Hi everyone- I have been on a few times this week, right little panic pants! my consultant has just called, I do have the dreaded CC- as expected! Going to treat myself to a Chanel bag next week... at least them I'll have one CC that I love!!!
I have done so much research, mainly through this forum actually, and the one bit of information that I am lacking is the only thing I really know about my cancer yet! All I have been told is that it is Squamous cell- what does this mean?
she also said something about it being differentiated but can't remember if she said highly or poorly- what does that mean?
I had my MRI and chest X-ray yesterday, so far I've been private (very quick I must say- dodgy smear on Friday ((years and years overdue)) then booked a colposcopy for Monday- where biopsy was taken... consultant was sure enough it was cancer to allow me to have the MRI yesterday before official diagnosis! Will now likely move to NHS.
if anyone can shed any light on squamous cell and what that actually means, that would be great-
I have said in my other posts (apologies for repeating if you've seen them) that I am extremely anxious that it is quite advanced due to my symptoms! I have been suffering for years with sciatica, and in the past 6 months, pins and needles in my hands and feet... more B12 (always been deficient) did seem to calm that, but of course, as of yesterday it's back with a vengeance!! I also, since this little worry feat began, been really suffering with pains in my back that won't go away, completely new pain that I've never felt before. It's very strange, like a ball of fire around my spine! I haven't had a smear for 11 years- just one of those things I set aside to book when less busy (IDIOT!!) but did have twins (naturally) 6 years ago, so am hoping it would have been picked up then??
Going completely off piste!! Really looking for advice and information on squamous cell- and what that means... don't want to google because it always terrifies me!!
Sorry that your diagnosis is now confirmed but at least now you are starting to build a picture of what you're dealing with x
I had highly differentiated squamous cell
There are two main types of cell in the cervix, squamous which is across the surface. And glandular which is higher up and around the os (entrance to womb). The most common cervical cancer is the squamous type and is (typically but not always) slow growing. This is why precancerous cells are called CIN1/2/3 (squamous cells) and CGIN (glandular cells). Cancer in glandular cells can be extra concerning due to the possibility of "skip" lesions which is where cancer cells can be growing inside the womb where they are not easily detected and visualised through something as relatively uninvasive (!!) as smear or colposcopy.
Highly differentiated - it was explained to me that this means that the cancer cells still look relatively like the cells they are supposed to be, when looked at under a microscope. Poorly differentiated cells look very different to a normal cervical cell and can be a sign of a more rapidly evolving and faster growing cancer. Moderately differentiated are somewhere in between. You sometimes hear this referred to as Grade 1, 2 and 3, where the lower the grade the more differentiated the cells are.
You could always call the cancer research, macmillan or jo's helpline for a better explanation than what I can give! But hope that gives some idea for now
Bloody scary isn't it! I'm only 34... just doesn't feel right!
Cant seem to feel anything other than negative- which I'm sure is normal!? It's a bit like having an outer body experience!! Certainly not looking forward to the next few months... just can't wait to be on the other side.
Hope you are doing ok- feels so nice to speak to people who actually understand what I'm feeling!
Aww I know, I'm 36. Im sure all of us here were certain at some point that it wouldn't happen to us. There are a few ladies here in their 20s who get it, and some in their 50s and 60s - cancer isnt picky!
Its normal to go through feeling negatively. I was just frozen with fear when I first got my diagnosis, I was sure I didn't have the strength of mind to take on the challenge. But somewhere along the way I just got pissed off with it and that gave me the fire in my belly to get on with what had to be done. You can see from my signature that I was very lucky that my tumour hadn't spread so I didnt need chemorads, I'm 12 weeks after having my surgery now and making some longterm positive changes in my lifestyle.
There is so much strength, courage and experience you can draw on from the inspirational ladies on this forum, you have come to the right place :-)
Thank you- as always! My word of the day is... scared! scared to find out my staging- scared it'll be advanced, scared I'll be past treatment- scared of treatment if it isn't- scared my children will grow up without me- scared of everything really!
I am sure that once I have a plan of action- the fear, although still there, will be fear met with a way forward. Hopefully an end goal of remission and back to some sense of a 'normal' life!?!
