@naughtyboob- yes it’s frustrating having to chase appointments isn’t it … I rang the BCN yesterday and she said she’s aware that there is an issue with appointments being sent out …
I worry myself sick about the chemo as I have left ventricular hypertrophy and a leaky valve .
My EF is 57 and I really don’t feel there is much leeway for it to go down much but my cardiologist said if I need the treatment I have to have to have it
I remember us discussing this before regarding EJ. I remember the oncologist changing my chemo because of my heart issue and family history. They did say if my biggest tumour was any bigger that I would have had to have a combined chemo. Some people’s EJ hardly reduced, I read that some only went down 1 or 2% so I was hocked when I went down 8%. I can feel the difference in my fitness levels. I’m hoping it will improve over time.
You will be monitored closely. I have regular MUGA scans which included injected radiation and ECHOs with the cardiologist.
I hope you get your appointment soon.
Yes you’re right ! We had a Lengthy discussion ! Interestingly my cardiologist would consider your EF to be still well within range , he said my heart is pumping fine (doesn’t feel like it 
) and my response is … well it is NOW …hoping they consider all this with my regime .
He wrote to my consultant and said he had no issues with me having herceptin.
Interesting seeing how people got their diagnosis . I’d had weird stabbing pains in my boob for months but at no point did I think cancer. I do think they need to say that pain can definitely be cancer … I only went to my gp when I woke up with a huge swollen boob .
They couldn’t see any lumps but there were calcifications through all four quadrants . Initial biopsy showed extensive grade 2 DCIS and 1.1 mm of grade 2 invasive ER/PR- and HER2+ … then back for biopsies on another section … this showed high grade DCIS and my consultant said she believed my nipple area was full of DCIS too … hence going for a mastectomy as I didn’t feel much hope there would be clear margins .
All along they’ve kept saying that the invasive is minimal etc but I know things can change after pathology and my mind runs away with worry that my nipple was actually full of invasive and I’m a goner … Not helped by my breast being incredibly painful right up to surgery date .
They said it was all the biopsies but who knows … I won’t lie I’m dreading results day so much especially as she said my sentinel node was huge … There never seems to be any relief does there …
@naughty_boob I’m lucky with the lymphodema clinic … or unlucky depending on how you look at it I already have lymphodema in my right thigh due to a botched vascular surgery in my twenties .
I called my lymphodema nurse and told her my diagnosis and that I’d had SNB with my mastectomy so she’s made me an appointment for a months time to get my base line levels of my arm so she can keep an eye on it
I found a lump in my right boob which was 20mm invasive HER2+ ER+ and sizing of that found another primary in my left boob, invasive 0.9mm ER+. No DCIS so I had lumpectomy on both sides.
I found the lump while bathing and checking my boobs. Self check works but smaller tumours like my left could not be found with touch or a mammogram as it was so far back. Only MRI with tracing fluid, lying on my front with my boobs hanging down!
Hello everyone
I am back from Phesgo No. 9! I’m exactly halfway through, I am told.
@jeml Mummy guilt is real. That’s so sweet that your little one was putting medicine on your boob. I can’t imagine how hard this must be with a 2 year old. All power to you. I had Ondansetron for the nausea which seemed to work as I couldn’t handle steroids. They sent me totally barking mad! Also, I had the breathlessness which my oncologist told me was due to anaemia as your red blood cell counts are lowered. This of course rectifies itself but I got folic acid after being advised on this forum by other women to take it. How are you doing today?
Hi @sopranosam - I am one month behind you. I was diagnosed in November 2023 and that will be why you are on Phesgo 10 and I’m on Phesgo 9. Have you had radiotherapy and did it affect your voice? I ask because of your Username which makes me guess that you sing. Just call me Sherlock Salbert. I am back teaching Musical Theatre and am worried that I won’t be able to sing with the kids.
@magl Ha! Wouldn’t an index be a good idea for that book. Much better than all the bent over edges it now has. I also liked the Victoria Derbyshire podcasts and video diaries. I can relate to how at the beginning you are full of anxiety and updating your will and by the time you are well into treatment it’s a case of ticking it all off as life has got busy again and you haven’t got time for this! It’s true that I am more reflective and appreciative of life now but no doubt I’ll go back to being as shallow as before! But I hope not.
@arty1 I’m not happy at all that you don’t have a follow-up. Don’t let up on that. That cannot be helping your mental health at all. I found CBD oil from Healthspan took the edge off my anxiety. I then got given Mirtazapine by my GP which helped too. I know you are dealing with more than the bc which adds to the anxiety so I am praying that you get a call soon and can move on with the next stage of treatment. The waiting is hell. I’m so glad that @naughty_boob knows about how the heart can be affected by treatment so that you have someone who understands and you can compare notes. You are doing great though, even if you don’t feel you are. You are still on here, laughing and joking, and enthusing everyone to get naked and paint their bodies. And that is how you are beating breast cancer.
