Well I got a call from the radiotherapy late effects team this afternoon regarding my post radiotherapy fibrosis. I’ve got an appointment in 2 weeks 
The nurse says I’m doing all the right things- stretching, massaging the fibrosed areas and she also suggested some deep breathing. At least I am now in the Musgrove system having had radiotherapy in Reading
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Hi,
I’m feeling better now I know a bit of my plan too.
Pre op this Monday where they are also inserting a micro chip, then a dye injection on Thursday and my surgery Friday.
Busy week next week!
Still very anxious and nervous, also I have never had an operation before so not sure what to expect.
I then will find out my chemo and radiotherapy path once handed over to the oncologist once my surgery complete.
Love and positivity to you all 
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Good news @gromit12 I really wish the late effects radiotherapy was available nationwide. I’m at Velindre in Cardiff with the Welsh NHS and they don’t have the service. Just across the border in Bristol/Gloucestershire they have a self referral system for late effects.
I did ask at Velindre why they didn’t provide the service and they say there is a limited service for those who have had radiotherapy of the stomach and groin area. They just deal with late effects of bowel and bladder issues. I now have help from a cancer physio but it took a lot of asking, having seen a normal physio who didn’t understand cancer treatment.
Hope you get some relief. Radiotherapy seems so easy at the time but it can cause long term side effects. I was once told by a cancer rehabilitation specialist at the Penny Brohn charity, it was the gift that keeps on giving! Any it’s so true.
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@naughty_boob good that you’ve found a cancer physio. I’ve been watching some YouTube videos by a breast physio and have learnt some massage techniques - the nurse yesterday said to carry on doing these and to keep stretching as much as possible. Also to deep belly breathe. She said the service is not commissioned by the NHS but by Macmillan
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Somebody posted a link on another thread to The Breast Cancer Physio, Jen McKenzie, who is based in Australia and I’ve found her very helpful on top on my own cancer physio. So much so that I will be discussing some of the techniques with her.
Here is the link for anyone else that is interested.
Glad your service is funded by MacMillan, I believe my cancer physio is part funded by MacMillan as well.
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Highly recommend Jen McKenzie and the nurse at Musgrove said I was to keep doing her massage techniques till I’m seen
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@jobieejo - I had my last chemo five weeks ago but am still continuing with the herceptin by infusion x I’m so glad you now have a plan in place , it makes such a difference when you feel things are progressing and makes you feel a little more in control. I booked a couple of nights away with my husband before my surgery and I highly recommend it if you can … or treat yourself to a nice meal out x
@erica as above , once you have a plan , it does make a difference when you feel things are happening , once you start on the treatment train it’s all enveloping but you don’t get time to think of much else except getting through the treatment. Treat yourself too before you start it all , I had a lovely night away in a rural shepherds hut and that peace and quiet really helped to mentally prepare me for what was to come x
@salbert I hope the consultant appointment at The RM went well x my friend is an oncology specialist nurse there and raves about it x
I wish they would warn you more about the effects of the chemically induced menopause , my poor family don’t know whether to hug me if run for cover at the moment. Combined with the fact I’m not staying asleep
At night and feel like I’m burning up . I’m a laugh a minute at the moment . At least we are saving on heating bills 
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Hello ladies, I had my surgery on Saturday and it all went ok. However surgeon hit me with there being a greater disease in the axilla, I had known one enlarged positive node. He says there’s lots of fibrosis so we just have to see if there are active cancer cells still lurking. Now back to feeling terrified. Feels like you clear one hurdle and the next psychological hit is waiting for you…. Has anyone else had lots of lymph node involvement? I had already been told I would likely be on to Kadcyla so was expecting that but now feel obsessed with my recurrence prognosis. Any tips on how best to deal with that? Xx
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So glad you are feeling better! I know its still scary just take each day as it comes
Just been catching up on everyones comments and having a read! Hope everyone is okay and had a good weekend.x
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Hi lovely ladies, I have been quiet but keeping up to date with all your journeys and what inspirational women you all are! So I had my lumpectomy and breast reduction surgery nearly 4 weeks ago, with post op appointment 2 weeks after. I was told at that appointment that the margins and 4 SLNB had all come back clear so no more surgery required. However, my grade 3 Her2 tumour was quite sizeable which is concerning and I still haven’t had an appointment through to see the oncologist to discuss the next stages of my treatment. What sort of timeframe following surgery has Chemo started for those that had surgery first? I am really tearful at the minute as convinced it has spread/will reoccur. I am finding it so hard to hold out the positivity when the waiting is so long and stressful, any tips to try cope? Many thanks.
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Hi @sunflower9
I also had surgery before chemo. I was grade 3 and 4.5 cm with clear nodes and margins. The gap between surgery and chemo was around 7 weeks…surgery 23 May and first chemo was 12 August. I had 3 ECand 3 docetaxel.
All the best
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Afternoon all!
LAMDA exams done and yes, I felt exhausted last night but it was the most satisfying tiredness and it felt amazing to be back. Some of the pieces that were performed were selected in the autumn term of 2023 just before my diagnosis so to get to the exams after all this time felt very good indeed.
@jessybessy What exams did you take?
@jobieejo I’m so happy that you are feeling much better. You are on the treadmill now and once you’re moving, it tends to zip past. So both you and @erica have your pre-ops today. I’m happy that it’s all moving for you both. @arty1 has reminded me that I also booked a week in Devon just before I started chemo in February 2024. It’s a really good idea and I valued that break; the calm before the storm perhaps! We did enjoy it because we both knew that the chemo and other treatments had to happen but were in the pipeline which was something of a relief at the time. My unsuccessful surgeries at the previous hospital seemed to go on for such a long time and I was longing to start chemo, so when I switched to Marsden and got given a date immediately it was such a relief that I started to eat and sleep again instantly. I remember my oncologist and consultant actually recommending taking a break while I could. Great advice! And oh Arty, I sympathise with that chemically induced menopause. It was full on, wasn’t it. My night sweats have now completely passed so I pray yours do too.
