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
Your message to me came after the reply to the other lady so I have sent you conflicting chats.,.,
I haven't been offered the cream but that may be because yours was extensive and skin removal not an option (?). Was it very painful using the cream, you mentioned blisters. Did you visit the surgeon for his opinion. Our chats all got cut short as I went on holiday to India and we were both waiting procedures. Mind was under NHS but done in a private clinic as the it had been taken over by NHS to help free up beds for corona virus. Very good in a private room,, better food, etc
Yep I was offered the cream because mine is quite extensive. I met with the surgeon first and she reffered me to her colleague who had had expereince of using immiquimod.
From the studies I've read up on the ladies in the studies have only had it in one place and not widespread like mine.
It's not too bad using the cream. It makes it very itchy. I had blistering probably becuase I was scratching or put too much cream on. I also dont get an opportunity to rest to prevent added friction as I'm always running around after my two little ones!
i spoke to my consultant and he said to rest until it was healed and start again. These can be the side effects.
The biggest challenge for me is keeping it on for 10 hours as I find it hard to fall asleep and usually need to go to the toilet! LOL!
Not everywhere offers the cream. i went for a second opinion at a cancer specialist hosptial and they only did surgery and felt the cream was just as successful as surgery. pretty much the same reccurance rate as surgery as well.
i've had a few procedures done at private hospitals via NHS - I agree it's lovely. and the food is so much better! LOL!
