Hello funnyfudge

I'm sorry to hear about your diagnosis and the lengthy journey it's taken to get to this point. Whilst it's good news to hear that the CT scan didn't show any spread, it was obviously a realy shock to hear that the team are reccomending such a big surgery. It's understandable that you want to make sure that all options are discussed before making decisions about your treatment. 

We do have some information on our website about angiomyxoma as well as some informtion about asking for a second opinion if this is something that you think you might want to pursue. 

If it would hlep to talk things through with one of our nurses for some advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I know they will be happy to listen and help with any informtaion they can. 

I hope that whatever treatment route you decide to take that things progress smoothly for you. Keep in touch funnyfudge and let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hello I have also been diagnosed with aggressive angiomyxoma in 2024 our stories are the exact same and I am In the same position as yourself sending love ️ 

I’ve sent you a message 

Hi I was diagnosed with this tumour back in 2011 after it was picked up incidentally on a scan for something else. If either you or MissLayla want to discuss further please message me. 

Hi thank you for replying, can I ask what procedure you have / had? Many thanks 

I had a biopsy to confirm the diagnosis of the tumour.  When I saw the consultant we went through the options and surgery was discussed. I asked what else could be done as I was not keen on having such major surgery and he said there were cases where tamoxifen had been tried. It works by impacting oestrogen levels in the body as the tumour quite often has been found to be sensitive to this hormone being present.  Tamoxifen is more commonly used for breast cancer patients. Its essentially off licence for using it with aggressive angiomyxoma.  It like all medications can have side effects and is not suitable for everybody. Also owing to how rare this tumour is there are few studies available that look at this.

I opted to try tamoxifen and a follow up scan showed that the tumour had shrank a little. I continued on this with annual scans and in total was on it for 10 years. The tumour didn't really shrink any further but importantly it didn't significantly grow.  I came off of this about 4 years ago - there are no firm rules as to how long to be on it but we went by the maximum time people take it for breast cancer. Unfortunately my scan last summer showed it had grown so I'm going to have another scan this year and if it has grown further I may well end up back on the tamoxifen.

My understanding from studies/case reviews is that there are other medications used to see if they can shrink the tumours called GNRH agonists, again not without side effects and don't work/ not suitable for everybody.  Sometimes these medications have been used before surgery to reduce the size of the tumour other times they have been given after surgery to reduce possible recurrence risk. 

Obviously we are all different and what works for one person may not work for another so best to discuss with your own medical team. 

Did you go ahead with your surgery? If so I hope your recovery has gone well. 

Morning, I couldn’t have any hormone treatment till after surgery, then been told my tumour doesn’t feed off any hormones. I’ve had major surgery in October at hospital, they have tried to remove by making an incision from my lower back that continues round up by the side of my bikini line and removed 1/4 of sphincter muscle Internally. I have a mri booked in next week to see if it was successful  

Fingers crossed for next week then, toes as well.