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Diagnosis and management of unknown primary tumour
NICE will shortly be setting up a guideline development group to develop a clinical guideline on ‘unknown primary tumours’. To date, only a few patient/carer organisations have registered as stakeholders.

Stakeholders will be notified about the stakeholder meeting, consultations on draft documents related to the guideline, and opportunities to apply for membership of the guideline development group.

Later in the year, a draft scope will be published for consultation, and during the consultation period, the stakeholder meeting will be held to discuss the likely content of the guideline. It is likely to cover two main areas:
  • The investigation of adults who are found to have metastases (spread of cancer) but in whom the primary site of the cancer is not known or not immediately obvious. This will probably involve recommending the most appropriate pathological and biochemical tests and imaging investigations.
  • The treatment of those in whom, even after appropriate investigation, the primary site is still unknown. This will probably involve recommending the most appropriate chemotherapy, hormone therapy and radiotherapy regimens.
Until the scope is drafted, it is difficult to be more specific about what the guideline will cover.

Head and neck cancers can present with the occult (hidden) primary never being found. This can be worrying to patients. Several of our members have had unknown primary tumours. The Mouth Cancer Foundation has therefore registered our interest in the development of this guideline.

I would be grateful to hear from members who were diagnosed as having an unknown primary tumour.
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Hi Doc!
I don't know just what you want to know. I had excision of initial lump and it was a secondary, then removal of 'iffy' right tonsil which turned out to be OK. Then modified radical neck dissection where two more lymph nodes were found to be secondaries.
A PET/CT scan a month after surgery showed 'no masses' but 'greater uptake in both tonsils'. Still no primary.
Deb's concern (and mine) is that after I finish chemo and r/t, how will they determine the success or otherwise of all that I've had done? I still think they've got me mixed up with someone else!!
I'll be eager to hear what comes of this discussion
The Mouth Cancer Foundation has been invited to a meeting for the Unknown Primary Cancer Guideline development.
  • A representative of the National Collaborating Centre for Cancer will present the draft scope.
  • NICE staff will outline the guideline development process, stakeholder input into the guideline, the processes of recruitment to the Guideline Development Group and evidence submission.

The date for the meeting is Friday 15 February 2008. The meeting will start at 2pm (with refreshments from 1.30pm) and is expected to last until 4pm.

Representation is limited to two people per organisation. The Mouth Cancer Foundation represents the interests of patients and/or carers. We would like to ensure that at least one of our representatives is a patient who has had the experience of being treated for an Unknown Primary Tumour in the head and neck area. It is an opportunity to ensure that issues of concern are considered for inclusion in the scope. Please note that although NICE will reimburse reasonable 2nd class travel costs and subsistence costs, it is unable to cover loss of earnings or locum costs.

Please contact me through the private message facilty if you have any comments you wish to raise or are interested in attending.

Best wishes

Dr Vinod K Joshi
BDS(Singapore) DRDRCS(Edinburgh) FDSRCPS(Glasgow) FDSRCS(England)
Founder and Chief Executive
Mouth Cancer Foundation
Hi Dr Joshi
We would love to have feedback from this event if possible.
I'm sure that everyone here has a certain degree of anxiety in relation to a return of their cancer and as happy as we are with Trevor's progress, we both acknowledge a fear that it is still lurking somewhere since the primary source of Trevor's cancer was unknown. It would be lovely to have some before and after shots of a dead or shrinking tumour.
Join the guideline development group for metastatic malignant disease of unknown primary origin
(Closes 3 March)
Applications wanted for patient & carer members on this clinical guideline development group
The Patient and Public Involvement Programme and the National Collaborating Centre for Cancer are looking for applications from patients and/or carers to sit on the group developing a clinical guideline for metastatic malignant disease of unknown primary origin. It is likely that the guideline will look at tests and imaging investigations in people who are found to have metastases (spread of cancer) but in whom the primary site of the cancer is not known or not immediately obvious, and will consider treatment of people in whom, even after appropriate investigation, the primary site of the cancer is still unknown.

