Hi,
I was told some time ago that my most likely diagnosis is cancer of unknown primary (CUP). Since then something showed up in my tonsils on a PET scan, so I’ve been referred to the head and neck department. They don’t think it is very likely that my tonsils are involved (my only other sign is in my groin lymph nodes) but they are being careful, which of course I’m glad about.
The problem is that I’m now 8 weeks on from my diagnosis (4 months since the initial referral). By the time I see the head and neck consultant it will be 10 weeks and I still won’t be getting treatment, just another investigation. I’m on my 4th department and each time I’m referred on I seem to start again at the back of the ‘seen in 2 weeks’ queue.
The delay is very frustrating and it is quite hard to get a straight answer about whether I should be worried about it. When I ask I’ve been told that at each stage they will be weighing up the cons of delay with the pros of identifying the primary site and making sure the treatment I get is the right one. Of course I’m glad that they are doing all the possible tests and really trying to track it down, but I’m getting very anxious about the delay.
Any tips on getting things to move a bit more quickly?
Anyone be able to give me an idea of how long it took them to get to the point where treatment started? Were you referred to a CUP specialist once they thought this was the likely diagnosis or not until they had been through every possible test?
Thanks!
Kate
Loading ...
Hi Kate
Firstly I wish you all the best in your journey ahead. And send you all the positive vibes possible
I am currently caring for my Ma diagnosed with CUP cancer.
On this site I have received very helpful information from the site itself and the people on it….
My Mum went thru a similar diagnosis issue and did not start treatment for her advanced CUP cancer for 4months of many tests biopsys and scans.
She is now still undergoing treatment. Mas oncologist has now changed her chemo to Paclitaxol (Taxol) after a first round of Carboplatin and vinorebline and we are all ready for the challenge ahead…
Although I do not have many medical answers to assist you, on this site I have received some helpful information from others that I am happy to share with you …
: If you have had a biopsy there are a number of tests that can be made on the biopsy material to assist in defining the nature/type of the cancer to further assist in chemo choice. You may want to discuss genetic/molecular tests on the biopsy material. There is a cost and its done in this the UK through Lab 21 (this site has details.) The Test is specifically for CUP and seeks to identify the genetic make up of the tumour.
(of course weighing up the pros and cons of having a biopsy if you have not done so already)
This site has helped me find out a lot of information and starting points to help my Ma…
Again I wish you all the very best in your journey ahead Kate
Trina B
Thanks for taking the time to reply. I’m so sorry your Mum is having to deal with all this – wouldn’t wish it on my worst enemy, as they say.
I hadn’t heard of Lab 21 – thanks for the tip and I will investigate!
All the best to you and your Mum too,
Kate
Hello Kate,
Welcome to the world of CUP.
It takes, what seems, “forever” to come up with a treatment plan. I was diagnosed with the big “C” on September 17, 2007., following a biopsy of a painless lymph node in my groin. One doctor told me it was “nothing” (come back in 6 months). A second doctor (a friend) sent me for a biopsy and life as I knew it completely changed.
It then took till the end of November to come up with a diagnosis. Everything else Breast, ovarian, bowel, lung was ruled out. I did not realize that I was being followed by a CUP specialist from early October. This was before genetic testing was readily available.
Even the treatment was a new protocol for the cancer centre. I was told it depends on where the affected lymph node are located.
I wish you well on your journey.
Dianne
Thanks for sharing your journey. Must have been scary to know they were using a new protocol. What a good job your dr friend sent you for that biopsy.
I’m gathering that the length of time this is taking is not unusual. Interesting that a CUP specialist was involved you being aware. Hadn’t thought of that but there is a CUP consultant so that could easily be the case for me too. I will ask as it would reassure me a bit if that is the case. Wonder why no-one told you? What a useful site this is.
All the best to you on your bit of the journey.
Kate
Kate,
CUP is a big problem as the best treatment for the secondary cancer (you did not mention where this is) is normally the one used to treat the primary (as this is the type of cancer that has spread).
My understanding is that the oncologist will have a reasonable idea of the area that the primary was from the results of the biopsy. My wife has secondary liver and lung and the oncologist said it is CUP but started somewhere in the upper GI (gastro intestinal) so started treatment with ECX which he calls the domestos of treatments for GI.
That did not prove to be as positive as he wanted so has changed treatment to another (gemcitabine) drug that treats areas of upper GI and this has had some positive effects.
If you have a consultant oncologist I would start by communicating your worries as they are normally very understanding people and will tell you what processes they are following and what the expected time frames are.
