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Swelling in neck/clavicle following radical nephrectomy

Harry Stanton
Posts: 6
Joined: Mar 2017

Hi everyone,

My stepmother recently had a radical nephrectomy to remove what the consultant originally believed to be a large tumour but contained to one kidney. Fairly sure it must have been at least a stage 3.

Following the surgery (4 weeks ago) my stepmother has had terrible pain in both her back and now her tummy, the painkillers haven't really helped and have made her bowel movements either fully constipated or diahorrea. Minimal sleep and lots of pain making her very weak and understandably my dad is very worried. 

First question, is this level of pain others have experienced (she only find relative comfort by lying on one side of her body)? Has anyone found anything particularly successful in managing the pain (tried codeine, morphine variants, hypnotherapy(!) etc.)?

Secondly, she has an enlarged lymph node in her neck/clavicle area and when I say enlarged, I mean it looks the size of a tennis ball, with swelling also seemingly spreading to her neck and jowels. The obvious concern is that the swelling is cancer cells that have spread to her lymph nodes in her neck and are growing - the only other thing I think it can be is lymphedema in that area due to any damage from surgery. I'm obviously hoping it is that and the speed in which the area has swelled gives me hope it is more likely to be fluid build-up than a rapidly growing cancerous growth (considering it wasn't there when the operation was done 4 weeks ago).

Second question then, I know others have said they have had swelling in their legs but has anyone got experience of it swelling in the neck/clavicle area?

Thanks for any experiences you can offer!

Harry.

 

icemantoo's picture
icemantoo
Posts: 3354
Joined: Jan 2010

Harry,

 

\\Other than the pain and discomfort following surgery it sounds like your step-mom  could be having other issues. Check them out with her surgeon and/or other doctors.

 

 

 

Icemantoo

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

I had almost no pain and no swelling after a radical nephrectomy on Feb 6. No pain medication at all from 4 or 5 days after the op. My tumour was stage 1. Since joining this forum late last year I have not read of any experience like your stepmother's. I hope she finds some relief soon.

Steve.

Harry Stanton
Posts: 6
Joined: Mar 2017

Thanks for replies so far. She had a ct scan on it last week but the hospital appears to be taking it's time in reviewing it. Also she has yet to receive the histology report from the operation so we don't even know what we are fighting (despite operation being 4 weeks ago). 

Thanks again, keen to hear any other stories.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am just curious...is the lump at her clavicle on the same side as her nephrectomy?

I know that a lot of people have different levels of discomfort after the surgery. It is a huge surgery, and it takes a long time for the insides to heal. However, it would probably be a good idea to get it checked out.

But I am concerned that you have yet to receive the pathology report. Was there a follow up appointment made at the time of surgery? If not, I would definitely follow up and demand an appointment for review of both the pathology report and the CT scan. This is a terrible wait for you.

I also have a lump on my clavicle. I am over 3 years out of my stage 3 nephrectomy....and so far so good. I am actually going for a CT scan this Tuesday. But I really feel it is ok...but nowadays any lump and bump gets checked!

Wishing you all the best with the results, and with her discomfort.

Hugs

Jojo

Harry Stanton
Posts: 6
Joined: Mar 2017

Thanks Jojo, yep my dad got up early today to demand to know what's going on, think he said if he gets fobbed off he'll call an ambulance and take her to A&E. "We're here and we're not going til someone sees us" type thing.

To be honest, I think I have accepted it is probably a tumour I'm just surprised how quickly it has grown. Just hoping something can be done.  What we thought was a stage 2 is now most probably a stage 3 minimum  but the kicker is no-one telling us. Feels negligent. Thanks again for experiences.

Harry Stanton
Posts: 6
Joined: Mar 2017

Hi Jojo again, sorry forgot to say, yep its same side.

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

My surgery was lathroscopic. In the days immediate I was in pain from the induced air trying to escape my body. It felt like muscle soreness and went away in about a week. Following that I found gas bubbles and bowel movements extremely painful. Once again, went away with time. It sounds like a simple surgery, but it can do a number on you. As far as the pain meds, I was done after about 4 or 5 days. Hope she starts feeling better.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

First I am sorry your step mother and all of you are going through his pain and uncertainty.

What concerns me is that you mention it has been 4 weeks since surgery and no mention of having seen the surgeon post surgery, correct? Most follow ups that I know of are within a week. Now that she is experiencing these changes, pain and such, she should be seen ASAP in my view.

Let us know if your dad was able to get through to someone. I find this concerning to say the least.

We're here for you all!

Warmly, Jan

Harry Stanton
Posts: 6
Joined: Mar 2017

Thanks all, they have managed to get an appointment for tomorrow at 12 noon (UK time) where the consultant will be discussing all scans, tests and histology and with an action plan. 

Fingers crossed. Even if it's worst case scenario I will update on here at some point so others googling can at least get an appreciation of what might be going on if they have the same experience.

Thanks again for all support.

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

It's good to see they've got an appointment. 

What helped me most with the pain was lots of walking, just five minutes at first, then working my way up to longer. Also, naps for the tiredness as sometimes it was hard to sleep for a long stretch. I had a small dense memory foam pillow that I put between my knees, which helped me not twist my body while I slept or rested on my side. Finally, to help sit up straight (which helped combat the pain immensely), I used the muscles of my upper back to lift my chest rather than my midsection's muscles. 

Jerzy

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

Hi Harry,

Did she have IV access in her neck or maybe just below her clavicle?

I know doctors will place what's called a central line on patients when medical necessary.   

Harry Stanton
Posts: 6
Joined: Mar 2017

Hello folks,

Thanks again for your experiences. As promised, good or bad I'd say what the oncologist said and unfortunely it's the latter.

My stepmother's cancer has spread rapidly throughout her body and she is too weak for treatment. She has been sent home with hospice carers to support her and my dad. I'm sorry to not have any better news but I guess we take up one of the bad stories to make room for one of the good ones.

I wish everyone all the best with their own battles xx

Harry.

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

I am sorry Harry...

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Thank you for posting the results. So sorry to hear this sad news. Sending thoughts and prayers your way.

Big hugs

Jojo

CRashster's picture
CRashster
Posts: 241
Joined: Mar 2017

I'm sorry to hear the news, but I'm glad you found the courage to post. I think we all need stories like this to remind us why we fight. I hope her passing is peaceful. Thank you for sharing.

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Sorry to hear the news, but thank you for the update. Hospice does provide good support for all, plus they tend to work very diligently to get pain under control. Hugs to you all - 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

I appreciate you having the wherewithall  to come back here and let us know the results. I find that amazing in fact. No one likes to know this kind of news. But I wanted you to know I am familiar with hospice care and will continue to support you and your family. You can email me on this site if you want to. Otherwise, I will be here for you in spirit~

Sending you all warm and healing hugs,

Jan

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