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.

  • I emailed the gynae nurse yesterday morning to ask if she knew if the biopsy results are back, for the multidisciplinary team to look at them this Friday, but no reply, so this afternoon emailed the other gynae nurse who replied "Yes she is on annual leave at present. Your case is due to be discussed at the gynae MDT meeting tomorrow." I really must stop grumbling about communication, mustn't I?! but why didn't she do something to her emails before going away so that there was an automatic response such as "Sorry I am away, please email ......" ? .

    Do you watch Heir hunters? It's quite interesting, we find. "Your case is due to be discussed" sounded like the heir hunters, they talk about the case of somebody.

    If medical people were talking about my husband, I could cope with that because I would want to bear it all on my shoulders, but I just find myself not being able to cope with it, being about me. And yet it can't be? I am not in pain, feel well, walked to church and back this morning to have coffee etc. I don't want them giving me treatment for something they may say is wrong when I feel very well. Do you understand what I mean?

  • Mary I'm not sure when you'll hear the outcome after they've discussed their findings from your biopsy tomorrow but hopefully it will be nothing major ,it does seem really strange that you feel perfectly fine if there's something going on ,only time will tell it seems to have been going on for quite a while for one reason or another ,I bet you can't wait to be free of the system x

  • Mary 

    hopefully you will hear soon , it’s been such a long time you have been waiting how long has it been it seems like months rstger than weeks for you xxx 

  • Mary can see you started the thread over 2 months ago thst must be so annoying to wait this long , I would have thought if it was anything serious they would have told you by now I pray this is the case for you xxx 

  • Thank you. Nearly five months since I was first seen by a GP.

  • Going back to a comment you made a good while ago about not being able to chase up results due to you being in a different county. I've worked for the NHS for close to 20 years, and something you learn very quickly, there is absolutely nothing "national" about the "National" Health Service here in the UK. Absolutely nothing. Even staying next door to someone doesn't even guarantee you will receive the same service. It would be more apt to call it the postcode health service.

    Did you know up here in Scotland, the NHS is basically a different NHS from the ones down South? Good luck to anyone that moves from England to Scotland or vice versa should you need treatment for anything in a timely manner, not just cancer.

  • Yet with modern technology, it would seem only logical to be able to input a name and date of birth and see a patient's records instantly, I would have thought.

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