Would love to hear some of your experiences in terms of what appointments you were offered after finishing treatement.
I finish treatement next week - last radiotherapy session on Monday , but have been told that is it - the hospital is basically done with me and I’m on my own.
Am very shocked and upset not to have a final review with my oncologist, no-one has told me what comes next (mammograms, follow up appointments etc), and I have questions! Feeling totally abandonned.
Would appreciate hearing if this is normal or not, did you have a final session and are you having regular follow ups after treatment?
Hi VJ, I had a follow up appointment with my onc 6 weeks after finishing rads. I did go and see my BCN in between though as I needed my wound/skin looked at but I made that appointment myself. my onc doesn’t want to see me now for a year but I will have a mammo in April, one year on from initial diagnosis . I would give your BCN a call and ask about follow up. Em X
Hi VJ
I finished rads just after Christmas, I had an appointment for this Monday which the hospital cancelled and rebooked for beginning of March (9 weeks after finishing rads). I had to e-mail BCN on another matter and mentioned this to her, she reckioned I should be seen before that and was trying to get an earlier one.
Below is a short paragraph I have cut and pasted from the Macmillan website:
“The positive effects of radiotherapy may take some time to show. How well the radiotherapy has worked will usually be assessed when you go to your first follow-up appointment, which is about 4-6 weeks after the treatment has finished.”
I think you shoul speak to your BCN about this.
Take care. Maggie
Thanks Maggie & Em.
I think after my last radiotherapy appointment tomorrow I will go into the oncology department and just get the receptionist to make me an appointment with my oncologist for 4-6 weeks as you suggest. And good luck to her if she tries to refuse me!
Hope you both doing well and getting on with life…
It’s a bad time finishing rads and active treatment. For so long you’ve been going appt to appt, treatment to treatment, and thats it - now is deemed time for you to start your long recovery and the medics can’t help you do that so you’re on your own. I likened it to being on a treadmill chuntering at a steady pace then someone presses the red button and it stops and you don’t want to / aren’t ready to stop. As others have said, you’ll see your rads onc about a month or so after your final zap, you’ll have annual mammograms which date from about your first dx date, and if you’re like most people your onc and breast surgeon will divide you up between them so you see one every 6 months, and therefore each specialist once a year, if you’re with me. This I think continues for 5 years, and then the frequency slips again. Your BCN probably won’t actively pursue you - she’s too busy - they are so over loaded! - but will be at the end of the phone if you have any niggles or worries.
But now is the time for you to start slowly to stand up and decide the rest of your life is in front of you and try and put behind you what has happened recently and go forward and enjoy life!!
Hi, I was dx in Feb 2008, finsihing treatment on new years eve of the same year before starting 5 years of hormone tablets. In my area everyone is seen twice a year, once with the surgical team and once by oncology. The surgical visit is a hands on and chat about any worries, if you want lipofil or any improvements. Before every oncolgy visit we have full blood test, tumour markers, liver profile, bone profile, etc. I go for these the week before and the onc has the results in when I go as well as another hands on check of breasts, back and neck. On dx I had ct scan, nuclear full body bone scan, chest x rays and ecg. Two years later I had full scans again just to check (not checking for any reason, just routine). I have mammos every year and dexa scans every 2 years as on femara tablets now to check for bone loss. He has told me that they may discharge me in a year if still ok but when i said this worried me he said they would never make me stop having checks if it reassured me. I think we are fortunate to get so many checks as many areas don’t. Most of my friends have mri scans too if they had any nodes involved. I don’t go to one of the biggy hospitals but we are a centre of excellence. I hope this helps rather than makes you feel you should have more too. Good luck and well done for getting through to this part. i found the end of each stage rather worrying, My next worry will be stopping my tablets. Maybe I should stock pile and carry on ha ha. Good luck to all of you. Lily x
Hi VJ,
I finished active treatment on 21/01 and have received a different kind of treatment to move me out of “Treatment” and into “follow-up”. Afer my final rad I saw my BCN for 30 minutes who explained what might happen in the 2 weeks after rads and reassure me I could contact her anytime. I then met her again after 2 weeks and was formally told I was now in follow-up and what I could expect. She even gave me a couple of BCC booklets to take away. I already have an appointment with the RT Consultant for 6 weeks after the end of RT. I also have an appointment with the Surgical team in March as they and the Onc team will see me every 3 months in year one (alternately) I even have my Onc appointment for June. I don’t as yet have an appt for a mammo as this will be due end Feb/March this year. I feel lucky that the system at my hospital has been so slick and well organised - so it can be done, and it should be done for you! Keep pushing
Helen
Thanks all, really helpful to hear what everyone is getting. I was told on finishing the rads that a follow up appointment will be in the post, so seems like there is something after all. Possibly I just got some bad info from the radiology nurse. But its good to know what everyone else is getting so I know what I should be offered - and shall push for if not!
