Well had my 4mth check up last Friday after an MRI scan on the Monday. MDT meeting on Thurs & all happy that it is scar tissue where my tumour had been but after the MDT meeting Thurs the top Radiologist rang my Onco as he has found an area of concern on my liver & insisted a PET scan be done asap.
I am already booked in for a PET scan tomorrow at 10am. Obviously my head is slightly mashed & not slept much since Friday but trying to keep sane thoughts in my head. I know that poorly differentiated CC can travel through the blood to the liver so that’s 1 thing possible, I’m worrying too that as the surgeon cut right through my tumour during my hysterectomy last October that some microscopic cells have travelled that way.
Would I be having a PET scan if he didn’t think it was cancer, Oh Lordy, head is spinning!! Has anyone else had anything like this?
sorry no real words of wisdom for you, but ive followed your story from when I diagnosed as like you my tumour was cut right through too!! They thought mine was a polyp!! My gyny was so positive it wasn't anything sinister she didnt even biopsy it just cut it right off :x
ive been so terrified since then that microscopic cells were left to travel through my body...and yours was the only story I could find that was similar!! I had a hysterectomy and then chemoradio as microscopic amount was found in 1 node...even more reason to think it was travelling!!
Did you ask after if cuttimg through the tumour was going to make a reoccurance More likely?! Ive wanted to ask my oncologist but too scared of the answer!!:(
i really hope what ever it is showing on your liver is innocent...Theres another girl whos turned out to be nothing awful...can't remember her name now!! Sorry!!
I guess they have to check out anything they think looks different bcus of our history!! just the waiting again is so scary!!
Hopefully someone can come on and give you a bit of reassurance.
Thanks for replying. I did ask my Oncologist once if she thought I would have a poorer prognosis or recurrence because of the tumour being cut through and she replied that she couldn't say either way. Not exactly the answer I wanted but I will be asking again if this turns out to be not good, did the tumour being cut impact on the situation.
How are you now after treatment? Any lasting effects?
Yeah not the greatest answer off them...I suppose they don't really know!! Mine said it's very rare that they cut through tumours so i think they don't have much to compare it too?! I'm so disheartened by it all as I had 22 months of being told I had a cyst on my cervix then them just cutting through it without knowing what it was!! what type was your cancer? i can't believe they didn't know it was there before they did the hysterectomy?!
I'm ok have bladder issues in the way of I never regained any feeeling so have to tell myself to go to the loo..but it's not a big deal and consider myself lucky to not be over sensitive which seems to happen to some of the other ladies!! Still get tired easy but back at work and going to the gym running around after a busy household!!
How do you feel? you went through so much with all your treatment?! Do you have any lasting side effects?
I had a "something"show up on my liver too. I too was worried sick. My oncologist said not to worry because when CC wanders off from the cervix it generally doesn't go to the liver first. It's more likely to go to closer organs, including the lungs. She ordered a PET scan for me because I was worried sick and couldn't be reassured. My pal, who is a doctor of radiology, said that the problem with the new super duper technology is that every little tiny thing can now be seen so they feel obliged to explore every last little speck, most of which are harmless. My little something turned out to be nothing, but I was sick with nerves for the week before.
Good luck with your PET scan and fingers crossed nothing's going on.
Thank you so much for replying. You have given me some sanity as I was going mad in my own head.
I would rather they didn't say and scanned before mentioning as it is such a big thing that I would rather know the facts not 'could be's'.
My oncologist didn't seem surprised that there was an area in relation to it being the liver as she said it can travel there aswell as the lungs. I always assumed bladder & bowel.
I will keep your thoughts in my mind & focus on getting thru the next 10 days for the result.
