Hello,
Its been 3 days since my mum has been diagnosed with CUP. She has been told her cancer is hormone driven as there are oestrogen markers and the cancer is currently in 3 sites in the lymph. So far they have done mammogram and ultrasound, CT’s of everywhere and ultrasound of ovaries/womb etc. They have told us PET scan not helpful here and she starts chemo on Tuesday which treats breast/ovary etc. They said her markers for gut etc were very low and CT clear and they did not want to delay treatment anymore with further tests. Mum currently has pain in her sides (abdo and kidney area). We are still in total shock and I am the only child so need to get very clued up quickly to support her and Dad. Is there anything else I can do? Also we have only 3 days to prepare for chemo….any advice?
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Hi – I am so sorry to that your Mum has been diagnosed with CUP, it is really difficult to come to terms with.
All, I can say to you is everybody reacts differently to chemo depending on the chemo given and the person. Your Mum will be given anti sickness medication that should help her lots.
I was much the same with my brother worrying about how to support him and our elderly parents, but you find a strength that you never knew you had and you deal with everything that gets thrown at you. It will just come naturally to you.
One thing is for sure you will lots of support from this site, there are a bunch of amazing people on here
Stay strong and keep busy
I will be thinking of you all
Tanya x
Very sorry to learn of your Mum’s diagnosis. I can understand what a difficult time it is for you all. It is very difficult to know what helpful advice to give. Hopefully others will chip in. My take on the diagnosis (as a layman) from what you’ve said is: I can see that a PET scan may not add any more information. Presumably the clinicians have determined their course of action based on the evidence they do have from the (immunohistochemistry) samples. This is what has led to the hormone relationship and therefore the logic of a breast/ovarian link. Has a biopsy been possible/taken if appropriate if there is an evident secondary?
I think that you have to be sure that the treatment regimen is based on evidence rather than guess work – or if there is an element of guesswork it is based on the oncologist’s considerable experience. Has he/she discussed with other experts? Always worth asking politely how many CUP cases the oncologist has treated and whilst no two CUP cases are the same, if there is an element of guesswork then it needs to be based on experience of reasonably smilar patients. The NICE guideline should be directing the way your Mum is being treated. You can see it here:
http://www.cupfoundjo.org/diagnosis_and_treatment/nhs.html
It is based on expert opinion and evidence. I’d suggest that you skim it to pick-up on any relevant parts. As you’ve indicated, carers of CUP patients are best to understand as much as possible about the disease and treatment. I’m a believer in informed patients and carers asking questions politely the whole time particularly if you are not being told things. Why are they using a particular chemo combination; what do they expect from it etc. ? Keep asking until you understand. Everything I know about CUP is on this website and coupled with the views of others who I hope will add their comments I hope you will find useful info here.
Hi Tanya and John,
Just wanted to thank you both for your replies. Both very helpful. I have read the nice guidelines and it was clear to me that we have so far only seen an oncology registrar on the ward and mum starts chemo on Tues with no key worker or specialist nurse. According to the guidelines she should at least know who is the lead clinician in her care. So on your advice John I called the oncology unit and asked those very questions about there experience etc……I had a call from the oncology manager and soon after an appointment arranged now to see the consultant on Monday. It is clear they don’t have a specialist in the field of CUP nor a specialist nurse, which fails to meet the Nice recommendations. I have therefore requested a second opinion too from a CUP specialist. I would not have done anything without your sound advice. We are scared of the prognosis and what we might be told, but at least now we are seeing the organ grinder so to speak. thanks again. a great help.
Good – well done. “CUP specialists” are as rare as hens teeth, if they exist at all, but there are oncologists with different degrees of experience with CUP (given that 11,000 people a year are diagnosed each year in the UK there will be oncologists with considerable experience). If, in relation to the Guidelines, they say “they are only guidelines” they should be aware that there will be more force behind them when the Peer Review Measures come into force (was going to be this March but I suspect it is more likely to be April/ June). They will have to find a way of resourcing the “Measures”. I think the most important point is to get your Mum’s case reviewed by an oncologist with experience of CUP.
Often in dealing with CUP, it seems to take forever to settle on a diagnosis. I also had three days notice to start my chemo.
I still have a lot of faith in my “team”. They were honest “we don’t know if the treatment will work” but encouraging when the lymph nodes started to shrink. I asked for a PET scan but was told it was not necessary. I even paid for it myself. It didn’t show the primary either. They were right.
Above all stay positive. I glad you found this site.
Dianne CUP survivor 4+ years