New to any online Community site, so hopefully I won’t make mistakes
Reasons for joining this community-
Last September I went to the A&E department with mild chest pain (My GPs won’t see you if it involves the chest) Had all the usual tests and was nearly sent home by the Doctor as he thought I was fine. I wasn’t convinced with his diagnosis. So he sent me to another depatment. Here I had a chest X-ray to find out I hand fluid on the lungs. A week later I had a ct-scan and the next day was given my results. I went from supposedly to being fine to a long list of lumps and bumps.
I had the fluid drained from my chest, and test results showed not cancer cells, the Dr still wanted me to have a Thoracoscopy, which was then booked for late October. Waited all day to have this done and was given morphine for the first time. And guess what me and morphine don’t like each other, so it was cancelled. I was then referred to a thoracic surgeon who seems convinced that is it empyema, but not 100% sure, and wants to delay surgery, this was December.
Whilst this was going on and was I also referred to Urology for a kidney lesion. This turned out to be a Bosiank III cyst 50/50 chance of cancer. They said they would keep monitoring Bosinak cyst. Saw them again in January and was told the same, "we will monitor." Not completely happy with this, as if you look on the internet, grade III Bosniak cysts are normally removed.
So five months have gone by and I am having a CT scan on the 10th of June. The nerves have started to kick in. My next appointment to see the thoracic surgeon is the 9th July and the Urology on the 1st August. This is going to feel like a long wait.
Has anyone else had to wait like this?
Hi thee mum2000, I’m also new to the kidney group, it’s my husband with kidney cancer. Let me start at the beginning it may help you a bit. July last year he noticed a lump at the side of his tummy, went to the doctor who thought it was a cyst, sent him for ultrasound and CT, he went for the ultrasound and they found 2 what they thought looked like cysts, both about 14cm so very big, he then went for CT and they said the same, the letter Said Bosniak cysts 3 or 4. I did the same as you and got the same results most likely to be cancer. My husband was booked in to have his kidney out hopefully by key hole, first op was cancelled, second op was cancelled as no HD beds, third time lucky but it was open surgery as it was so big, The op was 30 Oct last year, so about 3 months from seeing the doctor. Pathology report says grade 2. and stage pt2b Papillary RCC which in its self is a rare kidney cancer, so it was cancer, he had his first CT scan in March and we got results back in May saying there’s a 6mm nodule on a vein where kidney was and to have another CT scan July, I’m really worried about this 6mm nodule.
As I said I don’t know much about Kidney cancer but I can’t see why their not doing something about your cyst, I’d make a fuss knowing what I know now., maybe someone with more experience than me can help, Good luck X
Thanks for the reply How awful for you both. Sorry I’m not sure what you mean by pt2bpapillary RCC but it doesn’t sound good. Has your husband had any after treatment like chemo?
I really don’t understand why the doctors leave these Bosniak 3 cyst and just monitor. When I heard the word malignant, my first words were cut out get rid, easy!! Even on the few webpages I have found says the same “remove the cyst”. I have been to see GP with flank and back pain and all they have said it’s only a cyst it can’t cause pain.
Thought I was going mad and over reacting so in a weird way you have made me feel a little better Someone that understands at last
Hi and sorry, maybe I should have explained in more depth. As I said I’m very new to kidney cancer but I’m a kinda expert in bladder cancer as that’s what I’ve had for over 6 years and both seem to have very different treatments. Ok so my husband has papillary type 1 renal cell carcinoma cancer, the grade is 2 and the stage is pt2b which is stage 2, the pt2b means it’s more than 10cm. Pathology said the 30cm cystic tumer came out with clear margins. Papillary is a sub type of renal cell, not too clued up on it but I know that not as many people are diagnosed with papillary and not as much treatment, He’s having no treatment as kidney came out with clear margins and we was hoping that that was that, but now a 6mm nodule is showing up so another CT scan to see what it’s doing, I haven’t a clue what will happen if it does grow. I’ve heard chemos not so good with kidney cancer, so what treatment is given I don’t know.
I was hoping someone with more experience than me would answer you. I would defo ask why their just leaving it if they believe it to be malignant. Please come back and let me know how you get on. Xx
We Hiya. I’m clueless really. Mine only measures 1.6cm on the lower lope of right kidney. The hospital docs don’t seem to have time to explain things when I go. I did watch a video today that said they have a lot of success treaty kidneys but it didn’t say which type. The site was called mayo
Off to sunny Skeg for the weekend time relax before Monday And please keep me update with your husband xx
Mum2000, do you live near sunny!!! Skegness? , we live 20 miles away. At the moment we’re in sunny Majorca with rubbish WiFi lol,x Enjoy Skeg and all it offers xx
We had a lovely weekend, mostly spent in Burgh Le Marsh.
I had my Ct scan Monday. But all didn’t go to plan. The paper work for the kidney scan hadn’t been done, so the kidney wasn’t done, just the lungs. I phoned to make an appointment for another scan, but with no success.
