Hi there. Diagnosed 2 weeks ago and like most people on here I’m sick to my stomach and terrified!
I have invasive ductal cancer, ER 5 moderately negative (to be honest I’m not sure what the 5 mod -ve part means) The report says 35mm but my consultant thinks it’s bigger around 5cm which scares the hell out of me. It is grade 3.
Does anyone have the feeling of total disbelief that the lump was there and it ‘suddenly appeared’?
The ultrasound shows a clear auxiliary but I’m not convinced until they sentinel test. How reliable is the node ultrasound?
The MDT advised mastectomy followed by chemo. I have my pre op assessment on Tuesday. I wonder how long I’ll have to wait after that, the nerves are killing me!
Do women have a say in wanting a bilateral mastectomy (other than genetic reasons)? I do not wish reconstruction but I also don’t want to be asymmetric. When discussed I was told that there is evidence that the healthy breast can have more problems post op. Has anyone had experience of this?
Thank you for listening folks and I know it’s late and not many people may be around but I’m keeping so busy during the day to keep my mind off things that my head explodes into overthinking worry mode at bedtime!
Thanks again.
Hi @indigo2,
I’m sorry you’re in this position and I (and doubtless everyone else on here) can totally relate to the horrible, horrible waiting. Sounds like you’re doing a good job of keeping distracted during the day though But yes, when you try to sleep and can’t have those distractions, the thoughts surface (Got to be addressed at some point though, I guess ) I’m afraid I’m not going to be much help with your questions though Just wanted you to know you’re not alone. I had a unilateral mastectomy and reconstruction in May and haven’t had any complications with my ‘healthy’ breast I’m sure other people who can actually help and have had similar choices to make etc will reply soon! But, in the meantime, know that you’re not on your own and that this is one of the hardest parts. Sending strength and positivity x
@dorri, you’ve no idea how long it has just taken me to find the reply button!
Thanks so much for taking the time to write.
So glad to hear that you’ve had a relative smooth journey with no complications.
Fingers crossed and yes, positivity
I’m so sorry this is happening to you. We all know the stress. In the States, double mastectomies are very common. I had one and experienced no complications. Very glad they’re both gone. By the way, I also had a grade 3 lump. It had not spread to the lymph nodes despite being 3.2 cm. Did do chemo though after surgery.
Hi Kay, thank you for your support, the unknown is awful isn’t it.
I would really prefer a bilateral mastectomy but I get the impression I have to make a case. I agree with the surgeon my lump feels huge which ofcourse is naturally making me think of spread.
I may consider asking for an appointment to further discuss it all. Still completely dazed.
I had a 3.2cm IDC on right and DCIS both sides. Lymph nodes looked clear on ultrasound and all four sentinel were clear after biopsy.
I had double mastectomy (one side was possible to do lumpectomy but I requested double and they agreed it was the best choice for me).
After surgery they found 60mm of DCIS instead of the initial 10mm they thought and a couple of tiny IDC among them - this was in the other side to the original IDC - so I would have needed a bilateral anyway.
I originally wanted reconstruction (not immediate due to the nine-week wait), but after surgery I found I love being flat and much prefer it.
Good luck in your treatment xx
Thank you for your response Lynn. My you’ve been through it and got more than you bargained for. I’m so glad that you feel you achieved the best result.
After a sleepless night I have contacted my specialist nurse to further discuss it all…
Once again thank you for your input.
Welcome to the forum which is such a great source of personal experiences. I know what you mean about a lump appearing almost overnight. I checked myself very regularly and could not believe it when I felt one in my left breast. That was early April. Surgery followed, I had lumpectomy therapeutic mammoplasty and reduction in the other side . A mastectomy was not discussed but I didn’t want to be lopsided. I am now having chemotherapy, just had 2 of 6. I didn’t have any complications with healing in the reduced breast.
If it helps, I remember that feeling of terror well. I had 3.5cm invasive ductal carcinoma plus 8cm DCIS! In one lymph node. Triple positive, grade 3. I received chemo, mastectomy, targeted therapy and am now on endocrine therapy. I was truly terrified but they alway said it was curable so I held onto that. I was diagnosed in Jan 21 and am fully clear of it - life back to a new normal but a good one! I hope this gives you some reassurance that big and aggressive doesn’t always mean it can’t be cured xxx
Hi @hopeful1974 , I too am now hopeful. The reassurance and hope that gives me is
so encouraging, thank you.
I spend my days waiting for surgery, over thinking what has been said and what could happen. I have sense on my other shoulder saying trust the process.
What a trauma for all of us.
Well done for getting through such a bumpy ride and thanks again for getting in touch.
Morning
I had my second cycle of EC on Monday. I have a cycle every 3 weeks. I switch to docetaxel for my 4 th cycle, when I will begin Herceptin. So far it’s been ok. I always feel like I have a bad hangover for the first 24/48 hours, ie bad head and queasy tummy. I was sick just once this time, but the anti sickness meds really work, and I didn’t need any after Tuesday night. I have 7 days of steroids to take, and if it is anything like it was previously I do feel peculiar for a couple of days when they stop. But I am able to walk the dog in the fields and woods, and do everything else really. I didn’t cold cap and my hair began shedding after about 14 days. It got to the stage where I was frightened to brush, comb or wash it. So I braved the shave and had the lot off.
