Smear tests

Hi Colly my oncologist has advised that as the procedure has changed and the new procedure is that the sample is initially tested for strains of high risk HPV, we should most definitely continue to attend our cervical screening appointments. There is no reason following pelvic radiation why HPV could not be picked up in the new screening process and as we know, HPV is the main cause of cervical cancers.

She also said that due to the pelvic radiation, the old smear tests, where they just looked at the cervical cells, would produce a false result due to radiation damage.

So, if we were to have a HPV positive result after cervical screening, we would need to be checked out further in a different way rather than proceeding to look at the sample in more detail.

The clear advice is that we must all continue with the cervical screening.

My oncologist also confirmed that the blood test for ovarian cancer (the CA125 test) would not be affected by pelvic radiation and will produce a valid result.

My next cervical screening test is due next month and I will be asking for the smallest speculum. 

Bev 

Thanks for this Bev...it's rather disconcerting that we're being given contrasting advice on this. I'd like to know what the different way of checking is if HPV is found in the initial test so, given your oncologist's response, I will go back and ask more questions!

Hi Colly, I start my treatment for anal cancer tomorrow, 21/02/22 I got my blood test on Friday to check my DPD  before starting my treatment, when I was at the doctors getting the blood taken, I asked about my smear test as I had read that there might be issues getting it after having cemo/ radiotherapy,  treatment, I asked the nurse if she could do one now, she thankfully agreed and did the smear also, she did say that there is NHS backlogs in smear testing of 6 months, and 6 week wait for the results.

I was glad I asked another thing i can tick of the box.

The nurse also mentioned that all smears are now tested for HPV. 

Louise Edinburgh Scotland xxx

Best wishes for tomorrow Louise and well done for being aware enough to ask the question before rather than after your treatment - I wish I had!

UPDATE:- 

Hello all, just realised I hadn’t updated this as promised. I changed oncologists and the second onco confirmed I was HPV positive from my biopsy. This ties in with why I had CIN III cervical changes in 2003 (cells were final stage before turning to cancer) and then my SCC diagnosis last year. 

If only I had been made aware of this in 2003 and I could have had the HPV vaccination perhaps it could have helped me avoid this. I guess I’ll never know.  Although when I see my onco in 2 weeks I’m going to ask if I can have the HPV vaccination now privately. It’s probably a case of “too late” but I’m willing to do it anyway if they’ll let me.  But I was definitively told by both oncos that I would never need a smear again because of cell changes due to the radiation therapy you get inaccurate readings. 

Hopefully with this HPV vacc for all our children now it may eliminate this dreadful type of cancer… wouldn’t that be wonderful! I’ll check in again once I see my onco mid Sept and let you know what they say. 

best wishes to all

xx

Hi Prettypinkroses good to hear from you! My experience was very similar to yours, abnormal cervical cells of the cervix caused by HPV requiring removal by cryosurgery almost 30 years prior to my diagnosis of anal cancer, also caused by HPV.  As HPV can lie dormant in the system for decades it is likely that the anal cancer could have been caused the HPV that caused my initial cervical problems. Alternatively, the anal cancer could possibly have been caused by a later explore to HPV 16. 

I would query the advice of your Oncologists in that you will never need a smear test again. They are correct in that the 'old style' smear tests which examined the cervical cells will produce inaccurate results, but it is my understanding that the 'new style' smear tests are processed in a completely different way.   

My Oncologist advised that the procedure has changed and the new procedure is that the sample is initially tested for strains of high risk HPV,  which if found, would lead to the sample being analysed further. If they are not found, the sample is not tested any further. In our case, rather than then further analysing the sample in the way that used to happen in the 'old style' smear tests, we would need to be checked out further in a different way. 

Her clear advice was that I must continue with the cervical screening as it plays a vital part in checking for the presence of HPV. 

The HPV vaccination programme in our schools will save an awful lot of future generations contracting high risk HPV related cancers. It really is a Godsend.

Please let us know how you get on with the HPV vaccination.  I am taking AHCC (active hexose correlated compound) supplements which may offer a degree of  protection against HPV related issues. There is of course no guarantee that this will help but this supplement is said to boost your immune system in general  which is an added benefit.

Bev x

This is interesting as I had grade 3 dyskaratosus in 2018 and HPV positive. 
i had treatment then fell pregnant nor long after. I then had a smear 4 months after baby born in June 2019 which was negative. 
Fast forward to June 2021 when systems started such as anal pain. Finally referred for scans in December 2021 and found to be stage 4 anal cancer. SCC HPV16. 
i asked if it could be linked to previous cells and told absolutely not. 
mskes no sense to me 

Hi Ker25  I would imagine that what your Oncologist means is that the current cancer diagnosis is not related to the previous abnormal cells of the cervix in that those abnormal cervical cells  in themselves haven't triggered the current issues. However, whether the same HPV virus may have triggered both the abnormal cells in the cervix and is also responsible for the anal cancer is a different question.    Do you know what the strain of HPV was that triggered the abnormal cervical cells in 2018? I know we're not always told this but it should be on your notes.  Bev 

Hi bev, I’m not sure but I do have my notes so that’s a good point. I’ll take a look.

thank you x

Hello,

          thanks for all this. I feel really fobbed off by my oncologist. I have asked for a definite answer as to whether hpv caused my anal cancer and not had an answer at all. I have been literally shouted at for saying I have vaginal and anal stenosis. When I ask, what about smear tests ? they say they can use childrens instruments and for me not to worry because everything is perfectly normal down there, which it is not. My vagina is short, it does not go up to my cervix anymore, I know because I used to have a cap, and I can no longer feel the bits. She said, do I have any discharge ? I said no, so that was it, nothing else said. No one has ever inspected my vagina except by scan.

I am sad and its really coming home to me that I have no longer got the capacity to have intercourse, ever again, so if I try and find a new partner its just for cuddles. 

I am 2 years after treatment now I have been waiting 10 months to see genitourinary specialist because it hurts when I wee. I will make a separate post about this because I want to know if anyone had problems like mine.

Although I'm obviously glad to be alive, I feel like the 3 years late diagnosis, being fobbed off by my oncologist and surgeon. I dont feel like my personal treatment has been very good really. All the nurses and radiologists were truly wonderful and nice, but the top docs are untrustworthy and supercilious in my view. Probably they are overloaded and inured to the problems of individual cases but still ....