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
Welcome to the Online Community. I think a lot of us feel like you do, that they never expected to be posting on here. But it is a good place, very supportive and I can say from my own personal experience it really does help. Sometimes it helps just being able to write down your feelings and worries. Please do use the forum as much as you feel helps.
I am sorry to hear about your daughter's tumour on her shoulder. The swelling must be painful for her. It is good that they have got the MRI out of the way and you are right in thinking that today's appointment is likely to be a discussion on what they feel it may be and what needs to happen now with regard to any further testing or treatment.
Depending on what they feel it might be, they may well do some bloods or further testing today or at a later time. From the scan though they will usually have a good idea of what is going on. In my situation they were pretty sure from the very first scan and anything that followed was pretty much to confirm what they initially suspected.
At my first appointment with my doctor, I had already had scans done and a biopsy so it was very much a chat about previous medical history, family history and then a discussion about what needed to happen next. For me things did move very quickly from that first appointment.
Although I understand how frightening this must be for you all, I did find once I knew what I was dealing with and when I had a plan of what needed to happen and when, It did all feel a bit more under control. The waiting to find out what is wrong and wanting answers is a hard place to be in.
I would suggest maybe think of writing a list of any questions that your daughter may have and taking it with her. I did the same. I find that otherwise my mind can go a bit blank in these situations. At all my appointments there would be a nurse in the room and after the appointment she took me to another room and it gave me the opportunity to ask questions etc.
You say that your daughter is putting on a good show- it may be her way of coping with what is happening. I also found it took time to sort of process what was happening and in a way it was a relief to find out for sure. What I can say is that you supporting her as a family and taking her to the hospital and being with her will really help. And knowing that she has you all behind her will help whatever is turns out to be.
I wish your daughter well for her appointment and hope that you as a family are well supported at the hospital. Please do let us know how it goes today.
If at any point you feel like you need to talk things through with someone, then I can recommend the Support Line (number is below)
Thankyou so very much for those kind words. Today is just horrible waiting to go to see the doctor. At this point all we know is that it's a tumour, and when my daughter asked if it was cancer, he just said 'yes'. He mentioned that he'd been in touch with the Oxford Cancer Centre but didn't elaborate, so we don't know much else. Certainly the swelling has got a lot bigger in the last 4 weeks, and she's in a lot of pain. It's heartbreaking.
Now we wait. And take it from there. We are heading into unknown territory and its so frightening.
Bless her- it must be so scary for her (and you all) I hope that today will bring you all the answers you need and she will get her treatment plan.
I can remember me walking into the room for the first time seeing my oncologist (on a Friday) who just said- we both know it is cancer so let's speak about what we are going to do about it. The next thing he said was that he was going to operate on the Monday. From then on I only felt relief mixed in with a bit of shock - that it was moving quickly- and a bit of anxiety as I am not great with hospitals.
The Oxford Cancer centre sounds promising as they seem to have the main experts/specialists there. As the doctor has said that he has already been in touch with them it sounds like there has been some sort of MDT (multi disciplinary meeting) and this is where the professionals look at the whole picture and make recommendations for treatment. It is likely that today will be discussing this with your daughter to get her consent and to get some more medical history from her. If it means surgery then they may also talk about the pre op tests etc.
I do understand the unknown territory feeling. At the moment it is all unknown and that is so scary but I hope by the end of today you will all have some answers and a plan. I think today- is a deep breath, keep an open mind/go with the flow and hold on to the fact that although this is going to naturally be a hard day- it is also the day when you will know what needs to be done- and that for me was far better than the not knowing. I am sure they will look after you all well at the hospital.
Please let us know how you all get on later and if there is anything else then please do ask.
This is roughly what I asked... If you click on my name then my profile will come up but for my circumstances this is what I talked about
-if it is definitely cancer- what type?
