So happy to hear round 2 was better. Yesterday I thought about you and told myself if you can do it I can do it! My hand is all bruised but it was better than last time for sure.
A bit nauseous this morning and indomnia is defo a thing. My lower back is so painful too and has been for the past 3 weeks. I am going to rest all weekend and hope for the best.
Shame I cannot move to a closer hospital like @kartoffel I must say the long commute is draining.
Hope it goes smoothly for the 3 of us on kadcyla, and that our HER2 pack continue smoothly on their journey too
@ahmamma hello and welcome! There are definitely some women on here who only had surgery and radiotherapy. Is your 10mm DCIS or invasive? Because whilst they initially thought mine was just DCIS with no lymph node involvement, that was the treatment I was told I would have. Of course it then turned out to be 39mm DCIS with invasive and lymph node involvement, at which point it became a different story and so the epic treatment path began. I hope some of the other ladies who have been in your shoes see this and answer because I know we’ve had this conversation on here in the past. If you decide to do the chemo then we’ll be holding your hand. Glad that @naughty_boob cross-referred you as there is lots of great info on this thread that will help you to feel less stressed. If you do feel stressed then you absolutely must come on here and splurge. There are some amazing women on here with some great advice.
@kartoffel Your new centre sounds great. I think I may have to go and slap my bench again on Monday, now you mention it. It will probably be hiding behind a bush thinking, here’s that madwoman coming to assault me again.
@arty1 and @jeml … YOU TWO ROCK!! How is it possible to look so bloody brilliant and display such spirit in the midst of this journey, but look at you both defying bc and looking amazing whilst doing so. I love this. Respect to the both of you. You are inspiring me to get my witchy zombie outfit out again so that I can go and hang out at the bottom of my pathway to scare the children on Thursday. Have a lovely time in Wales @arty1. Keep up that fighting spirit.
@marionse25 and @isthisreal - Well done on getting through another horrible treatment day. I hope and pray you get a better weekend this time around and if it’s a duvet weekend then so be it. Resting is the best thing you can do. Sending you love and strength to hang on in there and know we are all behind you. You are awesome.
I am off to Shakespeare’s Globe tomorrow to see The Comedy of Errors and I cannot wait. To think back to the dark days that we have all known and then to get to look forward to something again and enjoy it feeling carefree, is something I appreciate in a way I never could have done before. I was saying to a friend this week, that I have held it together emotionally all this year but if there is a day when I do get emotional then it will possibly be 9th November, the anniversary of Diagnosis Day. Then again, I may celebrate. Who knows?
Thanks @salbert as my grandad use to say all time ’ you got to keep going ’ and my grandad as been through a lot of medical sfuff throughout his life… and passed away this year at 81… he was a tough cookie! Also my little one keeps me going she is 100% my rock. I had my 5th round on friday… one more to go!!! Just waiting for another booby mri and heart scan to come through now. Cannot wait to see back of 2024 and start living again. I dont feel too bad up to now, managing to get sleep in and lots of hot baths x
Hi everyone, I’m new here and have been reading through the forum for a few weeks, I was very reluctant to actually join as it means this is all very real. I’m struggling big time! I found a small lump in my left breast on 1 Oct, was seen at the breast clinic on 10 Oct and received my cancer diagnosis on 23 Oct, triple positive, and ever since I’ve been slowly sinking into a deep black hole, googling, worrying, scared of what my life is looking like in the future. I’m 36 with 2 young children (9 and 4) and I’m trying so very hard to stick to normal life as possible but each day is getting harder. Everyone seems so positive here, please help me! From the minute I wake up (from barely any sleep) I’m crying, not wanting to do anything, let alone entertain my children or work. Does anyone have any tips or tricks to carry on as normal as I know from reading through a lot of comments there will be a lot of waiting around. I’m currently waiting for results of a mammogram, I have dense breast tissue and originally only had an ultrasound and biopsy. I have an appointment on 31 Oct to get results and discuss surgery, assuming all is ok and no further biopsies are needed. Sorry for rambling but felt like I needed to offload to people that understand how I’m feeling. My friends and family have been brilliant but just keep telling me to stay positive and everything will be ok which really isn’t helping much Thanks x
I think the time between when you get your diagnosis and when you have a plan is a really hard time to cope emotionally. You know that your life is changed, but you don’t have any of the answers as to what it all means for you. There’s a lot of great information on the internet, but there’s also a lot more scary stuff because the people who do fine with treatment and go on to live long lives afterwards don’t really post about it. There’s a lot of people here who understand what you’re going through, so you’ve come to the right place.
