Diagnosed with Unknown primary at 28yrs old - stuck at a standstill

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Hello,

I am currently writing this post for my lifelong friend Danielle (28). On March 24th She went to her local GP with server stomach pain and non stop coughing, at first they tried to turn her away saying it was acid. Danielle knew her body wasn't right and pushed for blood work. The results came back with high levels of calcium and her doctor sent her to the hospital immediately.  Upon arrival at the hospital Danielle had several scans and was then admitted for an overnight stay. 

The next day her whole life was turned upside down, while sitting alone waiting for a friend to arrive the doctors informed her she had cancer in her lungs, liver, head and underarm. They were unsure of the primary source but would conduct biopsy’s to help narrow it down. So far we have had a liver biopsy and underarm biopsy, both being secondary. 

Yesterday June 9th Danielle was informed by her doctor that they do not know where the primary source is and they are unable to accommodate further urgent testing to find it. They are at a standstill. 

I am writing this because we are loosing hope, we are getting no answers or support from the hospital. If anyone has been through something similar or can help offer some advice/ guidance on how to get further testing, it would be greatly appreciated. 

Danielle is a 28 year old woman, who has been the caretaker of her 3 younger siblings since her mum passed away in 2014. Danielle doesn’t have the family support that a lot of people do, she is navigating this alone and while caring for her siblings.

If anyone can offer any sort of help/advice for navigating this (anything at all!!) please reach out Two hearts

sending love to all who have been affected by cancer Two hearts

  • Hi Lolabean - so sorry to read your friends story- you did right to reach out to this group and I am sure you will get a lot of support , inspiration and information. 

    The problem with CUP is that almost every case is different - apart from no-one knowing where their primary is (or even if it is still there).   Specialists can sometimes narrow it down to the type of cancer from the results of biopsy and are then able to offer more targeted treatment. 

    It is alarming and sad that the hospital are not providing any advice or guidance - contact MacMillan and see if there is a way forward with this - other group members have had similar frustrating experiences and hopefully they will respond to you.  

    Best of luck with your efforts to help your friend - try not to google !  The best information is from the people in this group who are going through this themselves - I myself got a lot of reassurance and hope from reading the experience of other members.

    I had secondary liver and groin lymph node cancer - after 600 hours of chemo I had both tumours successfully removed and I am now in remission - but with CUP the future is always  unknown. 

    Best wishes

  • Hello Lolabean

    Welcome to the Online Community.

    I hope that you and Danielle will be able to get the support you need from here. I found it really helpful to share my situation with others going through a similar journey. I found the community really supportive and informative.

    I am really sorry to see that Danielle has been diagnosed with cancer and that they are unsure of where the cancer originated from. This must be hard for you both and I can understand that you are both worried and will have a lot of questions that you need answers to. I am sorry that you are not getting the answers you need from the hospital and this must be making things feel a lot more difficult. I am sorry that Danielle was told about her cancer while she was on her own and waiting for a friend. 

    I will pop a link here that may be of some help as it tells you about her type of cancer and some of the testing and treatments that she maybe offered in the future. There is also some information on there as to why the primary cancer may be difficult to find. I would advise against googling to get information as with something this important you need to make sure the information is accurate and up to date. 

    Cancer of unknown primary | Macmillan Cancer Support

    What normally happens from my own experience is that the testing and provisional diagnosis is looked at by a Multi disciplinary team who will look at Danielle's results so far, symptoms etc and come up with an agreed plan for treatment. With cancer of unknown primary it can be difficult for the doctors to work out where it originally came from as every case can be different. However this does not mean that treatments and further steps can not take place. At my hospital the MDT meetings happened on a Thursday am and it took a couple of weeks for them to discuss my case and to get back to me. I was then asked to come in to see the oncologist to discuss it all. I wonder if this will be happening and that they have not communicated this to Danielle. In my experience sometimes there were lots of things happening behind the scenes that I did not always know about at the time that made the waiting harder.

    Usually you are also given a Cancer nurse specialist that supports you and can be a first point of contact. If Danielle has not yet got a consultant's name to contact she can also get on to her own GP. My results during different tests and during diagnosis were always sent to my GP who was able to contact the hospital directly on my behalf several times. My GP actually managed to get my first oncology appointment the following day. It may be worth a try. My practice nurse at my doctor's surgery was also great at chasing up results and finding out which stage I was in the system. 

    I can understand that this is difficult for Danielle whilst caring for her siblings whilst not having much family support. It is good that she has a friend looking out for her. 

    Just because the hospital is currently at a standstill with the testing and cannot locate the primary it does not mean that everything stops, it means that they need to work out what to do next. I know it is hard to wait during the testing and diagnosis process but in my own case it took 4 weeks from first symptom to surgery and those 4 weeks were full of delays, waiting for different tests, MDT meetings and uncertainties. Once I was given a plan of what to expect it felt a lot more in control. I am sorry that the hospital have not given Danielle more support and advice at a time she needs it. Absolutely do not give up either of you and keep pushing to get the answers that you both deserve and need.

    If you or Danielle feel it would be helpful to chat it through with someone, there is a support line number at the bottom of this and they are lovely on there.

    If there are any medical questions ( we are not medically trained on here so can only talk about our own cancer experiences) we have an Ask the Expert Section which you can use. I will pop a link here in case you need it.

    (+) Ask a Nurse - Macmillan Online Community

    I hope this helps a bit but do please pick up the phone and give the support line a call. They may have other suggestions that can help. If there is anything else we can do to support either of you please just ask

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm