Sorry about the late reply I am recovering well after my Mx but away from home and was not hooked up to the internet till recently but yes it is nice that someone agrees that it is utterly ridiculous to wait so long for surgery .
Sorry you are having a tough time right now with a lot going on as well but the relief and dread with a date for surgery is something I defiantly resonate with.
I have absolute trust in the theatre team as I have a surgical background so I was not frightened to have an anaesthetic and be put to sleep my fear was having a mastectomy and what that entailed.
My op lasted around 5 hours but I had full axilla clearance too and I woke up comfortable in no pain if that is any reassurance to you.
The theatre team are incredible professionals from the anaesthetist to surgeons and all the theatre staff and you are in incredible hands.
Anyway best wishes for the 23rd September and I hope you get a bit of time to relax before your operation.
Firstly, my dear friend @naughty_boob I am so pleased you have hit another milestone. YOU SLAP THAT BENCH, SISTER!! You have been ahead of me this whole journey and inspire me to keep ploughing on through. Massive well done. I know for a fact that homemade cake is very good for the soul and self-care means cake is essential for general well-being. It would seem you also inspire me to check that I have the ingredients for flapjacks and to put it on my To Do list for today.
@arty1 I’m really glad you have a surgery date. That’s 1 week today so I agree, distraction is key so that it’s here before you know it. Everyone will tell you that a mastectomy sounds worse than it actually is. We all worry and then get through it and wonder why we worried so much. You will be fine. @marionse25 is spot on with what she says. Put me in your other pocket. Better reinforce them as I intend to put ice cream with my flapjacks.
You are dealing with so much at present, so be a bit selfish and look after you.
@helsbels2 Where are you off to on holiday? I keep looking back to see where I was this time last year and as it turns out, it was exactly a year ago that I had discovered a hot, red, hard right boob and had been given antibiotics for breast cancer. You gotta laugh! Thankfully I went back when for some reason, they didn’t work!!
Well done to those of you getting to the end of ypur trestment regimes and good luck to @arty1 for upcoming op, try not to worry! @salbert how about Arundel for a trip? It jas castle, cathedral, some nice antique shops and a few good restaurants/pubs to choose from. Im thinking about Bath for my trip away as havent been there for many years. Last year we had a short break near Stratford on Avon which was good.
Good news from my follow up appointments with surgeon and oncologist. Complete resolution of tumour, three lymph nodes sampled all clear. I can hardly believe it. That six months of chemo was worth it, plus i think a little bit ofluck involved. Going to have five days of radiotherspy in October, then done apart from P hesgo and Zolendronic acid infusions for a while. Phew. Im going to my first social event with more than one person this week, book club - back into the real world. Next week is the MacMillan coffee morning that my friends on our MacMillanfundraising committee take part in, will definitely be supporting. I will have to think of something to raise money for Breast Cancer Now as this has been so much help to me.
Penny
@pennyp THAT IS FABULOUS NEWS!! YOU GO SLAP A BENCH TOO, SISTER!!
I’m going to find one and slap it for you and @naughty_boob on my walk today.
Arundel is a really good idea because my husband and I are always saying that we want to do the castle. But also, Stratford on Avon is a great idea. I was there just over 10 years ago and thinking that I must see it properly. Thanks for those!
I had my radiotherapy planning appointment this morning and it all starts for me on 8th October for 15 sessions. Then I, like you, will just have the Phesgo and zoledronic acid infusions. I agree that I would like to do some fundraising for Breast Cancer Now as it has been absolutely invaluable to me throughout this time. What an incredible charity it is.
Thank you for your message and sharing your experience it helped.
Sorry about the late reply I am recovering with family away from home and just recently hooked up to the internet.
My team were also caring and considerate and I am recovering well.
I agree about the vagueness of Elles story and you’re right it was not clear and I took a look at what Liz O’Riordian said too before the operation.
