I'm having a wobble

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I’ve had two ops, started chemo EC-T
Right breast pT2 (34mm) + DCIS making total of 43mm, pN2 (5/14) with extracapsular spread, MO invasive ductal carcinoma grade 3, stage 3a, ER 7 PR 8 HER2 low.

After chemo 15 sessions of RT boost to tumour bed, supraclavicilar fossa and internal mammory nodes. Endocrine therepy 8 years and adjuvant Abemaciclib.

So much from what started as early detection. I had a physio appointment and technician said wow thats a lot of treatment they must think its very aggressive and trying everything.

It has sent me in a spin… am I unlikely to survive this… i’m going into a black hole… until he said that I was still feeling I had a chance as PET scan can see nothing and currently localised… were they just being nice telling me that…I’m sorry just dont know who else to reach out to…

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Hey,

I’m so sorry to read that youve found yourself in the dreaded ‘spiral’. It is truly awful when you get to this stage. I think everyone has been in your position atleast once during their journey.

It is really unlikely that any of your team would have told you any misinformation just to be kind to you, they have to give you all the facts, even if they arent pleasant facts.

The best advice I can give you, is to reach out to your breast care nurse with your concerns and ask them for advice. They are there to help on days like this and will be able to give you some reassurance.

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What a stupid thing for a physio technician to say!
Hardly an expert in Oncology.
I’m fuming for you.

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Hallo @toffee, how horrid for you.

I think that sadly, all of us have encountered people saying really unhelpful, and often extremely ignorant things. You would have hoped that a Physio technician would know better than to say something like that…

Your team know your medical situation, and sounds like they have a robust plan to treat you and get you through this miserable health blip. The technician doesn’t and was maybe just trying to show some sympathy but failed miserably.

If you can, try to shake it off and do something really nice to treat yourself. You’ve got this xx

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@toffee I get it … it’s so easy to go into a spiral at times. What an idiot for saying that to you !!!

I had a complete dark day when I read that Shannon/90210 had died … totally convinced myself that it would be me in a few years!!!

The only thing to remember is 1) you’re in the eye of the storm at the moment so it’s hard to be rational. Going forward when 2024 is in the past, you’ll be able to ‘see’ better and hopefully take such comments for what they are.

And 2) … with time (& maybe the Moving Forward course/help) you’ll be able to tap into your rational brain quickly rather than spiral. I’m hoping I’ll be able to accept the bad thoughts and days but I can deal with them and move on.

Big hugs… this is tough but you will feel better in the future xx

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@toffee - I so feel for you! We’ve all been there and it’s a very tough and lonely place. I’ve begun to dread the meetings with my breast surgeon. I always come away feeling so despondent as he never seems to give me any good news. He says that he likes to ‘tell it as it is’ but sometimes I think people need to realise the impact of their words! Last time he told me that my cancer was a ‘nasty little bugger’ before going onto say that my treatment options were limited due to it being triple negative. I was in a terrible state for days but have spent time focussing on the things I can control like nutrition, exercise etc and trying to build up my mental resilience. I really hope you are able to find a positive way forward xx

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Just wanted to reply to you. Im also triple negative and find myself going down an awful road of negativity. Its really unhelpful that everything is so gloomy around it.

I am so sorry that your surgeon isnt being positive for you. Please be reassured that I met with my oncologist yesterday and told her how my mental health is being massively impacted and she reassured me that treatment for TNBC is ALWAYS changing and improving so most of the stuff that is online is really outdated and told me off for googling things :joy:. I know its easier said than done, but try to stay positive and do things that distract you when you feel yourself going down that dark road.

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Thank you so much @glitteryrainbow, I really appreciate it. My emotions are up and down - usually very down in the middle of the night but on good days I’m able to see the positives and I’m hopeful that there will be some ongoing treatment. Unfortunately my diagnosis is further complicated by being PR positive (4.75) so, it’s not fully triple negative but it’s not driven by hormones, as ER is the main hormonal driver, so they treat it as such. This quirk meant I wasn’t eligible for immunotherapy which was a blow. They have agreed to look at all options going forward though, so I’m cautiously hopeful x

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Thank you, just a wooble in the road.