-what stage is it (Is it local or has there been spread)
-what grade is it? This is whether it is a normally slow growing one or more aggressive. Mine was aggressive
-is surgery an option? I would imagine with your daughter it would be.
-if surgery is an option-what will the recovery be like
-after the surgery will there need to be any further treatment?
- would the further treatment be likely to be chemo or radiotherapy.
-what side effects can I expect from the treatments
-What would you suggest I do if I was a family member
-how long could treatment be
-can I work etc
-is there anyone I can talk to if I am struggling (counselling etc is available through Macmillan and was through my hospital)
-who can I contact if I have further questions/ask for contact details
-what medication may I need
-is there a family link
-after treatment what will the follow up be like. Mine is 12 weekly check ups for a couple of years.
- I am older and already a Mum but for your daughter, if there is further treatment I would be asking about fertility
-which hospital would treatment be taking place at
-when will treatment start and is there anything she can do to prepare for it. eg; is she on any medication that she needs to stop
This is pretty much what I asked but don't worry too much as there will be other chances to talk and ask questions. I always did lists as I found then I was asking about what was important to me rather than what they thought was important. And my mind would just go blank and I would get home and think I wish I had asked that.
It will be a tiring day for you all I am sure, so be prepared
I just want to add, coming from a background of living with and being treated for an (incurable) blood cancer (Non Hodgkin's Lymphoma) for over 24 years...... some treatment routes in blood cancers can be rather different from most other types of cancers.
In late 2013 (14 years in to my journey) I had a very aggressive mass grown rather quickly on my neck, down onto my shoulder and across my mouth. This brick sized mass could not be surgically removed as this is not normally an option with blood cancers but chemotherapy did the job.
Let's look for clear information to come along soon and once she has a clear diagnosis we have dedicated support groups (discussion rooms) that cover all the cancer types………. once you have that diagnosis have a look through THIS LIST where you will find all our many dedicated cancer support groups listed.
We are always around to help out.
We actually didn't get too much more info on Thursday. Eleni (my daughter) had her bloods done, and today we are having a CT scan. The MDH will take place at the Oxford Cancer Centre on Monday and from there we should receive the official diagnosis and way ahead. I / we are taking some positives from that, however. In particular, the surgeon was fairly certain the cancer she has was not what I feared most (thanks to Doctor Google). Plus we know we are in the system now which is reassuring. We know it's a long road ahead, and are also aware not to raise hopes based on nothing but assumptions, but we'll take any positives we can and run with it. We have also amassed a huge army of support which is really helping.
I'll keep you informed of course as to the results of Monday's meeting. Thankyou so much for the support in this forum; I've actually raised money for Macmillan a few times over the years, purely because I felt it was a worthwhile charity. I never once thought we'd be leaning on them ourselves, but already your support has been invaluable! Thankyou so much
Thank you for update. I hope that Eleni's CT goes ok today. Bloods and CT scans are usual in these circumstances and its about confirming the type of cancer and staging it. This will lead to planning the treatment. I wish you all well for Monday and yes please keep us updated.
You are right in thinking that although it can seem a long road ahead, once in the system and close to the diagnosis- it is good because things can start happening. In a way I found getting the diagnosis for me was a good step- it stopped the confusion and worry about what it could be - to the actual proactive steps and plan that I could take to deal with it. It felt a bit more in control. Although the next few days will not be easy for your daughter and your family- the uncertainty will soon be over and I am sure you will all be very well supported at the hospital.
I think that one of the great things with Macmillan is that most people have heard of it and indeed donated/or been involved with it in some way- and then when we need it- we know it's there for us.
Well, this morning the CT scan didn't happen... apparently she'd been booked in for a PET/CT scan which the hospital here in Portsmouth aren't staffed to do on a weekend... so we were sent home to await a call to reschedule. Annoying because I'm guessing it means the MDH won't have that info for Monday. Of course, I want everything done yesterday so patience is being tested as much as anything else, but I think we'll have a lot of these annoyances along the way.