This is a bit of a saga - please bear with me! I recently had a WLE and SNB with clear margins and no node involvement but because I’d had persistant pain in my ribs and breastbone my oncologist ordered a CT scan which I am having tomorrow - “just to reassure us both” - her words. Seperate to all of this, for a while now, I have been experiencing a lot of bloating in my stomach with some discomfort so I made an appointment to see my GP as I didnt want to bother my BCN with what seemed like an unrelated problem (also because I was scared I’d look neurotic - my anxiety levels have skyrocketed since being diagnosed).
I saw my GP today and she examined me and said my liver seemed enlarged, which it shouldn’t be and that she would try and arrange for me to also have my abdomen scanned when I have the CT scan tomorrow. She also said that with my family history of BC (I am due to have genetic testing) she thought I should also have a blood test for ovarian cancer. My GP said that she would call my BCN to discuss and make arrangements.
About an hour later my BCN called and seemed pretty annoyed. She said (several times) that if I’d had any new symptoms I should have called her and not gone to my GP, that it might not be possible to do the additional scan without a consultant seeing me, that she would do what she could to arrange it but that it m ight not be possible, that getting my GP involved had just complicated matters. Basically I felt told off. Why was she so annoyed? Admittedly I am feeling pretty sensitive but after the call I sobbed. As the evening has gone on I have felt more and more scared. Until the diagnosis of BC I have never been ill and now all of this. Ultimately I am terrified that the cancer has spread - I was worried about that before but now with this liver enlargement I feel even more freaked out! Any thoughts or words of wisdom anyone?!
Firstly, poo to your BCN. I have no idea who I’m meant to talk to over any symptoms and would probably have done the same and being a breast care nurse she should have more empathy and tact than to make you feel told off! Especially when you’re going to be feeling so worried and sensitve. So, IGNORE HER!!
Secondly, with regards the waiting, you know from the initial diagnosis that waiting for results is HORRIBLE and there is nothing we can say that is going to make you feel much better. I had persistant pain in my ribs for a couple of months before I was diagnosed and had a CT scan and it was fine - but the waiting was awful. No reassurances other than with a relatively small lump and no node involvement your chances of it having spread will be very low and it’s probably nothing, but we all know anything is possible with this nasty disease. Hopefully with a clear CT scan you will feel like you’ve had a bit of an MOT and able to move forward and battle on!
Odlly enough I am going through the very same thing at the moment, feeling sick / feeling full all the time, discomfort on my right side behind the ribs and I have been extremely itchy all over whilst feeling generally not well.
I suspected my liver as I have had liver problems in all 3 of my pregnancies, so when I saw a gp y’day and said " I think my liver is playing up" he gave a little smile. No doubt a self-diagnosing patient, he was probably thinking.
Anyway, he has examined me and sent off for an urgent Liver scan and I had my bloods done today.
I think sometimes you just have to go with your instinct and if you are really not feeling right then of course you should not feel like a hypochondriac for telling someone about it.
It may just be with me that my messed up hormones are playing silly buggers with my liver again - who knows?!
I hope it is all ok for you, It’s quite stressful having to keep going through all these tests.
Thanks so much for responding - really appreciate it - your responses made me feel a bit better. Sandytoes - you’re right, poo to the BCN and the waiting is HORRIBLE!! The chances of it having spread are really low but there is always that, dreadful, what if, feeling…j-bug good on you for trusting your instincts. Hope the waiting isn’t too long for you and that you find out as soon as possible about your liver.
Sometimes it really feels like the whole BC thing sucks. Its just been a bad day today. This forum is so brilliant though - helps to not feel so alone and to ‘talk’ to people who get it.
Just wanted to say hi and echo what the others have said.
Definitely a huge POO to the BCN. Perhaps if your BCN had made the pathway clear and had been more approachable, you would have called her. If she’s got a problem with the GP, then that’s her problem and she needs to be an adult and deal with it rather than acting like a petulant child!
As Sandytoes said, on paper, you’re a pretty low risk so hold onto that. Waiting is hell and worrying takes up a lot of energy so try to park it somewhere if you can.
how did you get on with your scan? did they manage to do your abdo at same time.
usually you have shared care between your gp and your trust so the BCN is just being a bit of a tit if you ask me… if you have a sore tummy and bloating then not everybody would think that had anything to do with breast cancer anyway… and not sure she would be the right person to speak to if you were concerned about your ovarian risk anyway.
hope you dont have to wait too long for results and that the outcome is reassuring for both breast and ovarian concerns… the blood test they do for ov ca isnt very reliable though so its probably better to speak to your genetic team about your risk than rely on that as a screening tool although it can be useful if you have other symptoms too… your gp can refer you for a vaginal and abdo ultrasound to look at your ovaries (this isnt something a bcn would do normally)
I havent been on here for a while as tried to put BC behind me. But with close friends being Dx with 2ndaries and relatives and friends being newly Diagnosed i felt in need of some breast buddies comfort.
jaqui I have to agree with what the lovely lasses before have put - you wouldnt fone your BCN with bloating etcand she is just beeing silly!