It is a feeling that you can't put into words- I don't know what to do with myself! Because I have a weird sensation in my back (and have done since I started to think this could be cancer... hoping that's just a stress/anxiety thing!!) it doesn't allow me even one second not to think about it!! To be fair, I'm sure that would be the case with or without the back ache! I am struggling to put on a brave face in front of my children, they don't know yet..: don't plan to say anything until I know all of the facts- but I can't stand to be around anyone! Just want to be on my own in my bedroom... which is probably the worst thing I can do! I haven't cried yet... think I'm still in shock- hasn't quite sunk in maybe, feels like my body has gone into some sort of protective state- constantly feel a bit weary like I'm not really here, just going through the motions of a day (does that make sense!?!)
I also smoke an electric cigarette, which I know I should stop... but feel I need it more than ever right now!!! That's making me feel lashings of guilt too!
Basically- as we have all been.... living in a nightmare be wish I would wake up and it's not really happening to me!!!
Feeling the fear- if I am lucky enough to be a low enough stage to have surgery- please tell me it's not as bad as my head is making out?
Whilst I don't have the same experiences as you, my health scare last year did trigger massive health anxiety to the point that I referred myself for counselling. My counsellor said it is dealing with uncertainty which is the cause/trigger and it is a common thread on here that once people have facts - a staging and a treatment plan, they feel calmer. Here are some things which helped me and may also help you with managing the anxiety; phoning the Jo's Trust helpline, phoning the MacMillan helpline; journaling my thoughts to get them out of my head, the Headspace app especially the section coping with cancer, setting aside one hour a day for worrying and keeping in my normal routine/keeping busy the rest of the day, having a rant on this forum, chocolate, going for a walk outside in the fresh air every day if possible, anything which feels normal. Your feelings are perfectly normal and natural and it is important to vent them and to be kind to yourself. I now find myself awaiting further tests this coming Friday and should be practising what I am preaching!!! The social distancing situation and lack of normal life is not helping anyone in your situation so it's important to look after yourself even more. Try to take things one step at a time - easier said than done I know. Remember you are in the expert hands of your medical team. If you have been assigned a clinical nurse specialist it may be worth calling them as I found my one lovely and supportive.
Great advice from 55 there i think she has covered all of the bases of ways to stay sane while you wait! It is so easily advised and hard to do though, I am now starting to feel worried again as my first post op check up is looming
I never had even a blood test before my diagnosis and had huge medical anxiety about the whole thing. What I would say is, it's do-able, and I would do it again 100x over if it meant I could be rid of cancer. 12 weeks in and im feeling pretty good! I have written quite a bit about my experience of the op so if that's your treatment plan then we can go into more detail nearer the time :-)
Thank you both... need so many positive vibes today! I've had a severe flare up of the pins and needles in my hands this evening, and now going up my forearms too. Made me feel so dizzy then I start to panic & started thinking- oh god- it's in my brain too! I know I am being ridiculous, just can't help it!! Was so calm yesterday, symptoms calmed down and had the best nights sleep! Today- I have been a nervous wreck! Can't stop thinking about it and the more I think about it- the more I feel my 'symptoms' and get into a right old state!!! Really not fun being me right now :(
Driving myself into a pit of gloom... adamant that I am stage 4!
Did everyone feel this way?
Next appointment is Tuesday evening- should know more then... don't know what to expect from it to be honest, it's all been so rushed!!
When i get extremely anxious I get pins and needles at the back of my head, really horrible feeling. You are in a state of high adrenaline at the moment, which is completely normal, but not that helpful. Your best bet is to try and bring those adrenal glands back under control, using deep, slow breathing exercises. This tricks your body into thinking your mind is calm, adrenaline release slows down, and you'll start to feel more at ease. Please do try and do some focussed breathing exercises and see if that helps.
I imagine your next appointment youll get the results from your MRI and PetCT. The MRI shows them what your insides look like and how the organs are arranged. The PetCT shows them how the various cells in the body are functioning. They put these two side by side to come up with an initial staging, this will be based on the size of your tumour on MRI and the distribution of tracer uptake on the PetCT. If you have no tracer uptake, or its localised to the cervix, and your tumour is less than 4cm, you'll most likely be offered radical hysterectomy and lymph node dissection, and your next chat will be a consultation with a surgeon. If the tracer is taken up in areas beyond the cervix, or your tumour is bigger than 4cm, then you'll most likely be offered chemorads, and you'll have a consultation with a radiologist to start planning that. I hope that gives you an idea of what to expect next, but do consider calling up a specialist nurse on macmillan or cancer research, they are very knowledgeable and so kind and understanding, they really helped me a lot.
