Hello Dr West & Dr Weiss
I have posted before 2012. Much has kept me away from laptop, not least my own journey, however, more stressful, the journey of our beautiful little grandson. 5 yr old diagnosed with Rhabdomyosarcoma. Treatment now completed, remission confirmed and as a family we look forward with hope, and feel blessed.
Up date on my journey. I had lower left lobectomy end June 2012 for what was diagnosed after resection as a 1cm typical carcinoid. You may re-call from my previous posts back in 2012 that I did mention I had multiply bilateral ' nodules' also. At the time I was advised to not worry, and f/u with CT scans was treatment plan. I recovered pretty well I have to say and the surgeon was marvellous and did great job.
My confidence did not last too long, as, the never ending cough, which started my never ending journey, came back full force approx. 3/4 months after lobectomy. Long story short...........I have now been informed after doing my own research and approaching a member of the team looking after me that I actually have DIPNECH. Diffuse Idiopathic Nueroendocrine Cell Hyperplasia and the multiple bilateral nodules now being named tumour lets. I understand this is a most rare lung disease ? that is about all either I or my Dr knows as of yet.
Would love to hear any information you may have if you have heard of this. Research/treatment/clinical outcomes/prognosis pretty hard to find as it appears so few have this.
Look forward to any comment/suggestion experience you feel able to share.
peg99
Reply # - December 5, 2013, 08:42 PM
Reply To: carcinoid ? well it was, new diagnoisis 15months later
I'm sorry that I really don't have significant experience with this. However, what I have seen is a rare case of essentially multifocal carcinoid, which tends to not respond to chemotherapy or other interventions but also doesn't grow at a rate that is likely to be any kind of threat to a person in the foreseeable future.
Good luck.
-Dr. West
Reply # - December 6, 2013, 01:15 AM
Reply To: carcinoid ? well it was, new diagnoisis 15months later
Thank you Dr West
further research I have attempted, and connecting up with another lady who's clinical course appears almost parallel to my own, to a point, went on to have further surgery for a tumour let that had changed, and, unlike her 1st biopsy ( lobectomy ) which was ' typical' carcinoid as was mine, this 2nd one 'Atypical'.
Although it does appear on the one hand that the progression of the disease does seem to be very slow, I believe from my understanding that 'cells' which have, for what ever reason started to behave differently, can and do become un-predictable.
A rare disease remains so until research, data, treatments, outcomes, accumulate, and some kind of picture starts to amerce.
I am most grateful to sites like this which truly offer an amazing service to many people who find themselves feeling very much in the dark over health issues that are so important.
Many thanks again for your valuable time.
peg99
Reply # - December 6, 2013, 07:46 AM
Reply To: carcinoid ? well it was, new diagnoisis 15months later
Peg, I'm very sorry you're in this situation. Being such a rare case must make it even the more isolating.
Following the line of thought you've mentioned, "... sites like this which truly offer an amazing service to many people who find themselves feeling very much in the dark ..." I can easily imagine online communities bringing together rare dx's and forming hubs of isolated occurrences to promote, again following your line of thought, "... research, data, treatments, outcomes, accumulate, and some kind of picture starts to emerge."
I really think this is not too much of a stretch.
Best of luck to you,
Janine
Reply # - December 7, 2013, 10:01 AM
Reply To: carcinoid ? well it was, new diagnoisis 15months later
Hi Janine
thank you for posting. I have found a couple of blogs/web pages that have been set up on this lung disease, however, official documented data and real research is what's needed. An interested professional and the un-mentionable, funding!!!!. I have follow up on the 17th this month if anything of interest or new comes to light I will share that in here and everywhere. I wish you and your family a peaceful & happy Christmas.
peg xx
Lower left lobectomy 2012 for typical carcinoid
2013. Diagnosis DIPNECH with multiply carcinoid tumor lets
Reply # - December 7, 2013, 02:43 PM
Reply To: carcinoid ? well it was, new diagnoisis 15months later
Peg, you can get articles from PubMed on DIPNECH. Though it does state there have been only 49 cases reported as of 2011. Since this is so rare, research may be very limited. Click on the right hand side to read related a citations to this one, which for some reason they're not showing. Wishing you the best.
Take care, Judy
http://www.ncbi.nlm.nih.gov/pubmed/24045319