s not helpful to be labelled like that by the GP.
I was diagnosed in 2023 and had a scare last year as I had ongoing neck pain, luckily for me it was wear and tear probably made worse by the chemotherapy.
If I was you I would call one of the BCN nurses tomorrow between 9-1 0808 800 6000 to chat this through. They have so much experience and will hopefully be able to put your mind at rest until you see the doctor.
Take care🥰
@treasures - It’s difficult to dispel that fear of recurrence or spread , we are only human and I don’t think it’s possible to go through a cancer diagnosis and treatment without some lingering fear always hanging around x
Try not to focus too much on your radiographer reminding you to keep on top of your blood tests , I wouldn’t read anything more into it than the radiographer just saying it because they noted you were having blood tests to keep an eye on things with your LFTS …
As @naughty_boob has suggested , I’d recommend giving the Breast Nurses in this forum a call to chat things through x
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Arty1
Thank you so much for your replies. An update;
I went to see my breast surgeon with my blood test results. He suggested that I had another ultrasound. I paid to see him privately as my bcn is less than helpful and never ever returns any calls.
So I had an ultrasound done last night. (My last one was in January apart from the quick Look by the radiographer last week) I could tell there was something up. He wasn’t very personable and just said I ll write the report. I went back in to see my breast surgeon and he said - there are no signs of cancer but the report says that from what he has seen he cannot rule out early chronic liver disease! I mean… how?? How could my ultrasound be fine in January and now show that? I don’t drink very much at all, I’m not overweight if my BMI is anything to go by.
I’m so so worried! I saw a liver consultant today (paid again) and he said he’s pretty sure I have Gilbert’s syndrome. He had no other answers about the US. So he’s sending me for an MRI next week. I did ask if this could be mets but he said there’s no evidence of that on the US.
I’m confused and worried and have no idea how I’m going to get through till then. I’d be less worried if I didn’t have these niggling pains.
The fear and waiting is just awful. I’m struggling to not think the worst.
@treasures thanks for the update even though it’s not what you wanted to hear. More waiting is not great at any stage in this journey.
Let’s hope the MRI next week gives some more answers.
You may benefit from a chat with the BCN nurses on 0808 800 6000 they are available tomorrow from 9-1 and the n again 9-4 Mon to Friday. If oh want to chat outside these hours MacMillan have a helpline 8-8 every day 0808 808 0000
Take care
@treasures - Thanks for updating , you must be feeling so worried … Gilbert’s Syndrome is an inherited condition is there a history in your family ?
I think the MRI is definitely needed here as you are getting conflicting answers, your liver consultant knows his stuff and if it’s any consolation GS does not cause liver damage , it’s something you can have and never know about .
I hope the MRI gives you some final answers At last but I know that it seems an age away when you are eating yourself up with worry .
Is there anything you can do to distract yourself in the meantime ? X
Arty1
Thank you both I suppose my greatest fear is that it is cancer and it’s just not showing up on us