No overies but still got cancer?

I had my overies and falloping tubes and womb removed 17years ago and have just been diagnosed with stage 4 overian cancer????? I thought I did everything right to avoid getting this cancer but I was wrong. Have had two rounds of chemotherapy to no avail, no one can give me answers to how this can happen.

[WorriedHusband]

Annnora,

Sorry you're going through this.

Here is how it's possible to get ovarian cancer even after having your ovaries removed.

Total hysterectomy with salpingo-oophorectomy procedure removes your cervix and uterus as well as both ovaries and fallopian tubes.

This makes ovarian cancer less likely to occur, but it does not remove all risk.

You still have a small risk of what's called primary peritoneal cancer, cancer which develops in the thin layer of tissue that lines the abdomen, uterus, bladder and rectum

The cancer may result from ovarian cells that migrated to the peritoneal area (a thin layer of tissue that lines the abdomen) during each menstrual cycle before your ovaries were removed.

These cells can become cancerous later on.

Alternatively, since the peritoneum and ovaries arise from the same tissues during when an embryo develops, it's possible that cancer could arise from the cells of the lining of the abdominal cavity.

Source: Mayo Clinic

Best of luck

[Hidden in reply to WorriedHusband]

Hi worried,

Thank you for that information it explains a lot. I have never had children and underwent infertility treatment do I think this had something to do with it also?

[Hidden in reply to Hidden]

Also I underwent my treatment in UHL and now referred to Start James Dublin. I would never know I was sick only when I have pain which is not a lot. It's crazy.

[chrissapam in reply to Hidden]

yes I do but personally suspected a risk at the time I did this....we do need to live our lives and do the best we can....feel very sorry for you but you gave, it seems, everything your very best shot. Lots of hugs, Chrisxx

[85live4ever in reply to WorriedHusband]

Hi Worriedhusband, very good research this is the first time I have understood why it can come back even after its all been removed. Thank you for posting. Take care Cindyxx

[Howick01]

You are not alone.A lot of people think that once everything is removed you are 'cured'.

I have had to explain this to a few when I was diagnosed and this included nurses.

OC is not straightforward unfortunately.

Take care.

[Katsmum]

Hi Annnora

There are quite a few of us in a similar situation and primary peritoneal cancer is treated generally the same way as OC. I had a full hysterectomy followed by radiotherapy 20 years ago so in a similar situation as you.

Wishing you all the best and hoping that they can find a chemo that will knock the beast back for you xx

Jane

[Neona57]

I'm sorry that you have this and hoping you find the right treatment very soon.

[85live4ever]

Hi Annnora, I am so sorry to read they gave you a sale by date. I was given 6months & that was with chemo. I have made 2 years 5 months.

You are so right not to believe it because no one knows how long anyone has. You could do very well on the treatment you are offered & if not they can offer you others. You can always ask the lovely group on here for advice to help you a long. Take care Cindyxx

[Hidden in reply to 85live4ever]

Hi Cindy

Well done to you keep going and stay strong.

Annora

[85live4ever in reply to Hidden]

Hi Annnora, thank you, it's the biggest fight of my life so far. I have found the information on here very useful in helping me to fight it.

Good luck on your second opinion & do keep us up dated. Take care Cindyxx

[Hidden in reply to 85live4ever]

We are all together in this, I'm sorry to say I'm glad we are not alone.

[85live4ever in reply to Hidden]

Hi Annora, yes, as long as we are on here we are not alone. We do need each other because this is such a dreadfully horrible disease that the comfort of others cushions our fears, push our determination further & make us able to fight on.

You said your 2 rounds of chemo didn't work. Do you know what's next? Or have they said you will carry on with the same treatment.

Has your care team looked into BRAC testing for you if not ask them? Also see if you might also be offer a maintenance drug. It things to look into. Take care Cindyxx

[Hidden in reply to 85live4ever]

Hi Cindy, I have been referred to the palliative care team pending my appointment at James in Dublin. Delighted to say I got this yesterday so heading for second opinion on 17th aug. My oncologist in Limerick says there are other treatments but is not sure what to give me.

[Sherryross in reply to 85live4ever]

Me too! I was given 6 months and it has been 2 years and 5 months same as you Cindy. Never give up right?

[85live4ever in reply to Sherryross]

Hi Sherryross, good to hear someone else has lasted longer than their sale by date. Yes, you are the same as me I was given 6 months & 2years & many months later I am still here. Good luck take care Cindyxx

[Hidden]

Hi Annora I think maybe St James Dublin is a good option for you. We also have a brill oncologist here in Cork who has kept me going for many years. Pm me if you want the name. I am sorry this has happened you but once you have a treatment plan you will feel more settled. I would also ask about genetic testing as if you are positive you may be eligible for Park Inhibitors which are taken orally at home. It's a lot for you to take in right now. So also check out 0vacare Website. 0vacare has helped me feel not so alone. There are coffee mornings in Dublin and Cork. There will be also a Patient day coming up in Dublin or Galway or Limerick possibly. Keep an eye on here and 0vacare page. All the best

[Hidden in reply to Hidden]

Hi Suzuki,

I will take note of your information for my meeting in Dublin.

Thank you,

Annora

[Hidden in reply to Hidden]

Sorry it should be Parp Inhibitors such as OLarib. Good luck with your appointment

[Hidden in reply to Hidden]

Hi Suzuki, how do I on u?

[Hidden in reply to Hidden]

Pm I mean sorry.

[sandirara in reply to Hidden]

HI Suzuki I am in Cork as well wonder if we have the same oncologist ?

[Hidden]

By the way I don't do sell by dates

[Mrs_Atko]

Hi Annora and welcome to the group although I am sorry you find yourself here. You have understandably had a massive shock and i'm sorry you were also given a 'sell by date' as others call it. Some people want this info, some don't. But most don't let it dictate their future. I hope your treatment goes well and you get all the answers you want from St. James Dublin, which will hopefully better equip you to get a handle of your situation. In the meantime, I am thinking of you and sending you lots of positive ((vibes)). Jemima xx

[MrsBeer2017]

Hi annnora . I have an appointment on Thursday at the cancer center for a ct scan and I'm worried and looking for some advice . like what symptoms u had ?

[Hidden in reply to MrsBeer2017]

Hi, my symptoms were feeling very bloated, tired slight twinges of pain in my left side, not able to eat because of feeling full after very little to eat and getting sick. I was dieting but putting on weight and it turned out I was full of fluid. Ask for an Ultrasound to rule this out. They drained 26 litres of fluid from me before they could see fully on scan. Good luck and keep positive 😉

[Hidden in reply to MrsBeer2017]

Hi, just thinking of you and how you got on with your scan?

[CancerCarerChats]

Hi Annora, you will find the most amazing advice on this forum and information first hand that a lot of doctors probably wouldn't even know! I would definitely visit the Ovacome coffee mornings that you have available to you to get as much first hand information as possible and answer some of your questions as unanswered questions can lead to unnecessary worry and stress sometimes. Best of luck.

CancerCarerChats

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