Hey there Trouble74 ♥️ I replied to you this morning but for some reason it didn’t come through! It’s so so tough and the beginning, and bless you for getting yourself away in holiday whilst all that is going on - you are a very strong woman! It doesn’t seem like it now, but as things sink in it does get slightly easier. I’ve accepted it now and accepted that my life path has changed a bit.
at the time I was confused, angry upset and all those things - telling my daughter was so hard but she’s understood it fully which is great.
I had a real tough time on the Tamoxifen at first! I’m 10 days in now and each day it seems to settle down a bit more - I’m wiped out by the radiotherapy so it will be interesting to see how I am once the RT has finished.
take care and here to chat anytime
Hi, Emily! I was just diagnosed with Stage 1, grade 2 idc, 1.8mm. I’m 47, so a decade ahead of you. My youngest is 18. I received dx on a Monday, saw surgeon for info on Wednesday, then left for family road trip on Thursday. My kids don’t know, yet. I’ve had anxiety the last two days, and been angry. I ran around the hotel for 45 minutes one morning to tamp the feelings down. I really just wanted to run away. My worst fear these last 12 days has been hormone suppression, probably like you. Only it’s worse for you to face menopause at 37! It’s really unfair! I wonder how many additional concerns you have being a special needs parent! I hope this forum helps you feel less alone, as it has for me.
Hey JellyBaby ☺️ Ok so here’s my Tamoxifen update - I spoke to the doctor and they’ve prescribed me 5mg diazepam 3 x per day. It’s helped immensely and my brain has stopped flying at 100 miles per hour which is a huge relief! I will take them all, come off them and then see how I am 👍🏻 Otherwise I’ve told them - I’ve will not take it so they are being very helpful over it.
Radiotherapy is all back to normal - I’ve done 12 sessions now and it’s just started to make me feel really tired (but it’s up and down, it seems to just hit me all at once at times) but apart from that all good. I’m looking after my skin really well and the radiographers are impressed with how it’s looking 👍🏻
mum still has my daughter so that’s brilliant, worried about her coming back but I will definitely reach out to social services if it gets to that point.
Good luck for your radiotherapy on the 4th - you will smash it it’s so quick and then you are out of there ♥️♥️♥️
im glad you you were able to overcome holding your breath im sorry your not doing to well on the tamoxifen
how did you get on talking to your doctor I hope they can help you sort something out and like your mum said try it again once you have finished radiotherapy as that’s what I was advised I have been teary and very emotional lately and that can come out of no where I just think our hormones are all over the place anyway with what we’re currently going through
your going through a lot at the moment and don’t need any added pressure on yourself ❤️
could you apply for help from the government to help you with your daughter
take it easy and be kind to yourself
I start radiotherapy on 4 th august
lots of love xx
Hi JellyBaby, I managed to get over a situation I had the other day with my breath hold - I’ve increased my inhalers and that seems to have done the trick so that’s a big weight off my mind. Normal service there has resumed.
Tamoxifen - basically it’s turned me into an angry teenager. That’s the only way I can describe it. And floods of tears every day too over the slightest of things or over nothing. I’m going to ring the doctors on Monday but to be honest I don’t think I’m going to continue with it - my mental health has been a problem for me for as long as I can remember. At 15 I was put onto antidepressants and they kept me on them for 8 years - that’s not something I want to go back too. I’m sick of being messed around with now and want to finish the radiotherapy and move on from this.
my daughter will have to come back here once my treatment has finished and as a single parent I won’t be able to cope - and because of her Autism she will end up in care. Absolute nightmare. Feeling absolutely rubbish. Mum suggested leaving it and then maybe having another go with it once I’m ready after the radiotherapy has finished.
Have you had a start date for your radiotherapy?
