This is my first post, sorry it’s a bit of a long one.
I was diagnosed with early stage, grade 3 invasive, ER+, HER2- BC on 5th June last year. It was a complete shock and discovered at my routine mammogram. I had a lumpectomy and SNB on 22nd June but developed an infected seroma a few days later and went through a really tough time recovering. I had daily hospital appointments to pack and dress the seroma and the healing delayed my radiotherapy by several weeks. I had no lymph node involvement, fortunately. I also had an OncoDX type test which came back with the very low score of 5.
I was taking Letrozole for a year but the side effects were getting worse and I was struggling to cope. My consultant told me to take a three week break and then changed it to Exemestane which I started to take last week. During the 3 week break I almost immediately felt tons better. My symptoms improved and my mental health was much better. I’m now starting to struggle again, feeling down and sorry for myself which is not really me. I have to stay on the Exemestane for at least 3 months and I’m too scared to not take anything.
The thing is, I don’t think I’ve come to terms with the diagnosis. I’ve known many people who have been through this and been fine. I just focussed on the treatment and wouldn’t let myself think about how serious this actually was. I have not cried once about the diagnosis and I’m normally an emotional person. In fact, I’ve barely cried at all since the diagnosis even with non-related matters which would normally have me bawling.
I feel that I should have moved on and be back to ‘normal’ now but I’m not. I’m hugely grateful that I was so lucky, it was caught early and hadn’t spread. I also didn’t need a mastectomy or chemo. However, I’m now starting to think about how it could have been so much worse or it could come back and it does scare me. I feel everyone thinks I should be ok now but I’m not. I don’t feel those around me understand what I’m feeling and I don’t want to be the person who moans about her health constantly.
I feel like I need a good cry (but I can’t) or a good scream.
Hi Raspberry-diva
Oh bless you it sounds like you are having a tough time of things and I am truly saddened to read that. Im not a professional in any way, I saw your post and thought I’d say Hi!!
I’m just like you in that I’m a little over a year on (from my recall after a routine mammogram, i had a lumpectomy and radiotherapy), but it seems like you could still be in shock to me. I certainly don’t think you are going mad at all, I think you maybe haven’t had time to process it all.
It’s been a massive a rollercoaster ride, from the first recall letter to where you are now and you can be proud that you’ve done all you can to fight this disease…. Well done you!!
I just wonder if you could speak with your BCN or Dr to talk over everything you have and are going through?
The BCN will probably be able to give you advice or put you in contact with others in the same situation.
The amazing people on this forum are all there for you too so it’s brilliant that you have reached out and I hope you get back whatever you need.
Take care and I wish you all the very best.
Welcome to forums you have come to the right place.
I can very much relate to not really processing what happens following a diagnosis and treatment, my tumour was small, I had a lumpectomy and radiotherapy and it’s very common to tell yourself that because your treatment is not as long or difficult as others that somehow or other you don’t “need” to deal with what has happened to you. I learned on these forums that the emotional and psychological impact has no bearing on treatment or tumour size cancer is cancer I’m afraid
There are no rules on how to feel, or what normal will look like: navigating and finding what your normal is can take time.
The cancer support services are there for you at anytime even now after your treatment has finished. I would recommend maybe looking into a BCN Moving Forward course or contacting MacMillan I’m aware that they can provide free counselling courses. Alternatively if you are lucky enough to live near a Maggie’s they are always very welcoming and can help you
as adoptedmac has suggested do look at the bcn moving forward course if you do decide to try it wanted you to know you can leave it at anytime if you feel it’s not for you everyone understands everyone has their own way of interacting on the course some share, some don’t feel ready, everyone listens, everyone is kind, everyone is supportive and everyone is gentle with each other I help support moving forward courses too so I’m sharing this so you might feel it could get you walking the yellow brick road to the emerald city Shi xx
Thank you for your lovely responses. I did complete the BCN Moving Forward course this time last year. It was helpful but I think I probably need some counselling to deal with how it’s affected me.
There is a Maggie’s not too far away, I must make the effort to go.
do ring the nurses on here and try the someone like me option too do reach out on here too everyone’s ears are here to listen as much or as little as you need too Shi xx
Please do not think you are abnormal for feeling this way
You’ve dealt with such a lot and processing it takes time, sometimes years, sometimes never but it does get easier and consider using your GP, your private medical insurance, your workplace mental health support, Maggies Centre or Macmillan will help just call
Someone like me is also very useful and a very safe place to offload
As for screaming and or crying that will happen probably at the most unexpected moment so when it does just let it happen
Writing your thoughts and feelings down on paper with a pen can help too and no one ever needs to see them
Maybe a free mindfulness or relaxation app could help too?
