Hello
just after a bit of advice please. A few weeks ago I noticed the swelling was back at my collarbone + my chest wall was increasingly sore, tight + lumpy. I’m triple neg + finished carboplatin end of may. Anyway, I had 2 holidays booked and as I was feeling well, I decided to go away + deal with things when home. I returned home last night + am very keento have a scan + get back on treatment asap. It’s been nearly 3months since I’ve had any treatment + I’ve had a ball, but am anxious about what has happened in the meantime…
I texed my bcn whilst away, and she spoke to my onc but my onc has refused to request a scan until she has seen me + examined me. But she is on holiday herself now + hasn’t got a clinic til 24th aug!! So it would be the end of the month before I’m even scanned!!
In triple neg terms, this is scary as things can happen very fast. So I’m obviously reluctant to wait. To be honest, I’d like something done today! I’ve thought about going to a+e and exaggerating symptoms to be seen + scanned. Or phoning clatterbridge- but they’re likely to stick with my onc’s decision. Or maybe see if my gp can do anything? Can anyone advise me please? Anysugfestions would be much appreciated- I think it would be really fooliush to sit back + do nothing for another few weeks as I would naturally kick myself if the scan shows extensive progression that perhaps could have been nipped in the bud sooner…
Thanks in advance
tina x
Hi Tina
Sorry to hear that your holiday has been spoilt to some extent by worries! I really hope that you get something sorted soon.
I was in a similar situation to you this time last week. I had had a CT in June and hadn’t been given the results, I phoned Clatterbridge before I went away and they said that my onc was on holiday and I couldn’t get an appt until 31st August, as I felt fine I went on holiday and didn’t fret about my scan. however on holiday I had a couple of breathlessness episodes that were quite scary. I came home phoned Clatterbridge and asked for an earlier appt, I said I was prepared to see anyone in the whole hospital to get my CT results! When they couldn’t do this I got upset and asked them to send the report to me, as you can imagine they wouldn’t do this, they did agree to sent the report to my GP.
Last Friday at 5pm my GP got the report, he was furious at the delays, as the scans did show significant progression. He promised to kick up a fuss first thing Monday morning…which he did! By lunchtime I had the appointment for the following day! I also had a few issues with my oncologists which the GP also sorted.
my advice is to see your GP as soon as possible, they do seem to have more influence than we realise! Maybe he will examine you and be able to order the scans that you need, so the results are there on the 24th. Surely they could let you see another onc, some provision must have been leftbfor emergencies in your onc’s absence?
Good luck, I’m sure you could do without this extra hassle, xx
I really hope that you get this sorted asap
Hi Tina,
Sorry you are having this worry. My onc always seems to be on holiday at the wrong time, too!!!
Completely agree with nicky that the best thing to do in this situation is to go to your GP. In my case, I was actually instructed by my onc to go to my GP. Even though they couldn’t do much (starting chemo etc), I was assured that I would be OK until my onc came back. They could also do a blood test if that’s required or probably refer you to another onc.
Hope you can speak to someone soon. Let us know.
Sending you a hug xxx
Hi ladies
thanks so much for your replies. I’m glad I’m not being paranoid or impatient! I have spoken again to my bcn to see if any of the surgical consultants are available in the breast clinic. There are no clinics til Tuesday so I called clatterbridge + the onc secretary said to see my gp who could then push for an urgent referral with another onc if she agrees there is cause for concern (I’m sure they will have a heart attack when tgey see + feel my chest, let alone be concerned!). So I’m in the gp’s now awaiting an emergency appt. Will update you later 
Nicky- sorry to hear you’ve been having a tough time + that you have had progression. Didn’t realise you were another clatterbridge patient- I wonder if we have the same team? I will pm you later x
thanks 2u both for your advice + support
tina xx
Hi Tina
Hope you get an appointment to see another onc at clatterbridge , the good news is if you need a scan you should be able to get one quickly. I saw my onc on Wed at clatterbridge and his secretary rang me Wed afternoon with an appointment for this morning. Scan done, they said they would have the results by Monday but I’ll be on holiday so I’ll wait till I come back.
Sue x
Thanks sue fingers crossed 4 ur results. Have a great holiday + try not to worry x
well, spoke to my other onc late afternoon + as expected, he agreed I should wait til 24th aaaaaaggghhh!! Knew he wouldn’t over-rule his colleague. He was lovely + tried to reassure that a few weeks wouldn’t make s difference. I just feel frustrated + helpless. He did say if breathing symptom worsens to contact him (not sure if I mentioned I have a sensation of pressure on windpipe especially when lying down).
He said scanning too soon isn’t helpful + it’s important to leave a decent length of time between scans. He said it’ll becnearly 3 months + that’s ideal. I feel they almost want to see significant progression rather than trying to treat things early before they get bad…
I’m going to try + stay calm. It’s our wedding anniversary Sunday so I want to enjoy that. I’ve an appointment thus weds with my surgeon so I’ll see what he thinks.
Thanks as ever for ur advice + support
tina xx
hi tina , am so sorry you didnt get the result you wanted, it is so bloody annoying, my onc said he will keep close eye on me and i have had another scan booked for 2 sept, my last one was 12 july. i am not complaining i know he wants to see how capecitabine is doing but we all know too many scans not good but to be honest with tn i think i agree with him,how long have you had the feeling in your throat i too have had this sometime but neck scan was ok, mine seems to increase with anxiety, but had fluid in pleura of lung but dont think that is a symptom of that, you have done all you can do now, and i know its so frustrating,wish i could ease your worries but sending you hugs, and have a lovely day tomorrow xxx