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?

  • How are you doing Mary? 

  • Hi Mary,

    It is always hard waiting for results, but even harder when the results are inconclusive and they have to be done all over again. Many of us have been in this position and know just how unsettling this can be. What happened yesterday? I hope that you got a clearer idea of what is happening and why. It is always helpful to write down a list of any questions you may have prior to your appointment. This ensures that you don't forget anything important in the heat of the moment. If you can take someone with you to write down the answers as you ask them, this is also very helpful. Alternatively, you can record the conversation, with your consultant's permission.

    I hope that things move quickly from here on and that you'll soon know exactly what you're dealing with.

    Cancer treatments have advanced tremendously in the past few years and treatment is still possible in almost all cases.

    Please keep in touch and let us know know you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you. t was confirmed that the results of the biopsy were inconclusive; the lump / area from which the biopsy was taken was not cancerous. As there cannot be a plan without a diagnosis, another biopsy has been booked so we wait for a date for that. It will probably be taken from the swelling. If the results should prove to be inconclusive again, then they may resort to surgery. There was talk of an ovary being the problem. The staff were nice; the two nurses that were there we had met before. Sometimes I wish I had never gone to the GP in April because I feel fine and just want to get on with life!

  • Hi Mary,

    I hope that a date for the second biopsy comes through soon. I'm sure that you'll be glad in the end, that you went to see your GP, but it's difficult to feel like that at this stage - always better to be safe than sorry. It is good news that the first one was not cancerous and I sincerely hope that this continues to be the case.

    Kindregards,

    Jolamine xx

  • Thank you. 

  • The next biopsy won't be until September.

  • Hi Mary,

    It sounds as if they don't feel that there is any hurry for another biopsy, which is good news.

    Please don't forget to let us know how it goes.

    Kind regards,

    Jolamine xx

  • Mary 

    mum so happy you had good news xxx 

  •  It was ordered as being urgent. All the others are urgent ones too.

  • What good news, Lara?

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