Radiation after nephrectomy and adrenalectomy

Phredswife

Hi everyone. I have been reading this site for a couple of months since my husband was diagnosed with kidney cancer. I have been really encouraged by you all even though I was too shy to join up.

My husband was diagnosed after an 8 day stay in hospital just before Christmas. He had severe anaemia and we never considered it could be cancer causing it. They kept giving him tests to find out where he was bleeding internally but every test colonoscopy and gastroscopy came back fine . Eventually they gave him a ct and found the mass. He was going to have a radical nephrectomy in mid February but it got cancelled 2 days before because he had an mri that showed that what we had been told was a slow growing cancer had grown really fast. He had a nephrectomy and adrenalectomy on 27 February 2014. They were considering removing his spleen and pancreas too but we found out later they thought that he mightn't survive that. His tumour was 13 cm and extended into the adrenal gland. It was a fuhrman grade 4 with extensive sarcomatiod change and rhabdoid morphology. He is doing really well since his op and his anaemia has gone so he is feeling heaps better. He has been offered 5 weeks of radiation but has been told it is his choice whether to have it. The surgeon said he doesn't think he got it all and it may come back anywhere now but they would give him radiation where they removed the kidney.

Has anyone else had radiation where the kidney was removed from? Does it really reduce the chance of it gowing back there? He is having a ct scan on Wednesday which should tell us more about if there are any mets.

 

NanoSecond

Time is of the essence

Hi Phredswife.  I don't wish to alarm you but I have to say this as emphatically as I can.  You need to be under the care of a top renal cancer expert ASAP.  Unfortunately the pathology you have described - sarcomatoid and rhabdoid - is extremely aggressive and very likely to result in further metastasis.

Radiation does not normally have any effect on RCC unless it is given precisely focused and at very high dosage.  The fact that it has been suggested leads me to belive that you may not getting the best advice available.

I realize that seeking out a second or third opinion may be difficult or unnerving but trust me you really need to be consulting with the top experts right now.  Where are you located?

Please also consider registering at: www.SmartPatients.com

You will be able to get far more detailed medical advice and pertinent suggestions from both patients and caregivers over there.

Phredswife

NanoSecond said:

Time is of the essence

Hi Phredswife.  I don't wish to alarm you but I have to say this as emphatically as I can.  You need to be under the care of a top renal cancer expert ASAP.  Unfortunately the pathology you have described - sarcomatoid and rhabdoid - is extremely aggressive and very likely to result in further metastasis.

Radiation does not normally have any effect on RCC unless it is given precisely focused and at very high dosage.  The fact that it has been suggested leads me to belive that you may not getting the best advice available.

I realize that seeking out a second or third opinion may be difficult or unnerving but trust me you really need to be consulting with the top experts right now.  Where are you located?

Please also consider registering at: www.SmartPatients.com

You will be able to get far more detailed medical advice and pertinent suggestions from both patients and caregivers over there.

Hi Nanosecond.  Thanks for

Hi Nanosecond.  Thanks for your reply. Sadly we are from NewZealand and while our medical treatment in hospital is free we don't have a lot of choices about where to go for treatment. We have seen a urologist and radiation  oncologist and will probably be referred to a oncologist at the same hospital if mets are seen in the scan. Just really appreciate your support. Its been an overwhelming few months.  

Hi. Phred here. I've tried creating my own login but have had no reply with a password even though I know my username has been accepted. I have a question for all you knowledgeable people out there. The first 4 or 5 weeks of my recovery went remarkably well but since then, while the pain from the scar has gone, i have this feeling inside me below the scar like there is a large balloon which is inflated hard. It's not what I would call painful, but it certainly causes me discomfort, especially later in the day. It seems to ease overnight. Any thoughts as to whether this is normal or not would be appreciated. Thanks, Phred.

Djinnie

Phredswife said:

Hi Nanosecond.  Thanks for

Hi Nanosecond.  Thanks for your reply. Sadly we are from NewZealand and while our medical treatment in hospital is free we don't have a lot of choices about where to go for treatment. We have seen a urologist and radiation  oncologist and will probably be referred to a oncologist at the same hospital if mets are seen in the scan. Just really appreciate your support. Its been an overwhelming few months.  

