Nobody I can talk to about how the anniversary and yearly screening is making me feel

[Lisa65]

So I came here where I knew people would understand. Apologies - this is long. This month it is 3 years since my first breast cancer diagnosis, and 1 year since my second diagnosis.

I had an MRI on Friday 31st (my consultant suggested this as part of annual screening as I have dense breasts), and on the 8th June I will have a mammogram, ultrasound and then see my consultant.

I was nervous about the MRI as I am very claustrophobic. It was awful and they had to pull me out and calm me down after the first few minutes. I am going to look into hypnotherapy for my claustrophobia as I can’t handle another 4 years of MRIs otherwise. I don’t know the results of the MRI - should find out on the 8th.

A year after my first cancer I was very scared when the anniversary came round and felt really panicky and sick going for the screening, walking into the ultrasound room where I had the first biopsies brought it all flooding back. But as nothing untoward was found I felt amazing leaving the hospital, and really thought I was back to being my old self and could put it behind me.

So as the 2nd anniversary and screening rolled round I didn’t feel that bad about it, I think I just expected it would be like the year before and I’d leave the hospital feeling good again and get on with my summer. But that’s not how it panned out - the ultrasound Doctor found an area he was concerned about in my other breast, backed up by the mammogram, there were three biopsies taken and my consultant said she didn’t like the look of a couple of the abnormalities. Two weeks later the results were back and she confirmed a new primary. I didn’t cope very well with the second diagnosis, but as we have to, I got through the surgery and the radiotherapy and am putting up with the awful letrozole side effects.

And here we are in June again and I am really struggling as the appointments get closer. I’m crying at the drop of a hat, the thought of walking through the hospital doors is making me feel physically sick and I cannot stop catastrophising about the outcome.

I wasn’t feeling too bad about it until we were at the hospital for the MRI but just being there has brought it all back again and now I am terrified. My partner and family and friends are all saying ‘it will be fine, just because it happened last year doesn’t mean it will happen again’ and all of that stuff…and I can’t make anyone understand that it doesn’t help - that I no longer have faith in my body, I’ve had cancer twice now why shouldn’t it be three times?

I’m trying to put a brave face on and not talk about it, I know it’s hard for my partner seeing me in such a state, and my family have their own health concerns - my dad is really unwell and in his late 80s. But not having anyone in real life I can talk to who understands is a very lonely feeling.

Sorry for such a long outpouring - thank you if you read to the end!

Lx

[debi1]

So sorry to hear how you’re feeling lovely. Im new yo all this was diagnosed in march had lumpectomy and cnb early may. It went well but was then told it was triple negative so waiting to hear about chemotherapy anytime now. I was thinking because of the type of cancer i will be in constantly worried it will return so always be having tests and realising this is my life moving forward. I wish i could reassure you but hope it helps knowing theres people to talk to who have similar experiences. Its so hard but you will find the strength to get through this. Us ladies are made of strong stuff. wishing you all the best. Wish i could do more xxxxx

[nannabee]

I don’t think anybody on here would feel any different if they were in your shoes right now. I hadn’t had a mammogram for seven years and I really don’t know why I suddenly decided to have one. They found a tiny 8mm IDC and still now 7 months later I keep asking what if I hadn’t gone. I know I will be nervous on my first check up and each one thereafter because of that “what if”. Our family and friends support us but unless they have actually been through breast cancer they really don’t understand what it is like and how we have no control over our reactions and emotions.

I am wishing you good results and know we understand xxx

[Lisa65]

Thank you both for taking the time to read and reply. Whilst I wouldn’t wish this awful disease on anyone, it is a comfort to know that here at least I’m understood and amongst people I can just be honest with about my fears (and tears!).