Patient/carer members of this group will play a key role in making sure that patients’ views, experiences and interests (and those of their carers) inform the guideline's development and its recommendations to the NHS.

All members of Guideline Development Groups have equal status, which reflects the relevance and importance of their different expertise and experience. They include health professionals and researchers as well as patient and carer members. All Group members need to attend regular meetings and undertake background reading.

We would welcome an application from you if you have:
  • experience or knowledge of metastatic cancer of unknown primary origin, for example, as someone
    - who has had this themselves or
    - who is the relative or carer of someone who has had it or
    - who is a policy officer from a relevant patient organisation
  • an understanding of, and a willingness to reflect, the experiences and needs of a wider network of relevant patients (perhaps as a member of a support group or patient organisation)
  • time to commit to the work of the group: attending meetings, background reading, commenting on draft products etc.
  • good communication and team working skills

Health professionals will be well represented on the group so we are looking for someone without a health professional background.

Patient members of Guideline Development Groups are paid an attendance fee and travel expenses are also reimbursed. The Patient and Public Involvement Programme will provide patient/carer members with dedicated and ongoing support throughout their time on the Group.

For further information about what the role involves and other relevant information please use the link below:
Applications wanted for patient & carer members on this clinical guideline development group
Thanks Dr Joshi
Mostly I don't even think about Trevor's cancer and sometimes I do and can't believe that the last year unfolded as it did and then there are those fleeting moments when I just wish we had seen a picture of that primary ~ before and after surgery and treatment! Where is/was the damn thing?
Never mind, I'll look forward to any 'unknown' news.
Management of the unknown primary carcinoma: long-term follow-up on a negative PET scan and negative panendoscopy.
Head Neck. 2008 Jan;30(1):28-34
Miller FR, Karnad AB, Eng T, Hussey DH, Stan McGuff H, Otto RA.
Department of Otolaryngology-HNS, University of Texas Health Science Center San Antonio, 7703 Floyd Curl Dr., San Antonio, Texas 78229.

BACKGROUND: The unknown primary carcinoma in the head and neck has been estimated to represent up to 7% of all head and neck carcinomas. In an attempt to identify the occult primary tumor the evaluation of this patient population has included a complete head and neck examination, flexible fiberoptic endoscopy, and imaging with CT/MRI. More recently, positron emission tomography (PET) has been advocated as a tool to detect primary tumors.
METHODS: A cohort of 31 patients with fine-needle aspiration biopsy-confirmed squamous cell carcinoma were prospectively entered into a diagnostic protocol to identify the occult primary tumor. The diagnostic protocol included a comprehensive head and neck examination (including flexible endoscopy) and CT and/or MRI. If the initial diagnostic evaluation failed to identify a primary tumor, the patients then underwent whole body PET imaging followed by staging endoscopy with biopsy of the at-risk occult tumor sites. The outcome measures included the accuracy of the PET to predict the presence of occult tumor at staging endoscopy and the accuracy of the negative PET and negative panendoscopy in predicting the subsequent development of a primary tumor in the upper aerodigestive tract during follow-up.
RESULTS: The PET detected 9 occult primary tumors in the 31 patients (detection rate, 29%). Five occult primary tumors (2 base of tongue and 3 palatine tonsil) were detected during panendoscopy despite a negative PET. The combination of PET and panendoscopy detected 45.2% of the unknown primary tumors. Seventeen patients (N1, n = 7; N2a, n = 4; N2b, n = 2; N3, n = 4) had no primary tumor detected and were treated as an unknown primary carcinoma with primary neck dissection +/- radiation therapy +/- chemotherapy. In this series of 17 patients, there were 3 neck recurrences (17.6%). In addition, only 1 patient (5.8%) developed a primary tumor of the upper aerodigestive tract with a mean follow-up of 31.1 months (range, 21-60 months).
CONCLUSION: A negative PET study in patients with an occult primary head and neck carcinoma does not preclude the need for panendoscopy with biopsy to detect the occult primary tumor. The risk of subsequent primary tumor appears to be low in the patients with a negative PET and a negative panendoscopy (<6%).

