Pagets Disease diagnosed 2001 – Unsuccessful laser 2001 -
Two surgeries 2002/2003 for Partial Vulvectomy - Reoccurrence 2006 – Photo Dynamic Therapy 2008
I was married in 1972 and have three amazing children who are my proudest achievements and two wonderful grandsons who light up my life.
In 2001 I was diagnosed with Paget’s Disease of the Vulva which is cancer stage 0 (pre-cancerous). The first operation I had used LASER and caused no end of damage, the consequences of which, I still live with daily. Over 2002/2003 this was followed by two surgeries to perform a partial vulvectomy, during which the outer parts of the clitoris were also removed but the underlying nerves etc were left intact. Part of this surgery was also to remove the “agonisingly painful” scar tissue caused by the lasering.
When I found I had a reoccurrence of the Paget’s in 2006, I was keen to avoid more surgery and more specifically, more nerve damage and consequent nerve pain. I read in the Daily Mail about Photodynamic Therapy and it seemed an ideal treatment for this condition.
The following is a quote from the Consultant Oncologist who is now responsible for my treatment, for those who wish to know a little more about the workings of PDT:-
"The three fundamental elements of PDT are oxygen, a photosensitiser, and visible light. The photosensitiser may be applied topically or occasionally given systemically. It is selectively taken up by the tumor and is activated by the light at a wave length of 630 nm. It then interacts with molecular oxygen to produce an excited state-reactive singlet oxygen. This moity is highly cytotoxic and leads to the destruction of tumour cells. PDT is a developing technique which can produce total tumour resolution, while sparing normal tissue. It is there a minimally invasive procedure with subsequent rapid normal tissue healing and excellent cosmetic results.
http://www.christie.nhs.uk/patients/booklets/text/pdt
I would be lying if I said that Paget’s Disease hasn’t changed the expectations I had for this period in my life. Having had children quite young, this was meant to be “our time” to travel and do interesting and exciting things and the Paget’s, or possibly the delays and at times, total incompetence of the NHS, have made this nigh on impossible. The nerve pain, which should and could have been treated as soon as it became apparent, can be quite over-whelming and means that everything has to be thought through, leaving little room for spontaneity and spur of the moment decisions. Also, as I have been left unable to work, there are huge financial implications!!
For those newly diagnosed, one of the big questions will be about the effects on your sex life and, unfortunately not many health professionals will have taken time to address this with you. We did manage to resume our sex life fairly quickly and in a way, it is much more precious and appreciated than it was previously but it cannot be as spontaneous or easy-going as it used to be. The majority of women I have been in contact with do get back their sex lives, with varying degrees of physical and psychological trauma, and most even get back to wearing the ever important skinny jeans!
With the benefit of hindsight I should never have let the first consultant perform the laser treatment. I had grave misgivings and still kick myself for not acting on them. In fairness though, information about choices for vulva clinics and specialists was, and possibly still is, hard to come by though VACO is making inroads in the right direction.
I should also have been more insistent on getting a referral to a Pain Clinic specializing, if possible, in nerve damage. Even after all these years I am still working on that one and going nowhere fast!! From my understanding now, if the pain had been taken seriously at an earlier stage there would have been a better chance of successful treatment, so if you are left with severe ongoing pain after surgery/treatment don’t let it be dismissed and ignored. You will probably need to be very persistent but it will be worth it in the end.
I have written my experience in diary form and hope that others can learn from my mistakes and will be pleased for me, that I eventually found myself in the right place at the right time, and am happy and confident and feel that I am in safe hands with the PDT team.
1997 – 2000 Developed soreness to vulva area over a long period. Irregular but seemed to be linked to periods. Eventually I was sore each month and then permanently sore and it was restricting my life. The pain was similar to a mouth ulcer and was about.the size of a 5p piece. The affected area was pink and smooth looking and did not itch as some doctors insist it did.
Sept 2000 - Seen by GP who was pretty off-hand and unpleasant but said that she thought it may be some kind of eczema. Luckily she did at least decide to refer me, though she was certain there was nothing “suspicious” about it at all and left me feeling that I had definitely wasted her valuable time.
Nov 2000 - Seen by local Gynaecologist. He prescribed steroid cream. Initially improved but came back much more severely when cream stopped. He also repeated that it didn’t look “remotely malignant”.
