Told there's no cure? There are still questions worth asking.
My wife Nicola was told this about her FATWO. Being told your cancer can't be cured is one of the hardest things anyone can hear. It doesn't always mean every door has closed. This page sets out the routes other families have used to find more answers, the questions worth asking your cancer team, and a search of every published FATWO case so you can find ones like yours.
Nothing here is medical advice, and none of it is a promise. FATWO is so rare that no one can say what will happen for any one woman. Please talk everything through with your own team. — Andrew
Routes to helpQuestions to askAsk the libraryFind cases like yoursWhat causes it?
Routes to help and second opinions
These are things you can ask for. You don't need to justify asking: it's your care.
Ask for an expert to look at your tumour again
Ask your oncologist to send your tumour slides or tissue blocks to a specialist gynaecological pathologist who has seen FATWO before.
Why: FATWO is easily confused with other tumours. Several papers in our library describe tumours first called FATWO that turned out to be something else, such as an STK11 adnexal tumour, and the right diagnosis shapes every decision after it. A 2026 textbook chapter says some of these tumours need to go to national centres for expert review (FW-168).
Ask for a second opinion at a specialist centre
Ask your oncologist or GP to refer you to a specialist gynaecological cancer centre, or a rare cancer team, for a second opinion. They can send your scans, reports and slides, so you may not need to repeat tests.
Why: very few doctors anywhere have treated FATWO. A team that has seen more rare gynaecological tumours may suggest something different, or confirm the plan, which can bring its own peace of mind.
Ask for your case to go to a specialist tumour board
Ask whether your case can be discussed at a multidisciplinary meeting with rare-tumour experts, regionally or nationally.
Why: the same 2026 chapter says it is mandatory for these rare tumours to be discussed at a multidisciplinary clinic or tumour board (FW-168).
Ask about gene testing of your tumour
Ask whether your tumour can have wider gene testing (sometimes called molecular profiling), and whether STK11 has been tested.
Why: in a few published cases, gene results pointed to a targeted drug that was then tried (for example FW-038, FW-150). An STK11 change can mean the tumour is an STK11 adnexal tumour instead, which can be linked to an inherited condition, so the authors of several papers advise genetic counselling (FW-160, FW-166). Gene testing often doesn't find something that can be targeted, but it's still worth asking
If you've already had a test, ask for the full report: which genes were covered, and whether it included RNA (gene fusion) testing. A broader test can sometimes be done on tissue that's already stored. Ask whether it can be arranged through the NHS or HSC first. Privately, broad tumour gene tests cost roughly £2,500 to £5,200 (independent UK guide).
Ask about clinical trials
Ask your team whether there's a trial you could join. Some trials are for any rare tumour, or for tumours with a particular gene change, rather than for one type of cancer.
Search for yourself too: Be Part of Research (all of the UK, including Northern Ireland) and ClinicalTrials.gov (worldwide).
Take the evidence with you
Bring the list of questions below, and what has been tried for FATWO elsewhere, to your next appointment.
Every treatment reported for FATWO · The full research library
Questions to ask your cancer team
Print this or save it on your phone. You don't need to ask them all at once.
- Has my tumour been reviewed by a pathologist with experience of FATWO or Wolffian tumours? Could it be?
- Has my tumour been tested for STK11? Should I be referred to genetics?
- Has my tumour had wider gene testing? Can I have a copy of the full report: which genes were covered, and was RNA (fusion) testing included? Did it find anything that a drug could target?
- Has my case been discussed at a specialist or national rare-tumour meeting? Could it be?
- Could you refer me to a specialist centre for a second opinion?
- Are there any clinical trials I could join, including trials for rare tumours or for a gene change?
- What has been tried elsewhere when FATWO came back, and could any of it apply to me?
- If surgery or targeted radiotherapy isn't possible now, what would need to change for it to be reconsidered?
- How will we know if my treatment is working, and when is my next review?
- Who can I contact between appointments if I'm worried?
Ask the library
Ask a question in your own words. Our AI assistant reads the checked summaries and cases in the Research Library and answers only from what they say, naming the papers so you can check them.
Find cases like yours
Search every woman described in the published FATWO papers we've collected. Tap what applies, or type a word, and you'll see the matching cases with what was tried and what the authors reported.
Please read firstWhat this search can and can't tell you
It only shows what was published. It doesn't diagnose anything and it can't tell you what will happen to you.
Published cases aren't a fair picture. Unusual cases, and ones where the tumour came back, are more likely to be written up. Many papers stop following women after a short time.
A few women appear in more than one paper. Where we know, we've counted them once.
Every case links to our plain-English summary of the paper, and from there to the original.
Cases from papers this person wrote or co-wrote. Most are pathologists who examined the tumour, not the doctors who treated the woman.
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What causes FATWO? What the papers say
- Where it comes from. FATWO is thought to grow from tiny leftover tissue from before birth, called Wolffian (or mesonephric) duct remnants. Everyone has some of this tissue near the womb and ovaries, and it is almost always harmless.
- Why it starts to grow isn't known. We haven't found any paper that links FATWO to anything a woman did or didn't do.
- Genes. A 2019 gene study concluded that the changes that define FATWO “have yet to be discovered.” Smaller studies have found changes in genes such as KMT2D, but no one yet knows what they mean (FW-062).
- STK11. Some tumours first called FATWO carry a change in the STK11 gene. Since 2021 these have been called STK11 adnexal tumours, a separate type that more often comes back and can be linked to an inherited condition called Peutz-Jeghers syndrome (FW-166). That's why STK11 testing and genetic counselling matter.
Support for you and your family
Macmillan Support Line
0808 808 00 00, free, 7 days a week, 8am to 8pm. For anyone affected by cancer, including family and friends.
Talk to us
If you or someone you love is living with FATWO, we'd love to hear from you. Families like ours can help each other.