Could there be another reason for this appointment?

[Mrsbonzo]

I am 8 years into the menopause and visited the GP when I started bleeding 2 months ago. Within a fortnight I had had a raft of blood tests, two scans (abdominal and TVS) and a hysteroscopy. I was told I had thickened womb lining, a very large polyp and a cyst on my ovary. A biopsy was taken of the polyp and a CA125 blood test carried out. I was scheduled for a second hysteroscopy to remove the polyp and fit a coil. When I went for my preop assessment I was handed a form to take to my GP to arrange a second CA125 test for after the second hysteroscopy. I asked what the CA125 result was and the nurse couldn't tell me.

I had the procedure three weeks ago and I found out then that the sample taken previously had been clear. It was another ten days before I got the letter though!

I had the second CA125 test a week ago and I asked the nurse at the surgery what the result had been previously and she scanned through my notes and couldn't tell me.

Then I had a letter from the hospital, sent first class and arrived on Saturday, with an appointment to see the surgeon on Thursday this week. I know the surgeon specialises in gynaecological oncology.

My question is: could the appointment be for anything other than bad news? My experience of the gynae department is that good news travels slow I am resigned now to the idea that there is something wrong and the cyst is something sinister.

[Lyndy2]

Hello, you sound very anxious, which of course is understandable. You have wandered along thinking you were getting a routine gynae exam and ended up in a horror movie.

I am sorry that no one has explained anything, that’s pants. Your team will be starting with the most serious possible outcome of your tests and working backwards to eliminate causes to end up with a diagnosis. Which may not be cancer.

People like myself who were diagnosed at a late stage have campaigned to get doctors to take women’s symptoms seriously, to suspect cancer and to investigate accordingly because we want more women diagnosed at an early stage, when they have a much better prognosis.

Unfortunately this means that people like you get the fright of their lives, with urgent letters and tests flying around!

The bottom line is that you are getting priority while they work out what is wrong and if it turns out that you do have OC you will get the treatment you need without delay.

It’s not easy going through this. Support is available, Ovacome have a helpline and MacMillan also support people who have not been diagnosed but are in the system.

Sending you love and best wishes, I will have my fingers crossed for a good result xx

[Skyeplus]

Like you I have had a very anxious week, it felt as if my world had turned upside down due to a call from a GP who hadn’t even read my notes. Your worry and concern is very understandable. Like Lyndy2 I was diagnosed late however it seems in your case that they are dealing with whatever it is quickly. I echo everything that Lyndy2 has said. You are getting priority and have an appointment with absolutely the right person, I.E. the specialist surgeon. I have found like you that nurses, can’t give feedback on things like CA125 blood tests unless they are the Specialist Nurses and should this be something, and it may not, you will be allocated one and have a team wrapped around you. There is lots of support here and Ovacome have a great website and helpline. Lots of love, try to stay positive. Ask lots of questions and maybe if you can take someone with you to the appointment. When I saw my surgeon months ago now, my husband was allowed in with me and it was a good thing as I didn’t comprehend at the time half that was said. Good luck Di xxxxxx

[Trickysite]

Limbo is always a difficult place to be. Take someone with you if you can, to take notes if notes are needed. And nothing is certain until it is certain. And even if it is OC, there is so much they can do. So, hang on to that thought. Fingers crossed. Emma x

[Mrsbonzo]

Thankyou everyone. I really appreciate you taking the time to reply to me. My best friend is taking me and if necessary will come in to the appointment with me. I have done the same for her. My husband will be a great support if the news is bad but not so helpful in the waiting period. My mind is full of "what ifs" and his attitude is "We'll work it out when we need to" but I need to talk.

Another friend was going through the same tests for the same reason at the beginning of the year and she waited three weeks for her results which were all clear so I will be very surprised if there is nothing that needs further investigation when I see the doctor tomorrow.

Our children are all adults and all but one have moved away and I am really conflicted about what I should tell them - one daughter is getting married in June and one is expecting a baby in August. The last thing I want to do is distract from the wedding and the baby - this should be a time of celebration for the family and I don't want to distract from that.

This time tomorrow the appointment will be over and hopefully I will be sitting in Costa with a well deserved cup of tea and will know what we are dealing with.

[delia2]

Hi. I hope there is nothing to tell but if you do get a cancer diagnosis, and you may not, it’s important to tell your adult children the truth. You can be honest but also focus on their upcoming events as something that gives you extra joy. Frame it to them that their wedding and baby are what will get you through any difficult treatments. Make it clear that you want them to celebrate and be happy. Xx

[Joanne59]

I was just like you 7 years ago tomorrow. My results showed OC stage 2B Serous Epithelial, I had a full hysterectomy and 6 chemos.I’m still here 7 years later with no recurrence . Don’t give up hope even if the outcome is not what you want. wishing you luck 😘

[lesleysage]

If I'm in time before your appointment tomorrow, my suggestion is to list all your questions and those of your husband and after the consultant had finished, you can refer to your list for any unanswered questions. After 12 years of two ovarian cancers and one bowel cancer, I can assure you that all clinicians much prefer patients who 'engage' and 'are interested in' learning more and working with the medical teams. If the worst comes to pass, you are forming the basis of a working and supportive partnership...and if you are ok, then my hope is you will feel really content with your thoughtful approach to a very scary situation.

Warmest wishes, xx

[Mrsbonzo]

Thank you ladies. I went out with a friend yesterday who knows the family well and she agreed with all you have said about telling the family so I will do that if necessary.

The only question that seems relevant to ask at the moment is "Are you saying I have cancer?" Anything else seems a bit premature but I will talk it over with my friend on the way and if anything comes up one of us should remember.

My appointment is at 11 a.m. but I won't be home until later this afternoon as my friend also has an appointment (different department, different reason) so we plan on having lunch out between visits.

[Mrsbonzo]

I had my appointment yesterday and the news was better than I expected. My ovaries are fine! The cyst is tiny - less than a centimeter - but he wanted to see me about the result of my second hysteroscopy. Although the polyp that was removed was benign there is an area of atypical hyperlasia which needs to be observed. He feels that the coil which is already in place will deal with it but I could consider having a hysterectomy. He will be ringing me in a week or so to talk further but his advice is to persevere with the coil.

Thank you all so much for your support over the past few days. I would recommend this group to anyone going through the anxiety of an ovarian cancer diagnosis/waiting for results.