Angiomyolipoma or RCC.....?

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So, I had a pelvic MRI scan in December to monitor my uterine fibroids which picked up a soft tissue growth on my right kidney. I had another scan in January, this time a CT and another at the end of February (MRI). I saw the urology consultant last week and he said he wasn't completely sure what it was. He didn't want to do a biopsy as there is the risk of a bleed if it is an Angiomyolipoma, so wants to do a partial nephrectomy (with the possibility of a complete nephrectomy if he can't remove the growth because of its position) I'm obviously very worried that it could be malignant. I had a letter today confirming all of this and saying it hadn't really changed since the first scan (3.8cm I think)

He wanted to operate at the end of May, but to add to my worry I have booked to go to New York with my daughter for 4 nights, getting back on 1st June. Both the consultant and nurse said that 3 weeks wouldn't make any difference and to go on my trip as planned. Can't help but have worst case scenario going around in my head. RCC? Complete nephrectomy? Getting I'll.wjile.on holiday? For the last couple of days I have had pain in my upper back too. Thinking/hoping this is tension and.stress caused by the last few months and not because of my kidney as I had no symptoms before!

Feel like I'm falling apart and in need of some positivity.

Sorry for the ramble. I'm scared

N x

Carole F - Macmillan over 2 years ago

Hello Njg,

Thanks for getting in touch.

There’s no need to apologise – you haven’t rambled at all. You’ve explained how difficult the past few months have been.

It must have been quite a shock when you were told that something had been seen on your kidney. I’m sure that the specialist explained that angiomyolipoma is usually a benign solid kidney tumour, but that when there is any uncertainty about diagnosis, surgery is often recommended.

It’s good to read that you have a treatment plan in place, and that you have spoken to the consultant and nurse about going on holiday.

However, you’ve mentioned having a new pain in your upper back over the past few days. We would recommend that you are assessed straight away as pain can be a symptom of bleeding.

You should contact your specialist team, GP or 111. If your condition worsens, or you are concerned that you need immediate medical attention, you should call 999 or go to A&E.

I appreciate that you are worried that this could be malignant and were looking for some positivity. I hope I haven’t added to your worries, but it’s better to err on the side of caution when there are any concerns.

It might be worth speaking to the consultant again about your worries about going on holiday, specifically about the risk of you taking ill.

And if you’d like to talk with one of our nurses on our Support Line, please don’t hesitate to give us a call.

I hope this is helpful.

Sending best wishes,

Carole

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us.

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Angiomyolipoma or RCC.....?