If you are not happy with your oncologist you should go back to your GP and ask for a referral for a second opinion (I would do this anyway as it often confirms what is being done is the right thing which does help alleviate some worries). It is worth the effort to go to one of the specialist hospitals (we went to the royal Marsden for our second opinion) as you know they will have access to the latest research.
I wish you well in your journey and hope that you get the support you will need and I will say that this forum and the CUP web site helped me a lot and gave me a better understanding of the problem and how to deal with it.
Thanks Duvlin – useful advice. I wasn’t really sure if people here did the 2nd opinion thing – I know it is expected in the US – so it’s good to know that is another possibility.
At one point it looked as if they were going to treat me for rectal/gynae as the best guess primary (the only secondary cancer found was in the groin lymph nodes) but the PET scan has now thrown up the tonsils business. This means I’m on my 4th dept so it’s hard to say who my ‘consultant oncologist’ is because it changes all the time.
However, the specialist nurse in the head and neck dept was very helpful this morning and is going to chase things up for me so maybe it will all get moving again.
I hope your wife continues to get some benefit from her new treatment.
Best wishes,
Kate
HI Kate
I would agree with Duvlin in the value of getting a second opinion and possibly an Oncologist with CUPspecialism.
My wife was diagnosed with CUP and after a lengthy treatment of ECX found that very little had changed (although tumnour growth slowed down.) Following referral to second opinion and following his advice she is now on a new chemo (Irrinotecan) and the blood markers are showwing proaitiuve results. She has had a second biopsy (neither the first biopsy nor the LAb 21 test provided any strong positive lead as to what the original cancer was). The tests on the second biopsy has revelead a particular type of characteristic that responds well to Cetuximab so she will be transferring to that chemo shortly.
CUP diagnosis and treatment isn’t easy as medical professionals have to weigh up the need for immediacy of treatment with identifying as much info on the tumour as possible. Bringing a second opinion often assist in decision making and our experience has been that the Oncologist welcomes and has no diff with sec opinion.
Hope this helps
Peter
Thanks for the advice. It’s good to know that a second opinion would be accepted or even welcomed. There is a CUP specialist but I haven’t seen him yet.
All these posts have been helpful!
Hope your wife’s new treatment plan brings benefits.
All the best,
Kate
In case anyone is reading this because they are in a similar position, this is what I’ve learned so far about keeping things moving:
- The specialist nurses are your friends. As soon as you get transferred to a new department, get the names and contact details of the specialist nurses in that department. Phone and introduce yourself and ask how things work in that department e.g. when the multidisciplinary team meeting is, or whether the first step will be to see a consultant or be discussed in the meeting. Each department seems to do things slightly differently.
- However, bear in mind that the specialist nurses you got to know in a previous department won’t mind if you call them either.
- The start of the working day (9 ish) seems to be a good time to get hold of someone.
- Be prepared to ring several times before you get an answer to your question. Remember they are generally good people doing their best in difficult circumstances so stay polite. However, be firm and persistent, remember you have a right to be kept informed and treated like a human being.
- Before you phone, get clear in your own mind what information/answer you need and why you need it. I find it helps to write down a few notes to make sure I say everything I want to, even if I start getting upset.
- If they don’t have the information right then, ask ‘when would be a good time to ring back about this?’ and call back at that time.
- If you are getting distressed and anxious, don’t hide it. Remember they are trained to deal with this as well as the medical side and your emotional wellbeing is also their concern.
- Keep your GP up to date (they will usually be the last to know your results etc). You can ask them to chase things up if you don’t feel up to doing it yourself and are worried about delays.
- If the specialist nurses can’t seem to answer your question and it can’t wait for the next appointment, speak to the consultant’s secretary explaining why it is urgent/important and what else you have already done to try to get an answer. Sometimes it is possible to speak to the consultant on the phone.
- And finally…remember to thank people when they help you.
Excellent advice. It would be nice to think that one would have just one named nurse who would cross boundaries. This is the intention of the NICE Guideline but I know reality is different and one has to work best with the system one finds. I think in USA they are sometimes called a Pathway Guide and this strikes me as a good descriptor. Every cancer patient should have a Cancer Nurse Specialist (CNS) but I know that even this is not always achieved. We live in the world we find, and work for the world we want!
Thanks John. I thought the University of Southampton research presented at the CUP conference was spot on about what patients need with a Pathway Guide type person at the top of the list. As a teacher I keep saying I need a form tutor to track me through the system!
Sorry to hear not everyone has access to a CNS. They have been the ones who have kept me sane. Hope Macmillan can help fill the gap for those people, although it is not the same as having someone with access to information about your appointments and test results.
