New here - likely advanced

Hi Natalie ( ) and welcome to our group.

I can see that you’ve been responding to a lot of posts, and hoping to connect with other ladies, but I’ll keep my response to this reply to try to keep things straightforward and in one place. 

Your fear comes through in all your words, but my advice to you as someone who has dealt with this cancer for years is not to try to diagnose yourself, and not to make assumptions yet, but to look for what you know now and concentrate on facts, not thoughts.

You haven’t been diagnosed with anything yet, and you really don’t know what your results might be especially since you don’t appear to have had a scan of your pelvis. The smear test is looking for the hpv virus, and if it is present then then your cervical cells would be tested for any abnormalities. Even if you have hpv and have cervical cell abnormalities, this does not mean you have cancer, nor does it mean you would ever develop cancer. The whole point of a screening test is to identify cell changes, not diagnose cancer. 

Your cervix looking healthy is a positive sign, even though it doesn’t mean you don’t have cancer. You mentioned advanced cancer in another post, but cancer can often be seen with the naked eye on an examination of the cervix (my tumour was very obvious). In order to have a definitive diagnosis of cancer, you would need a biopsy, and scans of the area, such as a CT scan, pelvic mri or pet scan to be part of the process. 

I probably cannot change your thinking at this point now that you have convinced yourself of what is happening, but you say you have everything to live for, which you absolutely do! I hope you’ll come back and let us know what the next steps are and how you’re getting on. I’m so sorry you have got yourself into such a state mentally with all of this, as trying to have a positive outlook can really help. I think I’d be approaching my gp for some help in coping.

Sarah xx

Hello Sarah and thank you so much for your kind message.

you are absolutely right. I think the difficulty has been the pain which been gradually getting worse over the last 6 months starting from pain in shoulder to other places. Whilst I completely could be putting 2 and 2 together and making 98 I fear not but as you say, we just don’t know.

it really has been such a help learning of this supportive community and having pulled myself together somewhat this morning I am feeling a lot more positive and ready to take what ever this is on.

i had a private smear test Thursday so hoping I will hear the early part of next week.

once again thank you for your kind words and i do not for one minute want to take away from those who have been diagnosed who are going through an awful lot more than me. I am just so grateful to be able to connect.

natalie 

I’m always pleased to see that ladies join us and can express their fears and worries and share this as it does help to connect with others who understand the fear. 

But the smear test isn’t the be all and end all of testing. I always suggest to ladies that they report symptoms for investigation and not rely on the smear test for answers. Bleeding and pelvic pain were my 2 major symptoms, which is what I originally went to the doctor about. 

Anxiety can be a factor too-our body can manifest all sorts of things in a physical sense as we are living in such a high state of anxiety all the time. I was different really, in that I never expected to have a cancer diagnosis, so didn’t spend time worrying about it. But I did have those physical symptoms. I have since come to learn that no matter how much I worry, I can’t change anything-so it’s like sitting in a rocking chair and rocking back and forth-you are doing something but it’s not achieving anything. 

Doctors have told me over the years that they see a difference both in treatment and recovery from patients who have maintained a positive attitude so I have tried to do that as much as I can. I’ve had many other issues to contend with over the years, not cancer related, but involving other procedures and surgeries etc, so life has not been easy. But I haven’t given in. I sometimes do get upset but I don’t spend my time worrying about what I cannot change. I’d rather live my life in as best a way I can and enjoy every day. 

You’ve mentioned ongoing pain-has no reason been found for this at all? 

Sarah xx

Hi Sarah,

again it helps so much hearing others stories and I really appreciate it can’t be easy to share so thank you and I am sorry to hear everything you have had to contend with. Your strength gives me strength and hope and thank you so much for taking the time to reply.

i have woken up a lot more positive today although the pain keeps reminding me and have been for a lovely walk with the family this morning.

so it started back in the spring with a nagging pain in my right arm/shoulder. I felt like my breathing was occasionally off so I was sent for a chest X-ray which came back normal.

i had a few more strange episodes so went to a and e - again nothing found upon examination, bloods etc.

Come end of May I started to panic somewhat as pain felt worse. I went to see a private GP and was sent for a chest and neck CT - nothing found.

I then started experiencing bad headaches/dizziness and following that I alap started getting bad pains in lower back.

I had a further CT of abdomen which i know looked at ovaries and I believe pelvic lymph nodes - clear and I also had a brain MRI - clear (I am probably sounding like a complete hyperxondriac).

I have also recently had a trans vaginal ultra sound - nothing so smear test results is the last thing.

it really hadn't occurred to me to look back at my nhs health record until recently where I noticed last august when I went to see GP about heavy periods I was supposed to have a smear as well as ultra sound. For what ever reason I miss understood and didn’t have a smear. The blood loss however seemed to go back to normal and I have not had any unusual bleeding since.

