Monitoring checks with zoladex

[My_adventures]

Hi there

I'm approaching the end of my 6 month's of zoladex.

I've spoken to my gynae secretary and I'm to continue taking it, as long as I'm ok with the side effects.

She said you'll be being monitored by your GP - but ive never seen anyone I didn't even see the gynaecologist it was a phone consultation?

What checks should they be doing? Has anyone experience of this?

I don't want to take zoladex for more than 6 months but if I don't my cysts are killing my kidney my gynae said.

I was told my surgery would be before Christmas but due to staff shortages they haven't even had the internal MDT which was scheduled for Oct.

I feel like I have to make a decision on my health which I'm not equipped or supported to make. I know everyone is in the same boat and the NHS are struggling.

Any advice greatly welcome

[Dogmad6]

I've been on Zoladex for years. I don't have monitoring although I have a really good GP I can easily get an appointment with. I do have a bone density scan every 3 years (used to be 2) to check for osteoporosis.

Zoladex is the mainstay of my treatment.

Don't know if this helps. xx

[My_adventures in reply to Dogmad6]

Oh that's so good to know, it's so hard to get information at the moment.

Thank you for taking the time to reply.

[GreenTeacher]

Hi, I took Zoladex for 11 months in the end as my surgery kept getting pushed back too. I wasn’t really monitored so I had to be proactive in contacting my GP & consultant to ask questions/raise queries during that time. I was apprehensive like you but it turned out fine. I was worried because I had ‘only 6 months’ in my mind and I mentioned it to my consultant but my consultant said that as I was getting on well with it I could actually take Zoladex for years and that he had patients who had been taking it for years as their main course of treatment - not even leading up to an operation. I remember reading the pamphlet after the first injection/implant and it said very clearly that it isn’t recommended to take it for more than 6 months but I wonder if that is because it is a relatively newly rolled out treatment to wider patients and they must have a number of people who react badly to it. Hopefully if you haven’t had any/many side effects then you will be ok to stay on it for a few more months until your operation. I didn’t have any symptoms/side effects on Zoladex as I took HRT alongside it, and I am just so grateful that it helped my endo pain so much.

I really hope you get a date for your surgery through soon, it’s awful waiting. I was told I was looking at 2-4 years of waiting because of the Covid backlog so I was lucky that I was in a position that I could decide to pay to go private (luckily, I had already been saving up to buy a new car for a couple of years, if I hadn’t been saving I don’t know what I would have done as the thought of that sort of wait was unbearable). Privately I was seen and operated on within about two months (it would have been within a month but my surgeon had to have some personal leave). I feel very lucky that that could be an option and I’m now 4 weeks post-hysterectomy. Good luck and I hope you get some good news about your operation soon - you will get there x

[My_adventures in reply to GreenTeacher]

I feel like you've just read my entire thoughts!

That was exactly how I felt, I'd geared myself up for 6 month's I've even had my preop so it all aligned nicely. Never mind.

Did you have bowel surgery as well? My parents have offered to give me some money but as I believe it's quite complex surgery I am worried about them starting and then hitting my budget and just stopping?!

Thank you so much for taking the time to reply.

[GreenTeacher in reply to My_adventures]

Hi, I’m glad I’ve been able to help a little. NoEndInSight has just left you some amazing advice which I wish had read when I was on Zoladex!

I had some superficial endo on my bowel so I had a colorectal surgeon participate in my operation to shave that off but nothing more serious. I had Stage 4 pretty much everywhere else.

I had my operation through a specialist Endometriosis clinic which was quite a bit more expensive than normal private care. I didn’t really have a clue about anything but my partner did lots of research and was adamant that we did it that way. They were very upfront about costs and I knew how much it would be all the way through. It is a big decision and a lot of money though. It does cost more if bowel surgery is needed.

If it is an option for you it might be an idea to have a private consultation (this is around £200-300) and they would be able to tell you how much the surgery you need might be. You could ask any questions and make a decision from there.

Good luck xx

[NoEndoInSight]

Hello

Zoladex is often prescribed for longer than the licensed six months, but if it is then it is important that its ongoing efficacy and also any side effects are closely monitored as the risk and severity of some (such as bone density or liver enzyme changes etc.) do slightly increase the longer you remain on the treatment. Ideally you should be offered a schedule of blood tests, blood pressure checks and bone density scans as well as a general review. Are you also on add-back HRT? If so then that aspect should also be monitored over time too to make sure it is optimal and doing its job too.

Zoladex is a specialist prescription when prescribed for longEr than the last six months which some GPs are not familiar, so it is important to ensure your ongoing treatment is being appropriately monitored by your assigned specialist.

If you haven’t already got a copy then it is worth downloading Zoladex’s manufacturer’s Summary of Product Characteristics (SmPC) - this provides more detailed information than the basic Patient Leaflet concerning the drug’s use and includes suggested monitoring. You can find a copy for monthly injections here:

medicines.org.uk/emc/produc...

Just search the database for Zoladex if you are on a different dose and download the SmPC for that instead.

I would keep trying to contact your specialist and ask how they intend to follow the recommended monitoring protocols, but maybe also try and see/speak to your GP, show them a copy of the SmPC and ask them how they too will monitor your treatment in line with the recommended protocols over time.

It is your Specialist and GP’s job to make sure you get the best out if any prescribed treatment, so please do keep trying to get in touch with them.

Best of luck,

x X x

[My_adventures in reply to NoEndoInSight]

Oh thank you so much.

I wouldn't even know any if this. I am hoping to speak to my gp next week so I'm going to take this with me.

I can't thank you enough for taking the time to reply.

[NoEndoInSight in reply to My_adventures]

No thanks needed - happy to have been able to help and I hope you get a solid monitoring schedule in place so your Zoladex treatment does exactly what it’s prescribed to do. ❤️

The Medicines.org.uk database is a really useful one to remember - every UK prescribed medical treatment (even basic stuff like Vicks Cold and Flu inhalers are on it), so if you ever feel you need a bit more info on a treatment before making a decision or discussing one with a GP / Specialist you can find it there.

I found it helpful to show the SmPC for any treatment I’m on to my family so they have all the relevant info too and can help provide support monitoring any side effects etc.

x X x

[635703]

Been on Zolodex for months and I have tibilone HRT with it so I’m fine.

It’s nothing to be overly concerned about 💛