Hope you don't mind me sharing this

The situation started with a swelling to the left of my tummy button earlier in the year. I had FIT and blood tests (all clear). I  had an appointment with a colorectal consultant who arranged for me to have had a colonoscopy (all clear),  and a CT scan. The colorectal consultant felt the problem was gynaecology / urology related and spoke to gynaecology and urology colleagues about me. I had an appointment with a gynaecologist whom we could hardly understand and, without asking if we wanted to see the scan, turned the screen towards us. I had no wish nor need to see what my insides looked like. I felt he should have asked if we wanted to see it. He said he would arrange for a biopsy.

5th July I had an appointment with an urology consultant who, I think it was after we told him that the gynaecology consultant had dived straight in with words about cancer, said, words to the effect of, we have to be careful with words but it does look suspicious, and he would wait for results of the biopsy before deciding what to do next; he thought the kidney looked okay.

On the 7th I received I a letter from the gynaecologist, copied to my doctors' practice. It said at the beginning that he had seen us in his oncology clinic, we hadn't known that - as far as we were aware, it was an appointment made by 'phone by a nurse the previous week for me to see a gynaecologist in outpatients; I was supposed to have received an appointment letter in the post but it never arrived. The letter was as if he was writing to a medical doctor giving medical terminology and diagnosis and the wording was very scary. Of course foolishly I looked up some of the words and wished I hadn't.

14th July I had a biopsy. The staff, nurses, doctor, receptionist, could not have been more caring. I told them about the appointment with the gynaecologist. They said no one should give a diagnosis before results received from a biopsy, he should have communicated well and explained about the biopsy, and I did not have to be seen by him again which was quite a relief. Whatever is going on with me, we should be able to understand what is being said. I have since spoken to someone in the hospital to the effect that we would wish to be seen by someone else.

Last Thursday I received in the post an appointment with the urology consultant to take place on 8th August. I rang his secretary to ask if it was for biopsy results and she said a follow-up from the previous appointment and she expected the biopsy results. The next day, Friday, I received a letter that was copied to me, typed on the 17th, sent from the urology consultant to my doctors' practice. He said in that letter things he had not told us such as the words advance malignancy with secondaries. He said it is not classical ovarian cancer because of the numbers, but. He used another c word as a possibility that the gynaecology consultant had used, one I had previously looked up but wished I hadn't. We were shocked, after he had said in our presence words to the effect of, we have to be careful with words but it does look suspicious..

Sorry this has been so long and I have been rambling. Doctors seem to be making life stressful. In the meantime, I still feel very well, have a good appetite and have not lost weight, other than a few pounds in the last few weeks / months that, hopefully, is just down to stress! I've even started to panic and think should I start feeling unwell from reading the contents of those letters? Why am I still feeling well?! Will I start feeling unwell soon?

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  • Mary 

    You have had a horrendous time 

    so have you not had a face to face at all with a diagnosis ? So they have diagnosed you with ovarian cancer by letter ? 

  • Thank you. No, other than the gynae consultant's meeting during which we could hardly understand him, because of his accent.
    In the copy letter (original to the doctors' practice), the urology consultant said it is not the classical one because of the numbers and they didn't know yet what kind it is. I am thinking of 'phoning his secretary on Monday to ask if he really intended me to have a copy of that letter. MY GP had said a couple of months ago that it was not ovarian because of the numbers.

    I understand that the gynae biopsy results weere being discussed by the gynae team yesterday.

  • Thank you.. I don't think any saint would have been crying as much as I have recently. I am not sure who is my consultant, it might be the doctor that I mentioned who I don't want to see again or maybe the most recent doctor that saw me. The gynae specialist nurse told me that the well known cancer hospital in London (not supposed to put its name) was reminded about it last Friday.

  • Hi Mary,

    I'm not surprised that you've been crying a lot - don't worry about this, as crying is a great stress reliever. I shed bucket loads of tears when I was diagnosed. If you haven't heard anything by the end of this week, phone your nurse and ask who your consultant is. You could then phone the consultant's secretary and see if she can shed any more light on what is happening. Make sure to let her know just how long you've been waiting.

    Kind regards,

    Jolamine xx

  • Thank you. You never know, the results might be there now waiting for the multidisciplinary team to look at them on Friday - optimist, aren't I? well, sometimes anyway. Yes, if I haven't heard anything by late morning (according to a leaflet, the multidisciplinary team is supposed to meet between 8.30 and 10.30am every Friday), then I would ring the gynae specialist nurse.

  • I decided to ring the gynae specialist nurse this afternoon, to ask if the results were back, and have left a message on her answering machine.

  • Good for you ,I think its the right thing to do ,its gone on for what seems like a long time when you're waiting for results from tests ,hopefully you'll find something out or a Date when you will instead of just waiting in limbo .

  • I had a good appointment with my GP this morning. She will be writing to the hospital about the time it is taking. I spoke to the gynae specialist nurse this afternoon who said results not back and that they are being chased.

  • Hi Mary,

    I'm glad to hear that your GP is chasing up your results as well as the hospital. Here's hoping that they make some headway.

    Stay strong,

    Jolamine xx

  • Thanks for letting us know Mary I've never known something take so long for something concerning health ,you did well to get in touch with them lets hope they now turn up rather quickly with good news x

  • Well done Mary for chasing your results. It's difficult when you can't get a straight answer about what's going on.  I've had a much more straight forward time with diagnosis and been treated very well by everyone.  That said, I've got secondary cancer in my lungs but feel absolutely fine.  I don't think I'm really going to feel bad until treatment starts in a couple of weeks.  Hope you get good news. 

    best wishes T

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