I always keep some on standby as you never know when you will need them I have two daughters 23 & 27 and the youngest one broke her ankle last year so they were so handy.
that’s good I will give Aveeno a go see how I get on, aww bless you ❤️ do you have a USB port in the car if so maybe you could get usb fan I’m sure you can pick one up quiet cheap if you shop around this weather is to much and I haven’t even started the tamoxifen yet 😂 I hope sooo
aww bless them how are they coping in the hot weather my friend has 2 British bull dog puppies she puts a cooling blanket on them they love it ,you must get so hot sharing your bed with them I’m guessing there just protectiong that’s really nice 😊
thank you yes I do have to hold my breath 30 seconds x2 to it’s no annoying all the time your thinking ok I need to breathe know ,
that must make it harder for you ,I hope that today’s Session goes better for you
im praying that your be ok today
sending healing hugs xx
That’s a really good idea about the cooking packs - I actually have some good ones that I used for my knees when they were bad.
yes the Aveeno cream is good - I’ve used it on my skin before and it works well for dryness. Omg absolutely melting doing these car journeys with no air con! I think the weather is going cooler soon though 👍🏻👍🏻
I have 2 dogs and they sleep in bed with me - it’s those little buggers waking me up at times too I’m not sure why though 😂 sometimes the little one is just standing over me 🤣
glad your planning scan went well - do you have to hold your breath for your radiotherapy? I have asthma and have to hold my breath for 30 seconds x 2 for my session. It was a problem yesterday as the hot weather is giving me a tight chest. I’ve put my inhaler doses up and I’m praying it doesn’t happen again today! Xx
Thank you so much ❤️
CT went ok but the lady doing my tattoos had to do it twice on my left boob I didn't mind as I couldn't feel the area she done 😊
And with everything going on it's good your staying home and staying safe apart from your hospital appointments ,
I'm doing the same to be honest
I'm sorry that your still in pain and sore from radiotherapy have you tried using cooling packs as a short term use
That must be so uncomfortable
How are you finding the aveeno cream as I did as the Radiotherapy lady she said what ever suits you
Hope your taking it easy and staying cool with this current temperature
Oh I haven't herd of them aww bless you I will have a look online thank you
Try and have enough pillows around you that may help you sleep I got a long pillow it's really comfortable but there are the v shaped ones too
Take care xx
Good luck with your planning scan today JellyBaby 🌟💫 I’ll be thinking of you ❤️ No I’m not allowed to have the second vaccine, and I have asthma so that’s a bit of a worry in itself. Apart from going to the hospital I’m not going anywhere else at all.
The radiotherapy is still going ok 👍🏻 my boob is pretty sore but it was before so it’s increased the pain a bit. I have to be a bit careful how I lie at night. I’m using the Aveeno cream at least 2 x per day as I have very sun damaged sensitised skin so I’m keeping a really close eye on it.
Also I’m wearing one of those factor 50 tshirts (it’s making me really hot but worth it to know the sun can’t get through). It’s a Roxy one.
It's funny you mention about water retention I think I have it back but can't seem to get a gp appointment I will try again tomorrow
I try n drink up to 2 litres of water daily , maybe I should try raising my legs ,my ankles and legs have been swollen over the weekend and been quiet painful band really tight does that mean you won't have the second jab because the effect of the first one
The pain in my arm and breast hurts more at night is this normal
I'm glad the coil is working well for you ❤️
That's good plus using a hot water bottle is a good comfort too I use mine daily with my under arm/ and arm pain x
I'm glad your first radiotherapy session went really well
Thank for letting me know how you got on I really appreciate it ❤️❤️❤️
I'm sorry that you have such a trek to the hospital and back
Thank you so much for the reasurance my appointment is tomorrow for my planning scan
I will definitely ask you if I have any questions thanks
Lot of love xx
Our stories are really similar ❤️ I have problems with fluid retention too and I drink lots of water to stop myself being dehydrated, that helps ☺️ Also, lying down with legs raised.