Tomorrow I see my new GP ( now that is a saga) to give him my history and ask if he will refer me for a bone scan. Since may i ahve had burning back pain in the lower back pelvis, its there all day and all night, its not worse at any time of day and nothing makes it better except analgesics. I daftly didnt mention it to anyone because i was afraid they would say I couldnt have my recon (which i did and I love it). I also have bloating abdomen and feel full very quickly, with pain in both shoulders but my love of all things chocolate and vino means I dont lose weight as I can pack in those empty calories.
i believe this is all in my mind but I have to say as i race to that 3 yr mark i feel afraid.
you are all so correct about the waiting it is so hard!.
i can identify with your worries, i recently had a Ct scan to check on a blood clot that i had & the hospital rang on Friday night at about 7pm & said that all on clot front seemed ok but they want to re do scan in 3 months as there is a tiny nodule on 1 of my lungs obviously i am very scared, the person that called me has told me not to worry as this often happens with scans & it turns out to be nothing more than scarring from previous infections but 3 months of worry seems so long to wait & the late call at the start of the weekend didn’t help either:(
I too had clear margins & no node involvement & had my surgery 10 months ago.
My blood test has come back as abnormal so I have to have them done again, the gp mentioned that in particular my phosphates were very low? I have my liver scan Monday 7th, 2 days before my reconstruction surgery!
Sarah, sorry you are going through the stresses of this crap disease again.
Thanks for the kind words of support everyone I don’t know how I would have survived this whole BC ordeal so far, without all you wonderful wise women on this forum.
Rachel - sorry to hear about your pain and fear - how did you get on at the GP’s?
Sarah - poor you getting that call at 7pm on a Friday - what were they thinking?! Waiting 3 months sounds ridiculous - have you been able to speak to anyone and get any further news or reassurance?
Paula - did your GP give any idea of what low phosphates could indicate? A scan 2 days before your reconstruction - wow that’s a lot to be going on with!
Since my last post - I had the CT scan on my chest with contrast dye last Wednesday. By the time my BCN had spoken to the consultant about extending the CT to my abdomen and pelvis and he’d agreed it and called through to the CT dept, I was already on the bus home - typical! She said that an urgent ultrasound had been requested for my abdomen and pelvis instead which should ‘hopefully’ happen this week. I have an appointment on Thursday to get the results of the chest CT scan. So I’m in the waiting room AGAIN - waiting for results of CT test, waiting to hear about scans…I try and stay in the day as much as possible which mostly works but does get wearing. I have moments of feeling really low - and feel sensitive to every ache and pain. Especially aware of aching in my liver area, which extends into my right shoulder and my swollen stomach. Also started sneezing now and getting a sore throat so seem to have picked up some lurgy - aaagh, soembody shoot me!
When we spoke after the CT scan my BCN admitted that she’d been annoyed with my GP and felt that her intervention had been unhelpful - felt like saying - why take it out on me then?! Instead, I told her that I felt that my GP was trying to be helpful and that I’d felt told off. She then changed her tack a bit and said that if you have any concerns you really can call me…To be honest, I feel even more reluctant now after her recent attitude but will do so from now on as that’s what I’ve been told to do!
Lulu thanks for the info about ovarian cancer. Think I just feel a bit swamped with the whole BC thing, these other symptoms and knowing that I still have to go down the whole genetics route yet (which I know you know a lot about) - especially with 2 daughters…
Good luck and best wishes to all. Again, thanks so much for your support
I found the whole CT scan pretty easy (especially in comparision to MRI which is really claustraphobic). The whole thing only took a few minutes. I was warned that when the dye goes in you can feel a metallic taste in your mouth and experience a sensation of warmth in your pelvis which may feel like you’ve wet yourself. I did experience both of these sensations but they lasted seconds - and I hadn’t wet myself!
Thanks girls
My new Gp was absolutely fantastic and even gave me a hug as i left after a thorough examination. He has foned me today with the news thta ,y blood tests are fine and has organised X rays for my spine!
I am seeing my BCN and surgeon next week as well.
beardie - the contrast is really weirs - you feel like you have wet yourself. In all of my yrs in nursing the reaction to contrast I have seen were in one person and even then it was hard to say if they were just distressed at the ‘wetting oneself’’ feeling!
jaqui I am so sorry you were on your way home- how annoying!
I am keeping you all in my thoughts and prayers xxxx
I saw my gorgeous BCN and surgeon yesterday - i have a bone scan booked to take place in the next couple of weeks. So peace of mind is not far away - and by that i mean knowing what is going on!!! even if the results are cr*p and the rotten b*ggar is back at least then i will know exactly what I am dealing with and be more prepared to kick some hairy butt!
good news in wales for me!!!1 Scan clear - no need to worry and the fab Mr Breast surgeon rang me as soon as he had the results. Jacqui how are you - we need an update my lovely xxxxxxxx
and to ‘talk’ to people who get it.