From DCIS to invasive - I'm terrified

Awe thats goos to hear if its true about chemo being gentler. I know my regime is one day a week every week for 12 weeks…most folk go once every 3 week so maybe thats what they mean…God knows…but I’ll be asking on 20th! Let me know how you get on too. Ill be thinking of you n will say a wee prayer. Good.luck xx

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Hi Sarah…how did you get on at ongologist? So turns out the 2 tumours were 7mm… still small but not as small as first thought! Anyway the Doc made the treatment sound very positive. The treatment isn’t one of the harsher ones so hopefully side effects won’t be so bad but… theres always a but…everyone is different so there are no guarantees! She recommended I use the Macmillan site to check side effects of the meds I’ll be getting…so many different posts with so many different effects…some not mention by the Doc. Was a bit scary tbh…but lots of good advice too. Starting treatment sometime in January…no set date…so its just a case of plodding along til then. On the bright side my family can enjoy the festivities without worrying about me! Have the best Christmas possible and heres to a much brighter New Year!!!

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Mine was the opposite. Diagnosed with 17mm tumour and had lumpectomy and 9 lymph nodes removed in October. Thankfully lymph nodes all clear.

Results showed DCIS and LCIS so now measures 49mm. As the margins were not clear I am having further surgery on 15th January. I had surgeries in the 80s for what was then known as pre cancerous growths but my bcn says that is what DCIS was known as at the time.

As I have vast areas of calcifications, which no-one seemed concerned about, I am terrified that both breasts are affected by DCIS.

I hope that everyone manages to have a happy Christmas and are able to put the journey into the background for a few days.

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Hi Mandz, So I have Paclitaxel weekly for 12 weeks, herceptin every 3 weeks for 6 mths, radiotherapy and also a bone infusion every 6 months for 3 years. This is with an 8mm tumour but her2 positive. All the best to you with your treatment xxx

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My treatment is same as you apart from the bone infusion. Hope its all going well and you have minimaside effects. X

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Thank you :heart: First treatment done and so far, no side effects at all. I hope that lasts… xx

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Good stuff. I start chemo and herceptin injections on Friday…getting nervous now tbh. X

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I’m also on a Friday so you’ll be one week behind me. Absolutely, it’s nerve wrecking not knowing about what’s coming or how it will affect you. I’m told it gets easier as you know the routine. I’m still nervous about it all and will be every single week. I don’t even take paracetamol normally!

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Im not much of a pill user either…I cant cope with cocodamol so this will be interesting. Im trying to keep the mindset of one day at a time but as you say…the unknown is scary. But weve coped with the shock of diagnosis…then surgery…so im sure we’ll get through it! Tbh…we don’t have a choice…big girl pants are on…lol x

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That’s a good attitude! We will be fine. :slightly_smiling_face: :heart: :muscle:

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I keep notes in my diary of which side had the Herceptin injection and the timings for the day of chemo (injection, wait x amount of time, chemo for hour, flush for another length of time) etc. Sometimes the nurses seem a bit all over the place so you can speak up and get them straight.

I also noted down side effects/random things afterwards so I would know what to expect each time.

Oh goodness, does there need to be a certain amount of time between Herceptin and Paclitaxel? Should I be keeping an eye on that?? I had assumed it would all be done by the nurses in the correct order at the correct times! It does seem a bit chaotic - I did wonder whether they ever gave anyone the wrong drugs! More to worry about… xx

I was told there needs to be about half an hour between. This is in case you have an allergic reaction as these generally happen within that time span.

I just found that knowing what should happen helped me feel a little in control. And, honestly, occasionally a nurse needs a reminder. Last time I was in someone nearly had their cannula removed after their first chemo drug, but she was due another one. Thankfully she stopped the nurse in time.

I should add that generally the nurses are lovely and on the ball with what is happening.

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My nurse didnt fit the cold cap correctly so wasted 23 minutes…i gave up. Then i was told I was getting anti sickness and piriton before first chemo infusion. Found out later there was NO anti sickness given…only piriton and steroid. Only found out as my hubby and I were discussing when I should start it, another nurse overheard and intervened and made me aware I hadnt had any at all! Will be taking notes from now on. So glad my hubby was there to witness it all.

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No one is allowed anyone in with them where I go in Exeter! It’s such a long day sitting there on your own… Yes good to know the procedure. It does seem a bit manic sometimes with everything going on. I was wondering the other day whether the nurses ever make any mistakes… Let’s hope not. xx

Always listen as they are checking with each other when they are double checking meds in front of you before infusion to ensure you get your and not someone else’s, I had to pull mine up once on that at the time and say that’s not mine you just checked, good job I was listening in on their conversation at the time :+1::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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That’s terrifying!!! We shouldn’t have to oversee the professionals. Something else to worry about. Should I be asking to check the actual meds against the name?? I find this very concerning… xx

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They always ask my name and date of birth before they begin anything for me, even the weekly picc care and bloods.

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I just always made sure after that, it was an exceptionally busy day for them and there were new staff there too, but I can’t fault the entire team at my trust who took care of me 2017/2018 they were the kindest more caring, understanding wonderful staff on the planet and I felt safe always (even with that as nothing happened and I’m 100% sure the nurse who administered it would have check again before proceeding) they were that professional :heart:so please don’t let that :flushed:you, just double check for your peace of mind when you have treatments :+1::heart::two_hearts::two_hearts::sparkles::sparkles:Shi xx

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Our nurses as me to give them my name DOB and address and alwaya 2 there to check… this might be a safer way to do it?

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