Hi, I was diagnosed Xmas 2010, had 5 months of chemo, lumpectomy, mx, recon and reduction, back to work full time after 10 months. Due my first 6 month check next week, does anyone have any good advice/questions to ask that perhaps I haven’t thought of? Still seem to have chemo brain!! Does anyone know what they actually do at the check up, is it different in different parts of the country? Shouldn’t be. And I agree with a lot of posts on here, you do seem to get booted out the door and left to your own devices.
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Hi GengyMaud,
I think there’s a lot of variation across the UK, so and even between hospitals, so what I say reflects my experience in one Glasgow hospital.
Ay my six month check up I was seen by a BCN who examined me - breast exam, checked scars on recon etc., checked nodes in clavicle and neck. She asked me about general health and Tamoxifen side effects. She also explained (in answering a question) what my follow up would be.
I think things you’d want to be clear on include:
How follow up works where you are - how often and what it involves
How often they do mammograms (it varies)
What access you have if you have worries e.g. open phone acess to BCN
Who you will see at appointments… I am told mine will alternate BCN and surgeon
You might want to ask what signs to look out for as indicators of possible problems - as no-one tells you otherwise!
For me, the six month checks, with open phone access, for five years feels about right. If I am NED at the end of that I will have annual checks for another five years as I’m at a ‘high risk’ of recurrence.
Hope it goes well for you and you come away reassured.
Hi GengyMaud,
Like RevCat says it may be different in different hospitals around the country, so again this is my experience.
I was diagnosed in Nov 2010 and had 4 months of chemo (every 2 weeks), WLE followed by 20 sessions of rads. Throughout this I was seeing the onc regularly as I am Her2+ so having Herceptin as well. I am almost at the end of that - 2 more sessions to go.
I had my surgery in April last year and saw my surgeon for my 6 month check-up in october last year which was almost a year since diagnosis as well.
At the check-up I had a mammo and ultrasound carried out by the radiologist and then a chat and examination with the surgeon, which was breast exam, checked scar and also checked under arm and across the clavicle and neck. Everything was fine and he wants to see me again in April for another check.
I am assuming that after April it will be October again and not sure then whether it will carry on with every 6 months or go to every 12 months.
I was lucky to have all my treatment private thanks to great health insurance. I came away with a CD of my mammo and ultrasound as well, I suppose just in case I don’t go back to the same clinic next time or whatever.
In terms of follow-up between appointments he said that if I had any concerns to call him or his secretary. I haven’t had so far, but as I said I am still seeing my onc regularly due to the Herceptin.
I will also be seeing him soon to have my portacath removed. Can’t wait for that as that will really feel like active treatment over and done with.
Hope your check-up goes well and all is clear.
Thanks guys. I am Bournemouth and honestly, cannot fault the hospital during all my treatment (although why its called a ‘treat’, God only knows!!). Am 45 now and cannot wait to be 46 in May, I guess I just want reassurance from BCN and Surgeon as we hear of too many that have been told they are ok and then they’re not. How do they know if its spread or not if they only doing mammogram? Yeah they can tell you your boob is fine, but what about the rest of you? Sorry, paranoia setting in!
I think the paranoia is almost normal, at least to start with.
Just as I neared the end of my rads I started to suffer low back pain… Common Sense said ‘muscular’, Paranoia said ‘aaaargh’. I spoke to the onc at my discharge appointment who said if it continued speak to someone else. It didn’t resolve so I spoke to my BCN who questioned me very closely about it… where, when, how intense, did it respond to painkillers etc. then told me it was ‘the wrong kind of back pain’. Suffice to say after a while it resolved itself, and I now think it was probably a drug side effect…
I think now, nearly a year post surgery, I am much more calm about it all, yes twinges and aches can ring alrm bells but I have learned the good advice of the ‘two week rule’… wait two weeks to see if it goes way on its own before speaking to medical people. Not sure we ever lose all the paranoia, but people with more experience than me assure me it gets less the longer we are lucky enough to be NED.
Hi, I had terrible lower back pain and surgeon sent me for a bone scan, which came back clear so that’s good, except I still have back pain. They’ve said it’s possibly old age, arthritis!! At 45???!!! Good God! No hope is there? I left the hospital on nurofen and paracetamol, that’s it! No radiotherapy, no oestrogen positive/negative whatever I was supposed to ask if I was, which apparently I’m not, but how was I meant to know to ask that? Seems every one is on tamoxifan or something, I’m on nothing, wonder if that’s a good sign. Have now got a cold, but I just think back to last year and a cold, ha, walk in the park compared to chemo! I am starting my little list of questions for next week, hope I get some answers.