You definitely were a voice of reason among the last minute doubts and fears upon reading this article on the evening before my operation.
I am sorry to hear you are having problems post op with cording that does sound painful I do hope that you can get help and support from your team.
Good luck today with your pain management team today I hope it all goes well and I hope you get clarity from your team about your results on Thursday too.
I love that you have been adopted by a cat too! What a lovely companion.
Thank you for your message and sorry about the late reply.
I am recovering away from home so was not hooked up to the internet till recently.
I am pleased to say I have had my surgery and it went well and I am recovering quickly too.
Naughty boob you are such a calm, sensible voice in all the noise and chaos around and raise very good points.
It definitely gave me some clarity and perspective as who really has the money to see 30+ doctors and we don’t have the full story as you say and she did have traditional medicine in the form of a lumpectomy as you pointed out and she is promoting her book.
I am glad Liz O’Riordian has been so quick to say she was irresponsible as I must admit I had doubts about surgery after reading Elles holistic approach and could so easily have refused treatment.
We are not all rich as you say to employ all the staff that Elle did that is true but it is great that you have shared some of your strategies that you have used to support traditional medicine rather than replace it and I will be incorporating as many as I can.
I will also look into Penny Brohn philosophies and see if they have an centre nearby and will get the book you mention too.
Hope you are all well. I noticed a few of you are mentioning raising money for BCN. Ive just signed up for their 100 miles walk in October, I did it last October during chemo for CRUK. Not sure how I did it but I did more walking in the first few weeks of chemo and much less towards the end of October. I included walking around the house and going to the loo but this time I’ll do it all outside. Here’s the link if anyone wants to join in.
Congratulations Naughtboob in reaching another milestone in your treatment!
I’m sorry you don’t feel great right now but Im hoping this will soon pass and you can mark the occasion when its right for you.
I still haven’t rang the bell after chemo three months ago as I was too unwell!
You have done incredibly on this journey and do to go through all the treatment whilst still supporting other women in such a warm compassionate and selfless way is remarkable and it hasn’t gone unnoticed that you are one of the first to respond to others including me with some comforting words or advice.
It has been a long journey with decisions around your teaching and redundancy you have shared with us along the way.
However I hope you don’t mind me saying you would make an amazing therapist or counsellor, you absolutely have these skills in abundance if you were thinking of a career change or change of direction……but don’t go anywhere just yet we need you!
@naughty_boob
Oh that sounds so stressful , and what a time to be going through it it’s hard enough dealing with a loved ones death without all the red tape that comes with it … AND a cancer diagnosis … what’s that saying … what doesn’t kill us makes us stronger !
I’m pretty sure we’ve all felt a bit broken during all this crap … but I’m in constant awe of all of you and you’ve no idea how much it buoys me to read all the messages in this forum x
@pennyp that’s wonderful news …treat yourself to a celebratory piece of cake too , you’ve been through a lot and this is wonderful news x
@marionse25 - it’s so daunting isn’t it … I will be terrified on the day … I already am … a week today … Ughh … I’m torn between terror of the surgery and terror of keeping my boob a moment longer … combined with sadness as I was rather fond of my boobs … ah well … thank you for cheering me on. I’m at hospital now for an appointment with my anaesthetist…. ((Wobbles ))
Hi everyone, my name is Valentina and I’m 40 years old… in February 2024 I was diagnosed with very extensive carcinoma in situ with only calcifications, but after mastectomy it turned out to be mainly in situ but with two infiltrating foci of 3 and 8 mm her2+++ and er - pr- ki67 40% grade 3 stage 1b…obviously I’ve already done 12 cycles of taxol and now I’m continuing with herceptin…clean lymph nodes…I’m so worried about not being able to see my daughter grow up and this little shit can show up again. I know that the treatments for her2+++ are fabulous now but it is still an aggressive tumor. Thanks to you who found you by reading everything and more on Google, I now feel a little calmer. how are you?
