Since my BC experience began 5 years ago, I have found BCC and my fellow ladies on here to be so helpful, sympathetic and supportive…but is this really enough? I’m 5 years down the road, finished treatments and thought by now that my life would be back to something (I’m realistic to not expect complete normality) like it used to be. But no, cant work because of the legacy of health problems treatments leave, still doing the rounds with various docs to get answers, explanations even if there is no symptomatic relief. But I find that once your active illness period ends no-one in the medical profession actually gives a damn. I was told last night on routine appoint with onc that “its the price you pay for surviving”. If its not cancer, they dont want to listen. I actually think this is quite discriminatory… if a non cancer patient had incapacitating problems would they be told that? Even you guys here at BCC offer the “Moving forward” support for anyone who has been diagnosed in the last 2 years,… cheers, thanks, but there are some of us who are still finding it difficult to move on, and I dont see why the support you offer should have a time limit on it. Everyone is different, many thankfully do have good health after treatment, but some of us dont and it is very difficult to live like this when this is how you get left. I’m only 45 and dont want to give up the effort I’ve put in so far to live the best I can. Am I the only one who thinks this?
Hello 00Jan
I’m sorry to hear that you are finding it difficult to get support now your treatment has finished.
Maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information at ay part of your journey. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
We also have a service called Ask the Nurse whereby you can email our nurses if you have a medical question, here is the link to that service
breastcancercare.org.uk/breast-cancer-services/ask-nurse
Best wishes
June, moderator
Hello June BCC. Have all the other BCC team, web developers, the external agency, and our friend Mike gone on holiday, leaving you to eat all the virtual biscuits we keep sending to the techies to help them work on the forum updates?
No more biscuits till we see some results! 
And now there’s a spammer loose on the forums… see “Begging letter” thread.
Grump grump. Hope this Forum is “moving forward” significantly, soon…
I totally agree with what you say and feel just the same as you, i finished all my treatment in Nov 2011 i know its early days for me but i seem to be getting worse day by day im in constant pain with my legs and back this week my feet have doubled in size, i don’t want to seem to be a moaner yes im glad im in remission and how lucky i am but it doesnt mean i want to spend the rest of my life in pain. x
I couldn’t agree more with you. Since I finished the treatment, (according to the medical treatment 6 years ago, according to me 2 months ago, as I believe 5 years on Tamoxifen and an oophorectomy are also part of the treatment), I feel bullied into a “normal” live. I have had and I am still dealing with a lot of PERMANENT side effects from the treatment such as; PTSD, chronic fatigue, memory loss, unexpecting bleeding from Tamoxifen and so on. Whenever I have contacted the oncological team regarding these aspects, I have been looked down. They just don’t want to deal with the side effects of the treatment. I think that this attitude, it’s creating a whole of a lot of problems for cancer patients where unrealistic demands are placed from employers, friends and family. After a cancer dx nothing is the same. Cancer treatment has permanent side effects, which interfere greatly with work, studies and social life. If there were awareness about this problem, I feel most of us wouldn’t be experiencing problems at work for example. I believe is the responsibility of the oncological team to support cancer patients all the way down the road. Cancer treatment has PERMANENT side effects, which will have a huge impact on the quality of life of the cancer patients, cancer is a disability and it’s very important that is treated as such.
The fatigue, the cognitive problems, the pains and aches have nothing to do with a “positive” attitude towards life, healthy eating or exercising. They are product of the drugs and body changes cause by cancer no a product of a hyperactive hypochondriac imagination. We deserve to be treated with respect and being taking serious by medical professionals, no like a bunch of scared and hysterical mastectomized women.
This is an interesting discussion. I too finished the main treatment (chemo, WLE, rads in that order) in nov 2011 and am finding that I seem to be having all sorts of random pains and infections etc. I do have secondaries to the bone but there doesn’t seem to be any pattern to the aches, pains and abdominal discomfort that come and go. I also feel like an old woman in the morning cos I can hardly move!
I am on zometa and aromasin which could be causing some of this discomfort but it is really hard to pick up life where you left off! Exercise is something I have always done but can’t seem to get back to it coof everyday seems to bring a different set of symptoms! Got a bone scan soon so will see how bones are responding, but I don’t think what I am dealing with is bone pain.
Suzanne
X
hi Ive got secondary breast cancer inmy bones. Ive has a mastecomy,fulllymph node clearence in o8. the secondarys came in 09. 2010 saw me having major surgery on my spine (2ops) then radiothreapy. then they found it in my left hip more surgery and radiothreapy plus overies zapped as well. put on letrozele after tomoxifen. achcing bones and joints. pain from the operations. theyy said my bones were becoming thin and losing calcium so they put me on azemeta bisphonate drip every four weeks plus a calcium tablet. HOwever its back again in the lower spine more radothreapy. estesame tablet in stead of the letrozole. A lot of pain in right leg and hip may have a lesion on ball joint plus odd areas in pelvis. Most days very painful tired cannot walk far. the other week ended up in hospital with kidney failure due to some of the tablets I was on effecting kidneys. hopefully ok now. A pysio has given me exerise to do as she thinks its a pull nerve or muscle! not sure who to belive now. Painrelif is pregalin and oxcodine and paracetamols not sure sometimes weather I coming or going. over weight due to lack of exercise and tablets. still trying to moveon with life.
I must say that having been on a Breast Cancer Care Moving on 2 day course
I relly enjoyed meetiing others there and have made new friends. but just as I was getting on with my life retired from job I loved at 56 and booked hoildays THE CANCER IS BACK! where do we move onto now? shiggles x
ALso I have to say that throughout my secondary cancer journey its me thats bang onto the consultant and doctors something is wrong i know my body. when I told the consultant a year and a half after my breast operation i had pains in my bad and was getiing spasms he wrote and said it was wear and tear ansd to set my mind at rest he would order a bone scan! boy was he wrong! shiggles x