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?

  • Awful ! 

  • That’s just unbelievable!

  • True.

  • Yes, quite unfunny really.

  • Hi Mary,

    This sounds totally unacceptable. Have you contacted PALS (The Patient Advice and Liaison Service)? This organization offers support and advice and can help to resolve problems, when you're using the NHS. You can find the telephone number of your nearest PALS office on the NHS website, or there may be one in your hospital.

    Kind regards,

    Jolamine xx

  • Not yet, I might think about that, thank you.

    I am bemused currently by an email received today with the subject  Pre-Clinic Preparation For Your Upcoming Visit

    Hello,
    You have an upcoming appointment on 13/10/2023.

    etc

  • That was from the well known cancer hospital in London, with a do not reply email address.

  •  Sorry Mary , but I think you should contact PALS , your call of course x

  • Its hard to believe this started at the beginning of July and you still have no answers ,I would definitely take Jolamine's advice and contact PALS ,my friend was waiting for results earlier this year  they'd said she wouldn't get results until the middle of the next month she was in an awful state when she rang them but within a few days she had a phone call from her GP telling her it was nothing serious ,they'd said something about there being no one available to speak to her .

  • Offline in reply to LCR

    I may well do but shall have to word it carefully. I shall write this to both of you. I put my real name in by mistake so asked the moderators to remove it! (we are asked when we register not to use our real name).

    Anyway, I understand that the MDT at a well known cancer hospital in London has discussed the biopsy results and that the MDT at my hospital will discuss the results at their weekly meeting this coming Friday, and I will have a telephone call Friday afternoon to give me an appointment  to see someone at my hospital, presumably ASAP.