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Thank you

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Yes poor Shannon, that affected me too x

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Ignore the physio toffee! I have experienced quite a few physios due to various injuries and my good private physio (who also works for NHS) said to me going to physio is like going to the hairdressers, some are good and some are not so good. He speaks from inside experience.

I also found myself going down a hole on Sunday following Shannon/90210 news. I started googling her BC seeing whether it will it be me in a few years. Still feel tired now. I think I’ll need to accept that there will be triggers for the rest of my life where all the emotions will come back and learn to ride it. Easier said than done, started reading the ‘Power of Now’ to see if that helps my mental resilience.

Have a chat to your medical team, they have the latest medical info and probably have experiences 1000’s of patients xx

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Thank you I have left message x

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Hi Toffee, I’m on the same treatment as yourself and also Her2 low. Women on here post about developing metastatic disease when their breast cancer has been thought to be low risk of recurrence and others thought to be high risk are cancer free 12 years later. We are having all the treatment that research has shown reduces our risk. Nothing in life is guaranteed. The physio passed a comment without understanding breast cancer. She has no or little education about breast cancer. Listen to your oncologist he is the one who has the education and experience.
Abemaciclib is a relatively new drug and the long term data is not yet available. It is an expensive drug and although the side effects are not pleasant I feel lucky to have been offered it. What we do know is at 5 years those high risk women who took this drug for 2 years are showing a 7% reduced risk of developing recurrence and the experts are hopeful that this percentage reduction in recurrence will increase over time. I wish you well with your treatment plan.

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Thank you and good luck for you going forward. D

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There is a new v3 nhs breast cancer predict tool. If you put all your data in, it is based of a newer group of patients. The survival stats are really encouraging. Make sure you put in v3 and click on that one. It includes radiation as a treatment and the progesterone receptor. My ‘chances’ at 15 years increased by over 15% compared to the older model. It is worth a look as I think it will put your mind at ease.

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Liz O’ Riordan posted about this yesterday, I think was in her insta stories. The V3 has NOT been validated by oncologists. I wish it had but they say not to rely on it.

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Hi toffee,

Thank for posting.

Its understandable that you are ‘having a wobble’ about the risk of your cancer returning.

Many people find comments by others made about their treatment plan can generate worries or concerns. As @glitteryrainbow, @ivy-cat and @donna­­­­_51 say most people find they have a wobble at some point during or after treatment. Sad news about others, such as Shannon Doherty, can be challenging to hear when facing your own diagnosis and treatment.

The aim of treatment for all primary breast cancers, including stage 3 cancers, is to remove the cancer and to reduce the risk of cancer returning in the future. As @fran says, your treatment team have recommended an evidence-based treatment plan based on national guidelines, underpinned by research evidence. This includes abemaciclib, as @shade says abemaciclib is a relatively new to be used in the primary breast cancer setting but the early trial data is encouraging that it shows a reduction in recurrence rates.

As @coastal1 says, you may find it helpful to speak to your treatment team again as they are best placed to talk to you about your own diagnosis and treatment outcomes if you remain concerned.

As @helen39 says there is a new NHS Predict v3 tool available. NHS Predict is used to estimate what benefit might be expected from treatments such as chemotherapy or hormone therapy. The programme uses individualised information about a person and their breast cancer alongside data from large research studies. The new version has been updated to use more recent data and although recently launched, after careful consideration the UK Breast Cancer Group are not currently endorsing the use of Version 3, meaning that some units have decided not to use it yet.

Many people are surprised at how emotional they feel when their treatment finishes. Adapting to life after treatment can be difficult and often the need for information and support continues.

You may be interested in our resources that are particularly for those who have come to the end of their main hospital treatment. These are known as our Moving forward services and include our Moving Forward book and Moving Forward courses.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).

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Best wishes

Mandy

Breast Care Nurse

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