Hi all, I’ve not been on here for a while as I’ve had a bad time of things.
To help with the Kadcyla chemo they wanted to put in a port as it’s been tricky accessing my veins.
Well it has been a nightmare. They had trouble fitting the port and had 5 attempts at accessing the vein. Anyway they got it in and I was sent home. But I had quite a lot of pain, so eventually went into A&E, where they discovered they’d punctured my lung when putting the port in! I was admitted to have it monitored, but now recovering at home with instructions to go back to A&E if it gets worse. They have had to pause all my cancer treatment until it’s healed and I’ve been told it’ll take a long time.
I’m so upset and angry. Not only because of the pain, disruption and the implications of lung damage for my future health. But I was due to start radiotherapy this week, and there had been a cock-up and so this was 2-3 weeks late and they were doing everything to fast track me. I checked several times if there was any chance the port insertion could delay my radio, and they said no go ahead. Now it’s all on hold so I am worried about my recurrence and secondary cancer risk increasing with the delay to both radio and Kadcyla.
No one from oncology has contacted me to discuss the implications despite me asking many times. I just don’t know what to do.
Ladies! I have just got my MRI results back and there is no evidence of disease… i been sobbing for about a hour now!!! I know they still need to do the op and test the tissue… but omg i feel so happy. I prayed for this moment and i spoke out to my grandad who recently passed to make this happen 🩷
I have just had an ultrasound and a ct but I don’t think that was for cancer as they didn’t put the stuff in like last time that shows the cancer. They think it’s just scar tissue but don’t know until the op. How come they did an mri? My ct was to check on my lung nodules.
@isthisreal oh no, how dreadful! I hope you are feeling physically better, did they put a drain in for your lung? I dont know what say about your ongoing treatment, bit just sending you big hugs and keep trying to contact oncology team. Perhaps your BCN could intervene on your behalf? Thinking of you.
@jeml what brilliant news for you, i had the same response to chemo and then no cells were found on testing from surgery. Such a relief! Have a good cry!
@salbert - poor guy has probably aged twenty years since being with me yes I spoke to oncology yesterday and a breast nurse called me … I’m still on track to start next week x
Fingers crossed you don’t get the cold , my daughter has an awful right now and I’m staying away from her
@jeml what fantastic news ! I think this deserves a lap of the local park to slap every bench in sight !! X
@isthisreal - This is shocking it sounds like incompetence, can you speak to PALS ?
Re the punctured lung … it will heal . My husband had a punctured lung in a car accident at 21 and he’s had no further issues x However I completely understand the anxiety surrounding delaying your treatment. I would be furious Can you speak to your oncologist ?
@isthisreal I am so sorry to read all that you have been going through. It just sounds terrible and I can understand how this must add to your worry. I would be upset and angry too. I hate to be that person that is a pain in the arse to my medical team but I’ve also learned that it is the person that shouts the loudest who gets heard. I think you have to keep contacting them for answers. Somebody needs to speak to you and put you in the picture. Learning to advocate for myself and stop being so passive has been a very positive step for me and so yes, I am saying you must be a pain in the arse if you need to be so that you can get some reassurance from your team. I’m giving you a massive hug and saying a prayer that you heal quickly.
@Linda_Corinne Can you give them a call to find out why? It sounds a bit confusing. I had to have a 3 month follow up for lung nodules which were thankfully benign. Keep us posted.
@jeml Totally over the moon for you. Your Grandad doesn’t want to see you again just yet and quite right too! It’s absolutely wonderful news. I remember your first post. What a difference to how you feel now. It makes me feel quite emotional too.
Thank you so much everyone! My top was wet through earlier in how much tears i have shed today.
I been on phone and texting all day letting people know. I still know i have some things to go through yet but knowing my mri is now clear gives me even more motivation. I have my last chemo this friday too! Time to slap a bench as you all say
My little one set me off again she ran and gave me a big hug and said im excited mummy… im excited for you. Hurray booby getting better. Omg im crying now writing this.x
She is not daft! She picks up on everything and i have involved her all the way through… cutting hair etc.
She still has no idea obv how serious it is but hopefully wont remember bald mamma in years to come lol. But will tell her when she is old enough to understand what i went through.
Cant wait to get rid of the shitty titty haha
@isitreal I’m so sorry with everything you’d been through, it sounds dreadful. I hope you get to speak to someone from your oncology team soon so you can discuss the implications of the delay in your treatment. I hope you recover quickly and can start your treatment. I agree with @arty1 and @salbert that you might want to talk to PALS and advocate for yourself. It isn’t right what has happened.
