I have put off joining a breast cancer forum since my DCIS diagnosis on 9th November 2023. I was firmly in denial and quite sure it would just be removed, a quick blast of radiotherapy and on with my 3 jobs. I didn’t even plan to tell my elderly parents and 14 year old son. Fortunately I do have a very supportive husband and best friend who lives close by. I’m 53 years old and still thought I was invincible.
I was in surgery on 15th November and got the results on 30th November. The DCIS was 38mm with a 2.3mm Grade 2 invasive breast cancer which is HER2 positive. That was the moment that life went into freefall. However, I still believed that the next surgery which was Tuesday 12th December, would get the rest of the DCIS out and that my lymph nodes would be clear. Yesterday I had the news that they still don’t have clear margins and that 2 of the 3 lymph nodes they took contained cancer cells.
I have been told now that I will definitely be getting the Herceptin treatment which I believe comes with chemo and then radiotherapy once they have finished doing my surgeries. This is actually my 4th surgery as I had Hadfield’s Procedure for nipple discharge a year ago but which didn’t show up any cancer cells. The next surgery is to once again try to get clear margins and to take more lymph nodes.
I’ve taken myself to some very dark places by surfing the internet so my wonderful MacMillan nurse has told me to stay off the internet and suggested this website. Hence, my joining today. She says it is treatable. I have to hang on to that.
I guess I just want to hook up with people who have been there or are going through similar. I’m scared that if it is in the lymph nodes then it is shooting through my body to all my other lymph nodes. I hate this wait.
My next appointment is a week today - 4th January 2024 - and then I will be booked for my next surgery. I know I’m asking for answers that nobody can give me yet but I’ve always found solace in other people and been woeful in carrying stress alone.
I have told my 88 year old mother, 86 year old father and 14 year old son now and they all seem ok. It just seems that the news just keeps getting worse.
This is a Christmas I won’t forget! I hope you are all managing to enjoy it in one way or another.
Let’s pray that 2024 sees us all healed and on the road to recovery.
Welcome to the club nobody wants to join. I was diagnosed in September with invasive ductal, hormone positive and thought I’d just be having radiotherapy and tablets as lymph nodes looked clear. Had a lumpectomy and slnb originally, luckily the lump came back with clear margins but it was in both the lymph nodes they removed so had to go back and have a full axillary clearance. Like you I went to dark places thinking it must be spreading everywhere. I got my results yesterday after a five week painful wait to be told it wasn’t it the further six nodes that were taken. I am now waiting for an oncotypedx test to see if I will benefit from chemo or not, then back to the radiotherapy and tablets.
I guess what I’m trying to say is it might not be in any other nodes and hopefully your next op will give you the clear margins.
Thanks for the welcome! It’s not a club you want to join but so much better than going through it alone. I’m so grateful to you for answering. It means a lot to know that you understand and can relate.
That is good to hear that yours was not in the other nodes. Five weeks! That’s torture. I pray that my next op is it and that my outcome is like yours. Thanks so much for making contact. I’d love to follow how you do and know how it feels to be on the treatment path.
You are and will continue to be Invincible. One foot forward, day at a time sounds pedestrian but that’s how we get through. Bad days, real parc days and feeling better days. Its a journey and, sooner or later, like me at 73, you will find you are at the end of it and feeling pretty much like my old self again. A little greyer, definitely a little slower but happy and ready for life. New Year wishes to you. Hold your head high and you will do this.
That’s such a lovely and positive message, Teddy. Thank you, thank you, thank you. One day at a time. I need to remember that and stop my brain from shooting ahead to worst case scenarios. XX
Hi Salbert,
I’m so sorry to hear you’re going through this. I went through something similar 5 years ago, like you just before Christmas, at 52 and with a 12 year old son. I was diagnosed with DCIS, grade 3 HER+, 8.5 x 5 tumour, which hadn’t shown up on a mammogram 6 months previously.
When I first saw my Oncologist he said it was very aggressive but the good news was that we had Herceptin available, I chose to see this as something really positive. I’d heard such good things about Herceptin from a friend who was a nurse who visited patients in their homes to give them Herceptin intravenously.
I had 8 cycles of FEC-T, followed by surgery, a mammoplasty ,radiotherapy, then another 11 cycles of Herceptin on its own. I should add that the cancer was also in my lymph nodes under my arm, which were removed during surgery.
I think from my point of view, in some ways the waiting and not knowing, which is where you are now, is one of the hardest times. Once you know exactly where you are and a treatment plan is in place you will find the strength you need to get through it. Accept any help and support that is on offer, talk to people who have experienced this and look after yourself.
It’s five years now since I was diagnosed, I won’t pretend it’s been easy or that I feel the same as I did before but I feel very lucky to have been able to receive the treatment that I did, and progress is being made all the time.
