Wondering if anyone had any advice of where to go next I’m at a loss…
I have had symptoms of advanced cervical cancer over the last few months, bleeding in between periods but I am on the mini pill been told this is normal breakthrough by gp, lower back pain for months, watery discharge no smell, tiredness ive had higher risk hpv in past but cleared it last few years I’ve seen numerous drs and had to go private for scans with multiple gyneacologists spending alot of money I’ve been to hospital and they don’t do anything
scans I’ve had are
smear negative hpv and cells
coloposcopy with endocervical brush where they swab slightly higher for cells (negative no bad cells) and no biopsy as nothing seen
2x pelvic mri with contrast normal
pelvic CT with contrast normal
hysteroscopy camera through cervix into womb - normal
I’ve had two ultrasound and transvaginal nothing seen
I feel i have advanced cervical cancer due to my symptoms but the dr won’t do anything due to my scans I know it’s silly with the scans I’ve had but I don’t feel right for months and im scared its higher up in endocervix and the one that isnt caught with smears and harder to detect.
im thinking of going to another gynaecologist and get a colposcopy and insist on a biopsy but its hard when i dont have a bad smear, im really worried about the back pain its stopping me from doing everyday things
i don't know what to do as i know my body and i don't feel right
Hi Ccbb5a619b and welcome to our group.
Your post certainly indicates you have a high level of anxiety about what might be happening, but I’d like to try and give you some reassurance if I can.
You've had a lot of investigations, with nothing untoward found, so I’m not sure what it would take to reassure you, but I’ll try! I’ve been through advanced cervical cancer myself, so that’s where my experience lies. These are the things I’m looking at in your situation-
You've had a negative smear and no abnormal cells-only a tiny proportion of cervical cancers are not caused by hpv, whereas 99% are hpv driven.
You’ve had a normal hysteroscopy and a normal CT scan and normal mri scans of your pelvis. If there were something big enough to be seen on a scan, it would have been spotted, no matter where in the cervical canal. Nothing has been found on two ultrasound scans.
Back pain can be a symptom of many things, not necessarily any kind of cancer.
Breakthrough bleeding can be normal while on contraception and doesn’t necessarily mean a serious issue.
In terms of advanced cervical cancer, it is likely there would be very obvious symptoms-for me it was very heavy bleeding and very bad pelvic pain. These symptoms didn’t come and go-they were constant. As soon as my gynaecologist checked my cervix, my tumour was visible to the naked eye, even before I had scans.
You can go private again if you wish, but you can’t insist on a biopsy if there is nothing there to biopsy. There needs to be something which the gynaecologist can take a biopsy of, but nothing has been seen or found so far.
An nhs doctor acts on national guidelines when there are symptoms present which need further investigating, but there would be nothing else to suggest potential cervical cancer when you’ve had so many clear scans of different types, have no active hpv or evidence of pre cancerous cervical cells.
Persistent back pain can be debilitating, so I wonder if you’ve had any investigations for this? Perhaps your anxiety is exacerbating your pain and you may need some further investigations to try and establish a cause for it.
Would you feel that you might have health anxiety? A gp could suggest help with that and maybe therapy to manage it.
I feel very sorry for you imagining that you have advanced cervical cancer, because I know what it’s like to have it, and because this must make life very difficult for you. I’m not sure what it would take to convince you that you don’t, but I really feel that you might benefit from getting help from your gp with your anxiety and asking for some further investigations about your back issue before spending more money in the private sector to repeat gynaecological tests which have already been confirmed clear.
Sarah xx
I’ve been part of this group for a few years now and as a Community Champion for the group, I try to make sure I reply to all the new members, and hopefully try to calm their fears.
In my time here, I’ve seen a number of posters believing they’ve had advanced cervical cancer on the basis of a couple of symptoms which have worried them, and unfortunately fixating on them.
The thing is, no testing has shown anything concerning and yet you are still worrying to the extent that it is taking its toll on your whole life. I do find that really sad for you.
I had adenocarcinoma. Yes, it can be harder to detect on a smear test because it can hide further up the cervical canal, but you’ve had multiple clear scans and cervical screening with endocervical swabbing. Adenocarcinoma is hpv driven, but you haven’t got evidence of active hpv either. You believe you have advanced cervical cancer, but what would lead you to think that you have an advanced cancer when no testing has identified any cancer at all?
As things stand at the moment, I’m not aware of any other tests you could have done-you’ve had a lot of testing so far, more than most ladies who are diagnosed with cervical cancer. This website might help you with some information about managing anxiety:
I’m not sure how you’ll be able to move on with your life without some support for your anxiety, so I’d really encourage you to seek that out.
Sarah xx
It was adenocarcinoma, seen by my doctor, seen on an mri, seen on a ct and confirmed by a biopsy as there was a visible lesion which was biopsied.
Sarah xx
Hi Ccbb5a619b
To try to settle your worries, I hope you feel it’s been beneficial seeing the private gynaecologist today. I appreciate you coming back with a positive update!
Once again, you’ve had reassurance that there was nothing there, and as I explained yesterday, they cannot do a biopsy if nothing is found-it wouldn’t be good practice.
Do you think you will now be able to believe after multiple doctors’ exams and clear scans that you don’t have advanced cervical cancer? I really hope so, as honestly it’s no way to live your life with this level of anxiety and fear.
You have this back pain which could warrant further investigation, but that is something you can speak to your gp about. My back pain is caused by osteoarthritis, not cancer, despite having had cancer twice! There can be many reasons for pain which are nothing to do with cancer.
I hope you can get some help to move on-reading posts in a cancer forum without a diagnosis might not be very helpful for you if it increases your anxiety.
Sarah xx
Hi Ccbb5a619b
The professionals who read the mri scans are looking at every detail in each scan-they are highly trained in their specialist field. They are looking for anything out of the ordinary which warrants further investigation, but they haven’t found anything.
If there were a mass in the area of your scan indicating advancer cervical it would have been picked up because it would be large enough to be picked up on an mri, and this information would not have been kept from you. Everything is normal, and most of us would be so relieved to have that kind of report, especially those of us who have been through advanced cervical cancer.
The scan is giving details about all your organs in this area, the lymph nodes, bones, tissues and is a very reliable form of imaging. What is it that would make you believe that the scan has missed advanced cancer?
Sarah xx
