Hi folks, sorry 1st time posting & today feeling abit lost.
I had my 1st operation on 7th feb to remove a stage 1, grade 3, hormone positive, her2 negative, NST cancer in my right breast along with 2 nodes. I went back on tuesday to see the surgeon & was told I didn’t have clear margins (I was NOT expecting this) but nodes are thankfully fine, I have also been told they have sent a sample of my cancer away to get an oncotype test done as the doctors have no idea if I will need chemo or not, I turned 45 on the day off my 1st operation. I know I will be getting 7 sessions of radiotherapy along with hormone tablets for 10 years.
Yesterday I had my 2nd operation to get these margins clear & today I feel so much sorer than my 1st operation & I also feel like am now in a “bubble” as I’ve got another 3 wks wait to confirm if these are clear & if chemo is needed - am I expecting too much from myself just now ? Has anyone else had a similar situation ? Family & friends have been great, but sometimes I feel that they just dont fully “get it” I know my body’s been through so much these past few weeks so any advice is appreciated
Hi.
Please allow me to send you a big hug.
I too have the feeling that my loved ones “don’t get it”, they want me to be always positive, which I can’t.
The waiting part is the worst, you will read this many, many time on this forum. There are threads with ideas here on how to cope with it and explaining that is is best not to Dr. Google anything.
For me, being around here was the biggest help, there is support, understanding and love.
My tumor was also hormone positive, her2 negative and grade 3, I was 48y.o. Oncotype came back at 16 so chemo benefit was less than 1%. Finished radiotherapy one month ago and about two months into tamoxifen.
It was also recommended here the Dr. Liz O’riordan podcast and YouTube channel. I find everything she says to help when calm is needed.
Thank you for this I will look her up & have a listen/watch.
Tamoxifen sounds familiar, am sure that’s what the doctors want me to be put on. How did you find radiotherapy & how are you on tamoxifen? This is all still so new for me & some days I find are better than others especially today, but I know its cause I’ve still got operation drugs in my system.
Thank you, you too - am going to have a better look on the forums to get more advise from people who have been/are going through similar journeys xx
Hi again.
Tamoxifen seems to be the usual prescription for premenopausal with hormonal BC. I read here that there is also an option of an injection to “turn off” ovaries and being prescribed Ai (aromatase inhibitor), I was not offered this as my Dr. says at my age (currently 49) it is pretty possible to be menopausal soon.
So far all OK with no SE, hoping it continues this way.
Radiotherapy was doable, had the 5 sessions plan booster in tumor bed included.
I was back home tired every day and slept a lot, one week after treatment I was back to normal.
Started to moisturize the area 10 days in advance of first session and was told to continue for one year at least. After first week SE started, slightly swollen breast, pinky skin and brownish nipple. I kept moisturizing the area ad using a hyaluronic acid cream on nipple. One month later everything is good, breast just with a little oedema that is fading slowly.
It’s been three months since op and armpit cording is nearly gone (I can feel it but it is not noticeable anymore).
My under arm continues to feel numb and very often I feel what I call “the newspaper”, as it feels like carrying a rolled newspapers tucked under my arm. Dr. said this is nothing to worry about.
The emotional side seems to take some extra time, I am working on giving myself this time and being kind to myself.
Xx
What make of moisturiser did you use ? Ive had a gift & got moogoo recovery which is supossed to be good for both radiotherapy & chemo.
Glad to hear things have settled down for you. Ive got the numbness from half way up my tricep & under my armpit but thankfully no cording & have been told this could last for several months.
I think the emotional side will be the worst bit, please be kind to yourself, you have been through alot as well. Ive just had a message from a friend who has also walked this journey & she totally advises to go to the 6 week courses that are run by breast cancer now, she says they have helped her massively & cover different topics each week, she had bc 5yrs ago & is my inspiration that things will get better.
