Ovarian dermoid cyst /pelvic tumour

[Iodjam]

Hi all I was diangnosed last November with an inoperable pelvic tumour squamous cell cancer arising from a terratoma of the ovary . I completed 6 cycles of carbo/taxol and 31 rt sessions. My tumour is localised with no disease anywhere else . My onc says great result from my scan last week but they still will not remove it and he says risk of bleeding . I am terrified as I am a 35 yr old single parent to a 15 yr old and from what I read online this is not good has anyone had this type of cancer and went on to live for many years

[Hidden]

Part of my ovary was left as they also feared major bleed, that was in 2006 I have had recurrences because it is there but I am 11 years down the road and doing okay, stable for now

[Iodjam in reply to Hidden]

Was it a pelvic tumour you had also I am reading about my type (I know I need to stay off google but I can't) and no one lives very long even with the great result I have the fear wont leave me actually terrified to ask the doctor

[estherg]

Hi lodjam,

I too had a mature cyst terratoma diagnosed in 2015 with an scc tumour but I did had spread outside of that on my large vein in my abdomen. I was 36 then. I had surgery but like that I had a large bleed during it. Have 6 monthly scan at the minute. I am now back to work full time now.

When I first met my oncologist she gave me good advice to stop googling the diagnoses and to put the idea of prognosis in a box at the back on my head and deal with fighting the disease. Now I am not saying it is easy and I am not a parent with that additional stress but I try to deal with the everyday.

Scans are always stressful times not on the day but the minute they are done my mind goes into our drive and I am terrified that they find something new. Then if I get any pains or symptoms you immediately think the worse but not sure how you can combat that as it is a natural response I think.

I think the thoughts of it spreading or getting worse are present in all our minds at some point but I guess we are lucky in one sense that we know we have a problem and they are keeping an eye on things for us with the scans.

Maybe you could ask for a second opinion or have a case review by another gynaecologist specialising in ovarian oncology to see if that is the consensus.

Hope this helps.

Hugs

Esther

[Iodjam in reply to estherg]

Hi Esther

It's great to hear from someone with the same tumour type as me we are a rare breed . I suppose I'm very anxious just for the fact they will not operate and it's gone so small now I thought they would. It's not very nice facing your own mortality as the saying goes ignorance is bliss. You are so right that at least we will be monitored. Prof has been consulting with another doc in London so I think they've exhausted all avenues and after radiotherapy they say because of scar tissue it's def a no

Hugs

Imelda

[Hidden]

Hi Imelda, my tumour was on the ovary and so near a blood vessel they couldnt take it all. I dont know much about my staging as I didnt ask and I dont want to know. I expect you will have reviews and scans regularly. Maybe seek a second opinion to see if Parp Inhibitors could now be used in your case or ask your own consultant, I know they are not available in every part of UK but its just a suggestion for you. You got reduction and I hope you will have many years cancer free

[Iodjam in reply to Hidden]

Hi Suzuki

I'm the same didn't ask what stage mine is at either and don't want to know . My oncologist here in Ireland has been in contact with a professor Ledderman in the U.K. . I've never heard of parp inhibitors what are they I must look them up. I am hopeful because I got a good result that it'll be many years the unknown is just so scary . It's great to talk to people in the same situation as me makes it a little less frightening . I wish the same for you keep kicking cancers ass

Imelda

[Hidden]

Parps are a form of targeted therapy that target the cancer cells. I am also here in Ireland, have you been along to any of the Ovacare coffee mornings or Patient Days, there is a patient day in November in Galway, these days are very informative and it gives you a chance to meet other ladies with OC. If you go to the Ovacare website you can register for that event in case you may be interested, You can bring a guest. I think when we finished treatment, we also feel insecure because the back up of the oncology unit is not there anymore. I do have a gynae liason nurse I can contact if I am worried. I have also used the services of Arc Cancer House, for counselling reflexology and Mindfulness. Your oncologist seems to be really interested in your care. I have the same Onc for 11 years now and I know that we are indeed lucky to have his expertise in Munster.

[Iodjam in reply to Hidden]

Hi Suzuki

I haven't went to arc house yet as I am under the palliative care team in Marymount for pain management which was so terrifying at first when you hear you need their help as far as I k ow they are releasing me soon they were waiting to see how my last scan went. Yes my oncologist is fantastic I'm so lucky to have one of the best in the country. My onc nurse has been on maternity leave since April and they haven't replaced her as of last week which is awful for both patients and the prof. I will definitely register for ovacare events as it's hard to meet people with ovarian cancer all through my treatment I didn't meet one other person . Thank you so much for your messages they are a great help

Imelda