I wish you well for your next surgery, please let us know how you get on, sending love to you and your family.
Hoping more HER+ ladies will join this thread. I think there was a few on the June Chemo starters that I joined as I thought I may have had chemo before surgery. But many of them have finished their chemo and there is only one or two people posting now. As I’m bi lateral there is even fewer of them.
The big positive that @Nessa46_1 says with the use of Herceptin our prognosis is so much better. Dr Liz O’Riordan is a Breast cancer surgeon who has breast cancer and she does lots of videos on YouTube this is about Herceptin
there are so many supportive people on this forum, they will laugh, cry and hear you rant. I found the chemo starters thread to be very supportive, in September two of us managed to walk 100 miles in October and one lady did a Spotify list for us to virtually walk together. I must admit I could walk more earlier on with chemotherapy but as time went on the side effects lasted longer and were more intense. So when you start chemo make sure you join the month you start!
Hi hope you are coping a little bit better I truly empathise with the situation you find yourself dealing with . How life can change in a moment
I was diagnosed 6th March 2021 found a lump absolutely knew it was something sinister only had a clear routine mammogram Dec 2020
Husband not allowed to accompany me he was sat in car park & 3 hours later I’m absorbing the news I have breast cancer
Here the roller coaster begins as you know
If I could give you one piece of advice one step at a time as the goal posts change all the time
I managed to get my head round the shit show - lumpectomy /radiotherapy
Then Her2 positive first change to absorb really hard
Here I am surgery chemo Herceptin radiotherapy & hopefully sorted
Tenacity & stickwithitness
Re iterate once you hav big picture easier to make a plan
Take care
Jackie
Hi Salbert welcome hun I know your head will be mush trying to process all the info
around you diagnosis which by the way is same as mine , which also came as a massive shock after losing my mother an sister with BC , I was diagnosed on 9th dec 21, i went private had op on 12th dec 21 I couldn’t wait because of family history and covid situation , no staff no theatre etc in NHS , not their fault just timing , I was told after op I needed chemo , radiotherapy and 18 months of herceptin and Zometa infusion every 6 months for 3 years WOW , I was deluded thinking have op and crack on which I did BUT the treatment is accumulative so gets bit ruff as time goes on but I coped fine , you MUST eat little and often , it’s important for recovery , I got thru it then radiotherapy was easy but weeks later an several herceptin injections I was absolutely done in , the overwhelming fatigue an sheexhaustion were blood
worse than anything I’d known , herceptin gave me heart issues which now meds help rectify the problems , HMMM now I realise my goals were unrealistic , I HAD to rest every afternoon be kind to yourself they said so eventually I did start to rest and take time for me to recover , my hair began growing fast , I was very slowly recovering , your body feels battered , it’s draining , so the year 22 was wrote off with treatment then 23 was wrote off with recovery
I still get a little tired but I’m beginning feeling an looking more like myself , I can say that the treatments we have today are very advanced , so much better with more positive results , be kind to yourself my lovely , you will get through all this nasty , write any questions down and please ask , I’m 57 an now 2 years on all positive , life is getting good , take good care of yourself
All the best love Nikki XXX
Sorry to hear that you have joined the similar journey I went through 3 years ago. I was 57 when I was diagnosed with ER, PR negative, HER2+++ in 2020 November. Due to the pandemic, they didn’t call me for routine mammogram screening in March 2020 and 6 months later, I was shocked with 2.5 cms lump in my right breast and swollen lymph nodes with pain in the right shoulder which prompted me to call my GP. I was lucky to see her in person that day which changed my life! She referred straight to the Hospital without scaring me too much saying to go for my routine check up. That routine check up ended up staying in the hospital for 3 hours as they found the lump and went for biopsy straight away and other blood tests. My chemo journey started on the 2nd of Dec and went on for 6 months. Combination of Chemo and Herceptin did work wonderfully and the tumour disappeared soon after 4 cycles. That was first sign of hope for my life. 2 months before the Mastectomy and my lymph node clearance planned in May 2021, all the signs of cancer disappeared as my surgeon said earlier can happen in some cases which he called ‘complete pathological response’!
Still, every thing they did as planned and cleared all my lymph nodes during the mastectomy all in one surgery.,
Soon after 6 weeks of radio therapy followed by 1 year of Phesgo injections which completed in April 2022. Now I am on only 6 monthly support drug called Zometa ( 1 last dose left in coming May 2024).
I went for my annual routine check up and came all clear after 1 year since my last Phesgo. I was lucky to have a supportive family and my husband was my rock supporting me all through this journey!
