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Has anyone got any knowledge of cervical cancer and could maybe help me through a wobble

(10 Posts)
BoysMum1 Sun 23-Mar-14 00:43:49

I've had cervical cancer stage 2 late last year. Following my treatment my MRI scan showed no sign of the tumour so yaaay. I have to have a GA next week to take biopsies to check for cancer cells that can't be seen by the MRI.

So good news so far. But after a couple of months of being calm and feeling good I've suddenly focused on the fact the HPV doesn't go away. I have starting thinking about all the other cancers HPV can cause. I have a low immune system and makes me terrified I will develop another type.

I wondered if anyone had a knowledge of wether being a carrier of HPV having already had cervical cancer you have a greater chance of developing other HPV cancers.

At the moment the thought of ever having sex with my husband again fills me with fear. We've been together 23 years will have infected each other. I worry about him as well. Men are 4 times more likely to get HPV oral cancer than a woman.

rabbitstew Sun 23-Mar-14 22:03:47

I've had high risk HPV (confirmed with HPV tests), cervical cell changes and treatment for CIN3. Subsequent to the treatment, I've had several years of clear smear tests and a recent HPV test taken during my last smear detected no signs of HPV in my cervix, so clearly HPV can be sufficiently dealt with by the immune system, with the help of treatment where the immune system has been a bit off the ball on its own, that its DNA is no longer subsequently detectable in the cervical cells (in other words, the immune system can be woken up to the problem and deal with it so that it doesn't come back). In other words, it is not true that once you have the virus, you have it in detectable amounts forever - if that were true, a far higher percentage of women would test positive for high risk HPV than is currently the case. I think most peoples' immune systems, and that probably includes your dh's, clear the HPV virus so that it does not cause them any future problems (anywhere on their body) and they don't keep passing it on to anyone else.

For those people unlucky enough to have immune systems which do not clear the virus, even with treatment, I would guess your risk of any sort of HPV-related cancer is higher than other peoples', but still very low. The HPV virus which caused your cervical cancer favours the cervical cells, so the chances of it causing cancer elsewhere are much, much lower, as it's going to base itself in its favoured spot if it can! Whilst your treatment is still so recent, you will obviously, nevertheless, be feeling very frightened about this: I went through exactly the same thought processes when I had treatment for CIN3, which isn't even cancer, yet. All I can say is that several years of the worst not happening resulted in the worst fears receding, to the point that I could think of it more along the lines of it probably being more likely that I'd be in a car crash than that I'd get some rare form of cancer, but that didn't stop me from driving or keep me up at night worrying about having to get into a car, so why should the presence of HPV in my body be so much more frightening? Hopefully, over time, if all continues to go well with your recovery, you will also start to see it like that.

BoysMum1 Mon 24-Mar-14 15:02:42

Thank you rabbit that makes a lot of sense.
Neither my oncologist or gynaecologist are great at answering my questions. I'm just assuming my cancer was caused by HPV as most are but no one has actually told me I have it. I've always had regular smears but until the last one never had any issues.

greeneyedcat Mon 24-Mar-14 15:44:12

Hello boysmum Im in a similar situation to you, and like you I have periods of calm and periods of panic.

I had treatment for anal cancer last year and was also told it was likely caused by HPV. Following treatment I was given a full smear and pelvic examination under GA and no traces of HPV were found. I have so many unanswered questions, and everyone I ask gives a different answer. At the moment im feeling calm and assuming the different answers are because they just dont know.

I almost hoped my pelvic exam would show HPV because then they would have suggested a hysterectomy. I asked why I couldnt have one and was told if they take away everything that could become cancerous there would be little of me left.

I dont understand how I got anal cancer. Ive never had anal sex, infact I havent had a partner since my husband left when I was 31. Im now 48 and had cancer last year. That would suggest my HPV (if indeed ive got it) was dormant for 16 years and didnt show on any smear tests during that time.