Copyright (c) 2007 Wiley Periodicals, Inc.
Maybe I am a bit late to enter this thread as it's been a while since any post so my experiences may be too late now anyway.

My secondary was found (lump to side of neck) and after 3 FNA test found to be malignant but no sign of primary.

I then had MRI scan with no result followed by a combined pet/ct scan which resulted in no primary found.

I was being treated under the barts MDT. At their next meeting they recommended removal of both tonsils as the most likely site of the primary. Although as far as i know they did no tests (fna etc) to the tonsil.

Fortunately for me the tonsil, or one of them at least turned out to be the primary.

WAS I JUST LUCKY in this outcome, certainly i no longer have the worry no primary and for that i am very grateful.
Please may I draw your attention to this conference – the Early Bird rate lasts only until end June. There are bursaries available for patients/carers/researchers. If you are unable to qualify for a bursary, MCF would be happy to fund patients/carers who have had direct experience of living with an unknown primary to attend the conference and ensure that the head and neck cancer patients views are also heard.
Overcoming the Unknown

"New Approaches to the Diagnosis and Treatment of Carcinomas of Unknown Primary "

15 October 2009

Keynote speaker
F. Anthony Greco

Please click here for more information and to register for this conference

Twenty Bursaries covering the delegate fee have been made possible by Matt’s Trust Fund for Cancer, in memory of Matt Hoyle who died with CUP in 2005 aged 26. The purpose of the Bursary is to encourage conference attendance by patients, carers, those affected by CUP; or researchers with an interest in CUP, who are not funded by an organisation. For an application form eMail: copied to and complete the registration form above. Please put "Bursary" in the eMail subject line.

Best wishes
Chief Executive
Mouth Cancer Foundation
Last edited by drvinodkjoshi
Dr. Joshi - coming late to this thread but I note in one of your earlier posts that you were seeking to be contacted by patients with an occult primary.

That was my diagnosis back in March of this year, and I've had 2 surgeries. #2 was a modified radical neck dissection, after #1 in January (at that point they still though they were dealing with a Branchial cleft cyst) followed by 31 days of IMRT treatments but, thankfully, no chemo (there was apparently no extra-capsular spread, if that's the word I want, and they felt confident that the surgeries removed the two cancerous lymph nodes). The RT ended 3 weeks ago today.

My medical oncologist tells me that because I tested positive for HPV (and of a certain sort or grade.... was it type 16?.... that is the suspicious one for these types of cancers) he feels that it was more than likely the, or perhaps a cause of my disease. I've never been a smoker, although I have always drunk alcohol as an adult.

Please let me know if there are any other details of my situation you'd like to know about.

And more to the point thank you so much for providing this wonderful internet resource for all of us. I realize that your readership is predominantly UK-based, but we're also fans here across the pond.

Dear colleagues,

I’m just writing to remind you that consultation on the draft guideline for Metastatic malignant disease of unknown primary origin closes at 5pm on 1st February 2010.

Below is the relevant link where you will find all the instructions and documents needed in order to get involved and make your comments:

I’d be grateful if you could ensure all responses are provided using the comments proforma (ensuring all relevant fields are completed, including your organisation’s full name) and forward this electronically by 5pm at the latest on Monday 1st February to:

If you have already submitted your comments - many thanks

Take care


Emma Banks
Guidelines Co-ordinator
National Institute for Health and Clinical Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 44 (0)161 870 3102 | Fax: 44 (0)845 003 7785

If any members wish to comment please either do so as individuals or forward them to me to collate as an MCF response.

Best wishes
Vinod Coffee

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