I went for my second biopsy results today and these have come back as grade 3 DCIS , they’ve upgraded all the cancer to Grade 3 now and my breast is full of DCIS apparently with a small area of IDC .
I’m booked in for a mastectomy which will be in the next couple of weeks and my consultant wants me to meet with the surgeon next week to discuss implant reconstruction as they don’t offer DIEP flap at my hospital .
I’m ER and PR- but HER+ so I’ve got to have chemo after my surgery and herceptin … It feels like a lot to take in … I won’t lie … I’m bloody terrified as I have stage 1 heart failure and an aortic root anyerysm so it’s a huge worry
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@arty1 so pleased you have a full plan and can understand your worries re heart. I had my chemo and Phesgo downgraded due to family history of cardiomyopathy and my own tachycardia problem. I had 12 weekly Paclitaxel and Herceptin as one tumour was 2cm and the other 0.9cm, had the first tumour been bigger I would have had Carboplatin/Docetaxel and Phesgo which possibly could have caused more heart problems. I remember the oncology said it’s a balance between treating the cancer and heart toxicity.
As I’m HER2+ aswell I had 3 MUGA heart scans during my treatment and have been told don’t need the last one after my treatment finishes as my ejection fraction % were within normal limits on my last scan. You were be observed through your treatment. I also had ECHO with my cardiologist, who was kept in the picture with my treatment.
There is a group for all us HER2+ if you would like to join
You might also like to join the monthly chemo starters group when you begin your treatment. I found it invaluable support with others going through a similar treatment to you. This is the September 2024 group and you can search for the month you start nearer the time. I did join two groups because I was going to have chemo first then it was changed to surgery first. I’m still in contact with people from both groups.
It’s a very scary time and you can also speak to the BCN nurses
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
Or maybe consider * Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
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Thank you 
I’m
Pleased to see that considerations were put in place re your heart issues - are things still ok there ? Can I ask what your ejection fractions are as mine isn’t as high as it should be and I’m so worried . I was diagnosed in May , a month after my dad died with left ventricular hyper trophy, mitral valve regurgitation, thoracic aortic root aneurysm and SVT … maybe I should just be shot ! 
My ejection fraction was 57% consultant said he was really happy with how my heart is right now but when my aorta reaches 4.4 cm I need open heart surgery … I’d been hoping to slow down dilation with lifestyle changes … fat chance of that now 
I’m having mastectomy first so I suspect chemo will start in October … I’ll head over to the her thread and have a look x
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You Dad’s diagnosis seems very similar to my Dad and I have SVT. Genetics have said there is a family connection so I already under close supervision regarding the cardiomyopathy.
I was at 68% at the beginning of treatment and it reduced to 60% all within normal range of 55-70. I was told the heart ejection fraction should improve once treatment finishes. I see you are already nearer to the lower end. I’m sure they wouldn’t have offered you the treatment if they didn’t think it was for the best outcome and the benefits outweigh the risk.
Keep us informed of your progress.
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Ahh that’s my diagnosis not my dads , I got my heart diagnosis a month after he died 
I’m in my fifties so they said my ejection fraction was within range for my age but I do feel worried .
The breast team havent looked at my heart yet and I don’t think the consultant knows all the issues as she hasn’t been through my medical history yet - I’m going to start waving the report around at them I think but the breast nurse said they’ll look in more detail at my heart issues
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Sorry I need to read with your punctuation. I’ve just reread it and now I can see my mistake, sorry.
I’m sure they will look into more detail, I only mentioned my Dad’s diagnosis after they mentioned the issues with Herceptin and the scans needed. They wrote at the beginning and kept in contact with my cardiologist. I’m sure yours will do the same. Keep waving that report!
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Sorry I’m typing how I’m thinking it ! Must proofread more
I’m glad they are monitoring you carefully… that’s really good … I hope they take on board my heart issues and plan accordingly, there is no use curing my cancer if I end up needing a heart transplant !
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I’ve just seen on the May 2024 chemo starters group that someone has just had a heart scan and there is no change after 5 injections. So that shows that everyone is different.
