Good luck, salbert
Sending hugs 
Good luck, i’m sure you will be fine.
Penny
Hi everyone, I just wanted to introduce myself. Never in a million years did I imagine I would be joining a group like this, yet here I am. I had my diagnosis last Tuesday, but told 2 weeks before that, that it was probably cancer. One lump in left breast and lymph node tested positive for HER2+. Its really scary. I had a CT scan a few weeks ago too and waiting for the results on that, which is the worst part, as I’m constantly feeling aches and pains and asking myself do I feel breathless as my chest feels a little heavy, but I do think deep down its all in my mind, but that doesnt help when you’re waiting on news whether its spread and isnt curable. I’ve been told I will have chemo first and I’m seeing the oncologist next week for a treatment plan, so hopefully will have the CT results then. Had a heart echo today and bloods tomorrow. Seems like its non stop xx
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Hi Cheryl
I recently joined this club. I know what you mean about all the appointments. I had bloods and swabs yesterday, PICC line fitting tomorrow, more swabs and echo scan on Friday. I start chemo on Monday. I have come to terms with it now and just want to get it started. One day at a time.
All the best with your treatment.
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Hi @cheryl2109
Welcome to the group and sorry to hear of your diagnosis. We are all a different stages of our journeys but we will be there to support each other.
You may want to join the monthly chemo starters, it’s really supportive to be with others on a similar journey and share the ups and downs. Here’s August August 2024 chemo starters
The waiting for your treatment plan is the worst part, all the tests and appointments it’s like a full time job. Once the treatment starts you should feel a bit more settled but there will be more appointments! I’m 15 months on from finding a lump and still have Herceptin 3 weekly with 6 monthly Zometa infusions, MUGA heart scan 4 monthly. I’ve just had a lymphoedema clinic and my annual mammogram with an oncology appointment end of August.
It can be a long treatment time with HER2+ and it’s wonderful this thread was started for that ongoing support.
Take care 
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Hi @cheryl2109
We have all been where you are now and I know that doesn’t help, I was also beside myself and very much felt every ache and pain when waiting for my CT results.
It sounds like everything is moving quickly for you to get started with your treatment. I am in the August chemo starters although I’m finding out tomorrow what date my treatment starts as I’m away next week and have my kidney function and echo on my return. It may roll over to the beginning of Sept! Such a long time since I had my biopsy on 7th June 
Iv come to learn that nothing is certain and things can change quickly and no matter how much I worry it’s not going to change anything.
I’m so grateful for this group there is wealth of knowledgeable and lovely people here to support you. 
xx
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Thank you ladies. Quick question - did anyone have to have a kidney function test? Just been told the consultant wants me to have one, even though my last lot of bloods said my kidney function was normal. Now my overactive brain is thinking they’ve seen something on the CT! For someone who at 46 years old can probably count on one hand the amount of times I’ve been to the doctor, all these tests are overwhelming! xx
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I had a meeting yesterday that didn’t go great tbh. I’m 4 months into chemo and just found out I’m triple positive as they’d only told me about the HER2 positive part initially. Some sort of communication error with the initial biopsy results.
I’d been given a plan and timescales etc but no one mentioned any hormonal element during all of this either so I was unaware till yesterday that I’d need hormone therapy for 5-10 years depending on surgery results or that Kadcyla was potentially on the cards for up to a year if surgery results were not PCR next month. I was told before it would just be phesgo injections continuing and the amount would depend on surgery results. Weird that it’s never even came up anywhere in convo and I was gutted at not being told from the off and not knowing my proper diagnosis as have to get my head round the impact on things moving forward again and feel like I’ve been diagnosed all over again.
My question is…. Is anyone on Kadcyla now and how is it? It’s on the cards for me but uncertain at this time so just trying to figure out what it’s like in comparison to EC/Docetaxel that I’ve been on
Hello, my friends
Thanks for all your heartwarming good luck wishes. I am home! In fact, they let me come home last night. I now have a brand new, bionic tit. My drain is nowhere near as painful as last time as the marvellous Katherine Krupa has used a tiny little tube as opposed to the hosepipe that Dr Doom stuck in my side! What a difference. I’m walking about and carrying my drain etc around with me on just Paracetamol. I am fuelled by chocolates. I just feel a bit bruised but that’s all.
So… I want to say WELCOME to @cheryl2109 and first of all, please accept my massive, virtual bearhug. The bit you are at is plain horrible. Fear is your constant unwelcome companion. It’s so sudden, isn’t it. Life is ticking along and minor irritants such as your family not picking up their clothes are all you really have to worry about and then WHAM! The biggest curveball smacks you clean off your feet and suddenly you realise you have spent your life worrying about things that simply didn’t matter. And suddenly we find ourselves here, in this club that we didn’t know existed and which we never thought we would join. This thread takes hours to read so I’m going to repeat stuff that I clung onto during the scary times in case you haven’t seen it.
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My breast cancer nurse at Marsden recently told me that the vast majority of breast cancers are now curable and those that aren’t are treatable. She said that diabetes would kill you if untreated but people now live with it and that now women with Stage 4 breast cancer are living with it.
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My GP told me of his friend in her early 30s who found out she had metastatic breast cancer which had spread to her brain. Just over a year later and after chemo, Herceptin etc. she shows no evidence of disease.
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A close friend of mine has a sister who got diagnosed with Stage 4 breast cancer 10 years ago. She has just got back from visiting her grandchildren in Dubai. She lives with it and yet it is in her liver, lungs and brain. The tumours sit there and don’t get any larger.
I was convinced I was Stage 4 but it turns out I was Stage 2 so I wish I had not put myself through the mental angst that I did.
