Hey hey so turns out unfortunately I won’t get treatment today BUT as they deemed my side effects to be quite extreme, they are going to adjust treatment plan and I’ll likely end up with a weekly lower dose.
Also found out that they found an odd heart rhythm when I was in A&E after treatment which at first may have been a normal abnormality for me, but after some Dr House style sleuthing they found out it isn’t (found some old ECGswhcuh were normal and did a new one which was normal again) so they are a bit worried that the antibody treatments for HER2+ are putting short term strain on my heart, which is a really rare side effect. So more tests to check this out and if my heart will be permanently damaged by the treatment if I’d I get it more often, they will have to go back to the books and find something else. Really making everyone use their degree in full I think🤣
@lmack95 very sound advice to @anb1 , there are other ladies on here who’ve had heart and herceptin issues who may be able to help. We’re all different and at least they are paying attention to what’s going on for you but remember whatever your treatment plan it will be the best one for you. All the best ladies, I know there’s quite a few of you in that wait and worry phase. It’s not for ever.
Hello @anb1 Good to hear from you but sorry that you are having such a worrying time. Now, the first thing I am going to say to you (and I only learned this because I did it myself) is that your mind is doing what we all do when we’re scared, which is to go to worst case scenario. You are feeling anxiety but it is not actually evidence based. Your symptoms have been going on for many years, way before breast cancer which means this is not new. Your biopsy last year showed normal lining, your CT scan showed nothing. If there had been anything cancerous it would have shown up. The fact they couldn’t get the hysteroscope in actually lines up with what you were told last year. Waiting is torture and it takes our minds to the darkest of places. Never apologise for letting it all out on here. It’s what it is for. You’ve been through so much and I’m sure we would all tell you that we would worry too. But it’s all these experiences that have left you on edge and fearing the worst so that now you are triggered. It’s so common. @lmack95 is right; distraction is the best thing you can do until the biopsy results come back. We are here in the meantime.
And @lmack95 I’m so sorry that you’ve had a treatment delay. Lots of women on here have had to have with adjustments. The HER2+ treatment can affect cardio function. I got a reduced left ventricle ejection fraction (LVEF) about halfway through and had to go on a drug called Candesartan to protect it until I finished Phesgo, at which point my heart recovered and has returned to normal. I’m just sorry it has happened so early on for you.
I think I am lucky that they found it so quickly cause no blood test and nothing else was indicating it so maybe I don’t need cardio treatment?! Anyway as the Germans say “Some luck in unlucky times”
I am glad they found it for you before it was too late and managed to do something about it. Scary stuff!
It’s definitely the way to view it, i.e. lucky it got found and can be treated, rather than focussing on our misfortune at getting it in the first place. The glass half full approach. I like it.
Thank you so much for putting things into perspective. I wasn’t worried last year like this but being on the hospital bed and them saying they could see something near cervix took me straight back to the day I was diagnosed with breast cancer I feel like everyone else traumatised.
Love to you all xx
@anb1 i can’t offer any words of wisdom about your fibroids as such. I can sympathise with hysteroscopy which I had due to thickening of the womb lining, I had one during Covid restrictions while on HRT as well, it was horrible and very painful. Luckily all was clear.
I hope you sharing this with us has helped ease your burden a bit. Like our cancer diagnosis the waiting for scans and results is always hard.
@naughty_boob Hi thank you. Yes they are awful I had one last year and one ten years ago. I had the treatment done under G/A I couldn’t face it awake. Reason I was going to have one is because on ultrasound lining appears thickened. It was fine last year and obviously I have stopped the hrt now so that’s bit worrying but then when they couldn’t do it due to cervix being closed I think I freaked. They did try to reassure me that it doesn’t look like cervical cancer and is like fibroid and it is noted on last years notes as fibroids so hope they were right. Xx
It is such a worrying time. Like all of us, anything unusual it makes us think it’s something sinister. Let’s take their comments as a positive, that’s it’s fibroids.
If I was to have one again I would insist on sedation/pain relief or GA, I was worried about womb cancer so just went ahead. The doctor wrote with path results to say I tolerated it well. Such a lie. I had a mask on, breathing heavily and screwing up my face. I didn’t make a sound. Had I not had a mask on it may have been more obvious.
Hi @anb1 I totally understand your fears and worries as I had that worried path for my fibroid before I was diagnosed with breast cancer. I am not 100% sure but I think I read that only 1% of fibroids are cancerous so although you have a breast cancer diagnosis you may be same as me and the two completely unconnected (except the estrogen impact).