Hi. Phred here. I've tried creating my own login but have had no reply with a password even though I know my username has been accepted. I have a question for all you knowledgeable people out there. The first 4 or 5 weeks of my recovery went remarkably well but since then, while the pain from the scar has gone, i have this feeling inside me below the scar like there is a large balloon which is inflated hard. It's not what I would call painful, but it certainly causes me discomfort, especially later in the day. It seems to ease overnight. Any thoughts as to whether this is normal or not would be appreciated. Thanks, Phred.

All the best!

I am so sorry to hear your news! I hope you manage to find an Oncologist well versed in your type of cancer. I always thought that the health care in New Zealand was a similar system to the UK. Is your GP not able to write a referral for you to see an Oncologist who specializes in your type of kidney cancer at a cancer centre?

Phred, those sensations are not unusual, it takes some time for the internal swelling to go down, don't forget there has been a lot of shifting around inside and cutting. All the tissue and muscles have to knit together. I should also check to see if you can feel any lumps close to the external incision. I had a small lump after my surgery which over time has enlarged to a sizeable hernia. It may help to wear some support for that area. I hope you find the best possible treatment, and the best Oncologist to deal with your continuing care.

 

Djinnie x

 

Phredswife

Djinnie said:

All the best!

I am so sorry to hear your news! I hope you manage to find an Oncologist well versed in your type of cancer. I always thought that the health care in New Zealand was a similar system to the UK. Is your GP not able to write a referral for you to see an Oncologist who specializes in your type of kidney cancer at a cancer centre?

Phred, those sensations are not unusual, it takes some time for the internal swelling to go down, don't forget there has been a lot of shifting around inside and cutting. All the tissue and muscles have to knit together. I should also check to see if you can feel any lumps close to the external incision. I had a small lump after my surgery which over time has enlarged to a sizeable hernia. It may help to wear some support for that area. I hope you find the best possible treatment, and the best Oncologist to deal with your continuing care.

 

Djinnie x

 

To Nanosecond and Djinnie

Hi. Phred here. Thanks so much for your comments. With our small population here in NZ, the choices in terms of who you see for treatment are pretty much limited to the expertise of the medical staff at your local District Health Board. Consequently I spent a lot of time waiting for various things to happen which is very frustrating. I'm having my first follow up CT scan on the 30th April - a full body scan which I've never had before. It'll be interesting to see what, if anything shows up. I've been offered radiation, but thats all. We asked my radiation oncologist about any trials that I could go on. He didn't answer immediately but seemed to be thinking about it for a while before saying no. If there were any trials available, they would probably be as part of an Australian trial.

Mrs Phred has registered with SmartPatients as you suggested Nano, but it scares the .... out of her. In the mean time, for me, its Hurry up and Wait...and pray really hard out. You want to know the ironic thing about this. I am a meteorologist - a Met man. I sure hope thats not the case outside of work too. I don't want to be the Met man due to the cancer.

Regards

Phred 

NanoSecond

Phredswife said:

To Nanosecond and Djinnie

Hi. Phred here. Thanks so much for your comments. With our small population here in NZ, the choices in terms of who you see for treatment are pretty much limited to the expertise of the medical staff at your local District Health Board. Consequently I spent a lot of time waiting for various things to happen which is very frustrating. I'm having my first follow up CT scan on the 30th April - a full body scan which I've never had before. It'll be interesting to see what, if anything shows up. I've been offered radiation, but thats all. We asked my radiation oncologist about any trials that I could go on. He didn't answer immediately but seemed to be thinking about it for a while before saying no. If there were any trials available, they would probably be as part of an Australian trial.

Mrs Phred has registered with SmartPatients as you suggested Nano, but it scares the .... out of her. In the mean time, for me, its Hurry up and Wait...and pray really hard out. You want to know the ironic thing about this. I am a meteorologist - a Met man. I sure hope thats not the case outside of work too. I don't want to be the Met man due to the cancer.

Regards

Phred 

For Phred

Hi Phred.  I can understand your wife's initial reaction to SmartPatients.  But tell her to try to hang in there - just have her poke around and read whatever may sound of interest.  In no time it will all start to make sense.  That's how we all have done it.  I'm an Electrical Engineer by education - but after some time immersed in medical research regarding cell metabolism and cancer (and nutrition) one day it all began to make sense to me.  That does not mean that anyone else need repeat my particular path - but I bet with your background in Meterology you would pick this stuff much quicker than I did.

The mechanisms of metastasis for all cancers are still rather poorly understood.  But thankfully there are several different therapies available to RCC patients should they ever rear their ugly head.

And yes, praying may be the best medicine of all.