Smear tests

Hi Colly & welcome to our little corner of the Macmillan online community. I’m also really pleased for you that your treatment seems to have been a success. I totally agree in the fact that the nurse you’ve spoken to didn’t sound particularly helpful at all with your situation!! I don’t know how many nurses are at your GP’s surgery, plus I know how difficult face to face appointments are to come by these days, but I think to begin with I’d be requesting seeing a different professional, be that another nurse or maybe request that a GP does this procedure considering your background! Luckily my colorectal surgeon advised me to have a smear test before I entered into any kind of treatment (I had a local resection first followed by chemoradiotherapy) so that I wouldn’t be due one any time soon after my treatment had finished but a lady that I went through treatment with she had one about 2 years post treatment & also had real concerns as like yourself & me too she suffered quite severe stenosis. She saw a lovely nurse that performed a successful smear test using the smallest speculum & she said although a little uncomfortable it was nothing like the discomfort that she was expecting. You need someone sympathetic & patient to perform this procedure so that you feel as comfortable & relaxed as possible. I have a Mirena coil that will need removing very soon & I was told that if this is too uncomfortable considering the long-term effects of treatment then it can be done under anaesthetic & I recall someone here quite a while ago mentioning their Dr had told them the same about smear tests. I’m also aware that there’s conflicting advice out there about taking smear tests following pelvic radiotherapy but I’ll definitely be booking for one once my next one is due, I’m leaving nothing to chance. Hopefully someone that’s had a post-treatment smear already will see your post & be able to offer a little more reassurance. 

Nicola

Thanks very much for your reply and helpful advice, it's always good to know there are others who have gone through the same stuff! Yes, there is another nurse so I'll try to speak to her next time. Interesting to hear that your surgeon advised you to have a smear test in advance, I did think maybe it should be offered as standard practice given the potential side effects of the treatment. I will definitely raise it at my next check-up. I've also used the 'Ask the Expert' on the Jo's Trust charity web site to ask the same question so it'll be interesting to see what they say too. Hopefully, whatever happens, my next smear test will be my last!

Just as an aside, today I had my 3rd primary vaccine dose for those with weakened immune systems (having already had the 1st two doses + a booster). I wasn't aware I was due/entitled to have this until I got a text from my GP surgery so I thought I'd mention it here too.

Hi Colly I have been looking into this. It looks like most of Trusts in England are testing for strains of high risk HPV and if that’s negative they dont check the sample any further. If it’s positive the sample is tested further in the same way an old smear test would be. There’s no difference in the way the test is carried out. A speculum is used and a small brush is used to collect cells from the cervix in the same way.  In London they’re trialling ‘home testing’ kits with a long swab to insert into the vagina to collect cells. The swab is then sent off and tested in the same way as above.     My Oncologist said a smear test wouldn’t be accurate after the radiotherapy but I’m going to ask if the HPV test they now do first would be. I can’t see why it wouldn’t.  I’ve got an appointment next month so I will ask then and post in the group. Bev 

Hello, this is interesting as I’d just thought about this the other day. I had a negative smear just before all this started (so Oct 2020) and when I last saw my oncologist last November I am sure he he said I wouldn’t need a smear ever again because of the radiation treatment. I guess I’ll need to ask this question again as I’ve changed oncologists and am now at  The Royal Marsden. Especially important to me as I was diagnosed as CIN III severe dyskarosis (final stage before cervical cancer) in 2003 which would have continued on to be cervical cancer had they not caught it just in time. So, despite being 19 years on and fine, it’s something I need to be absolutely sure of!!! 

Interestingly I understand that cervical cancer is linked to anal cancer because of the HPV connection although I have always tested negative for HPV. If I had been told of this connection I would have been more vigilant so it’s sad they don’t make you aware of this. Although no one has been able to tell me why I have anal cancer, I suppose many of us will never know. 

I am due to see oncologist on 9 Feb so I’ll ask and see what they say

xx  

Good to hear other's thoughts on this. It's a shame the home test trials aren't further forward yet because it sounds like they would be easier to tolerate for lots of people. I think my surgeon did mention the potential link with HPV but I haven't had a smear test since it was changed to look for HPV first so don't know if it was ever present. If anal cancer is becoming more common then maybe a test to check for HPV front and back would be good in the future!

I 've had a response from the 'Ask the Expert' facility on the Jo's Trust charity website:

"Thank you for your question. Please be aware my response is based on the information provided and without access to your medical notes or the benefit of a personal examination.

Dear Carolyn, thank you for your question. You are correct we do not recommend cervical samples after pelvic radiotherapy as the cells are affected by the radiotherapy and can give an inaccurate result if taken. You will be invited for cervical samples via the call and recall screening system so need to speak to your GP to cease recall from the programme. I would not recommend a private home tests either. 

I hope this helps.

Best wishes,

Member of the Jo’s Cervical Cancer Trust Medical Panel."

I also had a check-up today and asked the same question. The consultant I saw didn't think a smear test would be helpful right now but said she'd check with Dr Falk - head of Clinical Oncology (radiotherapy) in Bristol - and I'll post his response here when I receive it.

Thanks for that Colly that’s a bit concerning as I understand most squamous cell anal cancers are caused by the high risk HPVs . At my biopsy HPV 16 was found. My doctors did not tell me this I had to ask if they had found HPV.  I had also had pre-cancerous cells on my cervix caused by HPV 20+ years previously so smear tests are important. At my appointment next month I will also ask as there should be some sort of way the presence of HPV could be checked for.  Bev 

Hello again - I've now had the oncologist's follow-up letter after my check up where I asked about smear tests post pelvic radiotherapy. She wrote:

"Having discussed this with Dr Falk, cervical cells often become dyskaryotic following radiotherapy and therefore we advise not to proceed with  cervical screening following treatment."

This is in line with other information/advice I've seen (once I'd found out what dyskaryotic meant!) and I've relayed it to my GP nurse so that I'll be taken off their recall list. I hope this is useful feedback but it would be interesting to hear if others are getting the same advice too.

Hi I had a smear just before my treatment in 2016 which was fine. Then routine follow up I was invited again didn’t have any problems normal gadget! Used and came back clear. 
I am now on 5 years and will carry on until told otherwise . 
hood this helps Amanda

Thanks Colly I have an appointment with my Oncologist this week so I will ask too and will let you know what the advice is. Bev