I ended up getting my fibroid diagnosis via CT scan, then ultrasound then MRI which confirmed it was not cancerous. Maybe you could request an MRI?
My fibroid is really large and I was getting prescribed medication to shrink along with HRT before myomectomy surgery. It was the breast cancer risk with HRT which triggered me to check my breasts and ultimately lead me to be here with you all!
Oh myyy giddeee aunt!! I’ve been away and now sooo many messages to catch up with ..
I’m going to make a coffee and have a good read through and see what’s what with everyone x
I had to go up to wales to our renovation property as I was expecting an electrician - we discovered that under our bedroom we have a hidden basement ! It’s a bit creepy it’s currently filled with old doors and general junk ., the original door into it had been bricked up !
I the. Had to drive son number two to London for a few days as he was booked by Chef Tom Aiken’s to teach him and his chefs sourdough at his restaurant.. this involved me having to repeatedly drive across central London in rush hour (I mean literally drove past Buckingham palace down Pall Mall )
I’ve now decided that I’m badass and can drive anywhere
Also very controversially .. my oncologist put me on low dose hrt.. I am hormone negative and am not afraid to say .. I was spiralling .. I couidnt function. I was losing interest in stuff .. the brain fog was so bad I was getting scared to drive in case I made a mistake .. Two months ago my oncologist said .. “your quality of life is more important , there is no point treating your cancer if you are left living a miserable life “ she said I was hormone negative she was prepared to put me on the lowest dose for no more than a year .. just to help me at the moment .. and I have to say .. it’s made a huge difference in terms of being able to function again . I’m actually looking forward to Christmas and have been making garlands and wreaths again for customers when I couldn’t be bothered before ..
@sassy3 - I didn’t join a trial but had to stop my herceptin in June as I was unusually allergic to it . I had nine cycles . My consultant reassured me that 9 is being shown to be as effective as 18 in many cases especially in what they term “early cancer “ do what feels right to you .. is it possible for you to consider how you feel when you get to nine? Then if possible continue with the same treatment.
I’m a bit unsure as to why they say they’d switch you to herceptin though . It must be a cost thing . I only had herceptin not Phesgo
Thank you for responding, I made the decision to join the trial as I already have AF and didn’t want risk further heart issues so, I have finished my phesgo at 9. Oncology only offered me Herceptin if I wanted to continue for the remaining 9 treatments due to my complete pathological response. Whether that is the reason, or as you suggest maybe down to cost I really don’t know, as I have chosen to stop at 9 it doesn’t matter but it is a thought!
If it helps, I only had nine as well .. I had my last one in June , I’ve looked at the Persephone trial and it’s definitely positive .. it may well be that soon they’ll change it for everyone to 9 cycles after researching more x
You definitely have to think of your heart .I went the other way and my EF went through the roof !
@arty1 so glad you’ve finally been heard on stabilising things with the hrt. Time something went your way. Perhaps you could turn the basement into an art/ craft studio….?
@carrie5 - well .. we already have a basement .. which is going to be exactly that however there is no way into this room except under the floor boards .. it’s a weird one ! The bungalow is set on a hill with the back raised up .. so it’s a bit like the American style houses with those crawl spaces under the boards only you can stand up in it . It’s very odd .
Things are not brilliant though tbh . Although I’m feeling better .. my poor 15 year old daughter had fallen apart and been diagnosed with anxiety and depression .. she’s struggling to go to school and it’s very worrying
@carrie5 gps have been useless and school are not being understanding at all sadly .. it’s very stressful to say the least but I’m having no choice but to withdraw her and home ed her until her GCSE’s next year
Hi all, I haven’t posted much lately as nothing much going on, just waiting for next treatment step! At last had my CT for Radiotherapy yesterday and have a start date of 15th December for 5 days. It will be good to get it done before Christmas as due to me joining a trial I have also finished phesgo. It does feel strange to think ‘that’s it’ quite scary although a chance to try to get back to my ‘new normal’ whatever that is…..hope everyone is doing as well as possible, wherever you are on your journey! Stay strong!!
it’s currently filled with old doors and general junk ., the original door into it had been bricked up !
)
however there is no way into this room except under the floor boards .. it’s a weird one ! The bungalow is set on a hill with the back raised up .. so it’s a bit like the American style houses with those crawl spaces under the boards only you can stand up in it . It’s very odd .