I use the Smiling Mind app
Acknowledging your struggle is the first step so dial a number and talk please
In a world of mental health awareness you can also reach out to Mind or The Samaritans too who will listen and support you
@raspberry-diva I wanted to jump onto this thread as I can completely relate to your post. I’m still in the throes of treatment, finished radiotherapy last week, but was aware that I too have completely focussed on treatment and getting through this awful situation. I haven’t cried either and although that in itself isn’t essential I take it as an indicator that all is not right with me. I’ve been able to access some face to face counselling through a local charity and together we are talking about my coping mechanisms, about loss of control, acceptance and shock. I can certainly see that I was in shock for such a long time as well as denial about what was really happening to me, despite trotting along for all the appointments and generally being a “Good patient”
Talking to someone is definitely helping me to process the emotional blockage that I’m feeling…… I can go so far down the road and then my mind stops and I can’t answer the next question. I’m hoping that over the next few sessions that will be broken down so that I can acknowledge what I’ve gone through and what it means .
Apologies for the long post, I wanted you to know that your feelings are very valid, not everyone can sob their way through this, but also to encourage you to take up some counselling support to get you past your current point.
All the best !
Thank you for your response. It made me smile because I’m actually a listening volunteer with Samaritans . You’re absolutely right, they will provide emotional support. I had just started my training when I was diagnosed and the branch leaders were amazing. I know I’m emotionally numb because I’ve heard some truly horrific things during calls but have been able to shut them out. Normally, I would be an emotional wreck.
@raspberry-diva thanks for posting this and to everyone for their helpful replies. I am sorry to hear you are feeling this way but thanks for post. We have a lot of similarities. I finished my radiotherapy last December. My ‘mindset’ has been to fix the problem then deal with emotions, so signed up for moving forward course early this year. It was good and was ready to start tackling things but then for various reasons had to focus on family. Now 8 months later, struggling and just feel stuck. I also feel guilty that not coping because in my mind had an easy time as no chemo or mastectomy. Also friends and family have ‘ticked the box’ and think I should have moved on.
Reading the posts has been helpful and made me realise, it is ok to not be ok, even this far on. I haven’t seen or spoken to my GP since my first symptoms appointment and didn’t get much support from my BCN but will reach out to others. Thanks again for having the courage to post, I am sure you have helped loads of people and wish you and everyone else all the best. Sorry for the long post!
As others have so eloquently said, you are allowed to feel as you do. I myself was diagnosed with a rare form of Triple Negative Breast cancer called Apocrine TNBC last October (a year ago this week) after a routine mammogram. No one on here at that time had experience of it or best treatment plans - even my oncology consultant said I was her first patient with Apocrine TNBC in her 20 years as an oncologist! I sought further tests and paid for a second opinion at The Royal Marsden as the plan was to treat me as if I had the more virulent and aggressive TNBC even though my tumour was small and hadn’t spread to lymph nodes. In the event I had a lumpectomy and radiotherapy only so I was lucky.
I considered that was job done when I finished radiotherapy in March this year. I’m now awaiting recall for the annual mammogram in November and I shall be glad when it’s done as I want to have it but am quietly nervous! I have been really positive all the way through and like you not cried and just got on with life - which is important. That doesn’t mean I don’t worry the cancer might return but rather that I prefer to live in the moment. Be assured that even the most positive of us can have moments of fear and doubt and that’s ok. In fact, whatever you feel is ok. My local BCN team have been amazing and I would urge you to ask for support if you need it - they will be pleased to help.
I’m sending you love and hugs as I know it’s tough to say these things to family and friends as you don’t want them to worry more than they do already. Know that you have friends here too - with no judgement.
Definitely you are not going mad, it’s hard to process all that is happening…. I have just finished radiotherapy so I expect to be kick out and marked as finished active treatment after F/U …. But as I understand it my active treatment IS also another 5 years when on Letrezole ( yes I am still waiting to meet the ladies who tolerate it well…)…
And already many of my friends expect me to sort of ….move on…
I am paying for psychotherapy myself as still waiting for the NHS one …I don’t know how I could process my emotions without…Also all support groups are amazing ( so so grateful for Future Dreams charity and Maggie’s ). Still half way through anger mixed with denial, concentrating on getting thru it …Cried but it feels not much or not enough, putting big girl’s pants …. And now sometimes it catches me unexpectedly…So I see all of us here go through very similar turmoil of emotions, experiences, reactions…
And screaming… of course cannot scream in the flat … but what I do, I run a bath and then scream into the water…as I feel like screaming very often actually.
