When I had cancer the 1st time I was followed up, with a mammogram, every 6 months for the first 2 years, then annually for 3 years, then every 2 years. each time was just a mammogram though which doesn’t always pick up changes.
The whole follow up procedure seems like it needs a shake up doesn’t it. I am expecting it will differ from hospital to hospital too, like everything else. A mammogram won’t always be the answer though will it?
Getting ready for Rads No. 2 today, yesterday it took over and hour to get to the hospital which is usually just a 20 minute drive… the windy weather caused closure of a bridge in Ipswich and everything ground to a halt! Typical.
Kip
x
It’s not just the follow up though. I had a mammogram in Oct 2015 which was clear but got my GP to refer me in march 16 as I felt changes and thickening. At that appointment they only scanned me which showed as clear (so did a scan 12 days before I was diagnosed with an 11cms spread of cancer in the breast and in loads of the lymph nodes). Only a biopsy picked it up properly although it did show on a later mammogram when it was huge, but not the scan. For this reason anyone being referred with cages should I feel be biopsies as a matter if course to pick up those cancers that don’t otherwise show. I was told lobular cancer does show on scans and mammograms and as thsee account for around 5 % I think it is then there must be loads of people not getting diagnosed as early as they could be which means more surgery and treatment that they would otherwise need. I’m convinced had I been diagnosed when I could have been I’d not have needed such radical sugeries and wouldnt now be stuck in lifelong pain and discomfort. At the follow ups all that basically happen was I had a mammogram and I was told that I’d get a call if it wasn’t normal.
And I’ve still not replied to the complaint report. I’m off Mon, Tues and Weds next week so I’ll do it then. I may copy NHS england in my reply.
SallyG - yes its a minefield to get diagnosed at all isn’t it. I could feel a lump, so could the consultant (even though he said he thought it was a cyst) the mammogram wasn’t clear as I am young(ish) so had a scan and a biopsy to clarify what it was… good job they did.
Kip
x
Thanks for all the information CDC, I will definately take a look and see if I can add my support. Sorry to hear you have lost a nail, mine still look dodgy but so far not lost any and none loose, I’m hoping I can just grow them out, but they do look horrible.
I’m still suffering the aches and pains, I’m so stiff when I get up on the mornings and if I have sat for any length of time. I think the Tamoxifen is partly to blame too, that apparently gives you muscle/joint pain. I’m hoping it will go with time, my husband and son both do Yoga so am thinking of giving that a try after treatment is finished, and my arm allows me to. Anything worth a shot to losening these joints.
Kip
x
Thanks Feenix, what a great article. A shame she felt she had let her surgeons down by not having reconstruction though. I get that, my surgeon kept pressing for recon too and I knew I didn’t want it. I am quite happy with the flat one. My aches and pains are more annoying that the flat boob I think. I am still hooping though, and … drum roll… have lost 4lb in the last 3 weeks… just trying to cut out the sweet stuff and eat a bit better, although Christmas goodies are starting to roll in so it may not last! I’m still out walking most days although the hips nearly sieze up when I get back… but I won’t let it stop me.
I haven’t done very much xmas shopping yet… have loads to buy and spending every morning working and afternoon having radiotherapy isn’t helping much! Must focus and shop on line I think.
Kip
x
Oh let me know if the Nicola Jane ones are good… I’m in vests at present to protect the skin during Rads, not that its sore yet but don’t want to take chances… not a good look with one flat side… but actually I don’t care!
Kip
x
Hello
Sorry I’ve been AWOL for a little while, my emotions have been very up and down, with lots of down. I think finishing rads has really hit me. I’ve found myself getting very upset wondering if the cancer is going to come back. I know this isn’t helpful thinking but once those gremlins get in the head it’s very difficult to get rid of them. I have also been feeling very alone as im the only person I know who has gone through this. I have an appointment at the hospital to see what counselling they can offer me next week so I’m hoping that will help. I’m also really interested to hear if the moving forward course has helped you emotionally Jean or if it is more practical help? There is a course here in Feb that I will sign up for and a session with family (my OH is coming) in January. I’m usually or used to be quite an upbeat and happy person and I hate feeling like this. Sorry to pour it all out here.
CDC the conference sounds very exciting and must feel empowering that you are making a difference. Let us know how it goes.
Glad rads are going ok for you Kip and well done on losing 4lbs. I lost 4lbs but have put 2 back on with my recent low mood = chocolate. X
Oh Michelle ni think that’s par for the course… Ive heard a lot of ladies get very emotional and worries at the end of treatment… i think its the removal of the safety net you are in when under gojng treatments And then you have to find a new you and a a new way to feel. Ive been having some down days too with the what ifs! Some days i dont worry some days i do. Not sure how you move on but it seems (from friends j have who have been there) that as time stretches out uou think about it less and less,… unfortunately i think it will always be there. I try to tell myself that nobodh knows if they will get C its just we are in that world already. If you look on the other forums i tthink there is a moving forward bit and it has positive survival stories on there… ive ive them when feeling down.
