Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

What do I do? Long read sorry

Gillianh85
Posted by

So where do I start... 

Since about October last year mum was complaining for back and stomach ache just below the bra line and went to the doctor.. over the next few months mum would repeatily go back and fourth to the gp with same problems that the pain just wasn't getting better, mum would be given Busopan for ibs(there was a change to bowels) given Nitrofintoen mr for recurring water infections, paracetamol codeine or co-codamol around Feb mum could no longer wear her bra because it was hurting and this was told to Gp. There was mention that it was Gall bladder issue or panceterous(spelling sorry) altra-sound scan checked Kidney and the other areas apparently no issues. Pain in is now getting worse, trouble is Gp surgery never have appointments you get different doctors or they put you in with nurse particioner. Go over the symptoms again and again full blood count done shown red blood cells raised but told not to worry. Returned visits to GP right up till June finally a x-ray is requested appartently shows some issues with arthritis and maybe a bone density problem... mum starts to complain of funny feeling in legs like the start going numb. Myself and my sister put conplaint in to GP this just isn't right my mum needs more or better pain relief. 28th June mum is admitted to Rochdale hospital over night, she is told that nothing showing on bloods that this is constipation and bloating will requesting ct scan will say to get it fast possible malignant going on very unlikely. As leaving the hospital mum complains left leg is dragging and that there is a lot more pain, told to wait for c.t to come back 15th July to discuss. The days ticked on there was no scan date and mum had now lost movement to be able to walk unaided. I phoned and phoned trying to get a scan  sooner luckily i managed to get a cancellation for 6th of July. The lady advised that after scan result should be with doctor within 24 hours. From there mum just kept getting worse. We went back to Gp on Tuesday last week 9th July Gp was told think mum should be in hospital he said that he was confused about mum and he would arrange bone density scan maybe mri to gave her robaxin and amitriptyline said it was nerves and x-ray showed arthritis so was most likely that. I questioned weakness he said it would get better. But he did advise if it got worse by numbness in between bum and vigina that we should go to hospital... 

Thursday 11th July mum fell couldn't put any weight on left I worried it was a cord compression and rushed her to hospital... urgent care assesst mum did some tests I said cord compression he laughed in my face and told me he would be in touch with Salford royal if it was cord compression and it was constipation and sent her home on movicol.....

Thursday 11th July my dad called to say mum had lost all feeling in left leg... I phoned ambulabce....

Oldham Royal hospital A&E started to have argument with ct scan department they needed the results....

5.am 12th July.... the worst news   ... it is Kidney Cancer which has moved to the spine causing Cord compression ... this is now urgent to stop mum from being paraslysed perminatily 

Saturday 13th July transferred to Salford Royal spinal unit. Cancer in Kidney moved to c9 c10 c11 and c12 c9 has massive growth causing cord compression operation needed...

Operation happens Monday 15th to embilise the bleeding.. Cancer has large blood supply ... Operation unsucessful only managed to embilise some of the bleeding... Operation now not able to go ahead to remove tumour as the risks are to great. There may not be time to get bisopsy as they are now wanting to just start treatment they now think that it is in kidney the spine and possibly ovaries and uterus 

Mum will never walk again, and we don't know how long we have her for will this be treated I don't know we haven't even seen someone to discuss the Cancer yet is that normal?

I feel my mum has been failed by so many people is this what normally happens so many gp visits to someone who never visited and was fit and well and was even working up until 2 weeks ago.

I feel lost what if they gp surgery has robbed us of time what do I do?

buttercup01
Posted by

Hi Gillian, what a sorry tale indeed. Wish I was nearer to give u a big hug.

I'm just a member., albeit a fellow Northerner, exiled to the South.

There are so many things any of us with kidney cancer could say in response to your post, but I think a Community champion can probably  answer things better. S/he will no doubt be in touch shortly.

There are a number of treatment available now for kidney cancer, mostly tablets, which a few of us have been on for years. They do have side effects I'll admit, but they do often prevent the cancer from growing more or somewhere else.

Apparently kidney cancer is indolent(as opposed to aggressive)

You might want to ring the helpline on 0808 808 0000 to ask a nurse for  more info.

Meantime u might  want to join the Family and friends group as well as this one?

Big hugs

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gillianh85
Posted by

Just feel broken

buttercup01
Posted by

Altho u might  not want any more medical info, the helpline can also offer u emotional support. You can email them as well. See link below.

https://www.macmillan.org.uk/about-us/contact-us/ask-macmillan-form.html

Best wishes xx

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

The helpline can also give emotional support. If u don't want to phone them, u can email instead 

www.macmillan.org.uk/.../ask-macmillan-form.html

Sorry, posted twice by mistake

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gillianh85
Posted by

Thank you 

sueCC
Posted by

Oh Gillianh85 my lovely, what an awful time you all have had to go through, my heart goes out to you and your mum. I’m no help here only to say give the Macmillan nurses a phone call, I did just after my husband had his kidney out,  they were so helpful and took all the time to talk to you, no rush or anything like that,  please phone them. Hoping you all have better news soon xx

