After getting the all clear from an MRI 6 weeks ago i went back to my consultant two weeks ago with a made up complaint if tummy pains as I really wanted a pet scan as in my opinion they tell much more then an MRI and I was lucky I did as it came back with 2 lymph nodes at the top of my lungs lighting up.
im booked in for a biopsy in the morning but my consultant said that if it's still the case it's palliative chemo and can't be cured.ive searched the internet for more info but can't find any so just wondering as any one had the same disgonosis and went down the route of immuno therapy or any other trials as the consultaBT said the chemo mix won't cure me.
I'm so sorry you are having to go through this and my fingers and toes and everything else are crossed for you that its turn out to just be swollen lympnodes and nothing else sinister.
I can't give you any advise but just wanted to let you know that I'm thinking about you and your not alone.
Plz keep us updated. Xx
How bloody scary is that! Am thinking about you this morning as you head in for that biopsy.
I truly hope that your 'lit up' higher lymph nodes are just inflamed because they are doing the work of being lymph nodes, and nothing more than that. Try not to look at 'what next' until you have the results of the biopsy, particularly as you (say you) haven't had any symptoms. PET scans can be be just too good sometimes, and picking something up on scan doesnt necessarily equate to your worst case scenario. It tells you there's something going on but not what it is.
If it turns out that the results confirm lung metastases - and you aren't there yet - (I'm also assuming that you are based in the U.K.) I can only suggest checking out the Cancer Research UK site and checking their search tools for recruitment criterion in current clinical trials. Immunotherapy drugs are increasingly being included in trials, but inclusion/exclusion criteria will be stated too. Check the trial 'centre' as well, sometimes the treatment can only be given in Manchester or London or something, so you'd need to be sure you could get there for each treatment cycle & check ups which could be time consuming & expensive. If you see a trial that might work, you could put that in front of your Consultant and ask to be proposed for recruitment to it. That still won't mean you are on the trial, but the trial centre team can consider your individual circumstances & perhaps even examine you/run some tests, alongside your existing team.
You could also ask to have access to the Stage 4/palliative section of this site. I'm sure there will be ladies here who have been through this, explored drug trial options, perhaps even been on them and who can offer really practical useful advise and psychological support strategies for dealing with this.
Finally, I'm selfishly thinking about my own circumstances in response to your post. I had a clear MRI in April, and although I have physical (including vaginal & cervical examination) check ups at the Oncology clinic every three months, my next MRI Scan isn't due until April 2018. I feel OK, but I had spread to my para aortic lymph node before initial treatment, so I do worry about spread to my lungs and elsewhere in my abdomen & pelvis. It's a rational fear given my initial diagnosis, but one I mostly manage to keep in check. I have huge confidence in my Oncology team who are based in a big Oncology Centre and they've promised to rescan earlier if there's any suspicious symptoms, so I have to trust that process but god it's hard when I see a post like this. I'm totally rooting for you on this.
A big virtual hug coming from me to you right now.
Thanks so much ladies for all the love, had tests done today but biopsy is rescheduled for tomorrow morning but I'll keep ye posted :-)
i dont come on this side very often but noticed your post when i logged in
i hope that the biopsys come back as nothing
but im a pallitive lady and im 10 months past the chemo mix there are a few of us on the living with advanced cancer forum that have been through the chemo mix or who are actually going through the chemo now so if it comes back as reccurrence check us out on that side we are happy to advise you on the treatment
my motto is never say never ive never been given the NED since being diagnosed in may 2015 but here i am 27 months later still leading a normal life
the chemo mix is good stuff
as for trials i asked that question before i went on the chemo mix and my consultant said if your happy to go on a trial go on one but have the chemo mix 1st then if it fails try the trial
its entirley your decision as to what to do but if it does come back as reccurrence pop onto the other side as we call it we are a fabulous bunch of ladies just as they are on the other forums and are happy to give you advice on whats next
take care and stay strong keep me posted
onwards and upwards
love michelle xx
l am so hoping this turns out to be something else for you , I am recurrent cervical cancer lady , recurrence to the ovary , so far I've been NED for allmost 2 years , when re diagnosed the 2 nd time I asked my oncologist about immunotherapy but he said he didn't know enough about it , I am rooting for you and praying for best case scenario .
i also selfishly am thinking about my own circumstances and totally agree how scary is that , a MRI scan earlier this year came back NED , I've had a few niggles but I have always reassured myself that the scan was NED , I've been told if it does come back i will be palliative . I also have to say it is hard seeing a post like this as it sets in the doubt ,
thinking of you
I hope everything went ok with your biopsy
Thinking of you xx
Ive moved over to the other side of the forum a got some great advice.
but just to give ye all an update i am still waiting on my biopsy results and have an appointment with for a second opinion tomorrow and for a third opinion next week!
i hope I haven't worried anyone as the type of cc I had was very rare and my tumour was very big and in lymph nodes so don't be reading my story and getting worried everyone i so different and the majority of people only come to this forum when something like this happen So stay positive my story still isn't a negative one and it's never going to be.
love laura xx
Thanks so much for the update Laura, I've been thinking about you a lot since you posted.
I'm glad you've found lots of advice and support from people who really will have valuable knowledge and experience to share. The most important thing in this equation right now is you. It's also good to know that a range of expert opinions are being sought to interpret the scans & biopsy results when they are in.
It's not your responsibility to 'look after' our feelings in here, but it's so thoughtful of you to try to do so. Concentrate on 'you' now as you navigate these new complexities.
A big virtual hug (and continued strength & positivity) from me to you, is winging it's way through the ones & zeros. x