Nina - thanks for the advice, you are right about getting out there and starting life again, just having a little wobble and scary moment first!
Thanks everyone, Vicky x
Oh it’s scary Vicky and you’ll never be quite who you were before, but sit back a few minutes and think of the hell of a journey you’ve been thru and then ask yourself if you can expect to be unchanged. Also take a few minutes to congratulate yourself on getting thru that journey. You’ve been very brave to do so and have summoned up depths of strength from within you which you never dreamed you had. Those depths are now with you on an accessible level for life.
I thought when I got my sec dx that that was it - life over. Its now nearly 2 years since and OK I’ve had some bad times but I’m having good ones right now - mentally I feel great - (maybe not best to ask about physically…). Looking back its from the sheer bolshiness and stick it out attitude I learnt in my primary which has got me thru - that and a lot of support from ladies here - but you won’t follow my bad example - most don’t. You’ll carry on hopefully waving the flag when you feel able to do so and go forward and propsper, stronger for what you’ve learnt.
Hi I finished rads last week but before I had even started them I had been given an after the rads appoint with the oncologist which is in April and the appointment for my first follow up mammogram in Dec 13. I was given a leaflet of when to expect all follow up appointments for the next 10 years. I have to say they have been very organised and I know everything is in place but and isnt there always a but I do feel a bit like I have been on and am still on a conveyor belt. Thanks to everyone on this site coz it has kept me sane over the last 4 months
Hi Vicky,
I had my last tanning session 2 weeks ago and was told by the radiographer that I would be seen at Glenield hospital in 1 year (I had my op there) and then Leicester Royal Infirmary the second year (I had Radiotherapy there) and that it would alternate like that for 5 years, and that was it. Though I did see the oncologist’s underdog for about 30 seconds the day before my last tanning session, he took a quick look, told the nurse to sort out som gel for the radiation burns and he was gone !!!
Make sure you allow yourself as much time as you need for your wobble.
Keep smilin’,
Von xx
Hi,
Right there with you ladies.
I finished Rads 5th December after Chemo, Bilateral with tissues expanders.
I got an appointment through EVENTUALLY for Oncology which was last week. After waiting an hour & a half I was seen by a Registrar - just fresh out of the packet! She was pleasant enough but any questions I had were ansered with ‘We have given you chemo, surgery & radiation’ She argued with me about the results of the post surgery pathology - they had found invasive & a tuberous cancer in the supposed to be non invasive affected breast - until she actually looked at my record on he computer. She then told me they would not need to see me for a year. I lost all confidence and gave up with the rest of my questions, and came away quite upset. For the first time since diagnosis I actually broke down. I don’t know why -a combination of the unknown or the feeling of being abandoned? No advice on what to watch for, who to talk to if worried, effects of treatment etc
Anyway I phone my BC nurse, who I had not spoken to since chemo last June, and she seemed to know right away this registrars lack of ‘people skills’ and she gave me an appointment to see her next week. Reading here I know my fears & emotions are very common. We are intelligent people and given the right information & advice we can learn to deal with it all, but being treated like a case study instead of a human being is not on.
Broomsticklady - you are so right about bolshiness and going forward, I have been bolshi up until last wekk, but I’m getting my fight back. I’ve still got a lot of pain & more surgery to go through…but I will not be beaten - too much trouble to cause!
Just had my first anniversary check up and really need to let off steam! I am really pi***d off.
Now it has happened I just don’t know what the point was. I have found this first anniversary period suprisingly emotional and was quite anxious about this appointment as I have noticed a lump in my armpit over the last 2 weeks. Spoke to my BCN about it 12 days ago and she said it would be looked at in today’s appointment.
I had a mammogram yesterday but the images were not available today. Saw a new Surgical consultant who gave me minimal eye contact and expressed very little interest in me - no open questions just the “you are taking Tamoxifen” type of question. I did eventually manage to tell him that I had some sort of new lump in my armpit that was quite tender. He did exam me and said he could not find any lump - as if I had made it up. So I showed him where and he did find the lump! He said he wasn’t worried about it, so I asked him what it might be. He suggested scar tissue which I had thought of myself, but as my last op was April 2012 I asked him why it might have suddenly started to cause problems now. His response was that this was a good question. He didn’t offer any explanation at all. After some pushing he did say I could request an ultrasound - which I have and I should get an appointment in the next 4 weeks.
