Hi all
i underwent a total hysterectomy a couple of weeks ago for what was thought to be a benign fibroid, ovarian cysts and some endometriosis. I was called back in by the gynaecologist yesterday and he said clear cell cancer was found in one of my ovaries. I have been told that I need 6 sessions of chemo. I am back to hospital to see an oncologist next week and as this is completely new to me what questions should I be asking ?
Dear Snoopy
This must all be a terrible shock to you. Each one of us is different in the amount of knowledge we want to process after diagnosis.
I think I'd want to know exactly what clear cell cancer in an ovary means in the longer term. Is it something they can treat and have reasonable expectation of a complete cure. I hope with all my heart that this is what you will hear.
Your hospital is likely to refer you to an oncology nurse who will have a lot more time than the consultant to answer practical questions about having chemotherapy, organising sick leave, etc. They are also likely to have booklets about Ovarian Cancer and the chemotherapy you will have.
Most of us are given two different sorts of chemotherapy called Carbo-Platin and Taxol. Hopefully everything will be explained to you and you will be shown the Chemotherapy Day Unit and meet some of the staff so any worries you have will be allayed. I was terrified at the idea of having chemotherapy but in the event I found the staff were brilliant and very supportive and it really was very ordinary - almost boring. It wasn't painful and it wasn't upsetting - though some people are unlucky and suffer with side-effects. These most often happen for a couple of days afterwards and if you do get any they tend to follow a pattern which makes it easier to cope.
I do hope you're resting and not lifting anything. That is critical after a hysterectomy - and sometimes difficult as the weeks go by and you begin to feel stronger. They recommend 6 weeks to recover for a very good reason - to avoid adhesions and pain in the future.
I'm sure they're be many more helpful posts which will be very comforting.
I shall mention another thing - in creating your blog you have used the default (recommended) setting and this will list it in a Google search and it can be accessed by anyone. You may wish to change the privacy setting on your blog. To do this click on 'edit' at the top, then in Section 3: Preview and Publish, click on the Radio Button by 'Blog is visible only to members of this community'. This means your blog and any comments are visible only to people who are registered as members of this site and have logged in.
Good luck for next week. Let us know how you get on. Keep posting!
Love Annie xxx
Hi, sorry about your news.
I suppose the first things that spring to mind is what chemo regime will you be given, and when does it start! This may seem obvious, but I had problems getting an original start date from my oncologist after my diagnosis. You should be given a full disclosure about the chemo you will be given, with its side effects and what and when you should call for advice. I would expect you to be given a 24 hour emergency number for if you ave any problems, don't be afraid to use it, the nurses and doctors would rather you called for reassurance than worried, if you have a temperature over 37.5 always call them.
You should be given a specialist nurse, or similar, that is another contact. Mine is wonderful! Again, they are there to answer any questions, and give you valuable support.
The only other thing I can think of at the moment is do you know you are entitled to free prescription for the next 5years? Your GP can deal with the form, if you need to pay for any before the certificate arrives get a receipt, you can then claim back your costs, I think it's from when the form is done, so don't leave it.
Hope all goes well for you and good luck
Chris
Hi
Welcome to the club that no one wants to join, you must have got a lot of questions going round in your head already, write them down as they pop into your head, then when you visit your hospital you will have a list of questions to ask at the ready, don't be afraid to ask question, no question is too silly, and the hospital staff will be glad that you are organised enough to have them written down, because when you are there you will forget otherwise, try also not to vere off the questions you want answered (this is easy to do) it can be very frustrating to come away with unanswered questions, you could even write the answers down if you so wish.... You can either go to the Ovacome website as they have information or the Macmillan website they will have a list of questions you might want to ask. Best wishes love x G x
Thanks for your your speedy replies everyone its really helpful. I just got such a huge shock yesterday as a minute into the conversation with the gynae we were talking about cancer which was the very last thing i expected. I also had a more routine appt at another clinic at the hospital straight afterwards so it was a case of 'holding it together 'yesteday whilst feeling emotionally numb and close to tears all day. So pleased i will be back to the hospital early next week as i will feel much more prepared for a sensible (and coherent !) conversation on my part.
