Translocation carcinoma

Hi Gill. I haven't heard of this, so can't help you with any direct experience but I hope someone on here might. You must be going through a lot of emotions right now. I don't know if it helps at all, but even though I have a more common type of cancer, there is an intermediate to high chance of recurrence so I'm having some immunotherapy treatments to help address that and scans every 3 months. So I feel very aware of the uncertain future.I imagine you feel something like that? I think in some respects, we all have an unknown prognosis, as even where there is data/statistics, there are so many variables and individual responses that no one really knows how things will turn out for them. I hope that makes sense?! It is hard to get a handle on and in all honesty, personally I grapple with the 'unknown' with varying degrees of success! How are you recovering from the surgery? Also what part of the country are you in?

Hi Starlady, Thanks so much for your reply, I appreciate it. What you've said really does make sense and I'm sure in time it will get easier to manage the fear of the unknown but at the moment thing are just a bit raw. I have 3 young girls so the thought of not being here for them is what terrifies me the most. I need to try and stay positive though and generally I've been quite good at that but just felt a bit floored on Thursday with results. I've recovered well from surgery and physically pretty much back to normal. I'm in Kirriemuir, Scotland, sorry forgot to say! It sounds like you're being monitored closely and I really hope that and the immunotherapy keep you safe. Thanks again, Gill x

Hi, I have renal carcinoma with TFEB rearrangement.Discovered and operated in March 2015. Relapsed with metastasis in October 2023. My advice check yourself forever with abdomen MRI every 3 months.

Hi Nuanda, thank you so much for your message. I'm so sorry to hear you've had a relapse. I hope your treatment is going well. If you don't mind me asking, what stage was your tumour when you initially had surgery? I am currently on 3 monthly scans but my consultant is planning to reduce frequency as time goes on. I am having CT scans. Have you always had MRI scans? Where in the world are you? Sorry for all the questions! Thank you, Gill 

Hi Gill, no problem at all with the questions, it's a pleasure to talk. When he was first operated on, it was at stage two. For the first two years, check-ups were every three months. Then from year 3 to year 5, every six months, and from year 6 onward, only once a year. Now that I've studied the tumor with translocation, I realize this was a mistake. It's a type of tumor that can recur even after many years. The CT scan is perfectly fine too, but here in Germany, they prefer MRI to avoid the negative effects of radiation from the CT scan. It's important not to rely solely on abdominal ultrasound. If I could go back, I would get check-ups every three months for life, but of course, no doctor, not even here, would recommend that after nine years, so I would get them done privately. As for immunotherapy (Cabo+Nivo), after two months (June 27), the assessment was difficult, but overall it showed stability. Now we're doing the second round of tests again after about two months, and we'll see how things look ..

Thank you for sharing your story with me. I did worry slightly about the radiation risk but have never been offered MRI. I will discuss this with my consultant next time see if I can maybe alternate between CTs and MRIs . I'm glad to hear your treatment is working and things are stable for you. Long may that continue . It's scary to think it can recur at any time. I wish there was more data but very little seems to be published on TCC. Take care of yourself. Gill

Gill, it was a pleasure. There certainly aren't many of us with this type of renal carcinoma, so sharing our experiences is important. There are also Facebook groups where there are other patients with our specific condition.

Hi Gill, 

My sister has translocation XP 11.2 cancer. She has had her kidney removed but unfortunately the cancer metastasised and is now in her lymph nodes and pelvis. She started immunotherapy 8 weeks ago. It’s such a rare cancer and very little information online. When were you diagnosed? 

Hi Aileen,

Thanks for messaging! So sorry to hear about your sister. How is she coping with the treatment so far? When did she have her kidney removed? Was there signs of metastasis at that point or has it recurred since? I really hope she responds well to treatment and it doesn't make her feel unwell. I had my kidney removed at start of March. Luckily it was caught earlier then most as I had a large cyst on my kidney which caused the pain so I am stage 1a but still feel like that doesn't always mean much with this type of cancer and that it can recur at any time. Is your sister on the FB group? 

Hi Gill, she has part of kidney removed 3 years ago and then the full kidney removed 2 years ago and thought she was cancer free (no treatment needed) until she begged for a scan cause she knew it was back. It’s now in her lymph nodes and all over her pelvis.she was given a terminal diagnosis. They are giving her immunotherapy to see if it can at least slow it down. She’s very depressed and in a lot of pain. It’s such a rare cancer and I can’t find much information on it online. I do hope you are having preventative treatment as we think if my sister got offered the preventative treatment earlier we might not be where we are today. She’s not online as I think she’s still trying to come to terms with it all. Good luck with your journey. Xxxx