Jan 2001 - Biopsy taken by Gynae. Results “mislaid” until I chased them up in March. I had been hoping that no news was good news but fortunately some instinct led me to chase up the result.
April 2002 – Saw Gynae again, this time in colposcopy clinic. He used acetic acid which was shockingly painful and even worse showed up a very large white patch. Referred to:
June 2001 - Vulva Clinic at a
July 2001 – extensive and severe lasering – caused “agonisingly painful” scarring (the words of my next Consultant) and did not remove all of the VIN. The biopsies taken gave a diagnosis of Paget’s Disease of the Vulva, although at that time I was generally called Extra Mammary Paget’s Disease of the Vulva, which caused great confusion when I had to explain this unheard of disease to, often disbelieving, health professionals and others. (One of whom at a later date, kept insisting I must have Paget’s Disease of the bone until I finally suggested that I would ask my gynae why he had removed my vulva! Even then I don’t think he was convinced).
Sept 2001 - Had a follow up appointment and was told to check weekly for lumps and if one appeared to get straight back in touch with the hospital. This gave me the impression that Paget’s was a very aggressive disease which is not generally true. I spent the next nine months terrified that I would find I had cancer at any moment.
Dec 2001 – Saw different GP who was brilliant. With one phone call, he arranged for me to be referred to a Vulva Clinic at a different teaching hospital, again in
April 2002 – Seen by a Professor of Dermatology who felt that too much damage had been done and surgery was the only option. The following month I was seen in a joint vulva clinic by the Dermatologist and a Gynae Consultant. I was then seen every 6-8 weeks until my notes arrived from the first hospital. It took over six months for my notes to come three miles across
November 2002 First surgery (mainly exploratory and to remove some of scar tissue and Paget’s disease to make me more comfortable). The nursing was truly diabolical with rude, unhelpful staff. They seemed to take pleasure in making life as miserable and uncomfortable as possible for their patients. I always assumed previously when reading about experiences like this, that the patient or family had perhaps been rude or difficult but I found, from the moment I arrived on the ward, the staff were uncaring and totally indifferent to their patients. The staff nurse in charge took umbrage with me because she didn’t know what a vulvectomy was. Her comment was “Wos that then?”.
I had no help with even the most basic hygiene, the surgical wound was never checked. There was a haphazard attitude to pain relief, toilets and bathrooms that would disgrace even the worst public house. It was left to other patients to look after me on my return from surgery. I had not been told where the emergency button was. One of the nurses actually shouted at me because I asked about having a shower or a wash. I made a formal complaint and, after an investigation, was sent a written apology. I still get flashbacks from this experience and was so pleased when I saw the demolition team pulling the ward apart – I just wish I had asked if I could take a sledge hammer to it myself! Perhaps it would have laid some of my demons to rest!!! I was very scared about complaining knowing that I would be re-admitted to the same ward within a few months but my attempts to deal with the matter verbally were ignored and in the end I was left with no option. Hardly a stress free recuperation period!
Feb 2003 – Second surgery to remove more of the left labia and the external part of clitoris. The Consultant also trimmed the right labia to leave a more balanced appearance – but unfortunately no-one thought to tell me! When the swelling went down some days later I was thoroughly confused and for a moment thought they had somehow removed the wrong side.
The consultant was pleasant and polite and the surgery was neatly done but there was no offer of reconstructive surgery and no offer of an appointment at their Pain Clinic to help with the ongoing nerve pain problems that are still a problem now. Unfortunately the longer nerve pain is left untreated the more entrenched it becomes. The nursing improved at least for me if not for the other patients under their “care”, although they did thump my medication down on the tray to show their indignation at my daring to make a complaint
After the surgery I had regular six monthly checks – all clear until
April 2006 – Moved to
Nov 2006 – seen by a Gynae from another health authority, which took some time to arrange. He said that he thought there was a reoccurrence of the Paget’s.
