VACO

Vulval Cancer – Pre-Cancerous April Awareness 2009

VACO would like to thank Shewee once again for their very generous donation, which will once again help fund our April Awareness month in 2009.

Please take a look at the excellent progress made by Shewee  last year. Thanks to Sam at Shewee this wonderful little gadget is now available on the NHS. Please see the information to help you order one from your GP or whilst you are in the hospital which is presently on our home page at http://www.vaco.co.uk/vaco.htm or visit www.shewee.com for more information.

We at VACO have decided to take a stand this year in our commitment to raising awareness of Vulval Cancer alongside the many other vulval diseases and disorders which in turn also cause Ladies to undergo treatment and surgery. No vulval surgery or treatment is easy to undergo, it continues to have a devastating affect on Ladies lives and is responsible for  physical and psychological trauma it causes Ladies, which is sadly still not being addressed by health professionals across the UK and also Internationally.

If caught early vulval cancer has a good survival rate and  the earlier pre-cancerous conditions are diagnosed the less invasive the treatment  will be, often with no scarring or long term after effects.

Too many members of the public, including health professionals, are unaware of cancerous and non-cancerous vulval conditions and this ignorance can lead to delayed diagnosis and subsequently far more extensive surgery and treatments with devastating effects on the patients concerned and considerable unnecessary cost to the NHS.  If a patient presented with a sore that remained unhealed  on any other part of the body, investigations as to the cause would be undertaken immediately to establish a precise diagnosis, whether it is malignant or benign, so that the correct treatment can be given. 

We at VACO fail to understand why, so often, this is not always the case for the vulva or other genital parts.  It seems ludicrous that the heath professionals are not prepared to address the issues because they are “embarrassing”.  By not being open and honest in their dealings with vulval diseases the Government and the NHS are condoning the stigma and prejudice shown to patients with these conditions.

We strongly believe in the importance of promoting Ladies to do a simple VSE (Vulva Self Examination)  which helps Ladies to play an important role in their own well being and help them to recognise any changes early, thus helping to prevent invasive surgery or treatment and we will continue to our campaign in raising this important issue with Ladies. This can easily be incorporated with routine cervical screening and would be extremely cost effective as early diagnosis leads to far less invasive, and costly, treatment being required.

We are asking for your support in helping to raise the awareness once again this year which can and will help educate Ladies about this part of their bodies which a lot of people still attach a stigma attached to which societies ignorance to these diseases have played a huge part in.

You can download a VSE off the website at http://www.vaco.co.uk/vacofrontpage/VACO VSE April 2008.pdf if you do not have access to print the leaflets off please email me with your details which will be kept private and be destroyed as soon as your leaflets have been posted. You can email me at vacouk@yahoo.com and your leaflets will be sent out to you as soon as possible. If you do request leaflets via the email address please remember to order enough for your family and friends, and please do pass them around which will help us to make Ladies aware all over the world. I am also happy to post the VSE leaflets to any country in the world.

We do not wish to scare Ladies, but as always make you aware!  The rarity of the condition makes it more important that all concerned know of its existence so that help can be sought, and given, sooner rather than later and that ladies no longer have to undergo radical surgery because their ignorance, or the ignorance of the medical profession, has led to years of unnecessary delay.

We have now added a new Biopsy Aftercare leaflet to the website earlier this year to help, which has some very simple practical tips to help your recovery to be as pain free as possible. This leaflet can also be downloaded from this website at http://www.vaco.co.uk/biopsyaftercareinformation.htm  please have a look at this little booklet and if you know any Lady who is due to have a vulval biopsy done or has just had one done, please pass this information on to her as this will help her through the biopsy and also in her recovery.

 I was approached by a journalist earlier this year on behalf of Yours magazine, regarding the article which had just been published in relation to HPV and genital cancers. Although my cancer was not HPV related the journalist was interested in my comments on this article as a vulval cancer patient which, I have been free of for 8 years this month. My own views on HPV are based on nearly 8 years experience supporting Ladies with HPV and the research they have done along with my own research of the virus during this time.

I was saddened when I read the article which did made me feel quite angry. My first thoughts on reading this were, “If Ladies were apprehensive about visiting their GP with a vulval problem now this article would certainly not make this any easier, in fact it may well have a huge impact on adding more stigma to any problems they may have with their vulva in the future and prevent them from seeking medical advice on any problem they may have”.

My thought moved on to the Author’s of the report which can be read in full at http://news.bbc.co.uk/1/hi/health/7868979.stm and if had they considered the full impact such an article would have on Ladies patients diagnosed with one of the rare genital cancers.

I also note the authors have not named the other cancers which HPV has been linked too! However, they have said the disease - cancer can be caused by other factors too.

One cannot help but read this and feel a sense of isolation and stigma once again arising with the rare cancer types especially genital cancers vulval and penile, which are both mentioned along with anal cancer which again is a rare cancer type which also raises the issues of a stigma with this cancer type too. It should be also noted that many vulval diseases are not related to HPV or are sexually transmitted diseases and are just as random as any other disease.

There is some excellent information on the page for HPV on the website which is easily accessible by the following link 

http://www.vaco.co.uk/hpv.htm 

 All of the Ladies who are being supported by VACO at this time were as delighted as I was, when Yours magazine published the article as it has to be one of the best written articles which has been written on a patients experience of vulval cancer. 

Our sincere thanks go to Carole Richardson the journalist who wrote this article with the greatest respect and sensitivity towards Ladies who have had this disease and Ladies who are still battling the disease and are having to cope with the silence and stigma this disease brings.

You can read the article on the following link: http://www.yours.co.uk/Yours-Magazine-News/Vulval-cancer---Dont-die-of-shame/ after which I am sure you will agree Carole really has represented all Ladies who have battled this devastating disease with the greatest respect.

Our Thanks also go to the Editor at Yours magazine for addressing this health issue in their magazine and printing the facts for Ladies to learn about. The response from the magazine article has been ongoing from the day it was published. I am still getting enquiries for VSE leaflets (Vulva Self Examination) to be sent out to Ladies. I think one of the most important things to come from this article was the response from many of the more mature Ladies who are willing to learn how to do this simple examination and concerns have been mentioned by so many about not knowing this cancer type existed, let alone not being taught how to do this simple self exam to be sure if they do present with any problem it should be picked up early and less invasive surgery would be required.

The DOH still do not recognise the importance of this simple check being done and each time I have written to them have specifically responded stating there is no screening for vulval cancer and once again I will be challenging them again this year to seriously think about this as many health websites do in fact state that Ladies are given a VSE when they go for their smear test?

Something 99% of the Ladies I have supported with this disease would strongly disagree with. Their response is one of, “given this is a rare cancer it is not something they feel will be beneficial to Ladies and could in fact scare them as opposed to making them aware”  I strongly dispute this response along with all the other Ladies.

Your support is important to us to help educate Ladies all over the world about how to do this simple exam and how easy it is to get to know what is normal for you so any changes will be picked up early by you and you can can then seek medical attention

Please remember, not all vulval problems will be cancer, in fact the chances of them not being vulval cancer is as high as 95%

Please try to do your vulva exam as regular as you do your breast exam, and if you are due a smear take advantage of this situation and ask the nurse to do a vulva examination for you. It will only take a few minutes for her to do this and this will then give you the confidence to continue to do your own on  a regular basis.

Awareness Saves Lives!!!

Please, Pass it on...

www.vaco.co.uk