Taking my daughter to find out today

Hi everyone. Never thought I'd be writing on a forum like this. 

We found out a couple of days ago that my 20 year old daughter has a 'large tumour' on / near her shoulder. Her shoulder area is very swollen. We don't have any more details, but today as a family we are all going to the hospital to see her doctor for what presumably is a briefing on what it is and where we go from here. So far all she's had is an MRI - no biopsy, bloods or anything else, so we can't jump to any conclusions. However, given her specific symptoms and what little knowledge I can find, it's not going to be good. 

There isn't anything in the parenting manual to prepare you for this, and we are clutching at straws. Any advice welcome - my daughter must be terrified but she's putting on a good show. My wife is handling things badly and breaks down / vomits a lot. I also have a 17 year old son who is very stoic. I feel like right now I'm gathering forces for the fight ahead. 

Thankyou all - any advice welcome 

  • Oh no- how frustrating. I am sure you will get a phone call soon with a new time.

    They may even be able to do on Monday before the meeting as it would be seen as urgent. They may be able to suggest a different hospital/setting. Where I am they had a diagnostic centre about 5 minutes from the main hospital that gave next day appointments- including weekends. I was sent there for my scans as it was quicker than the main hospital. These centres were set up to deal with the back log after Covid. Mine takes private referrals but also deals with urgent NHS referrals. I was called late afternoon for a scan the following day. I had the scan at 5pm and by 10 am the hospital were back on the phone to me with the results. 

    It is very natural to want everything done yesterday- it is your daughter and you all need the answers. Deep breath and wait for that call. Fingers crossed it will come very soon. Hope that your daughter is ok- it is hard when you are prepared for something to happen and all keyed up and then it doesn't. I found it was a bit like this during the testing and diagnosis but once I had that- all went smoothly.

    Jane

           

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

  • Hi there. 

    It is hugely frustrating and very worrying. 

    Yesterday my daughter started complaining of hip pain (her tumour is in her shoulder)... we went from a dull ache to her crying in pain and unable to walk much within the space of a matter of hours. All we have is cocodamol and tramadol to try and ease her pain; we don't have a number to call or someone to ask to try and ease her pain at least. I won't even consider dialling 111 because we have never once had a useful experience with them for anything; 999 I guess is an option but I worry that - even if they took her in - the process would take hours, she'd eventually be seen by a junior doctor on duty who would tell us to be patient and advise... cocodamol and tramadol... same story if we go to A&E ourselves.  We have no home doctor option here at all. 

    Any advice welcome. Right now we are just sitting and waiting - and I worry that the MDH will happen and then stop because the PETCT didn't happen. Nothing feels connected right now, we feel isolated and alone and frightened. 

  • Hello Matt

    I've been following your posts and I don't want to step on the great work that  has been doing.

    I think the best option you have is 111. I know you have had a bad experience in the past but, personal experience they have been very good and they can prescribe stronger painkillers than you can get from the pharmacy over the counter. - It's worth a telephone call to try, and better than waiting in A& E for hours.

    Best wishes - Brian.

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  • Thankyou Brian. I guess we will try anything. We have never once had a good experience with them to be honest - not for anything. Normally advice tends to go from 'take a brufen' to 'go to hospital' and nothing in between... but we can try 

  • Hi Matt

    I am so sorry that Eleni has been in such awful pain. I know that you have not had a good experience with NHS111 before but she needs to be seen and for them to get the pain under control. 

    If she has been in so much pain that she can not walk and has deteriorated - I would, with my own family either take them to hospital or depending on pain levels- call 999. If you did call 999 they would assess her at home first and then it would be for you all to decide if she needs to go in. I wonder also if she did go in that it might lead to the scan being done on an emergency basis. 

    You could ring 111 first for some advice but if it was me I would take her in. You are not wasting their time, she is a young girl, going through a cancer diagnosis and in severe pain that is affecting her mobility. 

    Yes, you may be sitting around for a few hours and yes she may be seen by a junior doctor- but at least she would be seen. I waited myself in A+E when I first had symptoms, it was not great but I had lots of testing done, saw a Doctor and it moved things along. Also I think it is always better to go during the day rather than wait till evening/night time. 

    The other alternative to consider is to go to one of the local Minor Injury units/urgent care. I believe you are Portsmouth area and several are showing. They would most likely assess her more quickly and could refer her on if needed. There are several that are showing at the actual hospitals. Maybe that would be a half way point. If you put your post code into google the Minor injuries/urgent care units will come up. I would aim to choose the one connected to her hospital if possible. You could also phone them before leaving home to get advice. 

    NHS111 is an option and they can send a doctor out to her at home/prescribe stronger pain relief but my gut feeling is- if this pain is persisting then take her in to be checked. 

    Jane

           

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

  • Thankyou Jane. 

    We are now being seen; we went to the emergency care centre and at least they're going to see and assess her. 

  • Am so pleased. I hope that they can get her pain under control and find out what is causing it all. Let us know later how things have gone. 

           

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

  • Hi Jane and all, 

    Eleni (my daughter) is still in hospital - which is good because it's the best place to manage her pain. 

    We had the results of the PETCT scan today; it is confirmed that she has a tumour on her right shoulder blade; also her lymph nodes in her right armpit and also right lower chest are hyperactive, but there was no mention that anything has metastasised there yet. 

    On Monday we have our first appointment at the Oxford Cancer Centre, where we have been pre-warned that she may get her first bout of radiotherapy. Clearly still early days for a long term treatment plan, but things seem to be moving forward. Also, I was fearing worse news from the PETCT, so now we have the enemy coming into full view and into our sights, we can target it, focus on it and kick it down the line. 

    Thankyou for your support - this forum is proving to be invaluable to us. Thankyou x

  • Hello Matt

    I was wondering how things were going and pleased that you have had a chance to update us. 

    Am very glad to hear that Eleni is in hospital, having her pain managed and that things finally seem to be moving forward. I think your focus is excellent- I know that it is easy to fear the absolute worst during these tests but now Eleni has had her PETCT results back - the enemy is indeed in sight. Now you know what needs dealing with and hopefully on Monday will find out exactly what needs to be done to deal with it. 

    I am sure you will have a chance to ask plenty of questions on Monday. It sounds somewhat promising that although the scan has shown the shoulder tumour - that the lymph nodes are being described as hyperactive - rather than mets being mentioned. Did they mention the type of cancer they believe it is? I only ask because there are specific forums on here that may be able to offer Eleni and yourself support. Sometimes sharing with people who have the same specific type can really help. It did for me. It is fine though to continue on this forum if you prefer. 

    Radiotherapy is an effective treatment for many cancers- I had 25 sessions myself last year. 

    My goodness- what a week you have all had, but as you say-Eleni is in the right place and it does sound promising that they are talking of starting the radiotherapy next week.

    Please do keep us informed of how things are going and we are here if you need or want to ask anything. 

    Jane

           

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

  • Thankyou Jane. 

    Bone cancer is what we are looking at I believe. Sadly here in Portsmouth they don't have the expertise to provide more in depth diagnosis, but the general consensus is that there is the mass on her right shoulder blade (which we knew / is obvious), plus two active nodules on her lower right lung - but as I said earlier, no mention that they have metastasised which is great. All of this is a learning experience of course, but from what I understand now, it would be a miracle if her lymph system wasn't currently lighting up! And I think on Monday we will begin hitting the bugger hard and fast! They're also discussed discharging Eleni now we seem to have her pain under control; we're going to give it another 24 hours, then hopefully she'll be able to come home for the weekend (and the rugby world cup matches... which she is of course thrilled about!).