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
I’d really not recommend google… it is ramping up your anxiety levels and can’t diagnose anything. It will always give worst case scenarios which doesn’t help.
My adenocarcinoma showed on my first mri because there was a mass to be seen, and I’d had a biopsy done, so it’s not true to say that adenocarcinoma doesn’t show on an mri. This is where you can potentially misinterpret what you’re reading on the internet.
There are many reasons for back pain that are not cancer as I’ve said before. And your anxiety may be making things worse because your mind is working overtime, and your body will be tensed and anxious.
I can read how worried you are, but multiple medical professionals are telling you there is no sign of advanced cervical cancer, even though you seem fixated on this being what is wrong with you. None of us can know if you have any cancer, far less advanced, but we can telly you what it’s like from our own experience. Personally, I trusted the experts and what they were telling me, but you don’t appear to believe your doctors in the private sector or the nhs. What would it take to reassure you? Are you intending paying for more scans or tests privately?
Sarah xx
In my case, I had a tumour measuring nearly 4cms which was visible to the naked eye on examination, so definitely able to be picked up on a scan! I had huge levels of bleeding and relentless pelvic pain but I was post menopausal so our situations are very different and can’t really be compared. I had no horrible discharge.
I can’t say I “knew my body” as I had no thought that I might have cancer. I suspected there would be a less sinister reason, like abnormal cells. That also meant that while I was waiting for test results I wasn’t spending my time worrying.
No doctor can do a biopsy on something which is not there. If they took a guess at where to take a biopsy from and found nothing, would you then worry that the biopsy had been taken from the wrong place? Biopsies are done when there is something which needs to be analysed to confirm or rule out cancer-it’s not something that’s done on healthy tissue. You didn’t have abnormal cells which are caused by hpv, and you had a negative hpv result-this virus causes almost all cases of cervical cancer.
I’m not aware of any internal procedures you could have done now that you haven’t already had. In the nhs, referrals for scans have strict criteria, and you’ve had clear scans so there would not be a reason to have more. They cannot find something if it’s not there.
I don’t know how it works in the private sector to pay for repeated scans, but I wouldn’t think it was ethical to have you go through repeated ct scans for example because of the radiation risk-even though it’s a small risk. Repeated mri scans are safe but costly in the private sector!
None of the clear scans and tests are reassuring you so far, so it seems you are having a lot of difficulty in accepting your good results.
I am of course sad for you living with this level of fear and anxiety-I choose not to dwell on the fact that I’ve been through cancer and recurrence as I’m just happy to be alive after what I’ve been through when I had a very low risk of survival. I want to enjoy my life, and I’m sorry that you are not able to do so.
Please get help for your anxiety and get your continued back pain investigated further-maybe if you can do that you will be able to move on with your life. It’s not healthy to be imagining you have cancer when it hasn’t been found on multiple tests and scans.
Sarah xx
Hi Ccbb5a619b
I’m sorry you’ve got bleeding to deal with-you mentioned at the start that you had some bleeding between periods but this sounds like this is more than just spotting. However, you can’t really compare yourself with others to look for answers as we are all so different.
I had very heavy bleeding, bright red, and a lot of pain, BUT I was post menopausal, so it was a very different situation.
It’s a difficult time of year to get appointments with the gp, but why don’t you give them a call today and see if you can get one arranged? I know it takes me a while to get appointments-I phoned a couple of weeks ago for one and can’t get seen till January 6th.
I’m not sure what the gp could do, to be honest, as you’ve had multiple appointments, investigations and clear scans, but it would be a chance to talk about your anxiety and your back pain and perhaps discuss your contraception?
The bleeding is worrying you, and I can understand that as your mind keeps connecting it to cancer, but maybe it really is due to your contraception? Nothing else has been found to explain your symptoms, so it might be as straightforward as needing to change your type of contraception.
I hope you’re able to relax enough to enjoy Christmas-try not to let all your worries ruin it for you.
Sarah xx