Yes I had the Astrazenica as well - I’ve only had one dose as they won’t let me have another one as it caused lymphodema. I’m still very tender even after 10 weeks and I think that’s normal too. Yes I have the copper coil without hormones and I’ve had it in for 3 years so that’s good! Yes I use a hot water bottle every day - I will be doing even more so with travelling to the hospital every day.
my first radiotherapy session went really well - once you’ve had your planning scan under the CT machine…the actual radiotherapy session is shorter and easier than the planning scan.
I was in and out quite quickly so please don’t worry about it, you will be absolutely fine ❤️❤️❤️ It’s an 80 mile round trip for me and I’m driving myself there 👍🏻👍🏻👍🏻 So as you can imagine I was totally fine ❤️ Did you say you’ve had your planning scan? If you have any questions about it please
It is strange how much our stories are so similar I was worried it could be lymphoedema but my ankle swell at times too I was given pain killers and told to rest
I had only 1 physiotherapy appointment for my arm and was told were referr you back to your GP as physio isn't working
That's why you had asked me about the jab ? I had to have both jabs in my right arm I was ok after both jabs I had the astra zenika
I had the sentinel node biopsy during surgery too
It's been nearly 5 weeks since I had surgery I thought the blue would have disappeared by know I was thinking am I washing properly as that area is so tender anyway but know I know it will stay like that for a while it's not so bad
Is that the only coil that doesn't release hormones ?
I will pray that your periods will be ok ❤️
I'm sorry to hear that I fully understand why you haven't I did manage without meds for quite a while and managed it myself a hot water bottle is a great help to me have you tried using one ?
Wishing you the best of luck today
Yes please let me know how you get on
Thank you for putting my mind a ease
Take care sending hugs xx
im sorry to hear you are having a bad time during the night, broken sleep is the last thing you need at the moment!
my mum was on HRT (she’s stopped it since my cancer) and she had so many benefits from it. Also my dr (who has had exactly the same cancer as me) had had a hard time going onto a drug similar to Tamoxifen and coming off HRT - I think that’s a bit of a double whammy you’ve got there.
i have no idea how my body will react so I’m keeping my fingers crossed - I do know at ER+ 7 it’s very important for me to get going with it.
I don’t sleep too well at the moment anyway, and I do go back to sleep in the afternoons most days
thinking of you
It’s funny you should say that you’ve had swelling of the arm - I’ve got lymphadenitis and lymphoedema in my left arm…not because of the cancer but because of the vaccine (well I don’t think it was because of the cancer but our stories are very similar!) I’ve only had my first jab - they won’t let me have another one. On both sides my lymph nodes were extremely reactive - so much so that they couldn’t do a biopsy on the left side where I’d had the jab - so I had to have a sentinel node biopsy during surgery.
its been 10 week for me now - I also have the smurf boob and pain too so I think that must be normal. I know the blue can stay for quite a while. I have a copper coil that makes my periods quite heavy anyway so pray for me that hopefully they won’t be too bad ❤️
I had been on antidepressants for a long time from the age of 15 so I didn’t want to take anything for the pmt, I’ve just tried to manage it myself as best I can.
today is my first day of radiotherapy so I’ll let you know how I get on, I’m not worried about it just very glad to get started 👍🏻 I have to start the Tamoxifen today too - it’s in the draw ready to go for tonight! 😬😬
Yes you’ll have a CT scan first - it’s really easy and everyone at the hospital was lovely ❤️
I too am suffering with night sweats and waking up 3/4 times a night feeling like my body is on fire.
Ive been on HRT for nearly 4 years and of course stopped when I found the lump. I miss my HRT, it worked really well for me.
Im ER+ so I know I’m having Herceptin at some point.