Thanks again
Lxx

[JoanneN]

I’ve had two annual follow up mammograms now and I felt really tense and scared in the couple of weeks running up to them . Last year I snapped at the radiographer who was doing it . A few weeks ago I asked my Osteopath ( who has been wonderful to me over the years ) not to talk to me during treatments . I do feel she gets distracted sometimes but the main reason I wanted her to not talk is because it brought back memories of the first procedure I had done which was a trial procedure under local anaesthetic. It was unsuccessful and the Radiographer who was talking to me started to sound a bit manic and to be honest I wanted her to shut up as she was drawing attention to rather than away from the fact that things were obviously not going well. I had put myself into a place where I was totally calm at the time but afterwards it was a different matter . I’m a Nurse and I’ve had an occasional experience when something that has happened with a patient has triggered something in me - it only lasts a moment but it’s there .
Now I have to apologise to my Osteopath .

My Dad like yours was also poorly while I was having treatment and passed away last year - sometimes everything seems to happen at once and it can feel overwhelming . You are not alone with this believe me.

Sending love and best wishes for good results and beyond. xxx

[Lisa65]

Thank you @JoanneN. I’m sure your osteopath will understand!

Before this I didn’t really understand what people meant when they talked about being triggered, but I’m painfully aware of it now. Most of the year I can manage it, but in the run up to the annual screening it gets so much harder.

Thanks for replying.

Lxx

[Watcher72]

That must be so difficult for you. The anxiety in the lead up to scans is so very hard - so to have what is our worst fears happen must have felt very scary and lonely.
For me the first follow up mammogram came not long after treatment had finished (chemo & radio after 2 surgeries). So it almost felt like just another hospital appointment, even though the anxiety before and after was horrible. All those memories and feelings coming back. My second follow up - I went alone, even though my husband offered to come, thinking I would be ok. I came out and cried after and couldn’t drive home for a while as I was really triggered at the memories of being back there. You are not being a ‘drama queen’ … these are all very real and valid feelings. Sometimes you just need to say these words out loud, and have someone listen to you. They don’t need to be able to fix it.
If you find it hard to talk to people in real life, if you don’t want to burden them, or listen to their well meant platitudes about everything being OK, could you call the nurses here? Or the Macmillan helpline. I have found both of them to be really helpful when I spoke to them. Hopefully reaching out here has helped, as we really get it. Sending you big hugs xx

[Lisa65]

Thank you @Watcher72 for responding and your suggestions. Reaching out here has helped and today I’m feeling a bit less panicky and teary - so far anyway!

Lxx

[naughty_boob]

Hi @Lisa65

You are not alone. I’m so sorry to hear how you are feeling and you don’t have anyone to share it with. I totally understand, I have a close family unit and a few friends. My parents have both passed and my aunts are old and have their own health issues. I worry all the time about upsetting others about my fears, side effects and mental wellbeing. I’m sure some people think I should be over it by now, I’m not sure I ever will. Unfortunately there is no Maggie’s or MacMillan centre close by to drop in and talk things through. There isn’t a local support group either. I have been tempted to reach out on Facebook to the local community page to see if there is anyone affected by BC that would like to meet up regularly and chat and support each other. Saying that I’ve met so many lovely people on this forum and enjoy supporting others. I’m starting with some new counselling next week, as I didn’t gel with the last one. I have also signed up for the Moving Forward course, have you attended one? I’m sure you can apply to go again if you have.

• Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.

You can also phone nd speak to the BCN nurses about your worries and how to cope with MRI scans in the future.

• Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.

I have just passed my anniversary of finding a lump and then diagnosis day. I found a single lump and then when it was being sized to decide on chemo first or after surgery they found a second primary in the other breast. Therefore cancer x2 but diagnosed at the same time, two different sizes and grades. I have ER+ and HER2+ so still having treatment until September aswell as Letrozole and Zoledronic acid.

On the anniversary of finding my lump I had some complementary therapy to try to distract myself. It didn’t. Then my diagnosis week I booked a week away in the U.K., not ready for flying yet. It was a nice distraction until 3pm, I was in the car travelling to our next destination and the tears just came. I tried so hard to not let the family hear or see me. I put on my sunglasses and popped on sone music, sniffled as quietly as I could.

