Er8 Pr7 her2 negative 6cm tumour

Thank you for replying it’s good to hear someone who has lumpectomy instead of mastectomy I think I’ve convinced myself mine will be the latter but hearing different peoples treatment does give me some hope. I will take whatever treatment they offer me tbh they are the experts in my eyes I don’t feel I’m in a place to be able to pick and choice for myself. It’s good to see that you are towards the end of your journey I hope you are feeling ok it must be lovely to be done with the worst part. Did you lose your hair? Don’t answer if you don’t want too xx

Hi Marie31,

I remember being where you are. But please take comfort that I'm at the other side of treatment now and feeling more like myself again.

I lost my hair after my second cycle of chemo. The day after treatment it came out in clumps. I got my daughter to cut it and shave my head. It was scary but also liberating I was in control. It felt strange at first. My wig is very good. Much the same colour as my hair and same style. People I haven't seen for a while don't realise it's a wig. I've had compliments on how well my hair looks. 

I now have some starting to grow back. It's  a strange experience very slow growing not sure how long it takes for it to grow back. I am so used to my wig now I forget I have it on.

If you do need chemo you will get a token for your wig. I had my wig before my hair fell out. It was good to go see the lady whilst I still had my hair as she made a good match to mine. The wigs are very well done. Not like years ago when you could tell someone had one on.

Good luck  xx

Thank you, hugs to you too.  I have had the tracer and have to be back at the hospital for 1.30 so just for a change I am treating myself to lunch.  They said a report will be prepared tomorrow and sent to my surgeon, the MDT seem to meet on Wednesday so hopefully I will get an appointment on Thursday with some concrete plans.

Hope your call goes well x

I asked the nurse and she said 3 days.  The report will be prepared tomorrow and forwarded to the surgeon,  hopefully it will be reviewed on Wednesday and I will get an appointment on Thursday. 

Enjoy your lunch out! It’s good to make the most of these days! I try to do the same aswel! Hopefully you will hear a plan this week aswel then fingers crossed for you! X

Hi Marie31 

Sorry to hear your news. It’s a huge shock and it will take time to sink in. It might be a comfort to hear that every single feeling and thought you’ve described is the same as what I have been/am going through. I think we have a very similar diagnosis too, though I haven’t been given any info on that PR status of mine, and I do have lymph node involvement.

the middle bit between finding out and getting your treatment scheduled is really tough. But once I had a date for my surgery I felt more upbeat and focussed on getting into prep mode- I got my hair done (unusual for me!), got the house sorted and stocked the freezer. I did find focusing on work really hard and took quite a lot of time off sick even thought physically there was nothing wrong with me. I hope you can find some ways to keep your days calm. I also had days in between where I cried for 20 minutes at a time, but usually a hug and change of focus turned me around. Don’t be afraid to cry though, it’s important to feel all the emotions and let them out. I also went into a deserted woodland and roared at the top of my lungs to let some emotions out.

I’m not just saying this, but mastectomy surgery hasn’t been ad traumatic as I imagined. I’m now 6 days post surgery and haven’t had anything other than ibuprofen and paracetamol since I left hospital! My armpit feels stiff but other than that it’s ok. 
now I’m waiting for surgery results. Every milestone brings another period of waiting and anticipation for the next steps, but week by week I am trying to get better at all of that (with tantrums and outbursts in between!) 

Hope things progress in the coming days with regards to a treatment plan. Please feel free to reach out with any questions, as it looks like I’m about a month ‘ahead’ of you.

x

Thanks Daisy. I’ve got the same thing with the lung nodules. It’s a comfort to hear others have heard the same lack of concern from their professional team. Pushing to have my second CT and get results before Xmas so I can hopefully relax a bit more. Can I ask how many CTs you have had to check on the nodules? And did you have an initial Pet?

Wow thank you so much for reaching out it’s so good to speak to others in simular situations, I’m glad to hear that you have had your mastectomy and it was as bad as you imagined it to be that’s the kind of chat I need to hear right now. Is this your first bit of treatment then? Have they said what’s likely to follow? I’ve got a call this afternoon and I’m not going to lie my brain is doing overtime. I’m going into work to try and take my mind off it not sure if that’s a good thing or bad thing. I’ve had a few days off sick so far like you said it’s strange because you are physically fit for work but mentally it’s hard to talk to anyone without crying some days! I will definitely keep in touch and hope to hear your progress! I will update you with what my call brings later on! 
thanks again for sharing it really does help a lot x

Yes, because my cancer is ER.+ and HER- surgery was first. Next up chemo but they haven’t told me what or when.

i hope you get some more info on your call. Write a list of questions you have and work through it if helpful. It’s easy to forget to ask for more info when you are trying to take it all in, and I’ve found my surgeon doesn’t tell me much than the bare essentials, when I usually want to know as much as poss.

x

Hi LottieWat, since my initial scan which detected the lung nodules, I have had 3 more. The last one was only yesterday, but first two showed no changes. I have found that results for these subsequent scans have taken a few weeks and I've had to chase the results. Hope everything is going well for you at the moment. Xx