The first indication that there was something wrong was seeing a small amount of blood in my urine. This was late September. I already had a scheduled appointment at the doctors to see a nurse concerning my annual blood test results. I told her about the blood and she arranged for urine tests and further blood tests. This went on for a month.
Early in November there was a more substantial showing of blood. I phoned the gp surgery and arranged for a callback from a doctor. She put me on the cancer pathway and later that month I had an ultrasound and cystoscopy. Cystoscopy showed that my bladder was clear but the ultrasound indicated that something else was wrong.
A ct scan took place in mid December. I saw a doctor on the 9th of January who advised me of the cancer of my left kidney. The decision of the MDT was for surgery to remove the kidney and would take place within three months.
A few weeks later I had a conversation with the consultant who had decided that because of the size of the tumour surgery would be too risky due to the proximity of other organs. He suggested immunotherapy to shrink the tumour initially. He also arranged for a biopsy and further CT scan. The scan was on the 19th of February and the biopsy on the 18th of March.
I saw the oncologist on 5th March and again on the 25th. He arranged for the immunotherapy to start on the 7th of April. Unfortunately on that day my blood pressure was found to be too high and the procedure had to be cancelled.
After contacting my gp surgery I saw someone the following day. She took my blood pressure but would not increase my medication until I had taken readings for a week. I see a doctor on the 16th and am hoping my medication will be altered. I have a further appointment to start my treatment on the 23rd of April, fingers crossed.
Looking back it seems to have taken far too long to get to this point and I wonder if the cancer could have spread in the meantime.
Everybody I have been in contact with has been marvellous, I cannot fault them but it seems as though the system is against me.
Hi Librarian,
I am so very sorry you are going through all this. 
You are doing extremely well to hold it together under these circumstances...this is so stressful and worrying and seemingly the goalposts seem to be constantly pushed further with each contact within this system.
Regarding your fear that the cancer may have spread: of course this is a risk that we always dread, with any kind of cancer. Generally, it appears that RCC (the most common type of kidney cancer) is slow growing. I assume this will also include potential spread, but I am not a medic so am just going on all that I have read and researched since finding out about my own. It is still a heck of a long time for you to have to wait and worry, and I keep seeing others also waiting for kidney cancer treatment and I don't know if it's something to do with health authority area (mine was very on the ball) or something to do with the type of cancer.
I do hope your 23rd April start date will happen. Do you know how long you will be under this treatment, before surgery? At least once it starts, you know things are moving. I really feel for you with all these delays and cancellations. My mum had her breast cancer surgery postponed many years ago, because when they came to collect her in the ambulance and took her BP it was sky high. She was all packed and psyched up to go in, and she was devastated.
Hang in there, keep your finger on the pulse and chase up any delays. Whether or not delays will affect your physical health, all this is very stressful and stress is not beneficial to you. I sometimes wonder if those who run the "system", actually take into account the stress their patients are suffering whilst their "system" moves the patients slowly through! Perhaps it's down to funding - I have no idea, but I do hope your treatment journey is actually on its way now at last.
Hugs to you
I am so sorry you had to go through this during Lockdown! I hadn't had any health problems at all at that time (my very first was in 2022- 2023) but always dreaded anything happening to me as the situation was dire and I was scared that I would have a very very long wait for any kind of treatment, even urgent treatment!
I'm glad to hear you had a good experience in that regard. In other words, you had your investigations and treatment. I think the majority of people did, in fact, if it was a serious illness. But it must have been worrying simply because of the situation at the time, around the pandemic.
I hope you are fit and well by now (hopefully, long before now!) and send you more hugs
Hiya pups galore...nice to meet you.
You will find that the waiting, the unknown is the worst. I am presuming that you have seen the urologist now. Have u been given the phone numbers for the nurses etc. I would advise that you contact your team and tell them you are feeling worse, listing your symptoms, new and old and explain how anxious it is all making you feel. They can give you more information and hopefully help settle your mind.
The main thing about kidney cancer is that it is usually slow growing. Hence the urgency we feel, the consultants feel differently.
If u join the kidney group on here and fill in your profile (this helps by not having to repeat yourself and gives us, ur new friends a better chance to support and help u along)
Honestly this group is a life saver, such love and help and support.
So tomorrow make ur list and ring your team nurses...
here for you