Firstly I’d like to thank this group, as I’ve learnt so much from so many of you
I was diagnosed with Stage 3, Grade 3, HER2+ breast cancer in May 2023. I have had 4 x EC, 4 x Docetaxel, 4 x Phesgo injections. I’ve also had a mastectomy and 15 rounds of radiotherapy. I’m also on round 9 of 14 Kadcyla and will be having a reconstruction next year.
As you all will know first hand, it’s been and still is, a very hard and long journey.
I’m a yoga teacher in the UK and yoga has been my lifeline!
It has helped me when I’ve been unable to sleep because of steroids or from sheer anxiety.
It has really helped manage my pain, through a restorative practice, breathing techniques and meditation.
My strength, mobility & fitness have been very changeable throughout different parts of my treatment and yoga has enabled me slowly keep bringing it back. My energy levels have also fluctuated dramatically and yoga really helped me with this too.
It has enabled me to stay incredibly positive through this journey and allowed me to feel a sense of control & acceptance.
I have a growing number of students with cancer attending my classes since my diagnosis and I’ve recently attended a training course for Yoga for Cancer.
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Sending you all much love and positivity,
Hayley xx
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Hi @priscilla84 , I’m right at the start of my cancer journey , diagnosis on 7th August and mastectomy next week followed by chemo .
I totally get that fear , I banned myself from googling and have let myself be led by my medical team . I know HER+ is a more aggressive cancer but I’ve been assured by my medical team that targeted therapies are the breakthrough in preventing recurrence and spread and that as far they are concerned , it’s still curative .
The key I think with this is once you have any cancer diagnosis , you learn very much to live in the moment … I try not to think … what if it comes back etc … because as I was told yesterday … we take risks every day just by living … we could step into the road and get hit by a car ! You never know what’s round the corner , my mum has stage 4 non Hodgkin follicular lymphoma and she is … to quote a cliche … living her best life . She told me that she realised that life is definitely for living and this year went to Costa Rica on a dream holiday and she’s just jetted off to Majorca .
It’s easy said than done … but try not to think about what might happen… you dont want to live out however long we are here worrying about it coming back . If it does , you’ll deal with it …
This forum is such a fantastic source of support , I’m learning that life after a cancer diagnosis is never the same , it’s a different way of life and I think we learn to appreciate the little things a lot more x
hello, what beautiful words and how much courage you have given me. It’s really true that life is so unpredictable and anything can happen. I spent my last months worrying about this tumor and the fact that it was her2+++ therefore aggressive with the highest risk of returning and I took so much time away from my daughter because I wasn’t able to control my emotions…now I really want to try to live my life for what it is and only worry about things if they arise…best wishes for everything but I also believe that Herceptin was the turning point for our type of cancer.
You guys, you really are the best, aren’t you. Look at the way you rally round and support each other, even when you are going through it yourselves.
I have to say that I agree with you @chakakhan that @naughty_boob is a natural born counsellor and advisor and I wasn’t remotely surprised when they made her a Community Champion. We are blessed to have you. You help so much. You were one of the first people to reach out to me and you continue to help so many with your good advice and support. You are wonderful.
Hello and welcome @priscilla84 - It’s such a horrid curveball and you are getting one of my big virtual bear hugs right now. I’m so glad you have read a lot of this forum so you can be reassured that Herceptin was a game changer. We are lucky that our breast cancers were found and can be zapped. They are going to be keeping an eye on us going forward. Some days I read something that can strike that fear straight into my heart again and then I go for a walk and listen to some uplifting music and I do what @arty1 does. I live in the moment and do everything not to have those fearful thoughts. Who knows what other people are walking around with. My Google Photos threw up a pic of me yesterday showing me dancing with my friends watching Morcheeba at Margate 1 year ago today and I had no idea I was walking around with breast cancer or what a twist my life was about to take. Your Mum has got it absolutely right @arty1. That really is the way to do it. That’s not to detract in any way from your fears @priscilla84. Of course you are worried and particularly when you have a young daughter. All power to you for making that choice to not let those fears take that precious time away from you both. It proves we can be stronger than our fears.