Take care
kip
Xx
Thanks Kip, I’ve also heard it’s quite common at the end of treatment. I don’t know why I thought I would be different but I did! I think during 9 months of pretty intensive treatment I have just been going from day to day and focusing on finishing each treatment and I think now the ‘big 3’ are done I can reflect on it all more and it just feels so massive.
I’ll have a look for the moving forward forums I could do with some positive survival stories. X
Thanks so much Jean, that is really useful, I will get myself booked on the course in February. I have also been in contact with the someone like me service and have someone calling me next week so that will hopefully help too. X
Thanks everyone you’ve been really kind, although that sets off the tears too!! I know I will get through this as we all will.
Claire I am in awe of you going to the conference and pushing for better scanning, your passion is inspiring
Xx
Well done amazing Clare! A voice for us all! Sounds like it was a great day at the conference and also a good day with the Plastics team. Its great you are getting the options sorted, all choices are completely personal and as we have all learned from this crappy journey… everyone is completely different too and we all respect each other’s choices and opinions. As I’ve said before… if you need some donor tissue… my thighs have an abundance for use (if only I could :smileywink:). I have heard of the BECCA thing but haven’t used it, might have to give that a look, thanks for the reminder.
Michelle - hope you are feeling a little better today. I watched the blogs by Victoria Derbyshire the other day, she made little films following her treatments etc and it was good to see her going through all this and coming out the other side. She is still in the clear and enjoying life and she even says that the demons do raise their heads from time to time but she is focusing on the here and now and enjoying life…
Feenix - thanks for the heads up on the discount on Asda bras…am waiting for my prosthetic boobie after xmas and then will be shopping again. How’s the hooping?
No. 6 Radio today… all going fine, another accident causing hold ups on the way to hospital yesterday so took ages and ages to get there but I did it. Getting very tedious now but every time I walk past the entrance to the chemo unit I just thank my lucky stars I’m not heading in that door again.
Have a good day all
Kip
xx
I’ve got the Becca app too. Forgot I had until reading here reminded me. I went on it yesterday and there were links to a couple of positive survival stories. I don’t use it day to day. I think it has make up advice and mindfulness links. It’s worth downloading. X
Hmmm, thanks will definately look at BECCA.
Kip
x
Hi Claire, I don’t think my hospital offers an open invitation for follow up, that sounds like a great service, however I am going to see someone from the psychology dept on Tuesday so I will find out what they offer then. I also have ‘someone like me’ calling on Monday. I’m really looking forward to that because she was also HER2+ which is what I am currently worrying about. I thought I was feeling better as we went out with friends last night and had a good time and woke up in a good mood. I have booked a holiday this morning to Russia for us next June, I was really excited then I started to think what if it’s come back by then and now I feel really low. It’s difficult to pick yourself up from those dark moods isn’t it?
You must be so pleased your hair is coming back quickly! Like you Jean I’ve just had a crop. I’m not happy with mine its too short to try and get all the re growth to blend in. Having said that I have had lots of compliments. I plan to keep my hair short but not this short!
Jean id never heard of pollarding and have heard of it twice this week! We love watching escape to the chateaux with Dick Strawbridge and they have had their trees pollarded! Hope you got yours done ok.
Kip I hope you are enjoying the weekend break from rads. It all seems to be going ok for you apart from the journey, you are almost halfway now.
I hope you all enjoy the weekend xx
Hi Michelle, wow what you’ve written could be me! I am feeling the same. We got a xmas tree yesterday and had a lovely time decorating with the children but all the time at the back of my head is “what if im not here to see this next year” .im too scared to look too far forward to and want to book a holiday but feel scared to tempt fate! Ive been feeling really positive lately but today could cry. My daughter told me the only thing she wants for xmas is me not to have cancer and be her old mum again!! Breaks my heart and i try to brave it out for her but inside 
. Must try positive thinking again… Hope you are ok today?
Cdc when your consultant said the 1st year is the hardest he wasn’t wrong!!
Kipxxxx
Hi Kip, at least we know that our thoughts are a normal part of this horrible place that we find ourselves. I am hoping to learn some coping methods but deep down I think the only thing that will make us feel better is time. I suppose by trying to keep positive and arranging lots of things to look forward to will hopefully make time pass ‘ore quickly. That’s my plan anyway!
Had an on ok day today, had a chat with OH and told him how I was feeling, a problem shared… I did feel better having had the chat but I also feel bad loading my worries on to him.
How are you getting on with Tamoxifen? I haven’t really noticed any difference apart from slightly more regular flushes. Hope you have had a good day too x
I agree Michelle, time will be the key. I have 3 friends who have been through this and they all said as time goes on it gets easier.
Ive found the tamoxifen ok, just hot flushes, although i have achey jojntj and muscles which could be the tamoxifen or chemo SEs… Otherwise so far its fine.
Kip xx