Hi wonderful to hear from someone else. I had some skin removed in April which prioved to have just 2 cells that were cancerous. Mine was towards the front and one side only which is an easier area to do as there is spare skin. I had to keep the area well ventilated ! So no pants and loose skirts, but it was summer time so no problem and in fact I quite liked it. I healed quickly but in September an adjectival area didn't feel right so I had that done and it was a much smaller area and proved to be clear of cancer. I am now awaiting another one at the end of April. Each op is smaller than the last and I get over it quicker. However normal trousers are out as they are too tight and I alternate between skirts and tights and track bottom or leggings. A whole new winter wardrobe. The ops are now totally healed and feel just like they should, not painful and not aware of them
in the UK it seems surgical mainly to remove the skin before it become cancerous. In America they seem to go straight for the cream. How old are you? I will be 76 next week
keep in tough and let me know how you get on. I have told so many people and all the ladies have been pleased to know about it and to watch out for themselves . One is being investigated for it soon
Originally they did 3 biopsies which is how they discovered it. The skin from the first op showed just 2 cells had turned to cancer. Then another adjacent bit felt different and that op proved negative. I hope the next one will be too. But having it starting to feel different and he can see it is, however little, then he operates. Many small ops better than a big one
my daughter didn't have chemo which was a blessing
if you mentioned which hospital you were under it has been removed, so don't mention it again. What area do you live in
No I live by the sea in Suffolk Was lovely and sunny now dull with a chilly wind. Been too busy this morning to go out so must this afternoon for some fresh air and exercise
I met with my consultant on Wednesday and he has prescribed immiquimod for me to apply for 16 weeks. Ill then have to wait a month before they can repeat the biopsies. I'm going to start it tonight he's warned me it's not going to be easy wish me luck!
I also met with another consultant at another London hospital - more specialised in cancer just for a second opinion. It was really useful to hear his experience of pagets disease has been. He seems to have more experience (whereas the one I'm being treating at has only one other case). But they only offer the surgery and not the cream as an option.
Should it come to the surgery I may well ask to be seen by him, as the other consultant sang his praises as a surgeon!
Any way I'm feeling a lot more positive. I think to finally be starting something - just need it to do the work! Fingers crossed.
How are you? It's been ages and you must be well into your treatment. I had my 3rd op 2 weeks ago and this morning had a phone consultation with my surgeon. No cancerous cells found thank goodness but full of Pagets! They have all been discussing my case and I am to see a radiologist to tell me the pros and cons of that as again more ops in the future. Perhaps I can start another chat to see if anyone else has had radiotherapy there
it has been reassuring to read your expereince of are treatments/surgeries.. It's strange the age difference in both of you. It always worries me when they say things like"cancer of this type in people of your age is rare" ... that might be the case but it still could be so just be safe & run tests please!!
Good morning Pagets is mainly Caucasian women post menopausal min started with what I thought was thrush but did not respond to over the counter treatment I was under considerable stress at that time too as my husband had Alzheimer's I went to my GP and they decided it was Lichen Sclerosis which is not curable but is controllable one in 10 can go to cancer. 2 years on I move and see a new Nurse Practioner who is determined to to help me eventually she asks that I have biopsies which come back as Pagets Pagets of the vulva is extremely rare and is one in thousands of the 1 in 10 that I mentioned before. As far as I know in the relatively early stages, it does not look very different from bad thrush and that the only way to confirm is through biopsies. I have mentioned this to quite a few women, and all have been very grateful as they had problems and so far non of them have got Pagets. I think if it is left untreated it can spread I am so glad that I was sent and had an early diagnosis
i hope this has helped, but do come back if I can help any more
It's great news that the biopsy showed the cells are still non cancerous. Not so great about the paget's.
I dont know much about radiotherapy - they said it can be uncomofrtable but worth it if it works.
im sort of well into my treatment. I've had to stop twice for 2 weeks each times - for severe swelling and other blistering. But I'm back on it now. Also I only by chance wanted to check if i should be using the cream together with the barrier cream he suggested - he said probably not as it could be diluting the cream! This was week 8!!! So now I'm very anxious that the first 8 weeks havent been effective and obviously I've missed 4 weeks.
So it's possible i've only been using the cream properly for 2 weeks if that makes sense!
I'm still waiting for my biopsy appointment. It should be some time towards the end of July. I have to stop applying the cream 4weeks before the biopsies.
Have you considered immiquimod/Aldara cream? There's a few studies on it. It seems to work quite well.
my GP prescribes it and i get it from the chemist. so it's quite conveinient in that sense.
Hope it goes well with the radiologist. It would be good to know more about that as another option - especially as it's so limited!
I had perisitent itching in one area. The Gps thought it was exzema. They saw that my skin had changed - it was slightly white but there was not tumor so didn't think it was anything sinnister (Also I don't fit the usual Paget's patient). This is also a sign of paget's (not sure about other vulva cancers)
I was prescribed steriod creams some worked and some didnt. But all eventually stopped working. I was then reffered to the Community Gyane. They prescribed another cream. As that didnt work they did the biopsy. Which came back as Paget's. Took a year to diagnose by this time I had widespread Paget's.
Apparantly peristent itching is a sign. I didn't know this. Also the skin whitening ( I never looked down until now so wouldn't have checked! Lol!)
Have you been to your Gp? It may be worth asking for a referral to your community Gynea, they can also do biopsies if needed.
How are YOU doing Shars. Did you see my chat to you I sent a few days ago. Did you try the cream or go for surgery. I'm at a cross roads now as well, when the next lot comes Best wishes
How are YOU doing Shars. Did you see my chat to you I sent a few days ago. Did you try the cream or go for surgery. I'm at a cross roads now as well, when the next lot comes Best wishes
