immunsupressed and cancer

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Post Reply
Jessica
Posts: 53
Joined: Wed Jul 06, 2011 6:02 am
Location: North East England

immunsupressed and cancer

Post by Jessica »

Hi, My daughter had her transplant in 2004 she is now 19 years of age.

I just wondered if young girls that are immusuppressed are tested for cervical cancer and breast cancer earlier then normal. As she is only 19yrs they dont usually carry out a smear test until they are 25yrs and im not sure about breast screening.

Just a thought came to me about early cancer detection and wondered am i just over concerning myself or sensible. Her next clinic app isnt for a while so thought Id ask you guys.

Thanks for any replies
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: immunsupressed and cancer

Post by AmandaClare »

It's very sensible to think about this. I know a tx patient who had successful treatment for cervical cancer.

I don't think there's a standard approach to increasing screening for immunosuppressed patients. I know some women get yearly smear tests rather than the 3 years, and one nephrologist's letter to my GP stated that I should have early access to the breast cancer screening programme. But that didn't happen and personally I've never been offered anything more than the norm. So you may need to push for anything extra for your daughter.

Did your daughter get the cervical cancer vaccine they introduced a few years back? If not, is it worth paying for it now?

BTW, are other tx patients getting dermatology appointments to check for skin cancers? These were standard at the Royal London but they're reducing them to every 2 years, in what I strongly suspect is a cost-saving measure. They don't seem to happen at the Royal Free, where I am now.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Thelma
Posts: 446
Joined: Wed Feb 23, 2011 8:51 pm

Re: immunsupressed and cancer

Post by Thelma »

From what I understand on a parenting/pregnancy forum I use, it's actually incredibly difficult to get a smear test if you're under 25. I have friends with worrying symptoms who have had to pay for private smears because their GP wouldn't let them have one.

I would suggest getting your daughter to bring it up with either her consultant or the GP (whichever she sees soonest) and take it from there.
Transplanted 31st July 2012 - Vasculitis survivor
Jessica
Posts: 53
Joined: Wed Jul 06, 2011 6:02 am
Location: North East England

Re: immunsupressed and cancer

Post by Jessica »

Thanks very much for your replies and its given me something to think about.

Yes she had the cervical cancer vaccine - I had forgotton about that. She is also under a gynecologist and I reckon he would do a smear test if we asked. Also good idea about the dermatologist I will get on to it.

Guess we dont get anything if we dont ask. I must say her GP is actually very good and have always been very helpful and supportive.

Thanks again for your replies
Jess
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: immunsupressed and cancer

Post by AmandaClare »

I had my smear test on Thursday (yuk) and the nurse was sure I should be having them every year.

She's the first nurse in 20-odd years who seemed to know this. From what she said I think it's a case of someone telling the lab you're on immunosuppressants, so they know to schedule the next one in a year's time.

It may be different for younger women who've had the HPV vaccine, though.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: immunsupressed and cancer

Post by Thumps »

I've never heard that advice before - anyone else? Have your nephs ever mentioned it?
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Re: immunsupressed and cancer

Post by amanda in CA »

I used to get a smear every year in the UK. I asked my neph the question and he agreed that I should.
Andy
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand

Re: immunsupressed and cancer

Post by Andy »

When I was in the UK, I had a smear test every year from age of 21 (I lived in Wales, so that was the age in Wales for all females). Now in NZ they have also suggested that I remain to have a smear test each year.
I would definately recommend getting the smear test done yearly- if your GP won't do it, then maybe get your tx team to write to them to advise that this is best practice.

I have also seen a dermatology nurse specialist since being here in NZ, and I would recommend ensuring you are "up" on all the lumps and bumps on your body and any changes in them.

And again ensuring that we are checking our breasts, this is probably good advice for anyone, of any age or sex.

Its important to know our own bodies- the smear test is the only one we cannot check ourselves regularly.
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

www.lltgl.org.uk
dkjane
Posts: 309
Joined: Fri Dec 08, 2006 8:20 pm
Location: USA

Re: immunsupressed and cancer

Post by dkjane »

I was not suppose to start the smears until I was 25y(EU).
Came to US as 25 1/2y and guess what, I tested positive for pre-cancer cells and had surgery. It would have been cancer in 1 year, I was told. MY kidney failure did not happen until years later. In the US they recommend smears when a girl is sexually active.
I would say 25y is a little late to start..better 21y as one mentioned.
I have smears yearly and the transplant team are not worried.

I was surprised the other day, when I went to my dermatologist to be checked for skin cancer.
Fair skin, blue eyes and immunesuppressed ....he informed me, that he did not expect to find skin cancer on me..I have very well healing skin!????
I am going yearly, anyway. I have been a bit nervous after the transplant and getting skin cancer, as live in a sunny state.

Good luck, Jane
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: immunsupressed and cancer

Post by AmandaClare »

Scary stuff, Jane, glad they got it in time.

I'm sure when I was young we were told to go for the first smear test when we became sexually active. But now in the UK you get called at 25. There's an explanation of why here but I know there's been a lot of fuss since Jade Goody died.
http://www.cancerscreening.nhs.uk/cervi ... l#eligible
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

Re: immunsupressed and cancer

Post by amanda in CA »

I too was under 25 when I tested positive for pre-cancer cells, pre dialysis, pre transplant. Not sure if having had the vaccination would change screening protocol. Guess it depends on how effective it is
dkjane
Posts: 309
Joined: Fri Dec 08, 2006 8:20 pm
Location: USA

Re: immunsupressed and cancer

Post by dkjane »

Andy,
How are Christchurch doing? Have they rebuild a lot of damaged buildings?
You have no regrets about moving to NZ?

I visited NZ a few years back...just fell in love with that country!
Jane
Andy
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand

Re: immunsupressed and cancer

Post by Andy »

Hi Jane,

NZ is going awesome. Love being in Christchurch, the people here are some of the toughest most resilent I have ever come accross. There is so much demolition going on, over 60% of the buildings in the CBD are being demolished. Even I have noticed a big difference in the time that I have been here. They have saved many buildings. Went for a drive the other day around the eastern suburbs, and houses are totally ruined, people still have to use portaloos, and boil their waters.

No regrets about moving, best thing I have ever done. I miss my friends and my family. The nephro care I reiceve here is 2nd to none and I have made some friends :-)

(sorry to hijack the thread :-D )
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

www.lltgl.org.uk
jenjen
Posts: 1535
Joined: Thu Jul 28, 2005 12:28 pm
Location: Leicester

Re: immunsupressed and cancer

Post by jenjen »

Just to add to the voices about getting yearly smear tests after transplant - Mine detected pre-cancerous cervical changes, which i have had removed.
I was told that most pre-cancerous changes go back to normal but often not in transplanted patients. Of course, they said this could be nothing to do with the immunos and might have happened anyway, but they did say immunosuppressed women are at higher risk of any pre-cancerous changes going on to actually be cancer.

jen
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: immunsupressed and cancer

Post by MandyV »

Yes it is worth getting everything possible checked - I go to the dermatologist as and when and recently had a small 'spot' removed 'just in case' though it did not have the normal suspicious characteristics - and it was a melanoma. I am high risk in any case - fair skin, grew up in Africa, family history but those on MMF are also increased risk and not worth ignoring anything, as a tx patient the dermatologists should be super vigilent .... Luckily I got it in time before it became malignant so am very thankful that I asked the question and my dermatologist is risk averse ....
Post Reply