Well I had my meeting yesterday with my consultant and things are not quite as we first thought, they have now told me that I have a very rare and aggresive type - adenocarcinoma with neuroendocrine elements - and that my treatment will change to now needing a radical hysterectomy, removal of ovaries and pelvic lymph node dissection which is being done on the 18th Feb, I also have to have a PET scan before. Depending on the results from the op I will then probably have to have chemoradiation treatment. Have had a look back over the forum and cant seem to find anyone with this type apart from when I google it and a link comes up for Jo's in 2008, would be very grateful if anyone with this type can give me any info as there doesn't seem to be much about other than quite depressing doctors pdf files.They are saying that they have caught mine quite early and it is being treated to cure but I have to admit I have gone from feeling quite calm to now being quite concerned.
Sorry, don’t have direct experience of this, but I just wanted to remind you that Jo’s has an ‘Ask the Expert’ service so if you can’t find anyone with the same diagnosis on the forum and want to get some more information, that might be a good route to try.
I do understand how frightening it is to be faced with a diagnosis like this though, and I certainly spent quite a lot of time fearing that I might need to have both types of treatment. In the end the surgery was enough(lucky me), so my advice would be to try to deal with each stage as it happens. It’s very easy to get ahead of yourself and you can drive yourself round the bend worrying about what might happen. One step at a time.
Good luck as you go forward and know that we are all here to give you support in whatever way you need.
I can relate to how you are feeling I was too diagnosed with a rare type and couldnt not find anybody else with the same type and any research papers online were all over 10 years old. My consultant told me to step away from google as Rosehip said it is very easy to get ahead of yourself. I found the forum great to just chat about how I was feeling and the members here are so supportive. Good luck and keep us posted x
Firstly thankyou to the ladies who have responded to my couple of posts, MrsH you are very right everything seems so outdated on the rarer types.
Well yesterday I had my PET/CT scan which was different - especially as it was done in the back of a lorry lol...from what my consultant and nurse said at my meeting last week this would be used to A-show up any hot-spots and B-be useful after treatment, so now we are waiting for the 18th when I have my R/H etc...have been reading other ladies posts with interest and already stocked up on big knickers, peppermint tea and soft loo roll!! - any other suggestions greatly appreciated.
One of the best tips I got before my rad. hyst. was to only take toiletries into hospital that you don't normally use and would be happy to never use again. I bought moisturiser, face cleanser etc.. from a very cheap range in Boots and binned the lot as soon as I got home - I knew the smell would always remind me of being in hospital otherwise, and it meant my 'usual' range was left unscathed!!
Also take in anti-bacterial gel and some general 'wipes' to keep things clean, as well as to just freshen your face up when you're feeling a bit clammy from having been in bed all day.
The food is different in every hospital of course, and I don't know what yours is like, but the food in the hospital I was in was basically inedible, and in child size portions. My husband brought in food for me and not only did it mean I had nice food and didn't go hungry, it cheered me up to have yummy things to nibble on!
Also, it depends what you're like, but I would suggest perhaps limiting your visitors, especially in the first couple of days, to nearest and dearest only. You'll be surprised how tired you get and you don't know how you'll feel post-op, so perhaps arrange people but include the option of being able to cancel last minute if you're not feeling up to it.
Big knickers and peppermint - brilliant advice - and remember when they ask you what the pain's like on a scale of 1-10, that anything over a 7 gets you the morphine! ;-)
Just a quick catch up post, have about 12 hours before I will make the journey for my radical hysterectomy!!, heard from my nurse on thursday that my results from the pet/ct scan showed no further spread of the nasty bugger so hoping that they get in tomorrow and remove the blighter - because of the type I have they are saying they might want to follow up with chemoradiation but will depend on the margins so fingers crossed as would really like to keep that as a back up!! - have plenty of big knickers and peppermint tea to go with a stack of dvd's and I even treated myself to a i-pad so here's to tomorrow.