Hope this helps, and the best of luck .
That helped so much, thank you.
My mum passed away fairly recently, she had leukaemia and I know we are all different and the drugs are different too but man she was so ill.
I’m very much a pragmatic be prepared person which can be really anxiety provoking sometimes as not only am I preparing my hospital bag but info for future treatment at the same time!
Thanks again for telling me about your experience it really helped.
Hi @indigo2, welcome to the forum. I hope you find the support you need here. It looks like many people were already able to share their experiences.
If you ever feel like speaking to a nurse would help, please remember we are here, and always happy to talk things through, at your own pace.
You can find more info here: Contact our nurses | Breast Cancer Now
Hello, I hope you don’t mind me jumping on your thread. Your title caught my eye because I have just registered after reading posts for a bit. So I am new too and your description of the fear and panic and wait resonates with me. I wasn’t going to do this because it makes it more real. It all seems surreal but talking about it on here brings it to life. I have been journaling (not done for ages) this morning as I needed to get my thoughts out of my head. I am at the very beginning of what I hope is a very short over and done with journey on Tuesday at the breast assessment clinic. I had a routine mammogram on 19/08/24 and received a letter yesterday inviting me to the clinic for investigations. I had a little cry and then believed the internet that it will all work out to be nothing because I have no symptoms or signs of anything (or so I thought). There was a thing that niggled me since the mammogram . When I went into the room, the previous woman’s scans were on the screen still. When I had finished my scan, the screen was blank and not there for me to see and there was something in the nurses eyes that bothered me so I have been waiting for my letter to tell me I was seeing things and everything is okay.
So since yesterday I have had a good feel of my boobs and stood in front of the mirror and thought my left boob looked a bit square at the bottom but dismissed it. Couldn’t feel anything, got my husband to look at me as I lifted my arms up and down and hands on hips and turned left and right, he couldn’t see anything. I went back to the mirror and lifted my arms again and turned more and then I saw it. A bloody dent in my left boob. I got my phone took a photo and F*** me there is a bruised patch and a bloody dent at the bottom to the external outside of the boob. Several photos later and it is undeniable. So the idea that they are on a wild goose chase on Tuesday has evaporated and now I cant quite believe it. That not only do I have a breast clinic appointment which freaked me out anyway, I actually have a visible bloody symptom. Slowly and quietly becoming more and more worried and unable to be normal. I also have a pain in my lymph nodes in my neck which I have been ignoring which is adding to my worry. I am always putting everything down to age and menopause (54 but young and feisty) but maybe not this time. Just wanted to share that and I hope to hear from you and others. Thank you for reading. XX
Hi @square-boob,
I’m sorry you’re going through this. I can absolutely relate to the ‘Oh f***’ feeling of seeing a visible sign that something might not be right. I really hope that in your case, it’s all fine, but at least you know where we all are if you need us Feel free to ask any questions etc. Wishing you all the best for Tuesday. Please let us know how you get on when you can x
Apologies, I was getting a bit over enthusiastic working out the reply options and realised it was best to just bale out and start again!
So square-boob, nice to see you haven’t lost your sense it humour amongst all the angst.
I’m having an issue of total disbelief at finding such a large lump which has clearly been lurking there unseen for a long time. I totally identify with your process, undeniable physical evidence and now ‘the wait’.
Head down, weather the storm and no matter what happens on Tuesday, myself and many others are right here listening.
Keep in touch.
Hi square-boob, the waiting is torture. I too noticed a dent in my left boob. Some days it was there, others it wasn’t so I loosely monitored for a few weeks, unsure if I was imagining things. One morning in June it was quite noticeable and I went to doc. I was seen at breast clinic on 2nd Aug and diagnosed with breast cancer. I’m still trying to process it! I haven’t had any treatment yet, just a couple of biopsies, a CT scan and today a bone scan. I’m waiting for results and it’s so hard not to go down that rabbit hole. I have read , Jeffion here that once treatment plan is in place people feel much more at ease. I hope this is true! Whatever news you are given (and I hope it’s good) reach out here. I was glued to my phone week before last on the forum. It provides so much reassurance and support. I’ve literally been drained of energy this week so haven’t been on. But following my bone scan today, I needed to reach out. It’s a very scary journey to find ourselves on but so many wonderful people on here speak of the treatment they get and there are lots of success stories. I spent days crying and wondering about like a zombie. The waiting is horrendous but you have friends here. I’m sending lots of love xo
But yes, when you try to sleep and can’t have those distractions, the thoughts surface 
(Got to be addressed at some point though, I guess 
) I’m afraid I’m not going to be much help with your questions though 
Just wanted you to know you’re not alone. I had a unilateral mastectomy and reconstruction in May and haven’t had any complications with my ‘healthy’ breast 
I’m sure other people who can actually help and have had similar choices to make etc will reply soon! But, in the meantime, know that you’re not on your own and that this is one of the hardest parts. Sending strength and positivity x
Feel free to ask any questions etc. Wishing you all the best for Tuesday. Please let us know how you get on when you can x