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.
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
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
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
@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.
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
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.
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.
Thank you all so much, this is reassuring .
Hi @sunflower9
It is a pleasure…just excuse my maths 
, I blame it on chemo….more like 11 weeks between treatments!
Did you get your donut @salbert ? I just had my latest heart echo last night so it seems we’re almost on the same schedule there 
I asked the lady doing it what my EF was last time and she said 68 and it looks similar this time around so I’m pleased with that.
Finally testing negative for COVID so I’m feeling a bit better here. Going for my blood test for round 8 later today so we’ll see if I’m able to have treatment this week or if we need to delay further. One of my friends just booked her flight over to visit at the start of August so I really want to be done by then and able to enjoy her visit… currently scheduled for my last treatment 17/7 so hopefully no more delays… 
My nails are getting more and more shit. I unbuckled my seat belt last night and ripped the top of my thumb nail. 
Roll on July!
@carrie. Your plan is more or less the same as me. I was put on Letrozole not anastrozole, but I’m changing to Exemestane this week, as soon as the postman delivers my prescription.
@woody2 What you are going through is super-anxiety inducing. Some of the things I have previously stressed about pale in comparison. So it’s normal to feel like you do right now and we’ve all been there. It’s so hard to know that your family are having to go through it too. It’s why I feel so strongly about us all being here to support each other through these times. Just letting it out and knowing that others truly empathise and understand goes a long way. Definitely check out your Maggie’s and take the counselling if you can. I did 12 sessions and it really helped. When I was waiting for results I was so anxious I had to walk out of my office and call up and book it just to feel I was doing something to help myself. I was given some good coping tools that I’ve been able to put to good use.
Hey @carrie - Good to know that your new hospital means so much less travel time. That will make a difference. I’m also relieved for you that you don’t need to have the EC!! You certainly sound like you do your homework so it all sounds good. 12 Paclitaxels means you won’t get so large a dose as the people who have the same amount over less sessions. It’s steadier and you don’t get such ups and downs, or so I was told. I hope that makes sense. Great that you have a plan and are going to get started so soon. Getting out there walking in nature is one of the best things you can do. I was told to try to take a walk every day, even if you don’t feel so good and it will make you feel better. I didn’t manage every day (some days are just sofa days and it’s as simple as that) but I did manage most days. It was probably the best part of all of last year. Apart from being told they didn’t find any residual disease after my mastectomy.
@sunflower - Good that you feel reassured. You should. 
Stay strong but if you have a wobble, it’s absolutely fine. We’re here.
@kartoffel Hello my friend! I did indeed get my doughnut. It was caramel filled and that is all I need to say on the matter. Your heart echo results sound great. I got told by my cardio-oncologist last night that I can come off Candesartan a week after I finish Phesgo so that is 17th April. Hooray! Foreign travel, here I come!! So glad the Covid has done one and left you alone. Good luck for the blood test so you can get on with treatment. The nail thing is bad, isn’t it. This is why mine are blue gel ones right now.
My good news for today is that due to my proximity to the Godstone sinkhole, my water company have credited me £100 for the loss of service. That was definitely worth a missed shower and a dash to Morrisons for Buxton Spring.
Love to all
Salbert
xx
I’ve concluded that the stress and anxiety is normal for an abnormal situation and that sort of makes it feel like I haven’t got two heads after all! My questions for the oncologist would have been a lot less focussed if I hadn’t been following this thread so I’m incredibly grateful to you all. @naughty_boob I was told either letrozole or anastrazole, they’ll discuss later. Really good knowing others are coming out the other side. I can be fairly sure my dogs will drag me out of bed in a morning and they’re probably a great distraction!
@salbert i spoke to a very nice lady at Maggies this morning. She suggested I drop in and take my husband with me. I think he could do with some support too but is reluctant, she was great with her suggestions of how they could approach helping him as well. I will definitely do the counselling if it’s available. I found CBT very helpful years ago when I got myself in a pickle!
@woody2 Good idea to bring your husband, it can be hard to ask for help as the partner of someone who is going through a major health issue but that doesn’t mean they don’t also need support. My husband had some heart issues (& 4 open heart surgeries) and I put a lot of pressure on myself because I was the one that was physically okay which was not healthy in the long run. Don’t be like me… 
@salbert woohoo for good results, foreign travel and donuts 
Have you booked anything yet? I still want to take a week off in April to go somewhere but I can’t decide. It has to be somewhere dog friendly because we haven’t found a good kennel for the little pickle yet.
@salbert I’m glad the appointment went well and I hope the donut was delicious ! I did laugh about the man who treated himself to a fried breakfast 
it doesn’t count if it’s straight after a hospital appointment!
I can’t wait until I can sleep properly … it’s a form of torture right now … combined with the itching as another lovely new symptom 
@kartoffel Im glad the covid is clearing off , it’s not what you need when having treatment , well any bug tbh. Good news on the heart scan too 
@woody2 The fear of spread or recurrence is normal , once you’ve stared down the barrel of cancer treatment life changes dramatically and it’s perfectly normal to fear having to go through it again or worse . If cancer spreads to the lymph nodes it doesn’t mean it’s more likely to spread . Our lymph nodes are a fantastically designed system , cancer cells in our nodes means the lymphatic system is doing its job. It can be frightening to hear that cancer has been found outside the breast but it doesn’t mean your outcome is worse than someone who has negative lymph nodes . Two of my friends had breast cancer with lots of involved nodes and had full clearance and are still here , twenty and ten years later x I’d recommend the moving forward course . I’ll be doing it myself as I want to be able to enjoy life rather than live in fear . I’ve heard fantastic. Things about the course 🩷
@carrie5 your dogs will definitely give you focus , my friend whose cancer was ten years ago has dogs and said back then her dogs and also dog walking business kept her going (I’ve no idea how she did it! ) but It helps when you have a purpose , something to get up for although do remember you’ll need to rest too and it’s those times when your doggies can look after YOU , snuggling up on the sofa etc . There’s no companion like animals , the unconditional love you get is like no other x
@arty1 Good advice on have a rest sometimes, not something I’m good at but perhaps I can learn! Do hope you get some sleep soon.
At clinic this morning I found out that they’ve just opened a satellite chemo unit so much closer to home and they’re transferring me there for actual Kadcyla days 
so rather than 90- 120 minutes away, it will be just 20 mins. And just 4 chairs so not as busy. My ejection fraction has gone up to 56-60% so don’t need another echo for 3 months. He wasn’t too concerned about the radiation fibrosis, he said he couldn’t feel anything sinister but was impressed I’d got myself an appointment with the radiotherapy late effects team!! So better clinic review than last time. And as ever impressed with my half marathon plus a bit more 