Glad places like this exist to help to work for the ‘world we want’ as you say.
Kate
I have a very similar story, groin lymph nodes with no identified primary. I had a biopsy mid Feb and started treatment mid March, 4 weeks after initial diagnosis. I have had 3 of four chemo cycles and due to start radiotherapy in 5 weeks. I am not seeing a cup specialist. Where are you being treated, I chose to go to the royal mars den and they have been superb. Whilst I accept why they want to try and find the primary I have been advised they may never do so. It makes it very hard to deal with and understand. I am only 32 and have a 15 month old baby girl so it has been really tough. More than happy to give you more details on my treatment/tests I have had.
Jo
Wow! That was quick. What investigations did they do? Did you have a PET scan? It’s the PET that has held things up really because it flagged something in my tonsils. If that hadn’t happened I would have started treatment a couple of weeks ago I think.
Must be tough with a toddler. Hope you have some help there. I’m 46 and have 4 yr old twins. It’s them I worry about of course.
I saw head and neck doc on Fri and they are now investigating my tonsils. However he said if the only signs were groin and tonsils it would be so unusual they would publish it! I have some tests this week and then back to that clinic Frid. To get me in quickly I saw someone less experienced but am seeing the big man next week who I suspect may suggest no further investigation and to get on with treatment if nothing shows up on this week’s tests. I think I’m going to ask for a 2nd opinion though, just in case. I’m at Guys and St Thomas’s so I’m confident about the medical expertise, but I don’t want to be an ‘interesting case’ if you know what I mean.
I would be very interested to know more about your treatment.
Thanks for your message and best of luck with it all.
Kate
Kate
I had CT, PET and MRI scans. PET showed nothing other than something minor on my lymph nodes on my neck but after a needle biopsy was inconclusive they ignored it. I have had full Gynae check and a Endscopy but both showed nothing. The Gynae oncologist I saw was pretty definite I may never find a primary.
I am having a combination of Carboplatin and Etoposide and after two cycles a CT scan showed the lymph nodes had reduced down significantly so they are very happy. I know the Royal Marsden make a big thing of giving second opinions so may be worth a look.
I have had private health insurance but my NHS GP was very quick and would have referred me to the Marsden if I wanted as I did discuss doing it on the NHS. My consultant said it would not be any different in terms of treatment.
I presume if you are at Guy and St Thomas’s you are in London? If you ever wanted to meet to discuss any of it would be happy to do so, it is a funny one having CUP as you don’t fall into any category so it is tough.
Jo
Hi Jo,
That all sounds very similar to my journey so far and it’s useful to hear your experiences.
Been talking it through with my husband and I think I’m going to see what the consultant says on Friday and go from there. If they have found nothing from the fine needle aspiration in my neck and CT scan of the neck but are still saying they want to biopsy or even remove my tonsils, I will ask for a second opinion. Although I guess waiting for that might cause as much delay anyway. I also had full gynae check and they also did a sigmoidoscoy and cystoscopy (rectal and bladder) at the same time so they have been pretty thorough. It just feels as if the tonsils are a bit of a red herring. I first noticed the lymph node back in August without being aware of the possible significance, so I do need to get on with some treatment.
I am in London and would welcome a chance to talk it through with someone a bit further along the journey.
Kate
Hi Kate and Jo
I would definitely recommend going for a second opinion. I believe that Duvlin and Sally who use this website used the Marsden for a second opinion and were v satisfied.
The second opinion that Mel, my wife, had was a CUP specialist up here in the north and his advice really opened up the options for treatment which she is carrying through now. Though we are having to move hospitals out of Wales to access it.
(There are several leading CUP specialists in London such as Dr Wassan who I believe was a speaker at the CUP conference.)
In particular although Mel did have a PET scan her second opinion stressed that the key was not necesarily finding where the primary was, or had been, but rather trying to find out the nature and characteristics of the tumours. Though the Lab 21 test she had was not conclusive, Mel had a second biopsy which did identify something called KRAS mutant status (KRAS wild) in the tumour and the potential for Cetuximab as the chemo to treat. Her treatment is also likely to include SIRT treatment in addition to the Cetuximab.
Its interesting that you had a specialist nurse assigned. This option was not offered in our cancer centre at our current hospital as I don’t think there was a CUP specialist nurse. It would have been a wonderful support. (Having said that, the care and clinical support from our original Onc and the nurses in the centre has been excellent.)
Hope this helps
Peter
Thanks Peter – that is all interesting and useful to know.