Hi Scaredmum1,
I agree with Kartoffel that the time between finding the lump and diagnosis to starting treatment is the hardest as you are waiting on results and having lots of tests. When you were diagnosed, did they assign a named breast care nurse (bcn) to you? Use them and speak to to them, they are there to talk us down. The bcn nurse understands.
Take each day as it comes. Try to enjoy time with your family, accept that your mind will go elsewhere as this is something unknown and scary to you, but try to keep in the moment.
Once you have your treatment plan and treatment starts, it is easier to deal with because you are on the treadmill of treatments.
Allow yourself time to take in whatbis happening and use this forum - everyone is here to help x
I was initially told I had high grade DCIS with a 1.1 mm invasive and if I had a mastectomy the jury was out on whether chemo and herceptin would be beneficial , however when I had my pathology results I had multi focal DCIS and five seperate Her2 invasives , all tiny but when I saw the oncologist she said predict showed having chemo and herceptin would give me an additional 6.5 % benefit so I couldn’t really avoid those odds .
I had clear nodes too . Mine however was ER negative so no additional protection in taking hormone blockers .
Did you have any invasive tumours ?
My DCIS area was a whopping 154 mm !!
@scaredmum1 We are all here to hold your hand , it is scary when you are still waiting results , the anxiety is all consuming , how you are feeling is totally normal .
First up , don’t google ! You will terrify yourself . It’s good to be well informed about your condition but try and stick to up to date U.K. based info , this site is great , macmillan is also an excellent site . Triple positive sounds a scary prospect but the way to look at it is , your HCP can go in with a 3 pronged attack as there are targeted therapies now for these type of cancers which are an absolute game changer .
Once you have all your results and a plan , you will start to feel more in control xx
@salbert I’m the biggest wimp going ! However I’ve got a dark sense of humour (a relic from my nursing days ) which has somehow got me through so far . My mums been an inspiration to me how she’s calmly just taken on the chin her diagnosis and treatment . At one point they thought she’d be paralysed by the tumour on her spine but she’s a tough cookie and was determined to walk again ! She was showing me all her info from when she was diagnosed and her treatment plan yesterday and I realise just how scared she must have been but she never showed it and just cracked on .
The day before I was told I had breast cancer I went to a fantasy festival and dressed as a post apocalypse warrior , it’s now my profile pic on fb because I felt all powerful that day !
@scaredmum1 well done for offloading on here. It truely is a scary time and honestly as everyone has said the waiting is the absolute worst time. Be reassured though there are really good treatments with really good outcomes and you are in the pathway now to getting rid of this. We have all experienced the exact same fears and emotions and this is completely normal. I found talking to the breast care nurses at breast care now wonderful and also have an amazing volunteer from the someone like me programme.
You really aren’t alone we are all here right beside you as you navigate this diagnosis. Xx
I can’t add anything to what has already been said, but you are not alone. I am triple positive also. I am much older than you . Be assured once you get a treatment plan it will feel better. If you need to vent, rant, cry then do so. The best thing is to communicate with people going through the same thing, and you are doing that now.
Sending hugs xx
@rrey I just wanted to reply to your query about the phesgo injection. I was super nervous on my first one and the nurse said she’d do it quick to get it over with… I didn’t realise that wasn’t a good thing and she done it in about 2 mins instead of 8. I had such a dead thigh and was limping too with the muscular pain for a few days. The next time was the 5 min injection and still a bit quick/some pain etc so since then I’ve told them to go as slow as possible and it is so much better! I’d just say to them next time to take it very slow as you get a lot of muscular pain otherwise
@scaredmum1 hi! Welcome to this group I was also 36 when I was diagnosed (was 37 earlier this month) and have had chemo and surgery so far. I found this forum very useful and all I can say is take things a step at a time and it is manageable. The initial shock is hard, and the stress of not knowing what the plan is etc but once you know your treatment the rest will fall into place. I don’t know if you’ll need chemo but I found it more manageable than I expected, and I had a lumpectomy which I also found ok! I’m due to start radiotherapy this week too. The last 6 months has honestly went in very quickly since I got diagnosed and I just wanted to also let you know that amongst everything you will still find moments of joy with your family …. You just need time to process and it’s ok to have ups and downs! It does my head in when people say to stay positive too lol … they’re well meaning but it’s not helpful. I also kept busy whilst I was waiting for scan results/treatment plans and although it was the last thing I wanted to do, it definitely helped pass that time quicker. Just remember this forum is here when you need it
Hi - have answered your message and thought I’d post my reply on here too;
At my histology meeting I was told the HER2 result wasn’t back yet and based on the MDT discussion, even if it was positive I wouldn’t have chemo. I rang them a few weeks later to check and found out it was positive; if I hadn’t called, I wouldn’t have known! My immediate reaction was to arrange to see my breast consultant and go through everything again with a fine tooth comb. I felt a little more reassured, but I wanted a second opinion in case anything had been missed. I was diagnosed whilst we still had covid restrictions so it was a little tricky, but I saw the lead consultant within the same NHS trust - (can’t think what his title was). He concurred with everything that had been said and explained in great detail about my specific cancer presentation and why chemo was not recommended. They take into account a lot of factors as well as the NICE guidelines. It did take a long time for it to sit right with me if I’m honest; I didn’t want chemo, but also I did if you know what I mean! I had a lot of anxiety at the time and unfortunately when I reached out for help on an online forum, someone commented that I should just be grateful I didn’t need chemo and implied I was gloating about it - nothing could have been further from the truth. Needless to say I deleted my comment and didn’t write any more.