I have no doubts it will be a long emotional /psychological healing. It’s a medical trauma after all.
It’s hard. You are not alone at all in how you are feeling. I am still working out how to heal. Psychotherapy, support groups, acupuncture and dance help me.
Good luck and find your way to best heal and process your emotions, hugs Ania
I feel exactly the same way 9 months on. I have had a few cries though. Similar treatment to you. Oncotype 11. All lymph nodes under right arm removed as 2 were cancerous. I had the dreaded seroma too that got infected. I certainly don’t feel back to normal yet. Have you attended a moving forward course at all?
Have u checked your insurance policy to see if they offer counselling?
I have recently felt the need for 121 counselling to accept what’s happened and to try and move forward. I contacted Zurich who I have critical illness cover & life insurance with who confirmed I will be able to access 6 face to face counselling sessions. They were quick and within 48hours they had provided me with contact details and I had my first session sorted.
Hello to everyone on this thread. Firstly, thank you @raspberry-diva for actually finding the courage to raise this issue and @hope889 for your suggestion to contact the insurance company. To everyone else, all your suggestions are so valid.
We read all the time about how different our cancers are and about how we all react in different ways. So it follows that we all feel differently. ALL OUR FEELINGS ARE VALID!
I read a blog sometime ago by a doctor who dealt with how a person may feel at the end of treatment. Feeling as though we’ve been left “on our own” and not having the security of seeing our healthcare professionals on a weekly or daily basis, is a very real and scary thing. I wish now that I had saved it somewhere in order to re-read it. Maybe someone on here will recall and remind me/us where to find it?
Thanks to those who mentioned the Moving On course. That’s something I will look into.
I will be finishing my treatment plan on Christmas Eve and to be honest, I’m dreading it! Thanks to this post and all your answers, I will keep trying to avail myself of the support that is there for us. I need to keep reminding myself that I’m never alone. I’m going to be 70 in March 2025 and live on my own in Suffolk.
If anyone has Facebook, there is also a group called Breast Friends CIC, for anyone who has had BC. They also have a website and are on Instagram. Although it started in Suffolk, it is now growing countrywide. Women and men are being diagnosed with this awful disease every day. The nice thing about Breast Friends is you can meet people locally for coffee, lunch, wellness walks and chat to support and be supportive.
Wishing everyone all the best, especially @raspberry-diva for helping us talk about our feelings
Morning, I’m so sorry to hear how difficult you are finding things at the moment. I can really relate to everything that you posted. I have been telling myself that as I only had surgery and radiotherapy that I’m lucky and should be grateful. I haven’t really faced my emotions as it felt safer. I’ve just started 1-1 counselling to try and process some of what’s happened as it feels like a trauma. For me I’m hoping this will be key to moving forward. I read a long , but interesting article by a psychologist regarding coping after a cancer diagnosis. I’ll try to share it. I hope you can access some support that works for you. Xx
I was on Letrozole for 8 months, couldn’t deal with the awful mobility issues so moved to Anastrozole 5 months ago. The side effects may be a bit more gentle, & my carpal tunnel syndrome has definitely reduced, but I can still hardly move or walk . I’m doing Pilates 5 times a week in the hope it might help, but if I can’t continue on it, would move to Extemestane so am interested to know how that has been for you.
I am also a Samaritans volunteer - such a wonderful group of people .
as adoptedmac has suggested do look at the bcn moving forward course 
understands 
I take it as an indicator that all is not right with me. I’ve been able to access some face to face counselling through a local charity and together we are talking about my coping mechanisms, about loss of control, acceptance and shock. I can certainly see that I was in shock for such a long time as well as denial about what was really happening to me, despite trotting along for all the appointments and generally being a “Good patient”
. You’re absolutely right, they will provide emotional support. I had just started my training when I was diagnosed and the branch leaders were amazing. I know I’m emotionally numb because I’ve heard some truly horrific things during calls but have been able to shut them out. Normally, I would be an emotional wreck.
Ania
. I’m doing Pilates 5 times a week in the hope it might help, but if I can’t continue on it, would move to Extemestane so am interested to know how that has been for you.
.