I am a 1b1 lady with poorly differentiated tumour and lymph node involvement in 5 nodes. I also had a hysterectomy and chemo rads 2 years ago now. I have recently had some pain just under my rib cage and mentioned it when I had my last check a couple of weeks back. I was examined but they didn't seem very interested and thought I might have strained myself. So no scan and possibly ignorance is bliss. The pain comes and goes, but doesn't seem to hinder me. I keep thinking that with all the chemo rads on top of the surgery that it must have knocked off any rogue cells. I am hoping so much that your PET comes back as nothing sinister, but understand what you are going through. Keep telling yourself that there is no point imagining the worst as nothing has yet happened. Stay positive Flo, I am rooting for you so much. Big hugs XX
I had something show up on my liver a year after surgery which my oncologist wanted investigated further, just in case. It scared the wits out of me but turned out to be nothing. Livers seem to have a habit of doing this, they just grow odd little bits that go away again. My husband has one right now and his doctors have said they aren't worried about it. They will take another look in a year to see if it's got any bigger.
With regard to this conversation about cutting through a tumour; does anyone know how that might be different from having a LLETZ without clear margins?
I’ve been officially off the site for a while but I saw your post and had to comment. At my 1 year post hysterectomy MRI it picked up something in my liver which was ‘highly suspicious of metastasis’. An ultrasound seemed to confirm this and I was referred for palliative chemo. Luckily my chemo doctor requested a liver biopsy before starting and to cut a long story short, 2 biopsies and a CT/PET scan later, the tumours turned out to be benign adenomas. So keep the faith, there is a very good chance it’s nothing to worry about, but I do know how worrying this is. My adenomas appeared in that first year, really weird and unusual which is why it caused such panic but they were harmless. The liver is a really weird, lumpy thing. I’m now 2 and a half years past that, and will be 4 years clear in January. Fingers crossed all is fine, it is very likely to be xx
I haven't had any pain as such but felt unwell for a few weeks. Bad back around my ribcage but I have put that down to doing too much etc.
I was taken aback when my Oncologist said they were concerned about my Liver & didn't ask half as many questions as I normally do, I always ask to see my scans but this time ot threw me & I just sat there like a lemon!! It's the waiting I hate...
I hope your pain & discomfort subsides, I would go back if you are happy about your pain and ask to be looked at again. my Onco has been brilliant with me & always put my mind at rest but unfortunately this time she herself admitted she can't reassure me.
Take care & keep me updated
Flo xx
Hey Ali77,
Thanks for posting & telling me about your experience. I have taken on board your story & keeping it forefront in my mind for the next 9 days.
I had my PET scan yeaterday and was chatting to the nurse who informed me when I asked that it cost £2k for the scan & £500 for the injection & that you had to jump through hoops to get a scan referral, this just makes me think the worst as why would they spend that much money if they weren't a decent % sure it's spread? You watch I'll go next week & it will all be nothing & I will have a great head of grey hair & huge bags under my eyes for nothing.
Hope you are well & good luck on your 4 years clear!!
Hi designer flo I have " something" in my lung which I had a ct scan on Monday. I also have dodgy liver function tests and increasing pain in my bones. You can see where this is going. I'm playing with Is it better to have bone, lung or liver mets? I am over being worried. It's been 20 long months of treatment with a brief respite at thd end of 2015. I'm still receiving Avastin until March. I am not worried What will be will be. I am lucky as my kids are mostly grown and I am older than most on this site. I think part of me is just too lazy to worry. Don't get me wrong I am really enjoying my life back at work, spending the superannuation on clothes, shoes and going out. It will probably turn out to be nothing and I will have the worry of an impoverished old age. Not a biggy, lease don't worry it may be nothing at all Jayne
I understand where you are coming from, I don't think my fear is of if it is there, but the not knowing now & being helpless in my own control over how much I know & how much they know & don't share. I faced my diagnosis last time head on & will do that again if needs be.
My kids are grown too, well 19, 23 & 27, not little bit still my babies. I am concerned for my hubby as he is quiet & subdued, he feels helpless and I am I glad it is me facing this than me having to watch him go through it, that I don't think I could bear.
I hope the "something" on your lung turns out to be nothing bad & keep me updated on your results. Mine are due 25th Nov which ironically is my year Anniversary from my first CC diagnosis......