Hello Snoopy
You've had a terrible shock but its a good thing you've found this site. You've already had some good advice. I am also clear cell and these are the questions I think you should be asking.
What stage was the cancer? Mine was 1a, the earliest possible after borderline.
Was it contained within the cyst?
Was it removed intact?
What else was removed? Omentum? appendix? We're any samples from lymph nodes taken? Was there any evidence of spread?
What are the options re chemo and what is viewed as best practice? I had 6 cycles of carboplatin only.
Hope this helps a bit I preparing for your appointment. Do let us know how things go.
Linda xxx
I can't really add anything to the helpful comments here especially Linda's. I just want to send you my warmest thoughts and prayers.
Hugs!
Xoxo
Erika
Thanks so much for the list of questions that is so helpful 
Feeling much more informed today so when i go back to the hosp on Tuesday i will make sure to take my list of questions with me .thank you so much, really appreciated.
So sorry you'ge had to join this site Snoopy but you will get tremendous support from all the ladies on here. My only advice would be to take someone with you. My hubby came with me on every appointment and managed to take in a lot more than I could as like you I was reeling with the shock of it all. Be strong and take care Kerry xx
Hi. Yes, the Macmillan website will give info if you want to look up ovarian cancer. Or cancer research uk website, looking up ovarian cancer. Sorry you have got this, but it sounds hopeful that they have got it quite early. You will get a lot of info from these sites.
By the way, I am a retired GP with primary peritoneal cancer, which is related to ovarian cancer. I had no trouble really with carboplatin/taxol, and it worked well, as it usually does.
(Sorry to bore others who know I am a retired GP, but I keep mentioning it because of new people like yourself.)
Best wishes.
Eileen xx
Hi Snoopy.
Kerry's advice on taking someone with you is so true. My husband and daughter came with me and am I glad they did because when oncologist asked if I had any questions I calmly asked " is there WIFI on the unit? " Everything else had just gone completely over my head. By the way no there isn't WIFI on the unit. Lol.
All the best with the appointment
Love
Jean. :-p. xxx
Hi Snoopy
Sorry you have to ahve found us, but you are among friends on here! You might find some more info on staging and grading and treatment etc on the Ovacome website. Apologies if you have already found it. It's dedicated to patients and families with OC. It's ovacome.org.uk It's not the same as this site, but this site is linked. If you look through the options in the menu on the left, you may find some useful info before you have your appointment. There is also info about the nurse staffed helpline which is manned by Ruth, who has direct experience of OC. She is wonderful! It's on 08453710554 - Mon to Fri 10 - 5
Good luck in your treatment. Let us know how you're getting along.
Love Wendy xx
Hi Snoopy sorry to meet you here but it is a good place to be for support and advice, I am over halway through my chemo now and it has not been as bad as I expected. My nurse specialist told m e that the OC regimes are generally better tolerated than some of the others, but obviously we are all very individual.
Good advice on writing things down, I forgot to ask a couple of things myself last time but I suspect that there is also a bit of not wanting to hear bad news should it be coming, so try and stick with your questions and don't be rushed.
Much love Amanda xx
Thats brilliant thank you ! I have also been experiencing eyesight oroblems with both
Of my retinas for the past 12 months and my medical opthamologist said that we now have a diagnosis on the cancer front it confirms what he suspected has been causing the sight problems too ( something about paraneoplastic syndrome) so in a weird way i am relieved ( if thats the right word !) to know that the gynae problems have been causing other issues. Luckily i have no cancer in my eye itself but somehow have managed to get lots of inflammation which the opthamologist s hoping will now finally resolve
Great answers. Suggest if Oncologist suggests Carboplatin alone insist you want Taxol as well and ask about the no treatment option. i.e do nothing .Good luck.
Hi Snoopy
Welcome to this wonderful site! You will get the best support and advice( and occasionally join in some very silly moments!!!).
It must be a dreaful shock still but at least they do seem to be acting very quickly which is good.
I'd agree whole heartedly with taking someone along with you- even if it's only to natter with during what can be long- or seemingly long- waits in hospital.
Take care
Love and prayers
Anne xx
To ask or not to ask that is the question? UPDATE 
Just Diagnosed with OC
Poor registrar really didn’t want to go to work yesterday....
Just diagnosed
Just diagnosed 