SueCC We don’t live near Skegness, but we have gone nearly everyweek since I was a kid, so feels like home. I have a good network of friends there as well. Looking at the Skegness Standard tonight there are a lot of floods from all the rain, so if I was you stay in Majorca until the weekend hehe
So what happens now, I hope you can get another scan. Wishing you all the best xx
Hi mum2000, yes he has an appointment for a CT scan on the 12th July so Friday and a day after yours, I’m wondering who’ll get their results first, last one he had in March took 9 weeks, 9 weeks of worry, this one will be even worse as we know there was something there but hoping it’s gone. I also have a cystoscope on Wednesday the 10th, same hospital ...so anxiety is sky high.
I don’t really want to scare you but when I googled bosnick cysts 3/4 it comes out that their mostly always cancerous. Is it the kidneys your having scan this time? If not I would really want to know what their doing about it, yours isn’t very big so maybe that’s why. As I said I don’t really know much about KC, I was hoping someone else may have been on to give you some info.
Please keep in touch and hope the scan turns out to be good for both you and my husband xx
Hi SueCC The Bosniak 3 thing is worrying, it showed up on a Ct scan last September that I had done for fluid on the right lung. This is the fourth scan I will have had for the Kidney. I can’t really understand the Doctor’s thinking. My next appointment will be on the 2nd August, so I hope that enough time for the scan to be properly looked at.
A cystoscope, I also hope you are ok? x
I don't have much experience of bosniak cysts either but my surgery for cancer was delayed for a few weeks as they were concerned about my potentially having sleep apnoea because of my weight. I was tested and found to have the condition and then had to successfully learn how to sleep using a variable positive air pressure machine that blows air into my lungs if I stop breathing when I sleep. I had to take the machine with me when I went for my surgery and was advised that rather than being taken to a surgical recovery ward after my operation I would be going to intensive care where I could be more closely monitored. I understand that the rationale behind this was that if I had breathing difficulties during the operation I could die very quickly whilst not operating on the kidney cancer it would take a number of years for it to become terminal.
As the cyst is classed as small and there are some concerns about your lungs it is likely to be similar concerns that are at work here. Until they are certain that your lungs will cope with the operation to remove the cyst, and the cyst remains small, they are likely to delay the surgery and prioritise clarifying the diagnosis of your thoracic issues.
it is only natural that when we find that something is growing in our body that might harm or even kill us that we want it out as soon as possible so I can fully appreciate your anxiety and frustration. Not knowing what the plan for our future also causes further anxiety. Make sure that you let both the Thoracic and Urology teams know that this uncertainty is a problem and try to get them to move things along more swiftly and keep you fully informed. Make sure that you ask for copies of all letters sent to your GP and copies of all reports (CT, X ray, blood) so that you can read and interpret them at your leisure. If possible get phone numbers that you can call them for updates or to arrange quicker appointments rather than waiting for letters in the post.
I don't know what is causing your pain in your back and side but I do know that for some time after my diagnosis and surgery I was concerned that every twinge and change in my body that I had was due to the cancer. It sort of blinds you to anything else for a while and I spent a lot of time coughing worrying it had progressed to my lung before recognising that I had a cold and sore throat. My cancer diagnosis did affect me a lot but most of it was indirectly, I slept badly which caused me to be fatigued, aching and feeling like I was coming down with flu. It was difficult to concentrate and my thoughts would drift off at times full of "what ifs?" making me forget what I was doing previously.
I suspect that the "Mayo" video you watched was from one of the Mayo clinics in the USA and whilst they are very good they do refer to the healthcare system in the USA. A couple of good sites here are the Kidney Cancer UK site ( click here to go directly to it ) and the Cancer Research UK site ( click here ).
I hope that some of this at least has been useful.
Wishing you all the best,
Thanks for the reply and info. It is hard to understand the delays, even with the lungs involved, as I am fit and well and still able to walk around as normal, even climbing hills. I will be seeing thoracic tomorrow, so fingers crossed. I will have a look at web pages,
Just a quick up date, plus to also inform people how Bosiank 3 cyst are treated. Firstly the empyema (fluid on the lungs) has all cleared now so no hold up because of the lungs. Back to full health nowthe infection has gone.
I finely had another appointment for the Ct scan on the 12th July. Saw the urology consultant on the 30th August. The Bosniak cyst hasn’t grown, so the next appointment is next year. I don’t know if this normal, for everyone, if you have been treated different you could let others know, as these cyst aren’t talked about alot
Hi again mum200, first I’m so pleased the lung fluid has cleared up and you’re ok with that. As the cyst isn’t very big maybe that’s all they do is monitor it and if it doesn’t grow just leave it, I’m not sure if I would be ok with that though, the urologist told my husband his had been growing for a long time so when do they step in to do something about it and are they sure it’s not a cancerous cyst? I’m afraid I can’t really help you there as we still have a few questions we need to ask but as we only receive a letter with results of CT scan we don’t get to speak to anyone. By the way my husbands last CT scan came back ok and to have another in a year. Hope you can get to ask a few questions and good luck X
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