March 22 had surgery to remove nodules in pelvis area.of first diagnosed September 2013 surgery and chemo.
This is treated as a recurrence. At the same time as recurrence CT showed mass on left kidney by urethra described now as chronic kidney disease. . As gynae department have the lead I have lost confidence in them a catalogue of rubbish appointments no real communication between departments. To day I was told clearly that if I don’t have the stent it will be dialysis and ultimately organ failure. I asked why can’t I have chemo or maintenance I’m BRCA 2. Dr said if they remove mass it could be considered. I just get mixed messages from two different tumour sites. In the mean time feeling pretty rubbish. On top of all that this Monday I go in for a complete hip revision, I have had 5 dislocation in 10 months. Urology say I need to wait 2 to 3 weeks Orthopaedics say it’s okay. Apologies for verbal spillage. Feel a tad abandoned. Great start to 2023!
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Deesales
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I agree, do seek a second opinion. We have enough to put up with without having no confidence in our clinical team. They may say the same but you won’t know if you don’t try. What have you got to loose? Good luck. Gill X
It seems like you need two second opinions, one gynae and one nephrology. And possibly a PET scan to determine whether the kidney mass is malignant. Good luck with everything! Xx
I have a mass near a kidney blocking the uretha , my oncologist, who, I really trust , told me that removal would be a 7hour surgery and if I survived the surgery, the rehab would be long and hard . The urologist put in a Stent, but it was too painful and was removed so and now I have a bag. I am 78 and declined more chemo since my quality of life wasn't good . My doctor put me on immunotherapy which is keeping me fairly stable and a much better quality of life . I am sorry that you are feeling so miserable and hope you get help soon . By the way, my Dr is married to a surgeon and trust her judgment. Good luck moving forward. Gillian
thank you. That’s more or less what the urology consultant said to me. They don’t seem keen to give me any maintenance treatment. I’m now on my third stent with low dose antibiotics or else I constantly get UTI. Feel a bit abandoned as no follow up appointment.
The UTI s are debilitating and I don't do well on antibiotics. I sincerely hope that you can find the support you need to help you through this tough time . I really need a hip replacement , but my Dr said no . I haven't had the dislocations that you have had though, just discomfort at times . It seems , that there is always something . I wish you the very best and you are in my thoughts , let me know how things are moving forward .Gillian
Thank you for your post. I’m really sorry to hear about these recent challenges and that you have been feeling abandoned. Please know that we are here to support you if you would ever like to talk things through. I can also see you’ve had several replies from the forum community sharing their experiences, which I hope has been helpful.
As getting a second opinion has been mentioned during this thread, I just wanted to share our information resource - which outlines this process, alongside some of the possible advantages and disadvantages: ovacome.org.uk/getting-a-se... . I hope this will be useful.
I also wondered whether you have had the opportunity to discuss your concerns with a clinical nurse specialist in either the gynae-oncology, urology or orthopaedic departments? I hope that they may be able to provide you with some personalised advice whilst considering your individual medical situation and personal circumstances. The PALS (Patient Advice and Liasion Service) at your local hospital may also be able to offer guidance and support, with more information about how they can help patients available through this link: nhs.uk/nhs-services/hospita... .
If you ever wanted to talk things through with a member of the Ovacome support team, there are lots of ways to contact us. You can call our support line on 0800 008 7054, email us via support@ovacome.org.uk or send us a message directly through this forum. We can also schedule 1-to-1 video calls if you prefer, with more information about this service available on our website: ovacome.org.uk/forms/1-to-1... . We’re here to provide information resources, help with queries, or prepare and plan for appointments with your clinical teams if you think that could be useful. We can also just have a friendly chat about anything that’s on your mind. We’re here for you Monday – Friday, 10am – 5pm.
I hope that you’re able to access some clarity and reassurance about the next steps in your treatment very soon.
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