I spoke to the breast care nurse about ongoing issues and I said I’m due my annual mammogram early July, one year after surgery, but I hadn’t even been booked in the system. I’m not looking forward to it. I have managed since finishing radiotherapy to get to my appointments on my own but I’ve asked my husband to come with me for the scan. I probably won’t get the results that day and will need him to come with me if there is a follow up appointment for results. To be honest I’m not sure how they tell me. The breast unit has moved from the nearest hospital 20 miles away to a purpose built unit 40 miles away. So it takes most of the day and my husband will probably have to book half day holiday. Even though it’s not the same place I’m sure I’ll have some sort of PTSD (I’m sure all cancer patients have this but most NHS staff don’t acknowledge it).

I hope you reading this you realise you are not alone and a lot of us feel anxiety, worry and fear about recurrence.

We are here for you on the forum whenever you need us.

[Lisa65]

Thank you for responding, and I’m so sorry you’re finding the anniversary tough too - it really does seem to be a ‘thing’ doesn’t it?

Trying to find local women who have been through the same thing is a good idea. It really helps to chat here and everyone is so kind, but sometimes you can’t beat face to face.

I have found a qualified hypnotherapist local to me who I’m going to get in touch with - as well as phobias, her website mentions help for PTSD - maybe she can sort out more than my claustrophobia!

Take care and thank you again

Lxx

[loulou1]

Please don’t for the long message. I think writing about it is therapeutic. I just finished my treatment, and wonder if I will always be afraid. I explain to my husband- it’s like being in an awful car accident-and being afraid to drive. I think it is natural. Please know that people are hoping the best for you-especially I. This forum

[Lisa65]

Thank you @loulou1, that’s a good way of explaining it to your husband.

I do feel a bit better for sharing on here, it’s a lovely supportive group

Lxx

[donutf]

Sending you hugs and hope that you get someone local to talk to.

I think we all worry about recurrence but unfortunately you have had a terrible experience.

Be kind to yourself.

donutF x

[loulou1]

Losing parents is the hardest. Be good to yourself

[aly0120]

Don’t worry about the long message. I agree we are all scared to some extent. My first mammogram was October 2023 and I received my diagnosis on 15th December, surgery in February.

I had radiotherapy session 11 of 15 yesterday and also lost my Dad on 18th May. Im finding it hard to go to the same hospital that I visited Dad in for weeks. I’m fed up of not feeling normal and am now totally devastated at my Dads passing and feel an emotional wreck. I can’t wait for treatment to be over

[JoanneN]

So sorry that you’re having to deal with everything at once . I was diagnosed a few months after my Mum passed away then Dad became unwell whilst I was having radiotherapy then finally passed away the following year. I live in a different area which means travelling to and fro but I’m glad I didn’t have attend the hospital where my family have all been treated . You don’t have to be anything other than an emotional wreck - how would you be anything else right now . Just get through it a day at a time and hang in there you will feel better and find a new normal in time and while grief is always with us you do find ways to live with it.

Sending lots of love xx

[marie911]

I can totally relate to the fear and anxiety. I will have my 1st MRI control in July, exactly one year after surgery and I’m starting to stress. In one hand I’m thinking that at least some treatments work, chemo or radio or letrozole or Verzenio but on the other I can’t help but thinking "what if they see something " I just hope that I will be able to have a normal-ish life between 2 controls and not let these controls drive my life…

[aly0120]

Thank you xx

[Lisa65]

Thank you all for taking the time to respond. My heart goes out to everyone who is dealing with bereavement on top of breast cancer - its really really hard and I think you are all amazing just carrying on putting one foot in front of the other!

Posting here has really helped me to feel that I’m not alone and got me through a very difficult week - thank you.

My outcome on Saturday was a good one - nothing ‘sinister’ on any of the scans - I feel very very lucky and am now doing my best to put all thoughts of cancer to the back of my mind until next year’s screening rolls round!

I hope any of you coming up to your own anniversaries have the same outcome and send my love and best wishes to everyone still going through treatment.

This group is really wonderful, thank you all again.

Lxx

[JoanneN]

That’s great news Lisa xx