Is it me? I was hoping that at this stage someone would be able to reassure me that there was no evidence of disease just now. What was the point of this consultation if all the information is not available. What is the point of the consultation if the Dr is not actually going to engage with me as a person or be able to say with some degree of confidence what is going on in my body. I am feeling angry, upset and soooo frustrated. Were my expectations too high?
Helen
Hi Helen
im not surprised your Pi**ed off I would be too, I am like you just after my 1st year from DX and like you had concerns that i wanted to raise at my check up, UNLIKE you the hospital ( Im royal marsden ) did mamogram, ultrasound and manual check to reassure me all seemed okand spent agood 20mins chatting over any further concerns with tamoxifen etc, I think its a disgrace that you have been fobbed off with such an attitude if your really worried which yoiu sound like you are make a fuss hun, you shouldnt have too I know but dont sit and worry in silence pick up the phone and harrass until you get listened to, good luck hun xx
Hi ladies,
Thanks for your experiences, I’m glad to hear I’m not the only one feeling abandonned but at the same time sorry some of you are in the same boat, and having unsatisfactory support after finishing.
I’ve chased my hospital following finishing rads and sure enough there is no final appointment, I was told that at some point (no indication of timescale) that I would hear from the Breast clinic for a routine mammaogram. Put my foot down and asked for an appointment with my oncologist - so off to see her tomorrow. Can’t believe that there is no routine follow up appointment - maybe I’m being needy, but I need someone to tell me that its over and I’m done and the cancer is all gone. And to explain what happens next, when my appointments will be, who with, what are the chances of it coming back, what to look for etc.
So i’ve written my little list, ready for tomorrow and I will try not to get too upset (seem to always end up crying, my emotions seem to just leap out of control as soon as I go through the hospital door).
Helen - hope you are feeling are feeling calmer, although it sounds like you had every reason to be upset.
Lottie - fabulous news on getting to the 1year stage. You must be feeling great.
Reading all your posts has made me really angry about the way some women are dealt with once treatment ends. It’s that old postcode lottery again. VJ, Helen and Luluspice, much respect to you for your fighting spirit but you shouldn’t have to be fighting for decent follow-up; you’ve done more than enough fighting in dealing with the illness. I really hope some health professionals are reading this and recognising how important their attitudes are and the difference some basic reassurance can make. The emotional aspects of illness are just as important as the physical ones and for that reason alone there should be formal follow-up, not just reliance on patients feeling able to contact the BC nurses (who are great but very over-worked). I do wish you all the very best for the future.
Thanks Mishkadog, I have indeed calmed down since my last appointment. I realised that I needed someone to look at the tests and do an exam and say we cannot find any evidence of cancer. I need it to shut the door on the last 12 months and move on. It was unusual for me to be treated this way so I contacted my BCN and she has been very supportive. I now have another date in mid-April for a review when my mammo and ultrasound results should be available, so hoping I will get the reassurance and closure I am wanting.
I will see my Onc in June and it looks as if I might have to talk about achey joints and Tam (I know there is another thread on this). If I have been sitting for any time my hips seem to seize up and I waddle like a very old lady.
Does anyone out there take vitamin and other supplements? I am not sure what is safe to take with Tamoxifen and I need to keep taking the Tamoxifen (achey joints or not).
I feel so much better after reading the above posts! As it seems most patients are just dismised with a see you in 6months!
After so many cockups with my treatment, I don’t wish to have anything more to do with my oncologist, My surgeon has said that he is prepared to see me every 6 months but he would not be doing any scans or bloods, and would only check on this if I had any symptoms, but of course at anytime if I had anything worrying me he would more than happy to see me to discuss the next step,
I am on Leterozle at the moment I do have bone and nerve pain but I am coping with that, I just thought that maybeI was shooting my self in the foot by not seeing a oncologist once a year, but it seems that this is quite the norm, my surgeon has said that if he needs advise or for me to see an oncologist then he is quite happy to work with another trust.
You do feel abandoned! It’s quite scary really, I really do think you should have some sort of meeting with your Oncoligist/ surgeon/ BC nurse to put your mind at rest as to what happens next, I have had that meeting now with my surgeon, but that only came about as I needed some answers, after my appalling treatment with my oncology hospital and I was thinking about taking legal action, but if this had not come about I to would have felt abandoned.
, but have been told that is it - the hospital is basically done with me and I’m on my own.
xx