My Marsden appointment on Friday was just a check-up and I’m told my mammogram and MRI are booked for August which will be a year on from my mastectomy. It’s good to know they are booked. Peace of mind.
@woody2 I have a friend who had 13 cancerous lymph nodes (currently 7 years No Evidence of Disease) and I know of many, many other women who have had a few. I had 2 lymph nodes involved. I think it is important to remember that even if it has reached the lymph nodes, it means they are doing their job and mopping up those cancer cells as they try to break free. You are having chemo, you are possibly having extra chemo in the form of Kadcyla and we have Herceptin, our wonder drug. I have said it many times but it’s always good to say it again and that is that our statistics are EXCELLENT! When I saw my consultant on Friday she told me how to check myself and signs to look for but added ‘Not that we are expecting it to return’ and she touched wood as she said it. This is reassuring in that she doesn’t expect it but can’t guarantee it and that will do for me. Maybe I stick my head in the sand but I don’t think about recurrence and if I do go there, I hastily check myself and remind myself that it’s more likely that it won’t come back.
@sunflower9 I had my first surgery in December 2022, followed by November 2023, December 2023 and January 2024. Still my original consultant could not get clear margins and it was in my lymph nodes. I changed surgeons and hospitals as a result and started chemo on 22nd February 2024 with my mastectomy in August 2024. There was no metastatic spread despite the time spent having all those operations and so many months passing before starting chemo. It’s a worry that we all have but many of us are told it doesn’t move that fast. I hope that is of some comfort to you.
And now I have my cardio-oncologist appointment where I get the results of last week’s ECG. If he tells me it is absolutely fine then I shall celebrate with a doughnut when I go to Dadsit tonight. He used to do something similar every time he got told his cholesterol was ok by going for a full English fried breakfast at the cafe opposite his doctors surgery!
Salbert
x
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Thanks @salbert. I know it’s something I’m going to have to learn to live with. At the moment that seems a long way off…… I manage to park it and then seem to get some more news that elevates my risk and I’m off again. My youngest son was so excited my surgery is done and feels like it’s all fixed and I have to let him as he has been so worried, my husband is in bits and terrified. We seem to take one step forward and two steps back. The physical bit is defo easier than the mental bit. Good to have you ladies there to vent to x
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@sunflower9 great news your margins and nodes were clear. I started chemo about 9 weeks post surgery. I had surgery 5 July 2023 and chemo started 14 September 2023. Between those times, I had to recover, had post op check, then called back to oncology team, arrange a MUGA scan which is a heart scan before Herceptin started with chemo ( some units do an Echo scan, then back to clinic to sign forms, pre chemo bloods then start chemo.
@woody2 so pleased your surgery went well. Be kind to yourself and take to feel. Waiting for your results is always an anxious time even if you alread6 think you’ll probably be on Kadcyla, there are several wonderful ladies on here who have that treatment.
As far as recurrence etc, have you done the Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you. or had counselling, your breast care nurse can arrange or Maggie’s offer it as well.
Hope everyone is ok.
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Thanks, all good tips. I will look at the Moving Forward information and there is a Maggies fairly near me so I will try that too. Will probably go for counselling too. I suffer with anxiety anyway although it has been well under control for years now but it’s got some legs at the moment!!! Xx
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Your welcome. It’s hard isn’t it. I don’t think anyone affected by cancer hasn’t experienced anxiety and/or depression and the diagnosis just amps it up.
There is also a MacMillan HOPE online course which I’m thinking of starting. They used to offer 6 sessions of free counselling and have recently stopped so maybe this has been devised to help more people. If you click on MacMillan in pink it will be a direct link to sign up.
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Hello ladies, I’ve just been catching up. I really feel for everyone on the roller coaster of information - a good bit, dropped back down again and anxious…waiting…definitely sucks.
After my 2 WLE’s elsewhere I got my chemo plan this afternoon from the hospital I’ve been transferred across to. That transfer put in a week’s delay perhaps but it’s worth it. My drive today took 1/3 of the time the previous run was taking and I’m much more confident about actually getting there! Interesting that this team have come up with a slightly different chemo plan to the first one.
12 sessions paclitaxel and trastuzamab, followed by 3 weekly trastuzamab for a year. Later anastrazole and Zolendronic acid, then, radiotherapy.
I asked lots of questions about why the different protocol (No EC in this one) and the Speciality Reg I saw pulled up the research paper and talked me through it. I checked sample size included of people with my tumour size, no lymph node involvement, HER2+ and E+ and it was a decent sized group and the outcome at 3 years was exactly the same as for people who did have the EC in their chemo. The Consultant came in and met me and confirmed what they’d discussed. I’d already googled him to check out his background and he trained at Royal Marsden so I thought that boded ok. ( I leave few stones unturned!) So I’ve done the consent, been told they hope to start in a week and to keep my phone with me for the pre- chemo appointments. A relief to get going after all the waiting, even if I’m not looking forward to it. Have cut out pattern for first head wrap, ordered some beanies and the hideously expensive Polybalm - it had better work! Now writing lists of what to get in place, I’ll need to be resourceful as I live alone. Booked onto hand and Nail Care course.
Now looking for a few relaxing trips to fit in (Crufts yesterday with my dog fun but not relaxing). I know being outdoors in green space and clean air works wonders for me so I’m researching a few more nice walks.
Will be thinking of you all.
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Thank you all so much, this is reassuring .
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Hi @sunflower9
It is a pleasure…just excuse my maths 
, I blame it on chemo….more like 11 weeks between treatments!
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