I dont feel the same energy wise after so much of treatments but, here I am enjoying the arrival of our little grand daughter a year ago and still working full time!
I hope my story will help you to give some support and I am more than happy to reply your messages any time. Please stay strong and positive. You will get through this soon.,
Hugs
Sara
Guys…thank you so much from the bottom of my heart. Yesterday was such a bad day after the shock of the day before. I know I have a horrid time ahead and have, with a heavy heart, given notice on my drama teaching jobs. I have another software sales job which I can do on a laptop from bed so will do as much as I can. I guess I had better get into some Netflix!
I am so happy to hear that some of you have got rid of this disease and are cancer-free. It gives me hope. Yesterday I was convinced I was dying. I hate that it seems no matter what I do, I can’t stop thinking about it. If I actually find myself thinking about anything else then the reality comes crashing back in like a tsunami.
I am feeling more positive today and not so adrift but that’s possibly got a lot to do with finding some buddies who know the score and can tell me that there is light at the end of the tunnel, dark and scary though that tunnel is.
Thank you for sharing your stories. I’m so sorry these are our stories but hey, like some of you have said, Herceptin is a wonder drug and whereas this used to be a bad cancer to get, my GP friend said that now it is a good one because of it.
And now, 9am approaches, and I had better start work while I am well enough to earn some money. I intend to work as much as I can throughout this but am realistic enough to know that I won’t be doing full time hours anymore.
Anyway, I want to finish on a positive note, I’ve virtually met you all and you got or are getting through this. One day at a time…one day at a time.
Morning Sal
Just to say, welcome to a safe place where you can say anything, ask anything. So many women are experiencing what you’re going through. You are not alone, you have lots of sisters!
I had cancer in one of three lymph nodes and 4 years on from surgery I’m doing fine. When I was told I had breast cancer, I asked, “Can you fix me?” and in true Bob the Builder style, the reply was, “Yes, we can!”!
Hold on to the knowledge that your breast care team are experts in their field and want to do everything to make you well.
Keep posting, keep letting us know how you’re doing. We’re all with you in this. God bless. Xx
Diagnosed May 23 following routine mammogram & recall. I just know my tumour wasn’t there 3 years ago at the last screen and then it was! I couldn’t feel a lump, but it’s deep/far back. Further tests & biopsy showed one tumour in my left breast and 3 lymph nodes affected. I like you was convinced it was racing all over my body already. I was HER2+ve and oestrogen positive.
Anyway, everyone was v kind & treatment plan was:
Chemo first - (it’s called neoadjuvant when they do this). I had 3 cycles of one cocktail and then 4 of another. For these last 4 I also had Phesgo (a combination product that contains ‘Herceptin’) at the same time.
Like @Sara123 my tumour shrank to almost non-existent and armpits cleared after just a few cycles. They could tell this from MRI scan. But I kept going, so chemo July -Nov, then surgery was lumpectomy and full lymph node clearance on 15th Dec. I’m recovering from that right now - first time I’ve taken any proper time off work. Working from home I managed to keep going throughout chemo apart from the odd rough day. Now I’m in another waiting phase - results of surgery are on 4th Jan. I am a bit apprehensive, but expect to be handed back from the surgical team to medical oncology for a short course of radiotherapy and then it will be for me to recover and gradually get back to a more normal life. The Phesgo keeps going every 3 weeks for 18 doses in total, so I’m off to the hospital for what will be dose 6 today. It’s just a short - 5-10 minute injection into my thigh. I’ve been totally fine with these so far.
I would love to follow your journey with you. Do keep sharing. Meanwhile know we on this Forum are all with you…
You are wonderful women. I’ve just read this to my husband and burst into tears. (Again!) How are there words to adequately describe the gift of hope, support and friendship. I feel I have in 24 hours found a little club of survivors and fellow warriors.
Suedot, it’s great to hear that you managed to work throughout apart from the odd rough day. Luckily my boss got through Stage 3 lung cancer and survived it so has been really supportive.
Alwaysachoice_1 thank you for being my sister. I woke up from my last surgery and said ‘Can you still cure me?’ and my consultant said something along the lines of 100% curable but that was before the lymph node involvement results which threw me all over again. Now, hearing your stories the light is finally dawning, after a dark 48 hours, that it is STILL curable despite lymph node involvement.
I’m sending you all a massive hug and I hope you can feel it.
Hi Sal,
I’m another member of the HER2+ club. I had a similar experience to you, diagnosed in early October with a 17mm triple positive invasive ductal tumour in left breast. Intially thought I’d have a lumpectomy, radiotheraphy then endocrine. Turned out I had another 8mm lobular tumour discovered by MRI scan. I had a mastectomy with a simple reconstruction on 10 November & have recovered from that well.
