First of all, so grateful to have a place like this to share experiences - I find that most of my family and friends (and even some doctors) view my extreme anxiety as unnecessarily inflated and they can’t relate…
I’m coming up on 5 years since my initial diagnosis. Hormone+, Her2- Stage 1B multi-focal Grade 2 - no node involvement. Had a mastectomy and have been juggling between 10 mg and 20 mg of Tamoxifen since then. Oncotype came back very low (3) yet my Breast Cancer Index reported intermediate risk for distant recurrence and that hormone therapy would be of no benefit after 5 years. I am terrified to go off of Tamoxifen, regardless of what the BCI says. This hodge-podge of details doesn’t help me sleep at night - I know that on one hand I should feel lucky it wasn’t worse but on the other hand, I read continually in new articles that hormone positive cancers run a bigger risk of return after 5 years. And these online risk calculators all give me different prognoses. It seems to me that it’s just a matter of time and I don’t know how to cope with all this in my head. Where does a person sit mentally and emotionally when there’s so much uncertainty?
I’m sorry for the gloominess of this post. It’s just difficult to know how to cope. Cancer literally killed off any sense of security I had about life and it’s worse as I approach my 5 year mark because all I hear is that it’s a myth that 5 years is an important milestone. Therapy hasn’t helped (been in it forever) b/c there’s little a therapist can tell you to take away the fear and possibility of dying early.
Thanks for letting me unload. Wishing the best for everyone on this forum.
How old are you now? What is dying early? There are some people who are going to die earlier than the most common age of 87 for women in 2022 (and some will die later).
All sorts of diseases may kill us - the most common causes of women’s deaths recently are heart disease and Alzheimer’s disease.
A lot of elderly women are diagnosed with breast cancer but it usually is something they die with rather than of.
I have had a new diagnosis of breast cancer after 19 years. By the time I had it again I had stopped worrying about it. Worrying for 29 years would have made no difference as breast cancer is a disease where a breast cell somehow loses the process by which cells normally die after a certain time. The single cell continues to divide over and over and then by a process not really understood moves to other organs/areas of the body. None of this is obvious at first so the treatments aim to attack the cancer on a chemical / biological level. Oestrogen tends to stimulate the growth of abnormal breast cells which are oestrogen positive when tested. Other cancer cells are more easily killed by the kinds of chemicals injected during chemotherapy treatment. None of this can be reliable controlled in every instance.
I have decided that as there are no guarantees I can either live in fear or think yes I could die of it but I feel ok now and I might as well live the best life I can now. If I start feeling ill I shall move into a hospice or go in a trip to Switzerland. But I am not wasting my life now. I must fly
Hi. I am so sorry you’re struggling. I know you know that no one is in control of the future. The trouble is we now sense the reality of this whereas someone who hasn’t been through something like breast cancer might somehow be able to believe everything will be fine. I personally have lost that belief since my diagnosis (even though it was never fact in the first place!)
Sorry, I’m whittering…it made sense in my head!
What I actually wanted to reply was that my mum has had breast cancer twice (both hormone positive) and she is still alive and well 25 years after her first diagnosis. Hope….there is definitely hope.
I hope you manage to sleep well and to feel we are all in this together. Sending you very best wishes and keep posting your worries. There will be others who hear you and hopefully can support you x
Hi @sl43 your anxiety is completely understandable as most of us are somewhere on that spectrum of fear of recurrence. All of these statistics that get thrown at us can either be a confusion or something to find hope in depending on your point of view. Nevertheless let me chuck another one at you - 70% of women who have had early stage breast cancer do not go on to have a recurrence. Is there any way you can persuade yourself that you are one of the seven in ten who do not? The odds are in your favour.
Deep down though, this is not about facts and statistics, is it? It’s about control and certainty. Well, there is no certainty of outcome for any of us, so all you have left is control. What can you control? Your responses, in effect. As Seagulls seems to have done. As I am doing every single day, until it becomes a habit to think positively (I have natural resting pessimism ). Some of us need help to do this and you have mentioned therapy, but have you tried CBT, mindfulness etc? Are you on medication for anxiety? Many on here are. At the very least, keep posting on here as we understand in a way that family and friends can’t. Try calling the Breast Cancer Now nurses on 0808 800 6000, I guarantee you that you will feel better if you do.
Early on in my cancer journey, I was riveted with fear about mets, which I’d never known about before diagnosis, and so discussed it with the oncologist. She said told me that, whilst there are no guarantees, it was a highly unlikely outcome given the histology of my tumour (statistics), then she leaned forward and said kindly “living in fear is not living at all” (response). I hope that you find a way to base your continued recovery on that simple truth.
