Hi ladies, it's very natural to be scared, but there are loads of stories on here from ladies who have passed the finishing line. It's the fear of the unknown that is so bad. Honestly, once you have your pathway you will be more in control and can get on fighting. I never thought I would be saying this, but it really is all doable. Love to all. X
Just wanted to add my tupence worth. When I was telling my friends yesterday about my newly diagnosed BC I was amazed at how many if them knew of other friends of friends who had all come through this awful awful disease.
Like you every ache or pain I feel I'm convinced it's spread. I too really enjoy my food but just can't face much at the moment. I managed to have some nice fruit and yoghurt after I'd gotten back from the gym earlier. It was hard but I really did feel better after eating it.
Well done you, I know that was a very big step for you to take today xxx Oh that is great to hear and so positive response from your breast care nurse, she sounds a good one.
I too am posting my positive story. ER+ is hormone receptor positive which means that you will at some point be on a hormone blocking therapy (estrogen which is what the cancer was "feeding" of), mine was ER+ and I take Tamoxifen on a daily basis for the next 5 years. I was extremely lucky as mine was found as a result of a routine mammogram, I am 59 and have three since I was 50 and this was the first time I was recalled. I had grade 1, tubular cancer that was hormone receptor positive. That was in September last year, op was in October and I then had 20 sessions of radiotherapy which completed in January 2017. I am now back doing everything I used to do before and really appreciating life.
It is almost 12 months since I was diagnosed and on that day I could not imagine being here 12 months later despite them telling me that it was very treatable and caught early. My boss who was with me throughout it has suggested a meal out to celebrate and mark the occasion, grabbing that one with both hands.
Sending you lots of smiley faces
Hi Nik Nic,
Excellent advice so far from the folks here. It's pretty much universal I think that we all imagine we have the dreaded spread but the truth is only a very tiny percentage of people are found to have that at initial diagnosis.
I too am one of the very many good news stories. 18 months out of treatment (MX with reconstruction and chemo) and I feel physically better than I did before I was diagnosed.
Unfortunately an awful lot of women get this disease but there is an advantage to that: Because there are so many of us there has been and continues to be extensive research and new treatments are coming through all the time. The outcome for the vast majority of people is really positive. I agree with the others who say stick with the NHS. I remember reading someone here when I was going through my treatment say that she thought there were fewer support resources in the private sector, BCNs for example, and she felt her's was a very lonely journey.
When the time comes, join one of the chemo monthly groups where you will get great support. Believe it or not we do all have a bit of a laugh here on this site as well. In a few months time I'm sure you will be here supporting other women and giving them the benefit of your experience.
And eat lots of nutritious soup.
ER+ means my cancer was hormone driven, so I was given tamoxifen to stop the action of the hormones (post menopausal women get a different drug, often letrozole). You have said yours isn't hormone driven, so that would be ER- (the E is for estrogen, being the American spelling of oestrogen). You may also see references to PR - relating to progesterone.
Well, you asked for positive stories:
I was 44 when diagnosed, grade 3, 2.7cm lump, in three of my lymph nodes. My kids were 12, 14 and 17. I had surgery, chemo, rads, herceptin and tamoxifen (as I was ER+ve).
Today I am 54, fit and well. I've seen all three children reach adulthood, I've been to two graduations (youngest still at uni), and now have a wedding to look forward to. Life is good. In ten years time you'll be in my position.