@norts Classic. I intend to do the same and advise my teenage son that I am doing a naked body paint calendar when he gets home from school. It’s making me laugh aloud just to imagine his reaction.
Well, I’d better do some work before I jump around a studio singing ‘Stick It to the Man’ as we are doing ‘School of Rock’ this term. I cannot believe I get paid for it! In fact, this evening I am going to think about breast cancer and direct all the lyrics to smashing it into oblivion. That will be cathartic. I shall be singing it for all of us.
Love Salbert
xx
@salbert - I love School of Rock ! Your job sounds so much fun ! How are you getting on with phesgo? I feel a lot of you are ahead of me in terms of chemo etc so I’m watching with interest … today I’ve felt a bit more energised and went to the garden centre and bought some plants for the garden … Husband drove and did the legwork I just pointed to the plants.
I am not happy , it seems I won’t be getting a post surgery appointment, I rang the clinic and they said they are really sorry , management are aware that some people have t been sent appointments but there is nothing they can do , I had a little cry when I got off the phone wondering if they’ll even send me an appointment when my results come back , I feel abandoned by the clinic
That unheard of. You have to have an appointment so the consultant can tell you what they found and what they’re going to do about it. They can’t just leave you like that not knowing what’s going to happen next. Have you thought of sending an email to PALS? They’re often good at sorting things out.
@magl Ive just called PALS actually , I’m waiting to hear back as the woman I spoke to said she was going to try and find out what they mean by management issue .
My understanding is this appointment was for a check over to make sure I’m recovering from surgery. Not sure if results would be back yet ?
I’m glad you’ve contacted PALS. How can they just leave you hanging? I saw my Advanced Nurse Practitioner just days after my op to remove the drain and PICO dressing and to see how I was doing. I got my results just under a month later. I had these appointments booked in when I had my op. This is awful. Did they give you any idea of when you would get your results? By the way, Phesgo doesn’t affect me at all. I have zero side effects so I hope you will be the same.
PALS are very good. I got Covid three days before my first appt to see the oncologist and couldn’t get through to anyone to cancel it. I got myself into a right state. They sorted it all out and made sure I was given another appointment.
Another option would be to just go to the breast clinic and ask to see one of the nurses.
It’s awful - I can’t believe I’ve just been left to get on with it , I’ve just left a tearful message on the breast nurses answer phone . I don’t have a drain so no issues there but it’s 10 days since my op . PALS lady called and said she’s been given the number of someone who may shed some light on the matter but she can’t get hold of them right now ….
I got my results two weeks later and was given the follow up date on the same day I had the op. There are so many different systems.
@magl - I’m hoping they can sort it. I have toyed with the idea of going there but it will be embarrassing if reception say I cant be seen … I feel so upset. They’ve been brilliant so far but now I feel a distinct lack of confidence
@magl I expected the appointment quickly after surgery . My hospital use a central booking system which updates the NHS app and I expected to see it appear within a day or two …
maybe I’ll never get my results 
I’m losing confidence now
I have my doubts about that NHS App. It doesn’t seem to work properly for me except in a very limited way.
It’s fairly rubbish - but it seems clinic co firmed no appointment for me on their system … So I guess I just won’t be seen… 
… When my husband gets back from doing the school run I’m tempted to get him to drive me there it’s just it’s half an Hour away and rush hour traffic … plus I’ve left several messages for the breast nurses and no one has called , delays In giving me my results could delay my treatment! These are peoples lives they are playing with
@arty1 thats is sh*t. Glad you have called PALS. You don’t need to know about their management issues, you just need your post surgery area to be checked. You will have an appointment with your results I’m sure, they will need to go over what they found and that they have clear margins or not etc.
Surely you could be seen by a breast care nurse to at least check the wound.
At least you have the NHS app and can see appointments and bloods etc. here in Wales we are so far behind. The most I can do and see if my repeat prescriptions, acute prescriptions and appointments for my GP. I can book appointments on there I have to use a separate website. I can’t see my bloods or any hospital appointments. I have to fill in a Freedom of Information form if I want a copy of my bloods and show my ID due to privacy laws.
Hope PALS get back to you soon.
@salbert half way 
after number 10 you will have less to come than you have had. It felt so great to be able to count down.
@naughty_boob I’m an ex north walian and my family are all still there … the nhs in wales is one reason I’m not keen to return but that’s another story.! Are you north or south ?
So ringing PALS did the trick … breast nurse called and apologised so much and she was lovely. I’m going in tomorrow to have my mastectomy wound checked and she said the issue is a shortage of clinic spaces but they are doing their best to get me in next week . She said I’ve already been discussed in the MDT today and results are in . She put me out of my misery and told me at least that my SNB was clear … huge tears of relief and off to make a celebratory cup of tea …