High Grade DC with high Grade DCIS/HER2 positive

Hi Emie,

Sorry to hear your story and that you find yourself here. You will find support and information on the site.

Like you, I was initially diagnosed with DCIS 25mm (found by chance after having a benign cyst drained). I had breast conserving surgery early Dec and then the pathology results showed a small invasive cancer 3mm.

I was then booked for sentinel lymph node biopsy early Jan - and thankfully that was clear of cancer, so no spread and stage 1 only.

Then came the shock of HER2+ results and chemo and herceptin. - as you say devastated and scared!

I am 50 and had felt well and reasonably fit prior to the operations / treatment.

I have now had my first 2 rounds of chemo - paclitaxel weekly for 12 weeks with herceptin every 3 weeks for 12 months. I also have to inject myself for 3 days after each chemo cycle to boost white blood cells - again scary thought but definitely do-able, they do make my legs ache though. Radiotherapy after chemo ends.

I was literally terrified of chemo but can honestly say I have not found it as bad as I feared. Whilst not pleasant the side effects have been manageable so far for me - though everybody is different and my experience is only of paclitaxel. I have 2 to 3 days where all I manage is getting up, showered, dressed and sitting on the sofa for the day and feel generally unwell. Then I start to pick up and have days where I can go for a short walk, make a meal, do emails, phone calls, light housework etc. Before the whole process starts again!

The hospital is my new social life but the nurses have been so supportive. I had a PICC line put in as my veins not great but even this is manageable. My hair is starting to shed slightly so I have bought some hats and ordered my wig in preparation.

It all feels surreal! But I have viewed it as let’s throw everything at it to achieve the best possible chance of no recurrence. Strong support from family & friends also helps! I had the COVID vaccine at start of chemo but I still shield at home just to be sure.

I do hope some of my story gives you strength, and wish you all the best as you find your way through the emotional rollercoaster this is. Be kind to yourself and ask for and accept help and hugs (even if they are only virtual!). Let me know how you get on.

Best wishes xx

Thank you so much for telling me your story. I am not having my Mastectomy on Wednesday now just the sentinel lymph node biopsy and a CT Scan. They want to start my treatment ASAP so will have the Mastectomy at a later date. Just hoping they dont find any cancer in my nodes or any where else. I  am glad you are coping OK with your treatment and it has given me a little reassurance that I will manage mine too as like you , I feel fine and i am fit and well xxx

Would love to keep chatting with you, sending you positive vibes xxx 

When I had my SLNB they were able to test the first 2 nodes whilst I was still asleep in surgery so as soon as I came round I knew the cancer hadn’t spread - huge relief! And also a smaller operation to undertake than full node clearance. 

Almost the hardest part of all of this is the waiting and the changes to treatment plans as more results are found, I did a fair bit of reading around but treatment plans seem very tailored to the patient - a good thing - but doesn’t give the immediate answers you want! It really is a case of taking it a step at a time and trusting the doctors to get us through it. 

I had my third round of paclitaxel yesterday - drove myself there and back this week, feeling brave! All went ok, ate hospital lunch there then managed supper last night ok. Feeling worn out today but pottering about, reading, watching tv ok. Tomorrow likely to be much the same. My taste buds are off and always have a strange taste in my mouth but no real nausea, thankfully!

Wishing you loads of luck for your SLNB and scan on Wed, sending positivity your way. It feels hard having 2 operations in quick succession but I found both ops a very similar experience and recovery, so hoping you will take it in your stride as well. Just remember to rest up a lot and look after yourself.

Let me know how it goes as and when you feel well enough, sending huge hugs your way xx

Thank you, that was good that they tested the Nodes while you were sleeping I have been told that I won't get mine back for 2 to 3 weeks. That is the worst thing the waiting for results especially when every time they are not what you want to hear but fingers crossed it won't have spread and my nodes and CT scan will be clear. I can then just concentrate on my treatment. Well done for feeling brave enough to drive yourself for your treatment and I hope you continue to cope with it well, sending hugs and positive vibes your way xxxx Speak soon xx

Hi Guys

I have had good news today, at last. My CT Scan and lymph node biopsy results are all clear. I know I have a long journey ahead of me with my treatment but I feel I can do this. Sending you all positive thoughts to you all.

Stay strong everyone xxx

Hi Emie,

That’s great news, so pleased for you!!

At least now you know exactly what you’re dealing with and you can focus on the treatments and although that still feels huge, you know what to focus on.

I’ve just done round 5 of 12 chemo this afternoon, back home now tucked up on the sofa for a few days of rest.

Hoping you have a lovely weekend with this positive news - important to mark the good bits in this situation.

Take care, stay strong xx

Hi Josedog

Thank you. I am feeling much more positive and know I can do this. Take care of yourself and always stay strong.

Xxxx