Hi Linda

Sorry, I forgot to say the drug I am taking is provera, which is a progestin same as megastrol.  I'm not sure what the difference is between the two. My consultant says that if this doesn't work we can try an aromatise inhibitor called Arimidex which blocks oestrogen.  He is currently holding this in reserve in case I need it in the future.

From what I have read, these are the main drugs that people with ESS take (or Letrozole which is another oestrogen blocker).

Ruth

Hi Ruth

I'm surprised that the results were not passed to your GP to contact you to notify you of the mass, it wasn't very clever of them to leave the results hanging about, that has obviously  made a bit difference.  I gather you have to make your decision tomorrow to go for the op now or try to shrink the tumour, so good luck with trying to decide, as you say only you can make that decision with guidance from the specialist.  Let us know how things go.

I'm down in Devon and have been very fortunate and happy with my treatment, it's a shame that it is not like that all over the UK.

Linda

Hi Ruth

Have you had any luck yet with your second opinion and do you know if the tablets are helping to shrink the tumour?  I am getting well and truly muddled up trying to find the right thread each time, but considering we are all talking about the same thing I don't suppose it really matters where it goes.  Do you know if you will stay on the pregesteron once your tumour has been removed? Mine are for always, I was lucky that they were willing to reduce them to 2 per day after starting on 4, I hate to think what my appetite would be like, I have managed to keep the weight down  but the temptation to eat is always there.

Let me know how things go

Take care

Linda x

Hi Linda

You are right, there are now a number of threads but if they are all headed ESS or something like that, we should find each other.

I'm in a wait and see period.  I tried chasing things up today and found out the PCT has agreed to fund the second opinion but the hospital have passed it to the GP practice to organise it - and by the time I found this out the person I need to speak to at the GP had gone home - so more phone calls tomorrow. I will be scanned again at the end of June to find out if the drugs are working.  If so, I think I have to continue for a while to shrink more for surgery.  I'm on 400mg per day, I assume this will be reduced in the long term and then I will have to carry on as you are.

the largest tumour is on my right ovary but there are multiple tumours in my pelvis and two in my lungs.

I saw somewhere that you had written it was a shock that I had a recurrence after all this time - but we are all different and here's hoping that you are one of the lucky ones and never see it again.  However, I think it is unreasonable for people to say you shouldn't think about cancer or join in the chat - it will always be at the back of your mind and if you are unlucky you will need the support and the knowledge of other sufferers.  ESS isn't like other cancers because it can reoccur after such long periods. I think having somewhere to talk about it helps me deal with the uncertainty. Although right now I am a bit calmer than I have been over the next few weeks - but i'll be anxious again when it is scan time.  As for appetite, for the first few weeks I was so shocked and scared I wasn't eating much but I am just beginning to feel it now.  It doesn't help that my work colleagues sent me vast quantities of chocolate!

Let's keep talking

Love Ruth

Allie!

I hate saying cancer also, so I have named it Ursula! Hope you are doing well this summer. Thank you for sharing your story.

Jackie

Hi Allison

Hope all is going really good and youare well.

Its several  months since our messages, hope you are still reading on site as I am thinking of you and wondering how you are now.

I had surgery early April, should have been March, at the Royal Marsden in London, my local hospital in Leeds said they couldn't do any surgery anyway I was rushed into hspital with viral gastroenterfitus (sorry, bad spelling) so relieved to recover from that and get on with the surgery to remove the ESS tumour.

Thanks to my wonderful, brilliant surgeon , all went brilliantly apart from a bad reaction from all the pain killers and I was re admitted in critical care for a further 7 days.  Managed to get bk home for 2 and  a hlf weeks then bk to London for almost 7 weeks of radiotherapy treatment everry day.

I am home now and although it is not guaranteed it wont return I am feeling extremely well and feeling positive and optomistic.

I think this site is brilliant. To have contact with others in similar situations gives so much hope, help and support.

Please keep in touch

Sending hugs and love to you

Susan X        (mumthumb)

Hi Allison

How are you getting on?

I had the surgery in early April and then returned to hv 6 and a half weeks of radiotherapy every day.

I had a bad reaction to the pain killers and so was back in hospital in critical care for a further 7 days.

Anyway home now for 3 weeks and thankfully I am feeling very well.

I go back to have a CT scan and blood tests on 25 and 26 Sept.

Hopefully all will be clear and no recurrance.

Please do keep in touch it would be good to hear from you.

Sending love andbest wishes

Susan X

Hi Mags

Welcome to cancer chat.  I am sorry that you have to be here but this is a very supportive site.

From my experience, I would say it is a good thing that you have had your ovaries removed at this time as this may help prevent recurrence.  I didn't have mine removed as I was 40 at the time and we didn't know about the ESS until after my hysterectomy. I had had polyps but they had shown up as benign. I now wonder about that.  I won't repeat the rest of my story as you have probably already read it and hopefully it is not relevant to you. You are stage 1a so with luck you will never see this again, although HRT is usually banned. How frequently will you be followed up?

I am glad you are recovering well from surgery and that you are happy with your medical care - that is so important.

I can relate to what you say about telling your parents.  When I was first diagnosed the hardest thing I had to do was tell my mum.  My dad had just died and my mum had just had major surgery herself. I thought she dealt with it ok, all things considered.  However, it got even harder when I had to tell her about my recurrence - at that point it was suspected ovarian cancer.  When we talk about it now, she says that she feels as though someone told her something really  bad but it has faded into the background now.  Fortunately I am responding to treatment and feel really well.  I don't have children and I would really like to outlive my mum for her sake as much as anything else.  Do you have children?

If you are interested, I would also like to recommend the gynae support group of Sarcoma UK. You should be able to find them from their website. This is a small group of women who all have low grade or high grade ESS or leiomyosarcoma and we can discuss the different treatments and doctors' opinions.  Because ESS is so rare it is really good to be able to share this information.

Having said that, Cancer Chat is a fabulous site for being able to vent your feelings to people who know what it is like to have cancer or live with someone who does.  The more help and support the better, I say.

Best wishes

Ruth

Hi Mags

Sorry for not replying sooner.   Welcome to the site, I'd rather not have to, but none of us had any say about getting ESS so at least we are able to support each other.  You say that no follow up treatment is required, does that mean you do not have to have progesterone?   Any problem that I have had previous to the ESS has been  down to hormones, even my sleep epilepsy was  down to pregnancy. Hormones have a lot to answer for.  I am pleased you have come through the surgery without too much difficulty.  As you have probably read, I am on the other side of it all now and had my  9th all clear last month, but there is the occasional doubt there and just have to try and remember to be positive.

I  was also concerned about telling my mum and asked my brother and sister in law to do it in person as I couldn't do it over the phone. One positive thing was that being off ill from work gave me a chance to spend quite a lot of time with her, unfortunately she passed on 2 years later, but at least she saw me improving.

Take care and keep in touch

Linda x