UK Cysters

[English Rose]

Dear UK Cysters, the thread I posted below 'Anna-Maria' was also adressed to all UK Cysters, but the full question didn't print out for some reason. I'd be really interested in your advice/experience/stories in regard to this question, so please do read it & respond if you wish.

Love to you all x x

[Aquinnah]

Hi english Rose, I live in York. My gynonc comes from Leeds, but I see him in York. He hasn't said what kind of cyst it is - I think things are a bit different when you are postmenopausal, though if you have cysts the chances of it being cancer is higher than if you are not. Basically you aren't meant to have them at all at my age. Anyway, it is a 'simple' one, but now  5.7 cm, so not out of the woods yet. At first I think my chances of ca was something like less than 1%, now I think it may have increased to 3% - but that still leaves 97% chance of it being nothing! so back for another u/s in October and then see the specialist again. If it hasn't decreased or gone away, and certainly if it is growing, i think there may be a strong chance of an op then to remove cyst + ovary/ovaries, at least according to to the greentopped guidelines that RCOG produced for postmenopausal ovarian cysts.

Anyway, all the best with your probs - hope you can find someone to check you better, to feel more confident.

[sueg]

Oh I love Ludlow! I'm on the Staffs/Shrops border,so its about an hours lovely drive to Ludlow on a Sunday,pub lunch...ummm...
sue x

[English Rose]

Nice to meet you!

Barney I am glad your treatment has been handled well. From the stories of us UK ladies it does seem that things vary tremendously depending on where you live (& probably other things besides). There are at least a couple of us here who are being dealt with at this stage (pre surgery) by a gyn, and not given an option (only one gyn onc. for a very large area here, so obviously not everyone will get lucky). Read up on my rights & apparently you do not have a right to a second opinion, it is at the discretion of your consultant.I haven't heard anything about specialist cancer centres & don't know if our hosp is. I live in Devon & there is one main hospital for a large area. Sounds like folk in London have done quite well on the whole. good luck to you Barney, hope you are good. let us know how you get on!

Aquinna, glad that you are being overseen by a gyn onc & getting good treatment. Where do you live? Have they said what sort of cyst it is? Hope all goes well for you.

Sue, Sounds like you are getting 4 star treatment! I was bought up some of my childhood in the Midlands. My Folks & sister all live in Ludlow now. My Dad was treated In the Mids for bowel cancer & got excellent treatment. That was 15 years ago.He is doing so well. Probably out on his allotment right now! Hope things go similarly well for you.

Look forward to keeping up with your stories.

Love to all,        R x x x

[sueg]

Hiya Blossom,
I'm in UK too,in Staffordshire.NHS have been brilliant for me as well.From Doc to Gynae/Onc specialist in 3 days,surgery week later,chemo  2 weeks after that.My cancer nurse,Alison is my best mate,there for every appointment.I even get to see a clinical aromatherapist on the NHS-amazing!Just ask them,they can only say no!
Loads of love to you all
Sue x

[Aquinnah]

I'm another UK Cyster, a postmenopausal one. I hae also had great treatment from NHS. when cyst initially diagnosed (due to ultrasound fro bleeding ) I was referred and saw an ocn/gyn I thin within two weeks. As the cyst hasn't gone away I still see him to monitor. And so on. As so far I haven't got ovca I haven't used a McMillan nurse, but I was introduced as a contact point. Yes, we can have waiting lists on the NHS, but it is all free, and if you hve something serious like cancer or poss cancer it is very efficient in my experience.

[Barney22]

I'm from the UK too - ovca for nearly 2 years now treated under the NHS in London.  I'm surprised at some of the comments re no access to gyn onc etc - the setting up of the UK specialist cancer centres has meant these (gyn/oncs) are par for the course now and even at my local gen hospital they have a gyn onc.  Have you been going to one of the specialist cancer centres?  I was offered surgery within 2 weeks of being diagnosed at 2 hospitals (had a second opinion privately, but was advised by the consultant to go NHS as you get a whole team approach!).  Although clinics are sometimes very busy I have found the treatment excellent and the support good - I was even provided with 6 sessions with a psychologist to help me deal with the anxiety after my first line treatment.  I probably don't get as long with my oncology consultant as I would privately but my Macmillan nurse is always available on the phone and will arrange for me to come into clinic if I have any problems.  I hope you get things moving a bit more quickly.  Jenny

[Nat2]

Whereabouts in London are you being treated?  I'm at St George's in Tooting - they are fab.  I also had the whole team approach and my Macmillan nurse is so lovely - she has been the one constant throughout my treatment, from before my operation and she has been at every appointment I've had, and even popped in for my first chemo to see how I am.  I really didn't like her at first because I knew what she meant and it scared me - but now I know what I have I think she is great!

[English Rose]

Hi Nat & Scout shaddow, great to hear from you. 2 more grapefruit girls!

Scoutshaddow your surgery is on the same date as
Anna-Marie's! You have clearly had ongoing issues with cysts, as seems to be the story so often. Glad to hear you have a surgeon you are confident in.  

Nat, Glad to hear that you had good care & a good outcome. I guess things must vary quite a bit throughout the NHS. Thank's for the suggestion of using your story as an example. I am going to have to marshal any angle/argument I can to stand a chance of getting a gyn.onc.

I think it's great to put our heads together on matters NHS. Thanks so much for your advice & look forward to hearing more about how you are getting on

R x x

[scoutshadow]

I agree with Nat, press for the clinic because even though I have some niggling questions(see previous post just below), I have no doubt of the excellent skill level of the consultant who is performing my surgery.

[Nat2]

Forgot to mention that they should do a frozen section while you are under so post op you should have an idea of pathology (although this can change - as the frozen section only looks at a very small part of the cyst) - my frozen section was borderline.  They do staging here too.

[Nat2]

Hi - I'm also in the UK, in London.  I'm not orignally from Britian so have been used to the luxury of having private health care, so I was rather afraid when faced with the NHS after all the things I've heard.  I have been amazed with the care that I have recieved, from my orginal GP's appointment it was exaclty 4 weeks to surgery date - I had what they suspected to be a benign dermoid (20cm), I was expecting to be placed on a waitlist for months.  It turned out to be a 25cm tumour that had 0.8 of mm malignancy.  The path results took 3 weeks to come back, a week longer than anticipated as they had to examine one area more closely, and thank goodness they did - to be able to find malignancy that is not even 1mm!  I'm now having chemo and all the Dr's and nurses are wonderful - I have to say that I am and continue to be utterly impressed by the NHS.  My Dr said that if I wasn't under a cancer clinic they probably would not have found that spot of malignancy - so I think you should try as hard as you can to see a gyn/onc and use my example if you like.