@haymil Welcome to you too. I’m glad you have joined us. Thank you for letting us know about your yoga. I think yoga can be hugely beneficial and I may switch to it as I have just started Dance Fitness a week ago and realised I wasn’t fit! I have it again tonight so I will see how I go. Brilliant that you are helping people with cancer. Sending you love and positivity back.
Hi @salberto, I’m very pleased to have received your response. I am writing from Italy and here too they have your protocols…I won’t deny that mine has been a very bumpy and difficult path because I had my first paid mammogram (in Italy free screening starts at 45) and I had a little surprise. they told me I was DCIS and therefore I shouldn’t have chemo and instead another surprise. I felt a thousand conflicting emotions, first I didn’t know how to communicate to my daughter that her mother would have to receive an operation immediately and then tell her that her mother had to undergo therapy in which she could lose her hair, eyelashes and eyebrows but the children they are so amazing and she was wonderful at understanding everything. I wore a cooling helmet and only lost 15% of my hair. They also told me that for a few years there has been trastuzumab which is miraculous for her2+++ and therefore having this overexpressed receptor is not a death sentence especially if taken in an initial stage… I too occasionally look at the photos of some time before discovering the tumor and it makes me strange to think that I had a tumor and I didn’t know it… I hope that everything goes well because we are truly a force of nature. One of the last times I went for therapy, a girl who had just been diagnosed with her2+++ looked at me and told me that with this receptor I wouldn’t see my daughter grow up and since then that phrase comes to mind every now and then. I believe in science and I believe that giant strides have been made for breast cancer.
@priscilla84 I have been to Italy twice and I absolutely LOVED it. Well done for taking yourself for a mammogram. I don’t think I would have been so sensible as I was firmly in denial about breast cancer even when they told me I had it! That’s amazing that you kept so much hair and your daughter didn’t have to cope with seeing you change before her eyes. I used the cooling helmet too but I still ended up having to shave my head. My hair is coming back dark and curly now. My eyelashes and eyebrows used to be so blonde you couldn’t see them and now they are growing back dark too. It’s very interesting.
Now…the girl who told you that you wouldn’t see your daughter grow up cannot possibly know that, so should not have said that to you. Perhaps 20 years ago it would have been a lot more worrying, but with our wonder drug, we are curable. Perhaps she was reading outdated information but what you are saying is 100% correct. Giant strides have been made for breast cancer and we are the lucky people who get that drug. I hope that somebody has put her straight as she sounds like she is a scared and worried person who is misinforming other people. She added a whole load of worry and fear to the load you were already carrying. This journey is tough enough without other people making it harder. The fact is that women with HER2+ breast cancer now have among the highest survival rates compared with all women with breast cancer. If you see her again, please make sure you give her the good news that she is wrong.
I love my Italy, there are such beautiful places to see and I am in a very hospitable and joking region of Emilia Romagna. I saw the girl who unfortunately said that ugly sentence to me and she wasn’t exactly lucid and the thing that impressed me the most was that she told me that this information was given to her by the oncologist and for me it was like dying . My oncologist didn’t tell me much except that I have to do this therapy, she didn’t tell me about statistics and so I left with a lot of doubts, only by reading on the internet did I understand that I was dealing with something very aggressive and fast so I fell into total despair again. I don’t know the survival rates, I don’t know what the future holds for me but I have to hope that everything goes well. think that having clean lymph nodes and being a tumor in the early stages they didn’t even do a CT or PET scan and I don’t understand this…
YOU GO SLAP A BENCH TOO, SISTER!!
it’s hard enough dealing with a loved ones death without all the red tape that comes with it … AND a cancer diagnosis … what’s that saying … what doesn’t kill us makes us stronger !