It’s impossible to stop your mind from wandering to the darkest and scariest of places and we have all done it. But I pray that you get your results fast because once you are on that treatment path, you just feel so much better. We do have a lot of appointments, it’s true, but they become part of your life and you make friends with all the nurses and staff that you come into contact with and then it gets hard to say goodbye when they finally kick you out the nest for you to fly off on your own again. I think lots of us have had kidney function tests so it’s normal but you can ring your breast cancer nurses to check who may be able to put your mind at rest. Keep us posted. We’re all here for you.
@bigpickle I hope the PICC line fitting goes well today and all the other bits and bobs. I remember wondering how I would ever get through chemo and @naughty_boob saying that I would and I could and she was right. Suddenly it is over and I was slapping a bench! (There was no bell to ring at Marsden.) We all get through it and you will too.
@lilly123 It’s so true what you say about no matter how much you worry, it won’t change anything. I asked a friend who had breast cancer back in 2020 if she worried every time she attended a follow up scan. She said no, as there was no point. Simple as that. So when I recently went for a scan, I made the decision not to worry. I feel like the worry at the outset is so all-consuming that I have to do everything in my power not to go there again. It’s a battle but one we have to win, for our own sakes.
Hi @belle1 Well, that’s a bit rubbish to only find out you are triple positive now. I’m so sorry to hear that. I’m not hormone positive but I know there are women on here who are, so I hope you hear from someone soon re the Kadcyla. Big hug to you too.
I’m told I can shower with this drain and dressing which is fantastic so I guess I had better get my sorry carcass out of bed and wash it or it will be midday. Then I am going to read my book and chill out because if you can’t do that the day after a mastectomy, then when can you?! 
Love to you all
Salbert
x
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Hi @cheryl2109
I am having this done before chemo starts, have to have radiation injection and then go away for
2 hours come back and Have a blood test, go away for an hour then come back and have another and then go for another hour and come back and have another. So all in all 5 hours at the hospital. 
It’s to check that your kidneys are able to manage the chemo.
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Hi @lilly123 Thank you for your kind reply. Its good to know that its something thats done as standard along with all the other many many tests xx
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Hi @salbert, you are so so kind with your reply. It really is uplifting when you hear stories of people living with cancer even if it cant be cured. Its makes you hope that its not the death sentence that your brain is telling you it is. I hope you are feeling okay after your mastectomy and you definitely deserve to chill and do whatever makes you happy xx
Hi @salbert
So good to hear you’re recovering well from your surgery. It’s so good to hear positive outcomes. It’s amazing how in such terrible times we are still able to hold on to the little things that can make life just a little easier.
I have my chemo scheduling appointment today. Everything has suddenly started to move a little faster. Iv never looked forward to an appointment as much as I have this one! Am I weird! 
Bought myself a chemo outfit as I heard someone else mention this I thought why not now I need to stock up on some healthy snacks and a few chocolates xx
Hi, good to hear your surgery went well. I couldn’t shower when I had my drains in, in fact they wouldn’t let me shower for 2 weeks! Good job it wasn’t very warm !
PICC line was not fitted, Covid and MRSA swab results had not come back. Now got to go again Saturday morning. 
Hi @salbert
I am so glad that surgery went well, that you are home, and that you have chocolate .
You are alway so incredibly kind and encouraging in your responses to others - I hope that you can now breathe a sigh of relief that this bit is over for you. You truly are a warrior.
As you know, take it very easy and be very kind to yourself.
Wishing you a swift and straightforward recovery.
Xx
Hi @belle1
Sorry to hear that communication has not been great.
I am triple positive too and have been told I would switch from phesgo to kadcyla if residual cancer is found during my DMX on the 28. Kadcyla is basically herceptin with chemo, and side effects seem similar to phesgo from what I have read on this forum. Although I hate phesgo I hope I will contnue after surgery as I can’t have a port for IV due to a heart condition.
I will know in about a month.
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Hi @salbert
What a big step. Very happy to hear you arw doing well. I am amazed you have been released so quickly. And very impressed you can be so chatty after major surgery!
My surgeon does not use drains, apparently it is standard practice at RM Chelsea. Let’s hope the build up won’t be painful.
I am starting to prep for my DMX, bought a V shaped pillow yesterday and need to source heart shapes ones…
I hope your recovery goes smoothly.
Big hugs,
Marion
Hi @salbert , wel done you - sounds like all going well. The dressings they hsve these days are so good, you can shower and tje dont peel off. Enjoy your chocolates.
I went for pre-assessment today and was a bit alarmed when they said i would be a day case for a bilateral mammaplasty, but hopefully will come home armed with lots of painkillers.
Best wishes.
Penny
@belle1 sorry to hear you are now triple positive and this wasn’t mentioned before. I’m ER+ HER2+ PR- and having Letrozole as I’m post menopausal. Most bc with ER+ will have some sort of hormonal therapy eg Tamoxifen (premenopausal) or Letrozole/Anastrazole (aromatase inhibitors) for 5-10 years, which in themselves cause menopausal symptoms.
I can’t comment on Kadcyla but you can search the forum to find others that may be similar to you. I’ve found this one, someone who is also triple positive.
@salbert you are such a warrior! It’s doesn’t look like your plan to lounge in bed and eat chocolate is going to play out🤪. I can’t believe you are out so soon and that you’re are not in too much pain. I love the bionic tit comment, it’s so apt. Your surgeon sounds like the best of them, I had a lady surgeon also and when I went for my annual mammogram the radiographer commented on how good the boobs looked and how neat the scars were. I’m still not keen on looking at my naughty boobs but like your poem said I’m grateful for all they used to be.
Love to you all
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