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That’s great news - I’m finding the whole worry over my heart is adding to my stress . My cardiologist had assured me that with lifestyle changes I could improve my ejection fraction and now I’m about to have chemo 
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I suppose it’s the usual, loose weight, increase exercise, eat better, limit or stop alcohol. So many suggest eating 30 different fruit and vegetables a week, eating the rainbow. I started that last January and was diagnosed in April. I still have at least 2 vegetarian or vegan meals a week for dinner.
I was already quite healthy before all this started as I saw how bad my Dad was at looking fitter his health and I didn’t want to be like that. I drank moderately a couple of nights a week, a bit more during Covid, who didn’t. Then after my second chemo I tried a glass of red wine and it tasted awful. I have drunk any alcohol since last September and I can honestly say I haven’t missed it. There are so many non alcoholic drinks to try. I enjoy faux gin and tonic in a nice glass, I’ve tried quite a few. Everleaf do some really tasty ones. I may occasionally have a non alcoholic beer and I e tried some non alcoholic wine bit it’s less impressive.
Maybe this diagnosis could be the push you needed to change your lifestyle.
The charity www.pennybrohn.co.uk do online nutrition and eating well with classes which are helpful, as well as online exercise classes.
Take care
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Thank you for always taking the time to reply , I really appreciate it !
You sound like you are pretty healthy living already (crappy treatment aside !)
I’ve never liked alcohol , so that’s never been an issue thank god . I used to be slim fit and healthy and always went to the gym but a horrific divorce in 2012 and life threatening sepsis meant My health went downhill , I stopped eating well , gained weight through medication , was living in my nerves literally , then my daughter got bone cancer at 7 in 2018 I just spiralled into self destruct , started smoking heavily , living on three hours sleep a night …
I then got long covid … and by the time dad died of cancer in April … I was burnt out from years of stress , looking after my dad … etc etc …
I’ve joked that cancer came along to give me a massive wake up call … it’s frustrating that I’d started making lifestyle changes after dad died only for this to happen . I stopped smoking when I was diagnosed but I’d got a long way to go …
I’ll definitely look at that nutrition link , In vegetarian anyway and have been since 2015 … but have a habit of vanishing to the bottom of a biscuit barrel when miserable !
I feel that breast cancer is my body’s last ditch attempt to say … look after your body ! I just hope it’s not too late !
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Good morning @arty1
I am typing from hospital after having my DMX and SNLB. I was diagnosed in January with triple positive BC, 2 x IDC grade 3 and 2 x high grade DCIS. I have had 5 months of chemo with 4 EC and 12 Paclitaxel. Also on Phesgo Then had surgery and will know in 2 weeks if I have 15 radio in addition to hormone therapy.
I have a ventricular septal defect.
My first onco had no clue about heart conditions and I scared her when I mentioned my VSD. I have been followed by a cardiology consultant specialised in oncology. My heart did fine during chemo, I had regular echos and also a heart MRI where my rejection rate was 73%. It went down after my chemo dose was reduced. Btw like @naughty_boob my initial chemo plans included carboplatin which
May cause heart issues.
My cardio gave his ok for surgery too.
Fyi it is likely you won’t be able to get a portacath for chemo. I could not due to infection risks and therefore serious heart risks.
My advice is to mention your heart conditions to every single nurse, doctor, radio consultant etc as they don’t talk to each other much in my experience. And insist on having a cardio following you at the hospital you are treated, or a hospital nearby which is my case.
I hope your treatment goes well. Just shout if you have any questions and feel free to DM me.
Big hugs xx
Marion - sorry for any typos!
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I’m impressed that you typed this out after your surgery while still in hospital ! How are you feeling ? X
That’s such good news that you were followed by a cardiologist, I was diagnosed privately as my gp only put me on the routine list for cardiology so thank god I went private , however the cardiology consultant is actually based at the same hospital so it should be easy to liase, I’ve got my cardiology report and will be shoving it in everyone’s faces next time I go !