I see you lost your mum to cancer a few months ago. That sucks as I know only too well. My mum died of cancer three weeks before I was diagnosed. It was a surreal time, and just when you need your mum most she's not there. Sending you big hugs xx
Hi Nikki, sorry to hear of your diagnosis and glad you found our lovely forum where you can be supported by people who are in the same club which no one wanted to join. Your anxiety and irrational thoughts are completely normal straight after diagnosis but will settle once your treatment plan is in place. I had chest pains and heart racing due to anxiety and was convinced the cancer was spreading. These thoughts and reactions are all normal. With regard to the nhs I'd personally stick with it if I were you. I didn't feel things were moving fast enough at times but the nhs do have strict targets for the number of days from diagnosis to treatment. Once you enter the private system it can be hard to go back. There was a women on here a couple of months ago having difficulty with private health care keeping her waiting much longer than the nhs. Just make sure you stay in touch with your breast unit nurse and she will keep you posted on what's happening. If you feel you need support in navigating your way through the system you can contact McMillan who will support you if need be and there is also a PAL service within hospitals which you may want to look up. I'm 48 with stage 2 advanced BC including local nodes and on my 5th out if 8 chemos before surgery. I had a scan yesterday which confirmed my chemo is working at shrinking the lump and the nodes. Whew! I have found this forum really helpful. Once your treatment plan is in place you can join the relevant treatment threads on here to network with others going through the same treatments at the same time and get support for side effects and generally not feel so isolated. I wish you well as you start your journey. Xx
Oh my dear I wish I could give you a proper hug but a virtual one will have to do I am afraid. Perhaps the writing down is something for later on when you are ready to.
It really is stress that is causing you to feel like this, honestly it will get easier., unfortunately the anxiety monster takes over our rational thinking at times like this. Perhaps try some soup or the like that might be easier to swallow, I know it sounds mumsy but you really need to keep your strength up xxx
Whenever I get too stressed I lose my voice which apparently is as a result of my brain sending an incorrect signal to my larynx to close slightly. I do breathing exercises which helps it to settle down.
Have you thought about speaking with your GP and see if there is anything they can give you in the short term to help you?
Hi Nikki, sorry you have had to join us but a very warm welcome to you 😊 The shock of a diagnosis is horrendous and your feelings right now are completely normal! Every twinge and ache will send your mind in to over drive when in reality they are highly likely to be nothing to worry about .
The anxiety monster is just that a complete monster who can make you feel like you are drawing your last breath at times!!
Things do get easier, once you know exactly what is going to happen the anxiety starts to settle and you can think more rationally , at the minute it's all guess work and your poor brain is struggling to process it!!
In my experience I was treated quicker on the NHS than I would have been using my private health insurance, they really do excel in this area and I couldn't have been better looked after , waiting is the hardest part but it's also necessary to get the full picture , dig deep and things will soon start to get easier Xx Jo
I dont know for sure about going privately and how it would affect your NHS journey so far, but what I would say is the NHS breast cancer care is second to none, the quality of treatment is amazing. I have absolutely nothing but praise for the treatment, care and attention I have received since my diagnosis in September last year.
Forget about the appointment with the oncologist for now it is in the future. Perhaps next week, when you are feeling up to it, you could call your breast care nurse and ask her about it, she will be able to let you know.
Also I found that a way of dealing with my diagnosis in the early days, was to write down all the stuff that was in my head, no matter how small, questions, thoughts whatever. The good thing about this is it is out of your head so its not running round in there but also it means that you will not forget something that you want to ask/get answers to.
Hello and welcome to this lovely forum full of wonderful ladies who will help and support you through this I promise xx
This is the worst time having had your initial diagnosis but still waiting for further investigations, but this is all so that they know exactly what they are dealing with and can tailor your treatment plan to you as they are all individual.
The way your are feeling at the moment, sicky with aches and pains, is usual borne out of fear and anxiety but once you know what is happening this will help, we have all been at that point so totally get you my dear You are having to take in a lot of scary information at the moment, I would suggest try to do some relaxing exercises when you feel overwhelmed and breaking everything done into small managable milestones not thinking too far ahead, so for example the next one is to deal with your CT scan itself and not think further than that at the moment. Try to go out with the kids and do nice things together that will take your mind off it.
There are lots of ladies on here who have had the same grade 3 diagnosis as you, have gone through the chemo and then had the lump removed so you are not alone and they will be able to support you and I am sure they will be along soon.
There is a wonderful helpline on here with lovely ladies who you will be able to talk when you need to, the number is 0808 800 6000.
Sending you a lovely hug and just remember we are all here for you whenever you need us. We have a pair of "virtual" tough pants which are winging their way to you and we will all be beside you.