I don’t think there are any CUP specialist nurses. It’s part of the problem – the specialist nurses have been great but they change each time I move department and I have to make new contacts. I think it would have made a world of difference to have been assigned one person from the beginning and I know it was one of the things recommended by the research presented at the conference.
I wish you and your wife all the best. It certainly sounds as if you have kept yourselves as well-informed and engaged as possible to get the best treatment.
Kate
Hello Kate and all,
I was diagnosed with CUP (squamous cell – mets to groin node) in February. I had surgery to remove the whole chain (thigh to pelvis) on the right side in March and am now undergoing 15 sessions of radiation therapy. Only one of the nodes had cancer but it had breached its capsule, hence the radiation is required. I wasn’t given any treatment options – my understanding was that, given the presentation (3-4 cm lump in my groin), there weren’t any options. Complete dissection was required. Period.
The other fact is that it is HPV negative which means likely not gynecological in origin. I’ve had all the tests – CT, PET, endoscopy, ENT, and even a dermatologist examination – all negative.
Not sure what the next steps will be for me after the radiation.
My oncologist said there will surely be some lymphedema, at least in my upper leg, because of the complete dissection and I’ll have to wear compression for the rest of my life. Wondering if anyone out there has had any experience with the lymphedema effects?
Sid (my nickname)
Kate, Glad things appear to be moving on for you now. The Royal Marsden were quite quick withthe appointment for the second opinion and after they had a sample of the original biopsy they have undertaken further tests and have given us a high probability for the primary (cholangiocarcinoma).
Our Oncologist does seem to have taken this on board (I am guessing that he has actually dicussed it directly with them) and my wife (Julie) now has her treatment tailored to this so we are hoping for good results. Julie did start with ECX, which looked positive from the blood markers but scan proved otherwise, then moved on to Gemcitabine. The next scan was very positive so stayed on this but last scan has showed more nodules. Julie is now going on to a mix of Gemcitabine and Cesplatin which is the recomended for cholangio (ceplatin is part of ECX so was probably residule in her body so worked with the Gemcitabine to give good result)
Although Julie is being treated through our private health I do think that the specialist NHS hospitals have b etter research facilities and therefore the pathology tests carried out by them (Proffesor Stamp in our case) have a greater scope for determining types etc.
As Peter has said we are very satisfied withthe support from the Marsden and would recomend that you ask you GP for a referal anyway as it can only do good and at the end of the day you need everybit of support you can to get through this.
Regards
David
Hi ,
Just catching up as I lie in bed recovering from a tonsillectomy. Not up for a long message just now but just to say thanks for messages and sharing experiences. Wishing everyone luck and be back when I’m less sleepy.
Sorry to hear, Sid, you are likely to have lymphedema. Was warned about that possibility when they removed lymph node and it didn’t sound like much fun. Part of this journey seems to be about learning to live with the lesser of two evils.
Hope Julie’s new treatment brings benefits.
Kate
Hi,
Kate and Dianne, I am wondering if your cancer is/was sqamous cell?
Mine was SCC which dictated the treatment (ie. surgery and radiation but no chemo).
I am now done treatment and my oncologist also says they will likely never find the primary. I will now be followed up regularly with CT scans, etc.
By the way, my PET also threw out a red herring as there was elevated activity in my esophagus which turned out to be mild esophagitis.
Hi,
Yes, Sid – it was squamous cell and, like your oesophagus, my tonsils were a red herring, as suspected.
Last week I went back to the colo-rectal dept – they were my point of first referral and have (apparently) been co-ordinating everything – wish I had known that earlier as it would have helped to know that one consultant was tracking me.
They’ve confirmed I have no ‘clinically detectable’ cancer anywhere currently. I was given the option of chemo as a ‘domestos approach’ to try to mop up any cancer cells not showing on a scan, or ‘watchful waiting’. I said I would rather avoid chemo if possible and the consultant said that is what he would do if he were me. So that is the plan.
I’ll have a PET in 2 months and another 3 months after that.
I have been very, very lucky so far, I know. Something slow growing (first noticed the lymph node back in August) and in a lymph node that was easy to spot rather than something internal.
Apart from a thoughtful few, my friends and relatives are all going ‘hooray, it’s over!’ but of course it’s not quite as simple as that. As you will all know, not knowing the primary site also means uncertainty about how likely it is to come back etc.
Do those of you who have finished treatment and been told ‘it’s gone’ have any tips for putting the worries to the back of your mind and making the most of your life? Or is it just one of those things which takes time to adjust?