My ejection fraction isn’t brilliant sadly , it’s only 57 % although I don’t know how old you are my cardiologist said it was fine for my age (52) but I’m not happy with it , he said looking at the scan my heart was actually pumping well … but I’d have liked my ejection fraction to be higher ,
I’ve been under enormous stress and I know that doesn’t help , I am assuming I’ll get another echo before chemo starts ?
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Terrified is a word I really understand.
In June I was diagnosed with breast cancer after going to get a lump checked. I felt like my whole word had been sent into one massive whirlwind.
I’m in the middle of recovering from having a mastectomy and a DIAP procedure. My tumour has been removed and my next steps are chemo and radiation treatment, which again is really scary. This is all to prevent it returning.
It’s really ok to feel scared and to not feel like being brave everyday. Just let your team help you in every way they can x.
Wishing you all the best x
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Hi @arty1
I am relieved to hear you have a cardiologist at the same hoapital. Shame it is private as they are not cheap when you don’t have private insurance.
. I have had echos every 2 months and my ejection a month ago, when chemo ended, was 62%
My lowest was 58% I think. My next echo is on 17 October.
In any case MUGAs are a minimum for everyone having chemo regardless of any heart conditions. Given the potential side effects on our hearts I am however surprised cardiologists are not automatic tbh
I am 51 so same age by the way!
Please keep us posted. All the best.
Hugs
Marion
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Hi again @arty1
Feeling Ok sorry! Have been given stong painkillers that work. I am allergic to ibuprofen ans aspirin, and codeine and morphine don’t work on me ao they had to find an alternative.
I must say Inwas worried about pain but it is ok.
Take care
Marion x
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I was diagnosed last summer with HER2+ mixed in with DCIS. I had a wide local excision first then Paclitaxel chemo and Trastuzumab (Herceptin) injections. As part of the preparation I had an ECG to measure the ejection. This is then checked every three months. It has reduced a little from 57% to 54% but they are still happy to carry on with the Herceptin (just two more to go!). I would make everyone aware of your health history, but please be reassured that they will be checking your heart health as a matter of course.
Wishing you all the best going forward
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Hi @marionse25 , I’m glad they are managing your pain well , I don’t get on with opiates , they just make me feel sick and woozy so I get you there … I hope you managed to get some sleep last night , hospitals aren’t the most restful places !
Your ejection fraction even after chemo is still fantastic , you must be quite fit , I worry that if mine drops significantly from 57% then I’ll be in stage 1 heart failure , I’ve already been told I’ll need open heart surgery to replace my aortic root , at this rate I’ll be on the transplant list !
I’m hoping they’ll speak to my cardiologist as he is the nhs consultant at the same hospital but in the meantime I’ve booked an appointment to see him to discuss the impending treatment.
I did have extensive tests back in May including a two week heart monitor , he said although my EF was 57 percent , he showed me the recording of the scan and pointed out my heart chambers and said they were filling and emptying as they should and he was happy with how my heart was pumping but it’s difficult not to get hung up on the figures !
My aorta is stable right now but I’m not sure how chemo is going to affect that too , I don’t feel confident that I’ll come out if it unscathed sadly
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Thank you @scientistamafier x
Was your starting EF 57% ? This is what mine was in May … it’s good yours has only gone down a tiny bit assuming my heart issues will rule out certain chemos .
My breast consultant was very blasé and said yes it will damage your heart in a matter of fact way but I assume the oncologists will take this seriously when planning my treatment?
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I have just looked back through some records. An echo taken shortly after I finished chemo, which would mean four or five Herceptin doses (I had a bit of a bumpy start to chemo), gave me an LVEF reading of 58%. I don’t know what I started at, I only have the values from when I switched to Sciensus doing my injections at home. It is now 54% I believe.
The consultant will be checking these readings. The nurses who come to do my injections always check when my last echo was and comment on the readings. One time I had the echo only a few days before a visit so the nurse didn’t have the value on her system yet, but said my oncologist had approved the Herceptin does so the echo must have been ok
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