I’m now waiting to confirm that will have to have chemo & herceptin in the new year. It would be 12 weeks of weekly doses of Taxol, along with 14 doses of herceptin every 3 weeks. I am disappointed to be facing this, but I’m going to try to be as positive as I can - and to be thankful for treatment that will hopefully help us not to have a recurrence! I’d be happy to chat along the way & hope we can help one another through this.
All the very best for your next appointment.
LMD
Thank you for sharing your journey. It make it seem better for the future. I’ve just finished 12 weeks of chemotherapy and each day is a struggle. Swollen ankles, sore head (cold capped, so kept most of it), aches joints, sleep deprived, sore nails, the list goes on.
At least I know that 2024 I still have Herceptin, 4 monthly MUGA heart scan and my first Zolendronic acid infusion in April ( have dentist in January, earliest I could book as they couldn’t get me in before chemo).By Autumn I should be done and hopefully have a better 2025!
Thank you for sharing. I’ve just finished 12 weeks of Paclitaxel with Herceptin 3 weekly. I cold capped and kept 98% of my hair, just two small patches above my ears where my glasses go. ( I put my glasses under the cap in error, none of the nurses told me not to), they should be worn on the straps on top! If you have any questions, I’m here to help if I can.
I wasn’t able to work, have been signed off since diagnosis in May. I work in a school, so not the best place to keep away from illnesses! They had scarlet fever outbreak just before Christmas. Also teaching is not any good with chemo brain and crying for no reason! My brain is not functioning the same. Not sure I’ll ever return to teaching, I was always catching bugs with asthma and heart condition before the bloody cancer! Maybe time for career change.Breast Care nurse said lots of ladies decide the job they were doing isn’t right anymore and do something they really enjoy rather than have too!
Thanks so much for sharing your stories. It just helps to chat with other people who are also going through this scary, stressful nightmare that you are suddenly plunged headlong into. Like they say, the club nobody wants to join.
I’m loving the tip about glasses being worn over cold cap. I’ll certainly be doing that. I’m also really disappointed to know that chemo is now a definite but trying to see it in the light of ‘WOW! How lucky are we to live in an age of a wonder drug that will kill this nasty little mutant that has invaded our bodies’, but it’s hard because of course, we all wish it had never come in the first place.
I wonder if I will go back to teaching. I love it but at the same time it takes so much out of you and children are walking Petri dishes.
Please, please let’s all keep in touch.
And now, a Friday night yawns ahead and I guess I had better learn how to sit still and watch the telly like a normal person. I don’t even know how to turn the thing on! I don’t want to go and join my husband in the pub as the last thing I can cope with right now is a hangover and I’m such a lightweight that it’s almost a given. (By the way, I did send him there as I wanted to be free to let rip during my phone counselling session and my word, she did get it today, the poor woman!) I’m not teaching tomorrow so no lesson prep and so I find myself at a loose end. I feel like my normal has gone.
I keep finding myself going ‘Cancer? What? CANCER?? ME??!!! How the hell did that happen?’ Anyway, I’m burbling/splurging when I really need to go and eat something healthy and work out how to use the remote control.
This club sucks loads but we do have the best members. So welcome. I’m so sorry that every time you’ve gotten news it’s been worse than what you’ve expected. It happens but it always sucks when it does. So in saying that realize it’s not unusual. It’s fairly common for IDC to hide among DCIS cells and not to know it until surgical pathology comes back. And considering you’ve got HER2+ receptors, it’s also not particularly surprising you’ve got lymph node involvement. It is an aggressive breast cancer that normally moves quick. BUT, and this is important, in breast cancer world the quicker the cancer moves the quicker it falls in treatment. Chemo works great on those SOB’s and Herceptin has been a game changer. No this isn’t going to be fun and you’re going to feel worse before you feel better but the chances are highly in your favor that this treatment is going to work fine.
Also, this is by far the worst of it…the waiting. But it’s only one more clearance and then treatment will start and once that happens a sense of control comes back. And with it, a needed sense of peace. So know this horrible anxiety and feeling does pass and remember you’re almost through the information gathering time.
Salbert aww right back at ya hun , we are all warrior women on a mission to live our best life after devastating life changing news , but we all have a much better outcome due to amazing research and life changing drugs on top of strength, determination and positivity, sisters from other misters
Keep us informed lovely take care xxx
there are so many supportive people on this forum, they will laugh, cry and hear you rant. I found the chemo starters thread to be very supportive, in September two of us managed to walk 100 miles in October and one lady did a Spotify list for us to virtually walk together. I must admit I could walk more earlier on with chemotherapy but as time went on the side effects lasted longer and were more intense. So when you start chemo make sure you join the month you start!
love Nikki XXX