Hey @naughty_boob thanks for checking in with us! I finished radiotherapy at the end of Jan - found it okay, much better than chemo. I’ve been on exemestane and Zoladex since Jan and am navigating the achey joints/hot flushes, but finding that exercise really helps both. I went on holiday to Croatia and then Slovenia two weeks ago and it was a well needed break that made me remember how big the world is again. I haven’t heard when my next scan will be (I have been told I’ll be having yearly breast MRIs for 5 years due to my age/dense breasts). I may chase this up, now you’ve mentioned it. I really enjoy hearing how you are all getting on, so please stay in touch xx
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Hi @Florence_87
So lovely to hear from you.
Yes it’s definitely journey and like you the 3 weekly Herceptin knock you back a bit for a few days. Again like you one day I’m fine the next day I’m really down. I find I’m crying whenever I mention my diagnosis or treatment.
Even this week a lovely nurse came to my home (NHS outsourced to private company, apparently it’s cheaper!) to give me my 11th Herceptin and we were talking about bruising, bleeding and fracture risk after the dog ran into my leg and ended up at minor injuries. He said ‘well you’re cancer free so your risk is not different to anyone else’. This comment knocked me, I know the cancer was removed during my surgery in July and chemo, radio etc is adjuvant (preventative) treatment. But it doesn’t feel ‘cancer free’. Maybe because I’ve just gone past a year of finding the lump and approaching a year since diagnosis next month.
I had some counselling but didn’t really gel with the lady and she mainly signposted me to things I already knew. We did resolve an issue I had with an absent friend during treatment and encouraged me to contact her, unfortunately the response was the so called friend was to blame me for not keeping in contact with her! I’m now waiting for some counselling with www.pennybrohn.org.uk
What is the 4 week course you mentioned? I have applied for the Moving Forward course in July in my local area, it was quite hard to find a date around continuing treatment.
Take care🥰
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Hi @Jess_1
Lovely to hear from you. Croatia and Slovenia sound lovely. The hot flushes and achy joints must be so hard with you being so young compared to me. I’m 55 and was already menopausal before BC.
Did you manage to arrange something special for your belated 30th birthday?
I hope you hear about your scan soon. Dr Liz O’Riordan has a YouTube and Podcast and talks about ‘scanxiety’. It’s nice to know we will be checked but when the scan comes around I’m sure all the old feelings will resurface until we get the all clear.
I’m waiting for genetics to come back, fingers crossed it will be negative. My daughter is 26 and she will already receive mammograms from 40 not 50 because of my bilateral diagnosis and if genetics is positive it will be MRI from 30 and mammogram from 35.
Take care. 
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Hello 
same boat
High onco type score 47
Suggesting chemo
So upset 
What was your number
How was the tc
How did hair do???
So lovely to hear from our group. We are all coming up to that year milestone. @Jess_1 @Florence_87
I often wonder how you are all doing and so pleased to hear of holidays, parties etc. a bit of normal life.
I think we have all discovered that life is uncertain and some of us (not me!!) far too young to be in this position. The fact we’ve all come through some tough treatments is incredible. Last week I went into the Marsden for bloods and realised that I no longer felt I belonged there as I did through my treatment. My world was outside their door. So maybe that is the start of a mindset shift.
A long way to go but small steps are amazing so we must never forget the progress we’ve made. Thanks to science - and our group!
We should celebrate our June 1st anniversary!
Xxx
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Hi all
BCN are running a forum users survey, if you have the time here’s the link
Take care
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Thank you @naughty_boob for checking on us. My mammogram is booked for June. I’ve been working full time since January and it seems I don’t have time for much more as I still get fatigued. After 8 PM that’s it 
Treatment ended in October but I continue with Tamoxifen. I had a bit of a scare as I had ongoing rib and hip pain but my bone scan came clear. Maybe it’s the Tamoxifen, age or hormones…To be honest I’m a bit stressed about this mammogram because my tumour was only seen after ultrasound, not in the mammogram. I wanted to have a scan or MRI but I hate to have to ask…I really need to push myself to advocate for own health and I hate it. On a positive note I started weight lifting and jogging and I feel stronger. I hope all the ladies here are doing well and thriving 
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I’ve got the same issue with my hair… I managed to keep most of it but now I’ve got these new, really curly ones sticking out on the top of my head and sideburns (I guess on the places the cap didn’t touch)
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Good to hear from you @rachel60. I felt the same way when I went to the Royal Marsden for my bone scan. Sad to see it was full…so many people at different stages of this journey
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Hi @Guida
So lovely to hear from you. I can imagine the upcoming mammogram is scary. I’m going to feel the same come July😌 My second tumour was only found with MRI, so at a recent chat with the breast care nurse I asked if I would have an MRI as well as mammogram in future checks. She said no and tried to justify it by saying the radiographers would have looked back at the ‘clear’ mammogram and compared to the MRI to look for the tumour and why it was missed. I’m not totally convinced but at least I’m having checks annually.
You are doing great back working, don’t forget your employer should make reasonable adjustments for you, if required, as you are classed as disabled under the Equality Act 2010. It can mean starting or finishing earlier or having more breaks etc. it may help with the fatigue.
Glad you had a check from your pain and it was all clear 
.
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Hello! How are you all? Hoping some “normal” life.
I’ve got my first mammogram next Wednesday. I get the results same day when I see my surgeon.