@Linda_Corinne I had an MRI recently to check for metastasis within my spine, with no need to tracer to be injected. But I also had an MRI to size my first tumour with a tracer to decide on the treatment plan. I’ve only had a CT scan for my radiotherapy planning. I would talk to your team to see why it’s a CT or maybe call the BCN nurses for advise.
The CT is defo to check on the lung nodules. The last 1 was more areas and checked for cancer but I just wondered why they wern’t checking for cancer as the ultrasound didn’t confirm how much cancer there is left now.
So yesterday I went on the Moving Forward course and I loved it. It was so great to splurge and meet a bunch of wonderful women who were all at the same point in treatment. To my absolute delight, two women from this thread were there. It was a very thrilling and touching moment when we all realised who we were and that we’d been supporting each other for months. Needless to say, they were both lovely and we shared some gripes and laughs. @naughty_boob your name came up and we all remain in awe of your encyclopaedic knowledge and sound advice.
I had my oncologist and another Phesgo today. My recent MUGA heart scan has shown a slight reduction in heart function so now I have to go and see a cardiologist for an echocardiogram to see if I need a pill to get me to the end of Phesgo in April 2025. More disappointing than anything else as I have to go to West Brompton for these appointments so I’ve had to give up singing for the Christmas carols concerts as it’s one thing too many. Never mind, I can still sing everywhere else…doing the housework, Morrisons, Musical Theatre class…talking of which, that starts in 2 hours and I can’t remember what I have planned. Better get my skates on.
I got my CT results yesterday. My lung nodules have decreased by 1-2mm so this could be due to having the CT at a different city so I will need another in 2.5 months before surgery. I also have a lymph node above my shoulder blade on the other side from where the cancer was/is that is bigger but that could be due to having a covid jab a month ago. So I may need an ultrasound but not heard either way yet. The clip showed up but the cancer didn’t.
We also discussed my op and he thinks I should have a full clearance and not just level 1 so am back to being unsure what to do re that. My cancer didn’t read the book as it’s usually in the nodes not scar tissue. It can jump to level 2 or 3 and can still be treated if in level 3. If less surgery is done more radiotherapy will be done which can affect the lungs. He said the standard is a full clearance when you have a recurrence. So 1 onc says just remove level 1 and the other says remove all 3 levels.
Hello everyone, i seem to have survived having a cough snd cold, feel much better now, but still coughing. I’m hoping it will subside before trip to theatre next week. @salbert i’m glad the first part of the moving forward course was good, its so nice to meet other people, especially one you have already had some contact with from this thread. Nobody in my group admitted to coming on the forum, but did meet two people i hsd some connection with. It was unfortunate i couldnt go to second session, but Breast cancer now are going to contact me about the next one in March, so i hope to go bsck then. I do feel a bit strange at the moment - pleased the main treatments are over, but a bit scared to come out of ‘bubble’ and on the other hand glad to be able to do normal things and go out and have fun. I suppose it takes time to adjust. @Linda_Corinne goodness your case sounds complicated. I hope your BCN can help you with all that information you have to digest. At least there seems to be some good news in amongst that.
Penny
@Linda_Corinne that does sound like a lot to contemplate. What a headache to have two different opinions. I always err on the side of go in fast and hard and do whatever it takes to rid myself of it, but that’s just me. Maybe call the BCN on here too? They are available to us and I found them very useful.
@pennyp Glad you are on the mend. What are you going to see at the theatre? Nothing worse than having a tickly throat when you’re in an audience. I hope it’s a loud show in case your cough lingers. I totally understand about coming out of treatment. A bit like being kicked out of the nest and being expected to fly.
I’m off to Mamma Mia - The Party tomorrow. I WILL be posting a pic of my spectacular costume.
Hi @salbert i’m going to see Jekyll snd Hyde at a small local theatre, could do with something more cheerful really, but going with a group of friends so that will be nice. Going to a gua sha workshop tomorrow with my daughter (no me neither) but apparently its a chinese facial massage with special tool, going to lunch in Haslemere, never been there. I decided its time to try new things so i dont get stuck in my ways. Xx
@pennyp That all sounds fab. I think we could all do with a Chinese facial massage (depending on what exactly that special tool is!) I sometimes meet my cousin at Haslemere as it is equidistant for us and we have a couple of pics of us with Arthur the Bear at the Haslemere Museum. You have a great weekend. xx
yes I spoke to oncology yesterday and a breast nurse called me … I’m still on track to start next week x
it sounds like incompetence, can you speak to PALS ?
Can you speak to your oncologist ?
Your Grandad doesn’t want to see you again just yet and quite right too! It’s absolutely wonderful news. I remember your first post. What a difference to how you feel now. It makes me feel quite emotional too.
I agree with 