Why not buy a few little things like face masks, nail polish, etc & put these in a bag & on off days pull 1 out & pamper yourself? Just a little idea which may help xx
Oh that is a very good advice from your friend, I am doing counseling too.
Also happy to know that she is doing well after five year.
The little things to pamper myself seem something that would cheer me up, thank you! . Except from moisturiser I don’t think I took care of my appearance at all these past months.
I use Avéne XeraCalm cream which also helps with my atopic dermatitis.
I will take on your advise & start doing more moisturising now in advance of treatment.
I know right, am so pleased for her & she’s messaged and boosted me up yesterday as well, she’s definitely a keeper.
Today am really sore & waiting on pain meds to kick in, however I have literally slept 11.5 hours last night & missed my 1st set of meds, but I also had an additional 5 hours (in total) snooze on the sofa yesterday I know sleep is good for you but am honestly snoozing majority of the day just now.
I hope you get yourself a lovely pick you up selection & start picking an item today let me know how you get on xx
Hi there! This is my first time posting but I so wanted to reply to you. Ive just returned from the meeting with surgeon after lumpectomy and aux lymph node biopsies in late Jan- same diagnosis as you, 42 in January (what a birthday!).
It was the weirdest experience. He told me the tumour was removed and graded from grade 2 to grade 3 and that they didn’t get clear margins so im waiting for another op. He also mentioned the Oncotype being done alongside this but that I wouldnt know results of that until after my second op when he’d hopefully tell me. He nearly forgot to tell me and then said ‘oh yes, the lab put a little note here, so you might need chemo’.
I’ve spent all Christmas waiting for information and was pushing myself to be hopeful it would be the first course of treatment he’d planned - lumpectomy then 5 days radiotherapy and tamoxifen - and now suddenly I feel terrible. I cried the moment I left and my darling husband was furious - “it hasnt spread, theyve got it out they are just tidying up precancer not actually cancer anymore, why are you sad?”… I dont really know! Because everything has changed. I’m off work after the first operation I’ve had in my life, I faked it through Christmas and it exhausted me, my 9 year old is kind of ignoring me since I told her (I think a coping mechanism but she’s gone very ‘hard’ towards me). Its like life has just gone insane and then although it hasn’t spread, suddenly its not quite as lucky as it first felt when I didnt need a mastectomy or chemo. Now everything seems like a potential again.
It really helped to see youre post second surgery and that things can just get rough at times. I hope you are feeling better as each day goes by xx
I can definitely confirm things do get better, however my treatment plan did change again.
The clear margins they removed had a grade 2 literally 1mm away from the margins from my 2nd op, so I had to had to go back in for a third op which was all clear, I also on the same day got the news that my 1st tumour was an aggressive wee bugger & would respond really well to chemo (which I scored high in) so in April last year I started EC-T chemo every 2 weeks for 8 sessions, I felt abit grim but I was still able to do things about the house or go for small walks, I did end up with a picc line half way through as my veins didnt like chemo but this made things so much easier, I also cold capped & kept some hair (am now rocking a mullet with chemo curls on top) I then moved onto 9 sessions of radio which I was fine with. I had been off work since my 1st op & only went back in nov on a phased return, 2 days at 5hrs, am now up at 3 days. Just be kind to yourself, rest when you need to, but honestly things do get better. Am now a year on from 1st op & back being me again (I was at Stobo spa in Peebles this week with my bestie) & been given the all clear, it just takes time, but you will get there. Message anytime, I will gladly be in your cheer squad - honestly you have got this & are stronger than you think xx
Wow! What a ride youve been on. You’re such an inspiration. Thank you for replying even though you are so many steps ahead, it means so much to know it can be done, even if the journey takes a bit of a wander through the trees, down into the dark places before coming back out again. Thank you so so much xx
& she’s messaged and boosted me up yesterday as well, she’s definitely a keeper.
I know sleep is good for you but am honestly snoozing majority of the day just now.