NSCLC and nocturia?

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This topic contains 7 replies, has 4 voices, and was last updated by  judy7777 5 days, 12 hours ago.

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August 6, 2018 at 10:51 am  #1295000    

judy7777

My husband has nocturia – bad. Since his pneumonectomy (T3 N1 M0) In October 2014 he has been up every two to three hours to pee. He has not had a restful sleep in the last 4 years and it is seriously impacting his quality of life. He has recently begun measuring and he pees up to two litres every night (no less than one.

His prostate is slightly enlarged (by CT scan) but the GP is convinced the problem in not urological

My husband was recently prescribed desmopressin by the GP for his nocturia but his sodium fell very low and the oncologist team phoned and said stop immediately.

The GP is ‘convinced’ the nocturia is connected to the lung cancer and said ‘I am surprised they haven’t picked it up’. The oncologist says it is not connected,

My husband has recently had a recurrence of his NSCLC (3.5 years after pneumonectomy) and is on carboplatin and gemcitabine,

My husband has now been referrred to an endocrinologist by the GP (who still thinks the oncologist and pulmonologist are wrong}.

This is so stressful – coping with this as well as a recurrence. My husband is exhausted as he never, ever can sleep for more than a couple of hours,

Are we on the right track with the endocrinologist? Any suggestions or comments most gratefully received,

August 6, 2018 at 6:55 pm  #1295003    

onthemark

Hi Judy,

Sorry to hear your husband is having this problem. Has he been seen at any point by a urologist for this? There are also other medications besides desmopressin for nocturia. Has he tried any of these?


10/2015 Chest xray found a nodule as part of a physical (no symptoms).
01/2016 Upper left lobe lingula preserving lobectomy stage 2b for 1.9 cm invasive adenocarcinoma with additional 2 mm AIS nodule found in pathology.
03-05/2016 Sixteen weeks of adjuvant cisplatin/vinorelbine.
07/2016 Durvalumab adjuvant clinical trial discontinued after 1st dose knocked out thyroid.
12/2016 Revised to stage 1b (due to VPI) after new guidelines for multifocal lepidic lung cancer.
07/2019 Next scan.

  • This reply was modified 1 week ago by  onthemark.
  • This reply was modified 1 week ago by  onthemark.
August 7, 2018 at 12:34 am  #1295006    

judy7777

No, no urologist as the GP won’t refer him. He says it is hormonal and not a bladder problem so no other drugs tried. The GP is really stuck on the connection with lung cancer but from what I researched a bit just last night there is only a connection between nocturia and SCLC and not NSCLC. I should have researched that before I posted. Thank you for replying – it does seem my husband will have to go the endocrinologist route – and then (maybe/probably) the urologist. Lots of waiting!

August 7, 2018 at 9:39 am  #1295007    
catdander forum moderator
catdander forum moderator

Hi Judy 7777,

I’m so sorry about your husband’s recurrence and nocturia. I wonder if talking to the GP again or even the oncologist would help get a referral to see an urologist? Either way that is movement in the right direction for doctor support for nocturia.

I hope your husband gets relief and does well for a long long time.

All best,
Janine

August 7, 2018 at 10:06 am  #1295008    

judy7777

Thank you Janine, yes, it is a good idea to mention it to the oncologist and see what she thinks. She has previously said a urologist is the correct specialty – the GP just shrugs his shoulders and says it isn’t! He is the owner of the practice so nowhere else to go there. My husband could go private but it’s not just the initial consultation but all the tests, scans etc that might be necessary. However it might be a way to go to get a second opinion on the tests he has already had. I had to go private recently when the same GP wouldn’t refer me and then the consultant referred me back to the NHS and I am being treated there now.

It is hard to explain how much this affects quality of life. He can never sleep more than a couple of hours at a time and if he ever gets 3 hours he says he has had a ‘wonderful night’.

Thank you again
Judy

August 7, 2018 at 11:25 am  #1295009    
catdander forum moderator
catdander forum moderator

Judy that sounds like my husband. He has diminished lung capacity and pain from tumor/surgery etc and can’t sleep more than a couple of hours at a time. When he does sleep for any length of time he is elated.

There have been times when I was sick and didn’t have insurance and certainly understand your hesitancy in going private. I take is your husband’s oncologist can’t make references?

Hoping for the best,
Janine

August 8, 2018 at 5:15 pm  #1295010    

cards7up

Just a suggestion as I know this from having seen a urologist myself a few years ago. Your husband is already measuring how much he voids. What he should do is keep track of how much and what he drinks and when. Then how much he voids each 24 hour period. This is what they’ll have him due if he sees a urologist. It would be great if he already had an answer for him. Wishing him all the best.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

August 9, 2018 at 3:51 am  #1295012    

judy7777

Janine
Yes, his oncologist can refer him if she believes there is any connection with cancer – otherwise it has to be his General Practitioner who refers. The oncologist does not think there is a connection with cancer. The GP thinks there is. It is really frustrating he can’t at this stage be referred to a urologist.

Judy
Yes, that’s really important to measure his input as well. I’ll certainly mention that to him. If there is no resolution after seeing the endocrinologist I’d be pretty certain a urologist will be the next step.

Many thanks to you both and for your good wishes. . I really hope something can be resolved for him – although it may take some time as he waits for NHS appointments.
Judy7

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