But most of all, breathe deeply, and slowly! You've got this!
Thank you Feelingthefear- always here to listen to my gripes!
Far too much information... but I think I had wind!! Had some strange sensations in my tummy- then the pins and needles flared up... actually I just needed to let loose!!! Tummy pains got me in a spin I think. Comes over me like I'm going to pass out and I get into a complete panic, it's awful! feeling far more relaxed now, have taken your advice and am consciously slowing my breathing, which does really help!!
I think that every niggle I get will spiral me, always thinking the worst- such a stressful time- just want my staging and treatment done... want this to be a distant memory not my current.
I haven't had a pet scan yet- just a pelvic MRI and chest X-ray- they have the biopsy too... will they be able to give me my staging based on that? Or at least an idea?? I really hope so...
Going to call the doctor on Monday and see if he can up my anxiety pills (yes I'm this bad and have already had them prescribed!)
They are certainly helping- before them I was a complete state- couldn't stop shaking and convulsing it was awful!
my evening was spent reading Philleepa's past posts about her treatment- and have eased my mind so much if that's the route I take- I'm one of the neurotic ones who will think every side effect, something has gone terribly wrong... but reading such an honest post has been so helpful! Will likely try to do one for whatever treatment I have, think I will benefit from the release! I love this group- especially how some return years later to help us newbies!! It's so reassuring isn't it!
You have had great information on here to help with anxiety. I just wanted to add that I suffer terrible with pins and needles. It is usually worse when my B12 or vitamin D is low and lots of us on here seem to suffer with deficiency in one or the other. Vitamin D is not tested as standard on a full blood count, you need to request it. So it's very possible that your pins and needles is due to deficiency rather that cancer pressing on nerves. I was extremely deficient in vitamin D a couple of months ago and was put on a really high loading dose to help increase it quickly. My symptoms have improved a lot.
I am taking B12.. will add in some vitamin D too- didn't think of that! Really helpful. Scary when you know you have cancer, and no other details!! Mind starts playing all sorts of evil tricks on you doesn't it!
Have today been officially staged at 1b2 with grade 3 cells (poorly differentiated)
in complete shock as had absolutely told myself that I was a far later stage... mind sure is a powerful thing! I am extremely grateful, and know I'm lucky as it could have been a lot worse.
Now need to get my head around surgery- my life long biggest fear! Feeling very sorry for myself still, know I need to get a grip but that's certainly easier said than done!! Biggest wimp ever- so lots of emotions today! Grateful to have been staged so low- and devastated thinking I'll likely have surgery very soon.. complete mixed bag of emotions!! It's all been such a whirlwind thus far- just want to get off this ride if I'm honest!! Don't like it at all :(
I'm sorry you find yourself here but welcome to the club that no one wants to be a part of. Honestly, I know this may sound crazy but the stage you're at now was the worst part for me, it's the not knowing that drives you mental. Once you have a treatment plan in place and treatment starts it all goes by in a blur. You are a lot stronger than you think. Wishing you the very best xxxx
Hi Jeebers- Thank you for the reply. I have been staged after MRI at 1b2 grade 3 so poorly differentiated.
MDT on Monday- but my consultant has said he thinks it'll be a radical hysterectomy... which is terrifying!! It'll be my very first operation, and I'm so so anxious about it!! ive just looked at your signature and noticed you had that, followed by radio... have to be honest.. that's one of my worries that I'll have to go through both! My consultant has said that he can't see anything in my lymph nodes from the MRI-
Did you have to have bracy? Or just the other radio? Can I ask what stage you were? I have seen a few that have had to go on and do chemo/radio- is that because more is picked up when they operate?
I haven't had a PET scan... would that show in more detail for lymph nodes etc? I am in the Uk and so far have been private... have decided that if it is the surgery route, I will likely have that at Spire too- feel far more comfortable there (real hospital phobic!!) I have to think about my anxiety which is through the roof as it is!! Can't think of anything worse than patching myself up for it.. ready to go and then my surgery is pushed back! I know that may sound silly- but, well, you've been through it so probably understand where my head is at right now!! So worried about surgery- worried about panicking when I'm out to sleep, and then even more worried about recovery! I'm the worlds biggest wimp... one of those that passes out at a blood test!! Feeling very overwhelmed by it all and trying desperately to find some strength.
