Ovarian cancer/Endometriosis
Posted , 3 users are following.
Hello Ladies,
I have recently had a laparoscopic surgery to remove my 10cm big ovarian cyst as a result of my endometriosis. After the surgery I've been told that everything went fine and that they will see me in 3 months time just to check everything is healing as it should. However earlier this week I received a letter saying an appointment with gynaecological oncologist has been made for me without giving me any clue what's the appointment about. I haven't slept ever since then as I'm worried I may have an ovarian cancer since the appointment is with Oncologist. I have tried to call the hospital if they can give me more information about my appointment which is happening next week but with no success therefore I'm turning to you to find out if there is anyone with similar experience who could tell me if it's normal to see oncologist after cystectomy or if it indeed means that I have an ovarian cancer? Many thanks!!!
0 likes, 9 replies
charlotte1824 silvie11260
Posted
You need to go and see your GP or call the surgeon that performed the cystectomy and ask why you have recieved this letter, they cant send you something without having discussed it with you first.
This could be an error so try not to panic, easier said than done i know.
How old are you?
Honestly phone your GP today and explain whats happened and that your not sleeping, your GP will im sure get on the phone to whoever they need to speak to to find out what is going on, i doubt they will take kindly to thier patient being blindsided by something which is obviously going to scare you.
silvie11260 charlotte1824
Posted
Hi Charlotte,
Many thanks for your words. I've managed to speak with someone from the referral office today. They said it's nothing serious but couldn't tell me what exactly is the appointment about either so I guess I'm gonna find out tomorrow at the actual appointment. I hope this is just a routine thing they forgot to tell me about!
I'm 24
aitarg35939 silvie11260
Posted
We're all pulling for you, sweetie, and we're always here.
silvie11260 aitarg35939
Posted
charlotte1824 silvie11260
Posted
I just wanted to check how you got on yesterday at your appointment?
X
silvie11260 charlotte1824
Posted
Hi Charlotte,
it wasn't a routine appointment as I hoped instead I've been told I have a borderline tumour on my right ovary and that I will need loads of other tests done to see what exactly I am dealing with. The oncologist also booked me and appointment with fertility specialist to help me decide whether I should have the ovary removed or not. I'm gutted! I now pray for all the tests to show no abnormal activity and hoping that couple of surgeries will fix this although I may never be able to have children. Just trying to process everything at the moment.
aitarg35939 silvie11260
Posted
Oh Silvie, I am so sorry. This is such a lot to deal with.
You are on paper only a little younger than I was when I had a total hysterectomy at 27. But those 3 years between 24 & 27 contain a lot of life & a lot of love life so I won't say that I know exactly what you're going through. I know a little, though. By the time I had my surgery we were lookingat ovarian & cervical cancers. You for sure are looking at one of those. I was in law school at the time. Before I had my surgery another student whose name I barely knew came to talk to me. She'd had everything removed due to ovarian cancer, at age 21! She just wanted me to know that there was yet some life beyond having such radical surgery at such a young age.
We don't know yet how much they'll take in your surgery. There may be talk of leaving one ovary "even though we know we might have to come back for the other ovary in a few years." That's what endo women hear all the time. IF you hear such a line, ask the speaker if s/he has ever had major abdominal surgery, & had it twice several years apart with time for adhesions to grow. Because unless they answer yes, they cannot blithely say what a "small" thing that 2d surgery is, both physically and emotionally.
You will feel afraid & alone off and on. This is normal. But we are here, to share those feelings and an almost infinitesimal bit of your burden. We do know those feelings of fear and feeling so freakishly different from all of our healthy friends. So reach out, even if only to say, "I hurt inside & out." We will be here.
Just FYI, there's probably a forum for ovarian tumors & cancers. And I just remembered: my grandmother lived to just shy of her 96th birthday with a large benign tumor. It was the size of a 5lb. baby, but it never hurt her. Not that I'm saying you should live with a benign tumor, but I am saying that not all tumors are cancerous. I hope that you can hang onto that until you know what kind of tumor you've got.
Remember, we're all with you.
silvie11260 aitarg35939
Posted
Thank you so much for your support!!!
I've been told it's a borderline tumour so apparently it's not a cancer but the oncologist recommended to have the ovary taken anyway as there is a risk it could start spreading in a future and eventually become a cancer. I'm not sure why they have to do all the tests including another lap to do biopsy if they already know what it is. Makes me worried that they are not 100% sure and it could turn out to be a cancer after all (of course I started thinking of all these question after my appointment so I didn't ask). I'm having MRI next week so hopefully someone there will be able to answer my new questions.
aitarg35939 silvie11260
Posted
We all have those "after" questions when it's something new. Write them down now before you forget them, and add others as they occur to you. The tricky part is remembering to take the questions & ask them.
If you're in the States, the MRI techs won't tell you much of anything, not allowed to by law. So if you're here, you'll have to wait. Some kind docs call pretty quick while others make you wait.