Im getting about 3 hours sleep at the moment and then struggling through the day. But I feel like that’s the least of my problems
I'm ok thank you it is a shock and it something you never think is gonna happen to you x
Aww bless you I'm so glad you found it early X
I had both jabs before my lump was found ,it's been 4 weeks yesterday since my surgery I'm still in pain and discomfort and a smurfet boob, I thought I'd be ok by know I hope the Tamoxifen starts to do it's magic quick for you I did suffer a bit with my periods they were so heavy and painful I had to have a endermitrol ablation 2 years ago thank God it worked
Did they not offer you meds for your pmt ?x
I saw a really lovely oncologist today I've picked up the Tamoxifen but I won't start it till after the Radiotherapy know as my hot flushes and night sweats are just to much right know so waiting for an appointment hopefully the wait is not to long plus I think I have to have a CT first sending lots of love xx
Hi Lou, it definitely is very surreal at first I totally understand where you are coming from ❤️ It’s a whole bag of different emotions and they seem to change from day to day as you go along. I found mine in March and one thing I didn’t realise is how much of a long time any of the treatments go on for. I have a 17 year old daughter who has autism and I’m on my own here - we struggled before but things are even harder now…the hospital have suggested maybe putting her in to respite but I’m not sure if I a can do that. It’s so hard when you tell them - I’ll never forget telling my mum I could hardly bare to make the phone call but I’m so lucky that they are giving me a lot of support. I’m here anytime if you want to chat ❤️ Em xx
Im a bit older than you too (52) and was diagnosed with stage 2 lobular cancer ER+ and HER2 borderline two weeks ago. I'm currently waiting to meet with my consultant again after an MRI on Wednesday.
My emotions are all over the place. Anger, sadness, fear, acceptance, it's all very surreal at this point.
I have two boys who are 18 & 21 so telling them was hard.
Keep posting & take care x
Hey JellyBaby, I hope you are doing ok…it’s a big shock isn’t it? At the time I hardly had any breast tissue as I was so thin (my back pain was so bad that I wasn’t eating much) and that’s how I found it so early. Just out of interest - had you had the covid jab before you found it? I’m in exactly the same position as you - it’s been 9 weeks since my surgery and I start radiotherapy and tamoxifen on Thursday. Hoping tamoxifen actually helps me as I suffer really badly with pmt symptoms half way through my cycle and just before my period. Have you had any surgery yet?
love and hugs,
I'm so sorry to find you on here
I was diagnosed in may with invasive ductal breast Cancer grade 1 (ER & PR + 8/8 and HER2 Negative
In my left breast I am pissed that I didn't find my lump even though I had been checking
My left arm was swollen so that prompted my doctor to referr to the breast clinc
I've since had surgery with a good border I'm currently waiting to start radiotherapy and to be put on Tamoxifen
I'm glad it was picked up in the early stages
When the surgeon told me it could be cancer I was like ok I teared up and then I was ok it was just the initial shock of it all
But I have recently discovered it is ok to cry it's a lot for any of us deal with
Hopefully you have started radiotherapy
Lots of love xx
Hey @Stayzen 😀 thanks for the reply…that’s good news to hear how you’ve got on with Tamoxifen. My cancer was ER+ 7/8 an the same for PR+. I’ve always struggled immensely twice a month with my mental health, around when I ovulate and about a week before my period. I’ve been even worse when taking the pill and now have a copper coil in as things were so bad. So part of me hopes and thinks that Tamoxifen will have a positive result on me - if not the benefits outweigh the side effects for me no matter what as my cancer was so estrogen receptive. It went from the size of a pea to about 20mm and back down during my cycle, and the covid vaccine made it extremely painful - I think that may have been one of the reasons I found it as I only had 2 cycles where I could feel it! Yes my breast care nurse has recommended that course and I think it’s a really good idea that I do it - I have been asking how I move on from this once I’ve finished my treatment and I think that group will really help me. Emily x
I had the same diagnosis as you (also grade 1, 15mm, hormone positive, nodes clear), and looks like the same treatment plan - surgery, radiotherapy and tamoxifen. Similarly pre menapausal, although older than yourself.