The thought of the cancer coming back or popping up somewhere else is terrifying. I try to push it out of my mind as much as I can and monitor my body and how im feeling physically all the time. I wonder if I will think about cancer every day for the rest of my life.

Good luck with your biopsies next week, fingers crossed everything is clear for you. I know how frightening it is.

BoysMum1 Mon 24-Mar-14 16:17:35

I'm sorry your going through this as well greeneyedcat. It's horrible isn't it?. I've been in a totally monogamous relationship for 18 years, celibate for 6 years before that and a total of 5 sexual partners. I'm 53 now.
I am insisting on a radical hysterectomy when all my treatment is over. My gynaecologist has said the only benefit would be psychological but he will still do it. I had a slightly sore throat last week so convinced myself I must now have oral cancer. Stupid but that's how it makes me feel. I would hope at some point the fear must ease. I can't imagine feeling like this for the rest of my life.
Not wishing to make light of anyone else's illness. All cancers are horrendous but at least with other cancers if your lucky enough to be cured your not left with the lingering threat of HPV.

greeneyedcat Mon 24-Mar-14 16:42:46

It is horrible, ive felt so isolated. I dont know a single other person who's had what ive had and its hard to say 'anal cancer' out loud because people tend to think they've misheard and say 'Pardon?'

Like you ive had clear MRIs and im now on the treadmill of 3 monthly check ups for a year. Ive been told i'll have checkups for 5 years minimum, are you the same? I dont think I can insist on a hysterectomy as my cancer wasnt cervical/gynaecological. I had chemoradiation which has certainly left its mark, smear tests will now be under GA but I have been told if I remain sexually inactive I wont actually need another smear. I wasnt too impressed so theyve agreed to 3-yearly smears.

I darent google anything, ive had achy shins and convinced myself it had spread to my bones. How I took my health for granted before all this started!

shewhowines Mon 24-Mar-14 20:38:04

There is an article today, in the daily mail - I think it was, someone showed it to me - about shitakki sp? mushrooms and their powers against HPV.
I had cervical cancer last year, had a radical hysterectomy and fortunately it hadn't spread to the lymph nodes, so I didn't need chemo or radiotherapy. It hadn't crossed my mind to worry about other HPV cancers. You've got me worried now sad

BoysMum1 Tue 25-Mar-14 12:07:07

greeneyedcat that must be very hard for you. I do get embarrassed telling people my cancer is cervical. My gynaecologist did an article on cervical cancer for a local newspaper recently, even he made a comment about cervical cancer rates being higher in my area because women here have a higher number of sexual partners than the national average. I then thought anyone who read that would think i must have shagged a trillion men, and so what if I had, i still don't deserve cancer. I had chemo and radiotherapy plus brachytherapy which was brutal but having that gave me a 60% higher chance of beating the cancer completely.
I'm having 3 monthly checks for 2 years then 6 monthly checks for a further 5 years. I've been told once my treatment is over I won't have any more smears even though I'm in a relationship. Another reason for insisting on a hysterectomy.

shewhowines I'm so sorry to scare you. It hadn't even occurred to me up until lat week. Then I read an article about all the cancers HPV can cause. Must try and stay away from Dr Goggle. I think the chances of getting another HPV related cancer must be low though. Certainly all my checks so far are on the pelvic area. Nobody seems worried about what might be happening in other areas. It's just so hard not to worry but over time it must become easier to deal with.

shewhowines Wed 26-Mar-14 09:13:44

3/4 of women are supposed to carry the HPV virus. There is nothing to be embarrassed about.

The hysterectomy wasn't pleasant, but not as bad as I imagined it would be. You sound as if you have been through a lot. thanks

greeneyedcat Wed 26-Mar-14 16:32:58

Ouch boysmum at brachytherapy, I thought my side effects were brutal but I didn't have that. My radiotherapy was IMRT, supposedly it's more targeted and less damaging to the skin. I looked pretty wrecked by the time I'd finished and although hopefully cancer free my body will never be the same again. Maybe the chemo will have dealt with the HPV for both of us?

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