Hello there

I had grade 2 ER+ HER2- multi focal ILC (6.5cm), no lymph nodes, and had mastectomy and Diep reconstruction in 2023 aged 50. Borderline for chemo, but lowish oncotype meant no chemo and 5 years letrozole. I personally think a cancer diagnosis is a cancer diagnosis and equally scary and relatable. I was in hospital with a lady who had a mastectomy and reconstruction for DCIS and we’ve been a huge support to eachother since. We all fear recurrence, and all suffer side effects from ongoing treatment, and mourn the loss of our breasts. I’m grateful not to have had chemo, but I support friends who’ve had it, and they support me too - we feel that we’re all in it together.  Hopefully someone who’s been through as much as you will understand more where you’re at, but please don’t assume those with a ‘lesser’ diagnosis are not cancer survivors and don’t get where you’re at. Are your friends not supportive? 

Hi Dotty73

Thanks for your message.  I’m sorry that my message may have been misunderstood… I wasn’t talking about the fear of reoccurrence or how hard that is when I referred to my friends.  I was referring to managing treatment at the moment.  I get a lot of “well you look great” and not understanding of how hard treatment I’m finding it yo go through this treatment.  I get a lot of “you look normal so should be back to normal by now” which isn’t helping me at all.  Even my husband has said that I should just push through and get back to doing everything normally now.  I’m at the point of wanting to walk out on my marriage and everyone I know, and I feel that this forum probably isn’t going to be for me either. 

I genuinely hope you do well, but I won’t be back again. 

“I get a lot of “well you look great””
I really understand what you mean. I decided to tell very few people when I was diagnosed 18 months ago. Since then I’ve told a few more but without detail. 

One wanted every bit of detail so “I can advise you”. She’s not a doctor but is a big fan of Dr Google. I refused to tell her any more than the basics and made it clear I wanted no more discussion. 

Another looked me up and down saying “you don’t look any different”. The tone of voice sounded quite critical. 

Luckily my partner is very supportive as are my core friends who know when all I want to do is talk about cat videos. 

Do stick with us here. We’re all different and we’re all the same. Good luck. 

Dear Frannier ,

just wanted to say how sorry I am to hear that you feel this way . Getting cancer is something very personal to each individual and those who haven’t experienced it really can’t possibly understand . 
My own cancer was not complicated and so far I hope I’ll be lucky . But emotionally , physically and psychologically I was a wreck  and am only just pulling out of that state two years later .

you have the right to react and deal with it in your own way . Don’t take any notice of peoples own comments or judgement - sometimes people say things to protect their own emotions  - we’re all human .

the main thing  is to look after yourself . Don’t try to push yourself if you’re not ready- gradually you will recover and find your old self again , maybe your new self ? 
be kind to yourself and try to start to do things that you like and spend quiet time with those that you love . Eat as healthily as you can and get out in the fresh air . Some people keep a journal of their feelings , 

remember there are people who understand how alone diagnosis and treatment can be , so reach out when you need to and someone will be there 

Hang on in there - you’re stronger than you think you are . You are lovely person with normal thoughts  and feelings . You will be fine .

sending love and best wishes .

Carole , 72

Dear Frannier.
I absolutely misinterpreted your post and I really do apologise for that. Perhaps I was being defensive after a very tough couple of years. I recently lost my mum to a different type of cancer and I’m very well aware of the horrendous debilitating side effects and aftermath of chemo and targeted treatments…One of my closest friends is a year into abemaciclib for stage 3 breast cancer and I know how awful she feels. My own journey with letrozole has been very difficult, but I do realise that I’m not suffering to the extent that you are. I think what I’m trying to say is, although we have all experienced different treatment plans, we do all understand what it’s like to be all-consumed with the cancer world, and this forum has a wealth of knowledge and experience of all different pathways, so I hope you will find it helpful and you will be able share tips to make you feel better, physically and mentally. Please don’t give up on it because of me!

(By the way, This is my first time on a forum too - didn’t do too well did I)

Take care and sorry again x

Hi Frannier,

I just wanted to send you a quick note ( I hope you see this) and say hello and let you know I know exactly what you mean - I'm 47 have 3 children diagnosed with a large tumour, grade 3, Her2 positive...I've had x 2 surgeries, chemo, herceptin for 1 year (then neratinib for 1 year), zoladex, zometa, Letrozole (on the waiting list for ovaries to be removed) and also have a couple of friends that have had breast cancer but a lower grade, small tumour.. and their treatment has been very different to mine, a much shorter, less intrusive treatment journey that hasn't had the same impact on their lives even in terms of time out of career, of course any sort of cancer diagnosis comes with all the mental trauma and horribleness and coming to terms with surgery etc...nobody is taking that away but it's a different journey! Saying this my friends are all incredibly supportive just not going through the same as me.

I hope you are OK. Here to chat my lovely. X

Hi Dotty73 I think you did great for your first time on the forum.  Cancer no matter what grade, stage or treatments is cancer and is a horrible journey to be on.  As you say it is all consuming for you and your family.  I hope you stay on the forum as you sound like you have a wealth of experience and knowledge to share.  You sharing your journey can definately help and encourage others on the journey too.  I have stage 4 incurable cancer and this and other forums help me immensely.   So take care and good luck on your journey.

Lee x

Thank you Lee, that’s really kind.

I’m glad you find the forums helpful- you certainly sound like a very positive person, especially given your circumstances, and that can only be a lovely influence on people who are struggling.

You take care too xx

Hi Frannier,

1. I know exactly how you feel. I was a grade 3, 25mm ER8 PR5 breast cancer with 2 lymph node’s affected and I’ve still 5 months of Abemaciclib left to take. My treatment journey has been very similar to yours but I received docataxel and I have my 5th zometa infusion this week.
   My perception is that friends and family have become bored with my treatment and have lost empathy. However I’m also finding trying to live a normal life very difficult. I’m still on 150mgs of Abemaciclib and finding the episodes of diarrhoea very challenging. So far I have not had an accident in public but I’ve had so many close calls my anxiety has increased. My stamina has reduced dramatically. Sometimes walking up a hill is like cycling with your breaks on.
   Unfortunately I also developed thyroid problems due to a developing thyroiditis following a virus last August. I probably contracted the virus due to a suppressed immune system caused by Abemaciclib. I didn’t feel well but no one appeared to listen. I was made to feel I was being paranoid. I could hardly walk up the stairs and had to lie down and recover after a shower. Routine bloods by my Gp discovered the problem and since then I have also been receiving treatment for firstly an overactive thyroid gland and now an underactive thyroid gland. 
   Sorry for winging when you asked for support but I guess we have been through a tough 3 years of cancer treatment by the time we finish Abemaciclib. I am on Letrozole for 10 years but fortunately I have managed this drug well. I am counting down the weeks until I complete Abemaciclib and I’ve worked out if I have no more breaks I should take my last tablet on 27th October . You are also in the last few months of taking this medication and I think we are two survivors.  

Hi Dotty73,

I am going through a similar experience. I’ve been diagnosed with ER+ HER2 - grade 2 ILC about 6.8 cm in size, with no signs of lymph node involvement so far. My surgeon has said that I may need radiotherapy, but that decision will depend on the results after my mastectomy. They’re planning to remove 2 or 3 lymph nodes during the surgery to check them.

I’m feeling quite uncertain right now, especially because I’m also planning to have immediate reconstruction with implants. I’m worried about how radiotherapy might affect the reconstruction afterward, particularly in terms of shrinkage or changes in appearance.

It’s reassuring to hear that you were able to avoid radiotherapy and are doing well.