I’ve been on the tamoxifen a year now and have tolerated it well. The main symptom is night sweats, which seems to be cyclical. I tend to have three weeks of night sweats and then a couple of weeks symptom free. At first I was waking up dripping wet (although it wasn’t waking me) and over the year this has eased and it’s mainly that during the night I am extremely hot. Luckily no other symptoms. I realise this isn’t everybody’s experience but i think there are a lot of people out there for whom tamoxifen is manageable.
I would recommend signing up for the moving forward course with Breast Cancer Now. As part of this they run sessions were you can talk to others who are going through the same experience, I found it really helped to know that others had very similar feelings and worries.
Hey Lizwa ☺️ Thanks for the reply, I hope you are doing ok (well as ok as we can in these situations) ❤️ how long ago were you diagnosed? It’s such a shock isn’t it, i think I’m only just starting to get my head round it now. Yes I’d love to chat that would be great 😊 Em x
Hi Bookish, and thanks for the reply ☺️ I’d experienced a couple of hormonal cysts over the years that had become larger around the time of my period, so I really did think it was one of those! I got a little bit more information yesterday, my ER+ and PR+ were 7/8 on both so the benefits of tamoxifen will be quite high for me I think. I’m sorry to hear you had a bad time on them, my doctor (who has had the same breast cancer as me) is on those ones I think and she’s found them much better too, Em x
I'm 37 and recently diagnosed with invasive ductal carcinoma too grade 3 measuring 3cm her2+ that has spread to one lymph node 😞
I have to have chemo first and then treatment for the her2+ and then either a lumpectomy or mastectomy.
Am here to chat if you want to xxx
I'm a few years older than you, but my first breast cancer diagnosis was at 22 so... yeah. It's never a fun thing, but I think we generally think of it as an 'older' thing, so it can feel really isolating when you're that much younger.
Not going to sugar coat it, tamoxifen was so awful for me that they swapped me over to zoladex. Five years ago, with another diagnosis, they put me back on it and it was absolutely fine. Yes, a few hot flushes, but otherwise not really aware of any side effects. So, it could go either way.
Hope everything goes well for you xx
Thanks for the reply Joemic 🙂 I’ll have a look in the younger women and families section 👍🏻 It would be really lovely to make some friends on here if I can ♥️ Em x
Welcome to the forum even though none of us want to be here. I'm a fair bit older than you but if you look on the section for going through breast cancer treatment, you will find a heading for younger women and families. You may find some people to connect with on there. If not don't worry there are plenty of people on here to share your concerns and answer questions etc.
Joemic x 🙂
Hey everyone, I'm completely new to the forum (my breast care nurse signposted me to this forum this morning) and would like to introduce myself and say hi - and also see if there are any ladies out there who have been diagnosed quite early in life like I have. I found a lump in my right breast where my bra wire goes back in April that was very painful around the time of my period and moveable as well. It was almost so low down I felt like it was moreso on my ribcage. At this point I wasn't overly concerned as I thought it may have been a cyst (i'd had an ultrasound about 6 years prior that showed hormonal cysts and nothing to worry about). I had a biopsy and was diagnosed with a Grade One 15mm invasive ductal carcinoma (E+ P+ and Her2 Neg). I don't think I could have run out of that door fast enough, I don't think anyone can understand that feeling until they've been there!
I've since had a lumpectomy and a sentinel node biopsy (lymph nodes were clear) and cancer was removed with a good border. I'm now waiting on 19 radiotherapy sessions at the end of June. I was just wondering if there were any other ladies out there who have been diagnosed fairly early on? Also, I was wondering how ladies have got on taking Tamoxifen? I'm pre-menopausal and worried about side effects.
I'm a single parent with a 17 year old Autistic daughter and luckily my parents have been a great support and helped me out so much and I'm so thankful. I have hardly any friends and i'm feeling quite isolated with it all. Emily x