Abandonned! Appointments after finishing treatment.

[Deb2307]

Hi, I have not been on the site for a while but thought I would pop back in. I know this is very much a postcode lottery but I have had really good treatment, I said earlier I had my follow up appointments before I started Radiotherapy and I saw my oncologist this week for my first checkup and because my next appointment is not until December she wants to see me in Aug. I know this appears to be the exception rather than the rule but some oncologist are trying to support just thought those that do need to mention as well.

[VJ1]

Oh dear luluspice, but well done on picking up on that, so easy just to put it down to post treatment fatigue. I'm feelig tired now I'm back at work but I'm pretty sure it is just fatigue and me overdoing it. I have days that I feel full of energy (even cycled 10 miles last weekend) and then a couple of days later I'm knackered. But beginning to find my balance. Was so eager to do everything when treatment finished and haven't exactly given myself time to get over it. I think this is probably a common problem!

At least you had a post-treatement appointment!!

Vicky

[luluspice]

I asked GP to check my bloods 2 weeks ago. She phoned today, my haemoglobin count is very low. she wants me to come in for an Iron level test. Now why did I not get this checked at Post treatment appointment in March? I checked my Chemo record and it is actually lower than when I was getting treatment! I would advise everyone to ask for blood test at end of treatment, we feel sh**ty enough without anemia!!

[VJ1]

oh Helen, that sounds crazy how can they reject a request for something so simple and inexpensive as an ultrasound?? Not like it was a CT or anything big. That is appalling. Glad that your BCN is getting things sorted for you. I do wonder what we would do without them sometimes. Try not to worry too much, hopefully its just something silly and minor. Just after I got diagnosed last year I went for a bike ride and got a stiff neck - so much so that I actually managed to trap a nerve - the one that goes down to your thumb, and ended up with a numb thumb for 6 weeks!! very bizarre and silly!

Hang in there, you've got through worse.
Vicky

[HJU63]

Hi All,
Vicky very pleased to hear that it was just a scare.
I am still waiting for my requested ultrasound. As I had heard nothing I contacted my BCN this week and she discovered that the request had been rejected (no idea why) but I am to go to her next Wednesday and she will sort out the paperwork so I can have the U/S that afternoon. The "thickening" under my arm seems to have stopped growing but I have tenderness in the armpit, on the back of my shoulder, down my arm and now in my forearm. Lost quite a bit of mobility in my arm. Its almost as if I have cording again(?). Anybody else had symptoms like this so long after surgery (11 months) and after RT?
Helen

[catseye]

So glad to hear everything was OK Vicky.
Your plans for the afternoon sound lovely; fresh air and exercise in a beautiful place. Very good for body and soul, have a lovely weekend.
X

[VJ1]

Good news, it was just a scare, the nuclear bone scan was completely clear, no signs of anything nasty, just a normal back ache. Thanks for your thoughs & positive vibes.

Very impressed that you got to see a cancer pyschologist Tracy and glad to hear it helped. Why don't we all get offered such an appointment!! I'm totally with you on the walking - I live on my own, just me and the dog, so however bad it got over the last year I was still out walking the dog twice a day, even on post chemo days when I could barely put one foot in front of the other, and I swear this is one of the factors that has helped me get through this as well as I have. Sun's shinning with us now so I'm off to a favouriet loch this afternoon, although no sign of blossum up here in snowy scotland - no daffodils out with us yet, but plenty of blue sky and sunshine.

Keep well all,
Vicky x

[tracyld]

Yes indeed it is !. I too had a bone scan, MRI , chest Xrays and ultra sounds and nothing was found. I think I was just paranoid and the health professionals went along with me. I was a perfectly rational, level headed woman, vibrant , happy lady who had become a nervous and emotional wreck ! She referred me to the Cancer Psychologist and this along with anti depressants healed me. The therapy helped me such a lot and I would recommend it to anyone. As she said to me when we are diagnosed with Cancer we know we are facing Life or Death so they are all rational fears. She helped me to practise Mindfulness.
I really hope this is just a scare for you . Keep busy and go for a walk every day as the exercise will keep you focused on nature and all that is happening around you, the bird song, the daffodils bursting into bloom, the may blossom trees starting to blossom and finally today a blue sky and some sunshine in Derbyshire.
We will all be thinking of you and send you lots of love and positive vibes !! Love Tracy xxx

[catseye]

Vicky:
Good luck with your scan..I too had back pain after finishing treatment and similarly, my Onc decided I should have an X ray. Cue instant panic and a miserable wait over Christmas/New Year, but all was fine. Really hope all will be well with you - try to concentrate on happy things to take your mind off the worry while you are waiting, I know however, that this is much easier said than done!