@KayLou2 , thank you for your support. I totally understand what you meant (not whittering - made total sense to me and you hit the nail on the head regarding dueling realities between us and those who aren’t in our shoes). I’m so glad to hear that your mother is a survivor - undoubtedly you also inherited her ability to conquer obstacles… Thank you for offering a story of resilience and victory
I’m sorry to hear that that are feeling so anxious about recurrence
I am not sure I can add much more to what @Tigress@Seagulls and @KayLou2 have said as they have all very much summed up how I feel and live my life following my diagnosis and treatment
I haven’t it but I did read a headline from the book by Deborah James (aka the Bowel Babe) “how cancer cured my anxiety” and I totally get what she meant by that: for the past year or so I actually feel in some ways lucky to have experienced such a reality which makes me think “why was I so worried about that”
There are lots of resources available to help you manage your anxiety, personally I’m a huge fan of CBT
At the time of diagnosis I was lucky to have known 2 ladies who had both been diagnosed in their 50’s which was in the 1970’s and had had mastectomies one was my sister in law’s grandmother who lived to her late 80’s and my husband’s grandmother who lived to 96.
@ Tigress, thank you! Yes, you and @Seagulls are correct - I am struggling with having no control over outcome. Living in uncertainty is the terrible thing when I have lived most of my life thinking I can have anything I want if I work hard enough at it; this sudden struggle that was thrown at me shifted everything into a new realm. Not being able to say “If I put my head and work into it, I can get what I want!” is a depressing reality that I haven’t been able to navigate.
I am on meds for depression and anxiety and CBT hasn’t worked because my fear overrides all else. But being here and hearing stories and statistics of hope is helping. Can’t thank you enough for that.
@adoptedmanc thank you for your added support. I too, understand the title of that book b/c I suddenly have a renewed appreciation for all the little things and couldn’t give a fig less about the other trivial things I worried about. (I have found the book on Amazon - will have to give it a read.). The outcomes of your 2 ladies is a strong straw to grasp… Thank you for providing a hopeful story
It is a fact that literally no-one has full control over their lives. If we could, we’d all be living in Maslow’s state of self-actualisation! The only thing that you can do in your situation is to do everything you can to get the result that you want but have the wisdom to know that it may not be enough. You’ve completed the recommended course of treatment (big tick because many don’t) so now eat healthily, do aerobic and strength exercises 5 times per week and don’t drink alcohol excessively. They, apparently, reduce the risk of recurrence by 50%. That’s all in your control. Have you done the BC Now course “Moving Forward”? It might be a start. Do you have a Maggie’s Centre near you? Having either 121 or group therapy with others who are on a cancer journey may help.
You’re passing by women in the streets every day who have recovered and moved on from breast cancer, you just don’t know it. You’ll more than likely be one of them in the future and as time passes, the threat of recurrence will recede.
I’m definitely no expert on anything other than my own experience, but I understand what you’re saying about CBT. What I am finding helpful is 5 minutes of meditation a day. Sometimes it goes really badly (eg my mind is all over the place), but I just tell myself it will all build up and little by little it will make a difference. That way I stop focussing on my anxiety and I stop trying to fight it and just do little things that I’m hoping are building up my resilience to my anxiety.
I personally feel that having anxiety is natural in these circumstances so I try to be kind to myself when I feel it and not beat myself up or focus on it too much. Kind of ‘Oh yeah, that’s anxiety, that’s ok and understandable. You’re going to be ok. Let’s get on with my day and anxiety, you can come too if you like, but I’m going to make breakfast now’….or whatever. Yep, an insight into my mind!!
Also writing it all down. Just letting it all flow out onto paper helps me as it almost takes it out of my mind.
If you have any useful hints and tips, please share as I’m up for giving anything a try
Much love x
I have not! I’ll look it up right away - it sounds promising!
I hear you about group therapy - I’m in the States and looking up resources for this… (Unfortunately a lot of sessions are limited and not in-person due to Covid…)
I feel you and I are on the same wavelength with our level of anxiety. I agree that meditation helps! (I try to do it together with my yoga sessions). And I do journal quite often, though this can be self defeating because I can be stuck for hours ruminating on paper.
I wish I had something to offer in terms of advice for other reading this, but unfortunately I am the clinical case for what NOT to do. My friends and family basically have started to back away from me because my anxiety is draining them. (Can’t say I necessarily blame them). I’d advocate for reaching out to forums like this, if nothing else. I think being around others who have experienced the same trauma helps you at least feel understood and not like you have your head on upside down.