Sue Xx
DaddiosDaughter
Posted by

I am so so sorry :( it sounds like your mum was failed numerous times by health professionals :( x please don’t let that take over right now though, there will be time to address that after the plan for your mum is in place x Have they mentioned giving your mum any radiotherapy on her spine at all? Is she still in salford hospital? Please do use the support line, I can imagine your head is everywhere right now x wish there was more ways we could help

Gillianh85
Posted by

Doctors been in today and it looks like she will be going to a local Christie hospital we believe within a day or soon. They have also said maybe they will fit her with a brace for her back she won't walk again tho 

Gillianh85
Posted by

Thank you

DaddiosDaughter
Posted by

I’m at the Christie tomorrow with my dad, I can honestly say throughout my dad’s journey they have been amazing x they are very knowledgeable and if anything can be done to help I know they will try x Dr Waddle is my dad’s Oncologist / Kidney cancer doctor there, have they managed to give your mum something for the pain? X 

Gragon
Posted by

Hi ,

I'm so sorry to hear that your mum has been bounced around between different doctors and services without getting any of the help she needed.

I see that your mum has now been referred on to the Christie which has a reputation of being one of the best cancer specialist hospitals in the country so hopefully you will start to get some answers soon.

As the cancer has progressed beyond the kidney into the spine it will be classed as incurable but this does not mean that there is no possibility of treatment.  The treatment I am on is a biological therapy which can reduce the amount of blood supply going to the tumour and prevent it growing new blood vessels.  This can reduce the size of the tumour but not completely kill it.  There are also immunotherapy treatments which make the cancer cells, which are usually ignored by your immune system visible to it and them gives your immune system a boost to attack the tumour.  Again it cannot completely kill the tumour but can reduce the size of it.  Some types of kidney cancer can also respond to chemo and radio therapy.  The Christie will also be able to advise you if your mum meets any of the criteria for any trials that are running so your mum may have other options available to her as well.

I think calling the Macmillan helpline on 0808 808 00 00 would be a really good idea.  They are very good at helping you sort out your thoughts but also helping with the practicalities.  They can also advise you how to best apply for a Macmillan nurse to be allocated to your mum.

There is also a Maggie's centre based at the Christie click here for their website, and although I have not been personally I hear that they are really good.  They are there for both the patient and their family and will know what can be available for you in your area and the hospital.

One of the things I find when I am worried and upset is that I have loads of questions going around in my head and find it difficult to get a break from them.  What I finds helps me is writing them down so that I don't have to keep trying to remember them all but also so that I have them available when I do finally meet someone who might be able to answer them.  You might want to do this with your mum as well as she will undoubtedly have the same sorts of questions going through her head.  When I was first told that I was incurable I was all over the place to start with and it only started to get better when I knew what the plan was.

I agree with Daddiosdaughter that the main issue is your mums current care and treatment but I would suggest that you write two lists, one about what happens now regarding your mums care.  This can be both the medical and practical aspects.  However, as they will be on your mind anyway you might as well write down (as you have done above) your mums recent medical history and the questions that you have about this.  When you finally feel able to deal with this you will then be able to go back to these notes and decide what you want to do.

There is a lot of support available to you here on this site and lots of different experiences.  It is quite good at answering specific questions and very good at being supportive and encouraging as everyone here has been through at least a part of what you are describing.

I hope that you get some answers from your mum's oncologist soon.

Wishing you and your family all the best,

love and hugs,

Gragon xx 

Gillianh85
Posted by

No pain relief yet apart from paracetamol and codiene however this has meant she can't move her bowels for 2 weeks now

DaddiosDaughter
Posted by

:( thats going to make her even more uncomfortable, my dad ended up not having a bowel movement for over 16 days and needed enema's as well as three different types of laxatives a day x Has she been moved over to the Christie now? How are you holding up? You can always private message me if you would like to talk x

Gillianh85
Posted by

Wow yesterday was a whirl wind.. I must tell you all I'm 34 and this feels like I know nothing in this world.

So couple doctors had argument about what was best for Mum anyway we went to Christie they had to do a new ct scan gave her couple tattoos and gave her a really big blast of radiotherapy the did it on c8 all the way down to L1 now this is to hopefully stop the growth just in the spine and try and get some movement back in the legs which is unlikely.

I need to ask some questions ... something that was said to me yesterday when mum was away....

Your mum might not be well enough for biopsy my mum looks fine to me what do they mean? They said they might not find the primary and without the primary chemo can't start... They may do the biopsy and mum might not be well enough for chemo I don't understand this are they telling me that 6 days ago we were told it's cancer and in less than a week that they are telling me I'm lossing my mum 

We haven't been given an oncologist yet we don't know what we are dealing with they think it's all come from the kidney

Will my mum survive this or I'm I going to be planing the worst possible and she won't be here

It's the not knowing that is getting me. I need to know we have time there is so much I need to do with my mum. She at 56 will be 40 years married next month. We have a massive family holiday in October will she be here for these. 

Mum is back in Salford we just spent all day there 

G