Eighteen months on from chemo / mas / rads for g3/st3 b.c and I have found two disconcerting pea like lumps along my collar bone on affected side / and another lump further along, both surrounded by a slight swelling. As I had no clear nodes (so no margin) this is a concern - however, after 10 days of me leaving messages at the hospital my bc nurse finally called me back and said there could be any number of reasons for this and try GP first.
GP was great last monday and said, given my history, we should rule everything out and sent me for x ray that day - still waiting for results. He said & I appreciate, xray may be inconclusive and in that case he will refer me for MRI - at what point should I go back to the hospital? This all feels really ridiculous - I have this instinct that my consultant could take one look and know whether we need to be worried or not. Trouble is, it seems that to get to them you have to get past the Bc nurse (and that’s fair enough I suppose) but I am troubled by the time this is all taking - it is now 6 weeks since I noticed the swelling and three since I began contacting hospitals etc.
Any advice on how to push this along would be gratefully received. As you can all imagine and know from you own experiences the waiting and not knowing is horrible and it’s driving me mad.
Oh poor you! If I were you, I’d get back in touch with your gp asap tomorrow, and ask for referral to breast clinic because of the three lumps you’ve found. You should be seen in clinic within 14 days cos of these lumps. I’m surprised both that your doctor and bcn haven’t already arranged for you to be seen in clinic, but I know that different areas of the country do things slightly differently.
In any event, you’ve found new lumps and like I’ve said, should be seen under the 14-day rule, because of your previous bc history.
Hopefully, the lumps will turn out to be benign, and as they’ve got swelling round them, I’m no expert, but they might actually be swollen lymph nodes because of infection, rather than anything more sinister.
Another avenue you could take - ring the consultant’s secretary and ask them to speak to the consultant about an urgent appt for you.
If all else fails, tell the hospital Shelley will be on her way over to sing to them, if they dont give you an appt. I have a dreadful singing voice!!
Seriously though Green fingers, you take good care of yourself, and I really hope that by this time tomorrow, you’ve come back online here, saying you’ve got an appt coming up very soon.
With much love, and a big caring (((((hug)))))
Shelley xxx
Make a noise. Phone the consultants secretary. Phone the breast care nurses. Phone your GP. If you’re not getting anywhere, speak to the PALS (patient and liaison service) at the hospital.
Don’t be fobbed off. It may be nothing but you need to know whats going on asap. I work as a nurse and can tell you that the people who make the most noise get more immediate attention.
I will do as you say and make a noise. Another day passed today with the GP’s saying the results had not come back yet.
So tomorrow I will get onto all these people. I remember finding this hard through my treatment, feeling that I was being fobbed off and not really always knowing who to turn to. All sorts of things went arwy and now I feel really fed up that I still don’t seem to have learnt how to push these things forwards. It doesn’t seem to come naturally to me.
Thank you Shelley - you made me laugh out loud about the singing. Great idea.
And I appreciate you picking up my question and responding. I’ll let you know you things proceed…
So sorry you still haven’t heard about your results - it really shouldn’t be like this for you! I understand how you’re not normally the sort of person to push yourself forward, but Alesta (Laurie) is right, n if you can make a noise, they’ll have to respond to you. Don’t beat yourself up for not having learnt how to push things forward - you’re you, n if it’s just not in your nature, then that’s who you are.
You’ve got previous experiences of things going awry, and that can’t help either. I can relate to that, cos recently I thought I’d got a local recurrence and cos they cancelled a results appt, it sent me back years to when it took them 3months to diagnose my DCIS. This time, they’d done extra testing to make sure my second bc hadnt recurred (which thankfully it hadnt). But that waiting was awful, and at least they did return my phone calls, and explain to me about the extra testing.
But unlike me, you’re getting nowhere at all, and that’s just not fair! I’m glad you’re feeling able to contact them again tomorrow, n good luck - I’ll be thinking about you!
Well i did as you all suggested and pushed them from making me wait till Monday (another w/e) and they faxed results over and xray is clear. Phew! I will still go back to the GP as my original diagnosis took ages and 7 cms of cancer never showed up in 2 mammogramms and ultra sound! So I am going to push them till we know what exactly these little bumps are.
You’ve given me some confidence to politely push things along and that alone made me feel better.
Even better to get a good result from the xray.
It’s funny isn’t it. how the waiting takes you back to some of these original difficult memories of waiting? I realised how stressed I had become and it all came out after the good news with me getting very short with my wonderfully patient partner.
Anyway, thanks a million and I’ll see what my GP suggests next to work out these lumps.
Good luck you Shelley and hope all is going well too
You were right to be so persistent. I had a D and C back in July and was told I’d get the results back firstly in 7 days, then 14. 6 weeks later I’d still not heard and I am in a high risk group due to a precancer in my 20s plus BC. I rang the Consultant’s secretary and left a message on her phone to say I was still waiting and wasn’t that happy about it. 2 days later a letter arrived in the post. Sometimes you have to really push things with them. My GP surgery told me there are problems at the local hospital with things waiting to be typed up, they are often on at them to get results for people.
Updating folks - after being recommended for an ultra sound by my GP I got on the phone to my hospital and told them what was happening. Good for them, they gave me an appt with an oncologist the very next day - and they think there is nothing to worry about. I will still have the ultra sound when it comes through to be certain.
But what I find so interesting about all this is how persistent you have to be. But there is a fine line between annoying the people at the end of the phone…It also made me realise how much better I am at this than when I was ill. Looking back I felt really pushed about - but that was because when you are ill you are so vulnerable.
Anyway I suppose the point is for anyone struggling with hospitals and understanding the processes - ask what will happen next, when will I get the results, how do i chase them, when should I chase them, with whom?
Thanks everyone for chipping your thoughts in and good luck with your own challenges.