Now I feel pain in my shoulders, tummy area, lower back, legs and now neck which is giving me very bad head aches. It worries me that pain keeps cropping up in new places including bones in my shoulders, knees and now my neck which is becoming worse.

the dr said if I had advanced cancer they would have expected it to have been picked up by now but I’m not sure we’d scanned those areas! The chest and neck CT was over a month ago now.

I am struggling to get past the fact I didn’t have a smear test when the drs notes said I was asked to. I am usually so hot on these things. I had a lot going on at the time so whether I forgot or thought as ultra sound was ok I didn’t need to. I am not sure!

My last smear was august 2021 - the usual 3 year check and was fine.

Whilst of course I have not been diagnosed the symptoms sound very similar to others with advanced cervical cancer albeit without the blood loss which I believe sone also don’t experience.

it has been very difficult at home looking after 2 young children and trying to share my fears with my family when so many tests have come back fine.

i hope this week brings a bit more clarity and again thank you from the bottom of my heart for listening xx

I don’t mean to minimise your worries at all-I can understand they are very valid. But you seem to have had a lot of tests which have come back without concerns or a diagnosis. I would see that as a positive thing!

Can you maybe define your understanding of “advanced cancer”? When I was diagnosed originally, it was defined as “locally advanced” which means my cancer had spread slightly from the cervix into the parametrium. Despite being locally advanced and having a tumour of nearly 4cms it was staged at 2b, so treatment was planned with curative intent. 

If you understand advanced cancer to mean cancer which has spread to other organs distant from the original site, then I would have expected this to show on scans you have had already. Metastatic cancer would show elsewhere- and cervical cancer has places it is most likely to go first-but you have had a normal abdominal Ct and a normal chest and neck scan. This would suggest there was no suspicion for example of enlarged lymphnodes. 

If your smear test comes back as no further action(i.e no evidence of the hpv virus) there will be no checking of your cervical cells. I’m not sure how this might make you feel? 

I do find it sad that you are thinking you have advanced cervical cancer when so far there is no evidence of cancer at all from multiple tests. Can I ask if you have any thoughts of what need to be done next for you to reassure you? 

Sarah xx

I guess I perhaps do sound slightly crazy all of a sudden suggesting I have cervical cancer and I really appreciate your input and I hope my writing on the forum hasn’t offended anyone who has been diagnosed.

As the pain is now around tummy button, lower back and the fact I had blood clotting last year. I guess I am putting 2 and 2 together.

i have pain in the bones of my right arm and leg and as I say now in my neck going up the back of my head. It feels as though something is progressing.

i have lost a little weight over the last month and have at times felt dizzy and experienced nausea. 

i guess the fact the ultra sound came back clear is a good sign. My chest and neck CT was a good month ago now so I guess I am thinking it could of spread within this time.

the bottom line is I am feeling weaker and weaker each day. The pain is enough now I am having to take pain killers every day and even that is not taking it away completely.

Xx

I don’t think you are crazy at all but I see you are in a high state of panic and anxiety which has caused you spiral out of control with your thoughts. I see that you have had another response to your post which contains very useful advice for you.  Please try and breathe (most important!) and maybe try and use some calming techniques to help you to help yourself.

For example, breathe deeply and concentrate on your breathing, try mindfulness-there are loads of free phone apps for this, listen to calming sounds-again there are lots of free apps for this on your phone. Concentrate on positive stories of recovery and do not Google as it cannot diagnose you.

Do not assume that we are all the same-we are individuals and each story is different. And please don’t be writing yourself off at this point when you don’t know what’s going on and have no diagnosis yet-putting 2 and 2 together and making 5 is honestly rarely helpful. 

If the smear test comes back with no evidence of anything being wrong, please push your doctor for answers to your symptoms.

Sarah xx

I have just phoned the dr to find out when I am to expect the smear test results and unlikely to be until the end of the week. Really feeling continual pain at the back of head and neck. Trying to rain positive. Trying to breathe  I can do this

Hi Natalie

At least it’s much quicker than an NHS screening result! I do think your anxiety is possibly having a huge effect on how you’re feeling physically-you sound as if you are so stressed and tense. This often manifests as head and neck pain. 

Remember too that the screening test is only a test for the hpv virus, and is not a cancer diagnostic test. If the hpv virus is not active, cervical cells won’t get any further testing-unless this is different with a private test. If the test shows hpv, the cells are tested further. 

When cervical cells are tested, they can be normal or show some abnormalities on a scale of 1-3, called CIN (cervical intraepithelial neoplasia). None of these stages of abnormal cells are cancer but sometimes they do need to be treated and they are removed in a short in-clinic procedure.

Keep breathing and keep thinking positively to help yourself cope with the waiting.

Sarah xx