Feb 2007 – at this follow up appt I enquired about Photodynamic Therapy – despite PDT being recognised by NICE, the Gynae Surgeon appeared to be very much against any alternative to surgery and tried to tell me that he had checked and that PDT was not available, as far as he was aware, in Leeds or
When he realised that he was not going to force me to go along with his opinion, in exasperation, he finally said that the only difference between surgery and PDT was cosmetic!! He became even more exasperated when I pointed out that, with a multi-focal disease like Paget’s, it may never reoccur or it could reoccur often. Even with a reoccurrence every three years I could be facing 10 or more surgeries with each one leaving more scarring and more pain. It seemed to be a bit of a no-brainer as far as I am concerned! Somehow didn’t think he would offer to speed matters up by referring me for PDT!!
March 2007 - Applied to my PCT for Photodynamic Therapy. Only found out after some weeks that the first hospital I applied to no longer offered PDT. The PCT were not very helpful or co-operative and unfortunately my GP’s surgery mislaid the queries the PCT raised, such as whether my GP supported my application – the clue could have been with the letter of support he sent in with my application but it felt to me that they were doing all that they could to delay and hold up my request. Eventually I was forced to complain to a senior executive in
18 Sept 2007 - Seen by a Dermatologist in
30 Oct 2007 – My first appointment with the PDT department. I was examined using an Episcan (Longport Intl) which is an amazing machine and so much better than vinegar washes and the oh-so painful biopsies. The Episcan is totally painfree like most other scanning machine, but it can detect abnormalities in the layers of the skin so that the doctor knows exactly what is happening in the area concerned.
11/13 Nov 2007 - My first PDT treatment. After explaining his reasoning to me, I agreed with the Clinical Oncologist that the whole vulva should be treated using an intravenous injection (in the arm/hand 48 hours before treatment) rather than the more normal approach, which was to treat each area of Paget’s by applying cream to the affected parts only, 6 hours before the treatment. The injection meant that I needed to avoid direct sunlight for six weeks but, with only the occasional lapse which gave a prickly heat rash, I did not find this too difficult. The rationale behind this was that the vulva area is not very accessible and it is almost impossible to keep the cream at the required depth and in one place for six hours.
People treated with the creams on the vulva area in the past have not, overall, had very good outcomes. It would also, hopefully, destroy any tiny cells that may not have shown up even with the Episcan and at the very least, hopefully delay any reoccurrences.
The treatment itself was uncomfortable but this was mainly due to the nerve pain that I have had since the laser treatment in 2001. Most people tolerate it well. I travelled home without any problems but later in the afternoon the area began to swell and became extremely tender and painful. The pain was helped by taking similar medication to those I had used after my surgeries and fortunately my GP had given me a reasonable supply. The swelling continued for three days, stayed level for three days and then, to my great relief, started to go down. After this I was left with two areas that were uncomfortable but easily bearable. Presumably this was where the Paget’s was most concentrated. After three – four weeks these areas had healed and were no longer painful. The initial pain was much the same as after conventional surgery but the worst was over a lot sooner.
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Follow up appts 22nd January 2008 and 18th March 2008 – two smallish areas of Paget’s remaining
27/29 April 2008 – second PDT treatment using the same intravenous method but this time shielding the now healthy areas of the vulva during the PDT treatment and concentrating on the remaining areas of Paget’s. Having told the PDT team of my previous discomfort they arranged for me to use Entonox (gas and air) during the procedure and it was very easy and relaxed. No problems at all. Being wiser this time around I took some pain relief immediately after the treatment and then kept it up over the next few days but the swelling was considerably less as the treatment had been kept to the minimum.
June 08, October 08 and February 09 check ups - totally clear of Paget’s with just one query over a small nodule that needs to be kept an eye on so that it can be measured and checked by the Episcan.
After all the unlucky breaks I have had in the past, I have every confidence in the PDT team. They go out of the way to make the experience as easy as possible and nothing is too much trouble for them. Questions are answered willingly and they are a real credit to the NHS and show that it is possible to offer a professional high standard of care with great kindness and compassion.
I saw a local Gynaecologist about other matters in August 2008 and he commented that the skin looked fresh and healthy.
From day one of the diagnosis I have been told that I will need regular checks for the rest of my life and I am confident that, with the support of the PDT team and the use of the Episcan, IF there should be a reoccurrence it will be found quickly and can be treated just as effectively, so an excellent outcome for me and possibly for any other ladies with VIN (Cancer Stage 0) related conditions.
If you have any questions or queries on Photodynamic Therapy or any other aspect of my story please contact Carol via the VACO information link on vacouk@yahoo.com and I will do my best to help.
Sheila