I don’t know if this will help as everyone is so different and cancer is unpredictable anyway. Firstly, my diagnosis was at age 69 3 years ago (stage 2 grade 2 ILBC, +± with nodal involvement), and I intend to take anastrozole for as long as I can. But my beautiful daughter was diagnosed 13 years ago aged 37 with Stage 3 Grade 3 triple positive so that was very scary. She had chemo to shrink 3 large ductal tumours, then surgery and radio, and Herceptin for a year and tamox for 9 years. She is very anxious before her annual mammo results but each year that goes by helps. Because my lobular BC is not easily picked up on annual mammo I was more anxious than I realised until my lovely breast doc (not onco) arranged a full bone scan and body scan. Getting the letter to say no sign of cancer anywhere in my body was like having a huge burden lifted that I hadn’t realised I was carrying. Anxiety is normal irrespective of the diagnosis and prognosis, time helps, and extra scans can break the cycle of anxiety. Do persevere with CBT and good luck
Good luck to you as well @The_Wink - your words DO help. You’re very lucky to have an attentive doctor like that to ease your worries in your situation - I hope the scans continue to help. Thank you so much - sending good energy to you and your daughter )))
As I mentioned above I think there has been lots of really good helpful advice on this thread for ways to help manage anxiety
I think it might help to remember that (as with most things in life) there isn’t just the one thing that will help you and it is very much a combination approach and it takes time.
Personally it’s taken me a long time and a number of different strategies to get to a place where I can recognise when it is my thought process which is bothering me and not the fear itself
I took up going to a weekly yoga class last year and over this period I’ve found the repeated practice of going to the class (and being told by someone else what to do!) has really helped add to my other strategies of CBT and journaling to keep it under control and to manage it when it does bother me.
Perseverance and patience are definitely two things my diagnosis and treatment have taught me!
Anxiety is a very understandable reaction to the turmoil your body and mind have been through. The way I deal with it, mine was triple negative, is, it is always a possibility that it could come back and I will cross that bridge if I have to. Until then, I will live the best life I can. My friend also has just been discharged after 5 years and is living the best life she can. The worry never completely leaves you. I hope you can find a way, mindfulness perhaps, to help you with your anxiety. We are all here to help always.
I have been puzzling how to help you in your obvious distress. I could tell you about my mum who got breast cancer at 80, then lived to be 101! Or I could repeat my own story of diagnosis in the middle of lockdown and having to fight every inch to get any treatment. Minus the savings I had to use to save my life,I am now fit and well and intent on enjoying every minute of my seventy-something life. Treatment finished a year ago andI can honestly say that I rarely give cancer a thought.
But I don’t know what is holding you back from doing likewise. You have come through diagnosis and treatment for a relatively early stage cancer. You have had five years and stand an overwhelmingly good chance of a very long life. Yet you prefer to spend your days agonising over what might happen rather than living, Your cancer may or may not return but what is a definite is that you are ruining your quality of life. And yes, I’m afraid that even the most supportive of partners, the most loving family and most concerned friends will get fed up if you carry on like this. You are honest enough to admit that this is already happening so please put your big girl shoes on, enjoy a frosty sunlight morning walk and then phone a friend and suggest lunch.
Uncertainty is part of life as is cancer for far too many of us. It is how we deal with adversity that defines us. You will most probably stay cancer free for the rest of your life or you might get knocked down by a bicycle. Follow your treatment plan, do the proper checks and then LIVE
YES! I have been practicing yoga for a while now but never fully appreciated its benefits until recently, in terms of mindfulness and meditation. It seems to help me focus on the present.
I am so grateful to the ladies who have responded to this thread with all their support and advice. I’m taking note of everything and trying to cobble together some game plan amalgam - hopeful to get to a better place sooner than later.
@teddy271 thank you for this. I think this is the equivalent of taking me by the shoulders and trying to shake the sense into me. I’ll try to get those big girls shoes on and be braver - I know that there are millions of others who have endured worse and managed better, I can at the very least give it the good college try. THANK YOU.
). Some of us need help to do this and you have mentioned therapy, but have you tried CBT, mindfulness etc? Are you on medication for anxiety? Many on here are. At the very least, keep posting on here as we understand in a way that family and friends can’t. Try calling the Breast Cancer Now nurses on 0808 800 6000, I guarantee you that you will feel better if you do.
