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?

  • 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.

  • Hi Mary,

    See if they do actually get back to you by Friday, but contact PALS if not.


    I sincerely hope that you do hear from the hospital this time.

    Kind regards,

    Jolamine xx

  • I really hope and pray that you have good news on Friday Mary ,hopefully they will let you know what the appointment is for x

  • Thank you. Sent to both of you - the gynae nurse,had not known about the appointment at the well known cancer hospital in London before I forwarded the email to her. She contacted me just now to say she has cancelled that. and, to save time, she has made an appointment for a consultant to see us  Monday 16th, and she will go through the biopsy results and outcome of the MDT meetings. The gynae nurse,will contact the well known cancer hospital in London to tell them about Monday's appointment and to ask them to make contact directly with me to arrange an appointment there. It will not be easy to travel there but we will find a way.

  • Thank you. Sent to both of you - the gynae nurse,had not known about the appointment at the well known cancer hospital in London before I forwarded the email to her. She contacted me just now to say she has cancelled that. and, to save time, she has made an appointment for a consultant to see us  Monday 16th, and she will go through the biopsy results and outcome of the MDT meetings. The gynae nurse,will contact the well known cancer hospital in London to tell them about Monday's appointment and to ask them to make contact directly with me to arrange an appointment there. It will not be easy to travel there but we will find a way.

  • Offline in reply to Mary.

    At last you’ll be getting som answers Mary xx 

  • Offline in reply to LCR

    Yes indeed :-)
    The gynae nurse has rearranged the appointment in the well known cancer hospital in London for Friday 20th.

  • HI Mary,,,

    I'm delighted to hear that you finally have a definite appointment through for your local hospital on Monday. I'm sure that it will be a relief to hear something at last.

    Kind regards,

    Jolamine xx,

  • I'm pleased to hear you have now got 2 definite Dates so you should find out what is causing the swelling and what they intend to do about it ,if anything ,I'm still a bit puzzled as to why you have to go to both hospitals but regardless I really hope it all goes well on Monday and then go from there Mary .

  • Thank you. My local hospital hasn't told me this but the email I received on Monday from the hospital in London said the appointment would be in the sarcoma surgery clinic. Yes, we are puzzled too. We are currently trying to work out the journey up there.