Yikes. Has anyone been through this?
Xxxx
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Good luck @rachel60. Sending you good vibes♥️ So good to have the results straight away. Less scanxiety…nobody likes the wait. Mine is only in June.
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Thanks Guida. Keeping everything crossed for all of us x
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So good you get the results the same day. I have to wait until July and not sure how it happens in my health board. I will be hoping for same day to prevent anxiety.
The breast care nurse recently said not to worry if you get a call back scan as they have to navigate scar tissue after surgery and can’t compare with the pre surgery scans. Not going to stop me worrying if they do😌
I’ve gone back to helping at the local Foodbank, I do most weeks on a Wednesday morning. It’s nice to have some sort of normality. Some things I can’t do due to sore chest wall, waiting on a few referrals for menopause, lymphoedema and physio.
Otherwise enjoying the warmer sunny weather, with lots of SPF, long may it continue.
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Hello everyone,
I thought I will peek my head in and say hello and I hope you are all doing well?
I am doing really well - more than half way on my Herceptin now scheduled to finish mid September. Finally had my echocardiogram @naughty_boob and all is well.
I have also arranged myself a DEXA scan for June just to check what state my bones are in post chemo/radio etc.
I am running the CRUK race for life in July!!
My mammo is in November 
@rachel60 good luck with yours.
I am approaching Diagnosis day anniversary May 17th! All still very surreal.
Some days I feel in a limbo and think am I moving on?? Do I know how to?
Am I anxious of recurrence? Then I do a pep talk to myself….
What a journey it has been!!!
Sending you all love, peaceful and healing thoughts - stay well xxxx
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Hi @Dhillman
Great news about the Echocardiogram.
I am also approaching diagnosis day 15 May…trying to do something nice to change the narrative of the day. Unfortunately never will forget as it’s my wedding anniversary the following day.
I’ve done 12 out of 18 Herceptin, which is 2/3 done. It’s great to know I have less left than I’ve had.
I have booked for a BCN Moving Forward course early July, only one I could get face to face around Herceptin dates. I’m hoping it will answer some questions. I still feel I’m in treatment due to side effects I’m still having and that limit what I can do. But I’m also so much better than during chemo. So I suppose I’m also in limbo.
Have booked some more counselling as still not sure how I’m dealing with everything and possibly of it coming back.
Hope everyone is well as can be
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So good to hear everyone is somehow getting through these bumpy times for us.
I got my mammogram today. It was painless and the person doing it was so lovely. 30 minutes later which seemed like 3 hours, my consultant got the mammogram up on the screen (with the original one a year ago showing a large white cancer area). No cancer seen today.
I felt weirdly numb. Everyone was really excited but I just said oh that’s good. Is that odd? It just seems still such a long way to go.
Anyway, it was good news. I see my surgeon in 6 months for an ultrasound and my next mammogram is in one year. Anything in between which worries me, let them know!
Really now keeping everything crossed for your mammograms coming up.
Xxx
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@rachel60 really pleased to hear your very good news. I know what you mean, I would feel the same ‘oh good no cancer, but ….
@naughty_boob what kind of side effects are you still experiencing?
I am glad you have joined the moving forward course and having counselling. I should consider something I suppose just so I don’t feel too much in limbo or projecting for the future.
I have some pins and needles but they are improving, lump from scar on my lumpectomy site is now hard. Very hard to know whether it’s normal (I think it is) or should I be concerned.
The best we can do is keep doing our best at looking after ourselves. This keeps us fit for another fight, should that ever (please no) recur. There are no guarantees.
The feelings of vulnerability is real.
Take care and stay well xx
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Hi @Dhillman
I’m hoping the course and counselling will help. The breast care nurse called me yesterday and I was in tears again. Saw a Physio today and tears again when having to talk diagnosis and treatment. The Breast care nurse had referred me and would have explained my situation but they still ask you to go over it again.
I have chest wall and armpit pain with swelling of both breasts and under armpit/bra side. I have been doing my post surgery exercises since July, maybe not every day but when I think about it. I tried some light weights, yoga and Pilates and the pain got worse. Holding my arms to the side or stretching above my head is painful.
Physio today agreed there was chest wall and armpit pain and to continue most exercises but with movement and not to hold. She also found out I have a nerve issue on both sides. She held my arm at the elbow and tried to bend the forearm backwards with the wrist bend. It wouldn’t move on both sides. So now I have nerve flossing exercises to do to release them. She thinks the nerve issue is from chemotherapy and the swelling is radiotherapy.
Paclitaxel is known to cause nerve issues in the form of peripheral neuropathy and it would have been helpful to be given more information to help or prevent, rather than waiting until it happens and then trying to fix it.
Everybody keeps saying it’s unusual to be both sides but its also unusual to have two primary bc at the same time!
I also have lots of aches and pains especially if I sit still for a long time or get up in the morning. Movement helps. Hot flushes are a nightmare, last night I was woken 4 times, one time I couldn’t disperse the heat and was awake for over an hour. It could be the Herceptin or Letrozole. I have 4 months of Herceptin so hopefully will know what is causing it into October. I was offered some anti depressants that help with hot flushes but there are contraindications with other medication I take. I’m not sure I want to pop yet another pill. I am thinking of getting a new bed with natural fibres to replace the memory foam topped bed we have now. I swear it hold the heat. I have cotton bedding as well. I tried bamboo but it retains the heat.
Love to you all
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