I would say write a list of questions and make sure you get all the answers you need. It’s your body and your life so don’t be put off.
I had my 3 year mammogram in July on ‘normal’ breast and it was all clear. I had a diep reconstruction in April 2023 and phase 2 in August this year and getting on with life now.
Feel free to ask any other questions.
Sending lots of positive energy to all of you on kadcyla. Its such a mental battle and in those borderline cases i can only imagine its a complete mindf***. Really hoping it settles down for all of you.
@scaredmum1 this is the worst time. You are doing the hardest bit emotionally now. In my vast experience of n=1 when you start treatment things will feel more proactive and controlled. Sometimes you want the understanding of people who have been through cancer. Other times the weight of it all is too much. You will modulate both parts in time and the intensity of your feelings will reduce. Sometimes i would get pissed off when people were upbeat on my behalf because i wanted my fear validated (still do sometimes). Other times i desperately needed to have hope. We all need hope, and though it can feel a bit forced, it is the hope that feeds the positivity. And the positivity that feeds the strength to get through this. You are so much stronger than you know.
On that note, I met my local dragonboat racing group this weekend and they are all at different stages of the journey; fine, recurrences, stage 4. All of them without exception are inspirational in how they are living their lives. I got great post op advice on lymphodema, prosthesis and prep for radiotherapy… and most importantly, who to contact to get stuff done. I am very fortunate to have had pathological complete response to chemo but then i was confronted with the reality of what it meant to be a long term breast cancer survivor or stage 4 thriver… which was all good. Really good. But also sobering. I was emotionally shattered when i got home and more than a bit tearful, but i am learning from the dragons how i might live my life off the back of this. It makes me feel so grateful to have had the treatment i have had and the care attention and support. And determined to have more meaningful life.
Putting that support structure in place is key with the right people, avoid the emotional vampires just around for the drama. Counselling is often free through local cancer charities. I am a member of choir where i can have some cancer free time. And i joined the dragons.
Putting this link in as i knew nothing about it before. Lots of local groups. Xx
Welcome to the group and the forum. I’m so sorry to hear of your diagnosis especially at your age with 2 small children. I’m 55 and it was hard enough for me.
This group of ladies is fantastic and we support each other. We will be there for you. The waiting and having tests is the worst time, as lots have already said, but once you have your treatment plan, you will feel a bit more in control. It’s not going to be easy but it’s doable. You can do this.
Plan ahead, cook food and freeze if you can. Organise lots of help especially for your children for the times when you feel rough. I’ve read lots of posts with ladies with children not knowing if or when to tell them. I’ve worked in primary schools for over 20 years and all I can say is be honest with them, talk in a language they can understand and tell their school. You don’t have to tell all the parents but it’s important the teacher , head and teaching assistants in their classes know to support them in school. There are many books that can explain the cancer journey some you can get from a library. This is a good link with lots of books for different ages.
As far as the forum and BCN services.
Here is some links that may be helpful to you. Some one like me has already been mentioned and there is younger women together for under 45s
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
I know this is a lot to get your head around but we will be here for you.
Thanks x
when you start treatment things will feel more proactive and controlled. Sometimes you want the understanding of people who have been through cancer. Other times the weight of it all is too much. You will modulate both parts in time and the intensity of your feelings will reduce. Sometimes i would get pissed off when people were upbeat on my behalf because i wanted my fear validated (still do sometimes). Other times i desperately needed to have hope. We all need hope, and though it can feel a bit forced, it is the hope that feeds the positivity. And the positivity that feeds the strength to get through this. You are so much stronger than you know. 