*update* Immature Teratoma

[lesrouge]

My wife has very recently been diagnosed with an immature teratoma of the ovary.

We've been told that this is a very rare cancer (apparently making up 1% of all ovarian cancer cases), and although the specialists and experts have been absolutely brilliant- there's very little (modern!) information on the internet about it.

Anyone with any experiences of it?

Secondly, I appreciate this might be a little paranoid. The specialist told us that there's an 80% chance that this can be cured with no recurrence. Which, clearly, is excellent news.

However, I've done that silly thing of playing Dr Google and come across this page

verywell.com/what-is-immatu...

Which suggests "survival rates of 25% or less when the tumors are found to be Grade 3"- and my wifes tumors are Grade 3.

However (and i'm probably answering my own questions here) the sources to that page seem extremely dated. Seems frankly irresponsible of them.

Am I best to totally ignore that and concentrate on what the specialist said? (even writing that sounds silly!)

(It's only been a few weeks since we found out she had cancer at all- so forgive me if I seem a little anxious)

[Katmal-UK]

Hi

Bit late for this bit of advice but stay away from Googling if you can. Statistics are just that, statistics, most are outdated and can't tell you what will happen to YOU (or in this case your wife). I'd be guided by the specialist and stay positive. Easier said that done I know but I was told 2 years and am still here 9 years later Stage 3 NED. Wishing you and your wife well. Kathy xxx

[Choski]

Having had a look at that link and some of the other articles they all leave a lot to be desired! Not very medical or substantiated. To give you a better site to look at try this one - the cancer research uk site. Extract below and note the bottom sentence -

"Immature teratomas are usually diagnosed in girls and young women up to their early 20s. These cancers are rare. They are called immature because the cancer cells are at a very early stage of development. Most immature teratomas of the ovary are cured, even if they are diagnosed at an advanced stage."

cancerresearchuk.org/about-...

You should speak to your wife's oncologist or consultant and tell them what you've read and ask all your questions.

I researched my own cancer (clear cell) but you need to ignore the cr&p that is out there amongst the scientific and up to date papers.

Take a deep breath and relax. Stats are generally out of date and don't reflect advances in treatment NOR individual women.

Take care

Clare

[Hidden]

Believe in your wifes medical team and stay away from Google, yes indeed stats are outdated. It is natural to be worried but you must stay positive, we have plenty of women on the site who have been around for quite some time including myself. Maybe not with that particular form of OC but with OC and doing quite well

[ssjmichael]

Trust her doctors. There is a strong possibility that she can be completely cured of this. And with regards to Grade 3, that typically means the cancer will respond better to chemotherapy. You don't really want Grade 1 or 2 if going through chemo as chemo attacks fast moving cancer, not slow. I believe most people diagnosed will have grade 3.

Also keep in mind that 5 year statistics are always dated by nature, and treatments are constantly improving every year. Over the last year, while doing research, I've seen big strides in treatment options, with things like immunotherapy, anti-angiogenic drugs, chemo combinations, etc..

And finally, that 25% number may be skewed due to the fact that it is such a rare type. Just think, it makes up just 1% of all ovarian cancers, so they got a study group from such a small population, so it couldn't have been from a huge number of people, but very likely a small sampling. The smaller the sample, the greater the possibility of variance. So it may not be all that representative of your wife, especially with the constantly improving treatment options.

[lesrouge in reply to ssjmichael]

"And with regards to Grade 3, that typically means the cancer will respond better to chemotherapy. "

Wow- that's totally news to me? I'd never heard that before. (admittedly 3 days ago I'd never even heard of a teratoma, and two weeks ago I knew nothing about ovarian cancer!).

I did think that because it's an extremely rare cancer that a lot of the figures had been cobbled together from really old studies.

To be honest, I'm cursing myself- I KNOW I should just trust what the specialist is saying (how would the flipping internet know more than the man who has her scans in his hand?)- but I'm a little addled because this has all happened so fast!

6 weeks ago we were booking holidays for Christmas. Since then we've been told she's got ovarian cancer, she's had surgery and is booked in for chemo next week...it's knocked us sideways.

[ssjmichael in reply to lesrouge]

Yeah, a lot of chemotherapy attack the cancer by inhibiting mitosis, which is when the cells divide. So faster dividing cancer cells (like in Grade 3) are much more likely to be eradicated by drugs like Taxol, than a slow dividing cancer cell. It'll still target them, as all cancer cells tend to grow faster than normal cells, except stuff like hair and nails (which is why those are also more likely to be affected by chemotherapy too), but from everything I've read, the faster the divisions the more vulnerable it is to chemotherapy.

[Maus123]

Sorry about the news in general. It does knock you sideways, but it will get better and you will eventually start planning again.

Is it stage or grade? It's very confusing but grade typically describes how differentiated and aggressive the tumour cells are (used to be 1,2,3 but now called low and high grade), and stage describes how far it's spread. High grade might take better to chemo than low grade. But check with your medical team please as I have no idea how this rare type is labeled.

All the best for the op.

[lesrouge in reply to Maus123]

Thank you It's a grade 3 tumour- and probably staged at 3 also (it's spread to her omentum, most of which has now been removed).

I had no idea until ssjmichael above mentioned that the more aggressive tumours react better to chemo.

I'd read (in hindsight probably "wrong" or at least dated) information that the higher the grade the poorer the prognosis (significantly so!).

But, I guess that's not strictly the case...