Anyone with any experience or knowledge of "germ cell" ovarian cancer?

[Littlefish]

That's it really, my beautiful 18 yr old cousin has had an enormous tumour removed (the size of a 30 week foetus (sp)), and will start chemotherapy on Monday.

I don't want to frighten myself by googling, as all the info I've heard so far from other family members has been bad enough.

Has anyone got any experience or knowledge? The cancer is a stage 2 cancer. She is being treated with very agressive chemo. The tumour grew in 2.5 months from a cyst size.

[maybebaby23]

I googled for you and found this

Germ cell tumors of the ovary have a much better prognosis than other ovarian cancers, in part because they tend to grow rapidly to a very large size, hence they are detected sooner.

Other than that i really don't know anything about it. Im so sorry to hear your cousin is poorly Hope she gets well soon.

[Littlefish]

Oh maybebaby - that's really kind of you. That does sound more positive - and therefore, just the kind of thing I need to hear! I know that hers was found pretty quickly, and that because she hasn't had time to get ill from it, they are able to treat her very agressively.

Thank you for your kind thoughts.

[Littlefish]

Shineon - thank you for responding. It's fantastic to hear that your mum is cancer free. I shall hold onto that thought.

I've been told that the chemo will be very agressive, so that fits with your mum's treatment too.

As far as I know, my cousin has only had one ovary removed, but the other ovary plus her uterus are still there. Could this be a good sign that the don't think the cancer has spread?

[Littlefish]

Thank you for all the information Shiney. I'll speak to my cousin or her dad about all the points you mentioned.

I'll see if I can find out what drugs she's on.

I haven't heard how the chemo went today. I'm trying to get the balance right between being supportive with my texts/e-mails, and not wanting to badger them for information. It's so hard!

My cousin has beautiful blonde hair - it's one of her best features, so I know that the hair loss will be hard for her. I'll try and speak to her about the cold cap though.

Your description of the chemo as "belt and braces" makes perfect sense. Thank you for explaining it.

[ABetaDad]

I echo what Shineon says. My DW had ovarian cancer about 11 years ago and she is in remission after having one ovary removed and two sets of chemo.

The label 'stage 2' sounds so simple but me and DW are biochemists and we did a lot of Googling of original medical papers and complex clinical data on US websites. It was clear to us that there are a vast range of ovarian cancer types and survival rates. It is not just as simple as Stage 1, , 3, or 4. It all depends on how aggressive the cancer is and how well the cancer cells take up the chemo. It is an extremley complex science and your cousin should ask a lot of questions and ask for second opinions. Our specialist oncologists encoraged that as they acknowledged diagnosis is very imprecise.

The doctors will be fighting to save your cousins fertility too as she is such a young woman but she must prepare herself that she may never have children if she has to have a hysterectomy. She will need huge support if that happens but she is a good way away from that yet. My DW got down to 24 hours away from having the operation but the specialists took one last look at the samples and decided to hold back and give DW one more round of chemo. She survived and we have two lovely DSs now aged 9 and 7.

On the hair loss issue, my DW had the cold cap but she was prepared to buy a wig from a really good wig maker in London. Your cousin may wish to do the same.

Good to hear your Mum is OK now shineon.

[Littlefish]

AbetaDad - thank you for your message.

The cancer was very agressive - and we are waiting to see how well the chemo goes.

She is being treated by a top oncologist in London whose credentials were well researched by her father.

That's interesting about the fertility issue. I mentioned it to my cousin's dad, but he quite rightly said that their main concern was saving her life at present. It's great to hear that your DW went on to have 2 children. Congratulations!

Re. the hair loss - my cousin's family are in the fortunate position of being able to afford really good wigs etc. when necessary, so I might come back to you and ask for your recommendation.

[Littlefish]

Just thought I would post a quick update. My cousin finished her chemo about 5 months ago, and has been told that at the moment, the cancer has gone!

She's had a subsequent check up, and so far, things look good.



She is an amazing girl and has approached her treatment with good humour and resilience. We are all so proud of her.

[algee]

Littlefish...i am approaching the 12th anniversary of my own diagnosis of an ovarian germ cell tumour. Each November I attend an appintment at Charing Cross hospital where the top man apparantly was based at the time of my diagnosis. Each November so far I have come away with a big smiley relieved fce.

I am well. Of course everybody has a diferent experience, but didn't want to pass your post over without saying all can be well...I'm told there is very lttle chance of me facing that particular brand of nastiness again.

So glad your cousin is doing well.

[Littlefish]

Thanks Shiney

Algee thank you so much for your message. I will hold onto your good news story and hope and pray that my cousin has the same outcome. Good luck in November for smiley relieved face number 13.

[Littlefish]

How quickly things change

I've just heard that my cousin's cancer has returned. It is now in her lungs, pelvis and between her kidneys. The prognosis is not good. We are waiting to hear what (if any) treatment is possible.

Fuck.

[ajandjjmum]

So sorry.

[Elibean]

Oh Littlefish

I'm so sorry.

[Littlefish]

Thank you. It's really shit.

[Elibean]

Really shit, and really really shocking. dh's nephew had bone cancer at that age, I don't think any of us could quite believe it, hard as we tried to get past that. Thinking of you and your family, Littlefish, take good care of yourself.

[teatotal]

Hello, So sorry to read about your cousin. My family are also going through a similar nightmare. Doug Kaufmann on knowthecause.com has a book called The Germ That Causes Cancer, click on STORE to see his books. His site is very informative as are his videos/tv. x

[Littlefish]

Thank you for the info teatotal. Best wishes to your family too.

[Cakesandale]

Littlefish I am so sorry to hear about your cousin. I am sending all good wishes - but I'd advise you to be more than a bit cautious about some of these erm... unusual websites and books that teatotal mentions. She's come up with a few over on the breast cancer threads and they haven't been helpful or well-received.

I don't want to cause a row or divert the thread so I'll be off, but I did think it was important to advise caution.

[Littlefish]

Thank you cakesandale. I had a very quick look at the website, but realised that it will not be helpful in our situation. Thank you for your concern.

[sandripples]

Littlefish - just want to send you my best wishes at a difficult time. I was so sorry to read about your cousin's cancer having spread. I've just come through chemo myslef and it must be so frightening to have this news. Wishing you strength.

[Littlefish]

Shiney and sandripples - you are both very kind to post. Thank you.

Sandripples - I hope your chemo has a positive outcome.