[VJ1]

Yes there do seem some good intentions out there, and everyone seems aware that lack of after care is a problem, but like you say catseye, how long before it actually happens, and with NHS cutting budgets and staff is it really going to happen??

Well I saw my oncologist last week and surprisingly she was quite supportive. I had to request the appointment, and had to drag it out of her that yes, the cancer is gone, and yes I'm done. Like you HJU63 I just needed to be told its over, so I can move on. With my postcode lottery I get signed off by her and don't get to see the oncologist again (I hope), from now on my only follow ups and check ups are an annual check up at the breast clinic. Actually think I'm ok with this as I don't really want to spend any more time in the oncology department. But she did reasure me and say I could phone them anytime and ask for an appointment if there was anything that I was worried about that my GP wasn't taking seriously.

However, just as it was all going so well......she wanted to do a breast exam and in the lying down I happened to mention in passing a sore back that I'd had for 5 weeks and next thing I know she has got me booked in for a nuclear bone scan to check for cancer in my bones. Arrghh. I've only just finished treatment - it can't be back. I'm positive its not and the sore back is a result of lying on the radiotherapy table which has aggrevated an old back injury, but now she's put the idea in my head......

So now I'm wondering how to find a way of living with this. How on earth do you find the balance between being paranoid enough and getting every ache and pain properly checked out in case it is the cancer coming back - after all if it is you want to catch it as early as possible - and not turning into a complete hypochondriach (can't spell) and imaging every headache is a brain tumour. Some how we have to find a way of making our peace with living after cancer, but not quite sure how, maybe it will come with time.....

Vicky x

[catseye]

Hi Spooky Moo, that link made interesting reading. The idea seems generally good, but like you I do wonder how long it will be, if ever, before our hospitals have the resources to implement this.
Like so many other people, I feel abandoned. I finished active treatment in September, and for the first couple of months actually felt pretty good mentally. (Physically worn out though). I think this was euphoria and relief at having finished. Now, I feel increasingly wobbly, partly I guess because everyone assumes I am back to normal, have been "so brave" and I find it difficult to admit to my nearest and dearest I could do with some support. I think this revelation would suprise them....
I get the impression that once the Oncologists have, (hopefully), stopped us from dying, they are not really too interested, or probably have no time, to consider the remaining wreckage!
BCC and Macmillan are great, but need seeking out. Hospitals actually putting a package in our hands would be marvellous.
Out of interest, did anyone get or have the offer of, any specific emotional support through their hospital?

[spookymoo]

'Recovery package' plan for cancer survivors

http://www.bbc.co.uk/news/health-21968714
Hi I have been lurking about on this post. I am no way near finished treatment, but have met other ladies who have finished treatment and they feel abandoned too. I think this is a common problem and at last, with lobbying from Macmillan, the Government has recognised this and hopefully is going to put this recovery package in place. How long it will take to filter down to individual hospitals (if at all) due to the stretched resources of the NHS!) is any one's guess. But at least, and at last, there is a recognition that just because "treatment" has ceased, it should not imply that we are "healed". The physical, emotional and mental scars of a cancer diagnosis do not miraculously disappear. I hope this initiative gets the funding it rightly deserves.

[Chico]

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.

[sdfmeg]

Removed by author.

[HJU63]

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).

[Mishkadog]

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.

[VJ1]

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.

Vicky x

[lottie63]

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

[HJU63]

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

[luluspice]

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! 🙂

[havanachow]

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

[Deb2307]

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

[broomsticklady]

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.

Nina

[VJ1]

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

[HJU63]

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

[Lily200]

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

[broomsticklady]

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!!

Hope this helps
Nina

[VJ1]

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.....

Vicky x

[Madjock]

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

[Emylou9]

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

[VJ1]

PS Yes - I have asked for a meeting with my oncologist or a nurse - still waiting to see when and with who!!

[VJ1]

Hi ladies

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?

Thanks Vx