Kate
Hi Kate,
Did you have just one lymph node removed? Or the whole chain? I had the entire lymph system in my right groin/pelvic area removed even though, like you, there was only one node involved.
thanks – good to hear you are through this initial stage and results are very optimistic for you. I do understand what you mean though – I was given the same positive prognosis, but the little black cloud says that they can’t find it and it has a propensity to spread.
I only had the one node removed and that was the excision biopsy which was what then provided the diagnosis. Compared both to what I was lead to expect (radiotherapy with possible chemo) and what I’ve heard from people like you in a similar situation, they’ve been very cautious. I think this is because the lymph node had not grown between August and January and was still only about 1.5 cm. I guess they have to do some tricky weighing up of the risks of treatment versus the risk from the cancer. Not something I would like to be responsible for!
With regards to the little black cloud and ‘tendency to spread’ – that is just how I feel at the moment! I think that is also what others find hard to take in. They just hear the ‘it’s gone’ part. If you’re the patient I think you’ve had the rug pulled out from under you once and, even with a positive prognosis, it just isn’t possible to step straight back into life as it was when this was something that happened to other people.
Hi all,
I haven’t posted in some time; life around you doesn’t go on hold for you while you are going through this. I had my 3 month CT scan, which was clear. But I remain mistrustful. Kate, I can really relate to what you have been saying – your comment about not being possible to step straight back into life is so true for me too. I am back into a mostly normal routine but the scar, the upcoming tests, the lymphedema, the worry every time I notice anything different in or on my body – perceived or real – they are all constant reminders.
Hope all of you are doing well.
And unfortunately the little black cloud didn’t go away. My last PET scan showed that the cancer was now in another lymph node. I’ve just finished week 3 of 4 weeks of radiotherapy which will hopefully zap it and am waiting on the LAB21 Cancertype ID test to see if this helps to narrow things down a bit.
Glad to hear you’ve had your first all clear Sid – here’s to more of those for everyone here!
I’m so sorry to hear about your PET scan results. I sincerely hope the radiotherapy is successful. I find it so puzzling that your case sounds so similar to mine – both groin node squamous cell – but the treatment and tests are so different. I was told that a PET scan won’t yield better results than CT scans and I don’t even know what a LAB21 test is. My next test will again only be a CT scan.
Good luck Kate
Hi Sid – you can find details of Lab 21 and other companies offering ‘tests’ on this page of our website http://www.cupfoundjo.org/diagnosis_and_treatment/special_tests.html. Our policy as a charity is to make information available but not make particular recommendations and we don’t receive donations from any of these companies.
Well, my cancer has ‘declared itself’ as they say (makes me think of a 19th Century duel) so I’m officially no longer a CUP patient. A follow up PET scan after the radiotherapy I had in Sept showed some activity in the anal area, which has already been thoroughly looked at and biopsied. I was told it was ‘unlikely’ to be anything but that the surgeon should have a look as they are better at visualising what is there. I think a total of four people looked and said they thought it was probably a pile or something but the consultant/surgeon said straight away that it needed to be biopsied. He was obviously right and a subsequent MRI showed a small tumour in the anal canal. At first it looked like it would be surgery and collostomy bag because I’ve already had radiotherapy to the groin but apparently they have a shiny new machine which can minimise overlap with the previous treatment and means they can do chemoradiation after all, which would be the best treatment in my situation.
A friend who is dealing with cancer told me early on ‘you’ll find it’s funny what starts to sound like good news’. Me and my sister came out of the appointment with the oncologist saying ‘Great! They’ve found anal cancer and you can have chemoradiation!’ I certainly wouldn’t have thought that was good news a year ago. The treatment sounds pretty grim but the oncologist was upbeat about the chance of success.
Of interest for those who are looking into Lab21 – my report said 90% chance of cervical but in my case that was wrong.
So, officially I’m not CUP any more but I still feel affinity with all of you here and will stay in touch.
Kind thoughts to you all and thanks for the support from this website which has seen me through some very dark days.
Kate x
Thanks for the update Kate. As you say, strange to say good news. Have you told Lab21 people? They might be interested? Best wishes for the treatment.
Thanks John. My consultant (who recommended the test) said he would feed back to them as, like you, he thought they would be interested.
Kate, First heartfelt wishes that the chemoradiation is successful. I hope that “small” tumour means that it is caught early and completely treatable. I have not been online in a while as I am back to work full time and work/life is as hectic as it was before my cancer journey started, but because I read that your cancer had declared itself, I made an extra effort to ensure I was examined more closely (not a PET – just a routine dermatological visual exam), but they still found nothing. My last CT in March was also still clear. Take care and thank-you for making the effort to share and inform.