Hello
This forum is amazing, I have read many stories and everyone seems to have something unique for them. It is reassuring to read posts from those who are living with cancer and maintaining a somewhat normal life.
I was diagnosed end of June. Initially they said I had an 8mm grade 3 DCIS with micro invasion, i had surgery booked within two weeks.l they said I needed an mri to check both breast. I had this and it showed the lesion was actulal 36mm. They still planned lumpectomy, however a few days before my surgery I was called by the cancer nurse who told me they had done further tests and the cancer is her2+ which they were very shocked about. I went back to see the consultant and he informed me I have invasive Ductal Carcinoma which is ER- and her2+. Quite different to initial diagnosis.
Op cancelled and waiting for oncology appointment. I got a call from the cancer nurse yesterday to inform me that I need a CT scan of chest, pelvis and abdomen. This is when it hit me hard.
I feel like I have pain everywhere in my body since last night and convinced I’m riddled with cancer.
I read that Her2+ can grow by nearly 1% every day and am thinking that’s why it was initially 8mm. She said that the CT was routine and she doesn’t want me to worry. It’s obvious that the scan is to check for further cancer!
Has anyone else had this kind of experience? X
Hi lilly123 . I just wanted to say that when newly diagnosed with breast cancer and going through all the various tests . I convinced myself and all my family that the cancer had spread to my lymph nodes . I had a very real achy pain under my arm that kept me awake at night . I took both my daughters with me for my post surgery results, fully expecting bad news however …. My lymph nodes were clear ! The pain under my arm disappeared that very day .
Wishing you all the best going forward. Take it one day at a time . Don’t google, the info online is usually out of date and not relevant . Use your breast care nurses, they are worth their weight in gold. You will get there , Sending hugs x
So sorry to hear you’re feeling so worried. If it helps at all, we’ve all been there, and sadly, it’s part of this horrid roller-coaster, which will move on, once you have some definites, and a treatment plan.
From my experience, and of others too, it is very usual for diagnoses and specific knowledge about the size and type of our cancer to change as more detailed tests are performed and results come back. It is standard to have all of these tests so that the team can be armed with as much knowledge as possible to know how to treat us, although it is absolutely terrifying for us to be told about them, and to wait for the results.
Things can change with our diagnosis, but it doesn’t mean that the cancer has grown whilst waiting - it may have been there but just hadn’t been detected until more sensitive tests were performed.
In the end, 1 of my 12 lymph nodes had cancer, but I remember the total shock of having gone from the expectation of needing a lumpectomy and no lymph nodes involved, to it changing to a mastectomy and full lymph node clearance.
It’s also usual for you to feel that it’s gone everywhere, and to be so sensitive to every single ache and pain. It’s awful, and try to be as kind to yourself as you can and maybe try to look at those around you who can give you support. The waiting is the worst part of it all.
It’s all a shock. And it’s horrid. And my heart goes out to you.
Huge love to you and keep posting. We will be here for you xx
Hi! I’m also HER2 positive and had the extra scans as routine (mines were MRI and CT but this can very depending on person to person and criteria etc). I know it’s hard but I seen it as an ‘MOT’ to double check everything and it’s good to do it so you can get a fuller picture of everything for your treatment plan.
Please try not to dwell on the 1% statistic you seen too much…. If it helps put your mind at ease, I got my MRI/CT a month after my initial ultrasound and mammogram and was stressed about the time delay but my tumour was the same size one month later in the scans.
There is a HER2+ chat on here that you might find useful too and everyone on it is at different stages of treatment and very welcoming:
The hardest part is definitely waiting on scans and treatment plan. I personally found once I had all that done and my own plan/all the information it was easier to then focus on dealing with the treatment☺️
I’m so sorry to hear what you’ve been through, I’m not surprised you’re shocked and scared. Please try not to worry about it growing. I was diagnosed with an aggressive, fast growing tumour back in March. The consultant explained that the size can vary from scan to scan and it doesn’t always mean that it’s grown in the meantime - they just didn’t get an accurate measurement originally. I really panicked about it growing and spreading whilst I waited for treatment to start and again, he explained that even with fast growing tumours, a few weeks wont make a difference. Try and stay positive if you can - HER2 + cancer is very treatable now and it can also respond very well to chemo. They will be doing the CT scan just to check that it hasn’t spread - but it doesn’t mean that they think that it has. We are all here for you to come and lean on whenever you need to. Please let us know how you get on, Emma x
From a fellow Her2er … Please take comfort that they are fully checking you out before they decide on a treatment plan. I know it’s hard and the mind works overdrive. As all have said, once you know the plan and can have some control back you will feel so much better x
Hi
Thank you for your message. I am trying to ignore aches and pains. I think Iv been so positive from the beginning but have been hit with bad news every week. I am anxiously waiting for the CT scan date now but trying to keep busy. i worry so much as I feel that the lump has changed it’s easier to find and is a lot harder than it was.
I have stayed away from google though x
Thank you yes it’s so hard waiting, I see that everyone finds this the most difficult part. And it’s so easy to speculate.
Everything i have been doing over the last few days has been with me thinking how much things can change so quickly. You hear this a lot but until it happens you don’t realise. I am an over thinker unfortunately and this does not help. My family have been great. Im so grateful for this group and hearing others experiences, everyone’s being so individual to Them. Thank you for your support x
Hi and thank you for your reply.
Your story sounds encouraging. I have read quite a bit but only on certain sites that a gov or NHS. I agree that once I have a plan in place I will feel more in control.
Waiting for the CT and results is agonising. Out of my hands though.
I will look at the HER2 chat group. X
Hi @lilly123. I was diagnosed with ER/PR negative and HER2 positive breast cancer in May this year. I’m 38 and discovered a lump in April. It was a huge shock and I’m still a complete emotional mess. After breast MRI scan, I had a chest and abdominal Ct scan, which the oncologist said was for staging. I was terrified. Have you had the scan now?
Totally understand how you feel- the waiting/finding out what type/stage of BC you have is honestly the worst bit. It can really throw you when you are just starting to get your head around your diagnosis and then a new piece of information changes things.
I was HER 2 as well and yes they did a CT to check for spread- mine was already in at least 1 lymph node but they reassured me the CT was just to check/following procedure- they didn’t expect to find anything and they didn’t! See it as a positive thing- They just want to make sure they have all the info before they firm up your treatment plan.
For me having chemo first worked as it shrunk the tumour so much that I was able to have a lumpectomy instead of a mastectomy which is what I wanted. The treatment for Her 2 has really improved in recent years so please don’t get caught up in the stats- as a lot of these for Her 2 are now out of date.
Hi @fhs92 - could I ask whether you just had a chest/abdominal ct scan or did they do any kind of scan to check brain and bones as well? How are you getting on after treatment? I hope you’re doing well
Hello!! If I remember rightly I had a chest and abdomen CT. I’ve never had a bone or brain scan. I think they said at the time it was unlikely it had spread to bone or brain without any symptoms.
My CT results came back quite quickly as well from what I remember.
I’m doing well thanks- 2 years out from chemo/1 year out from finishing Phesgo injections. Was 29 when I was diagnosed it’s a long and scary road- but try to just take it one thing at a time!
Any questions at any stage don’t be afraid to give me a shout!!
I had my scan, I haven’t had the results, just sitting here quietly hoping no news is good news!
I have my oncologist appointment on Friday, I’m keen to find out my treatment plan so I can start figuring this into my life.
Hi @lilly123 - glad you’ve had your scan. Hopefully you will get some good news on Friday and no news is good news. I had my CT scan just before I started chemotherapy, so approx 1 month ago. I did receive a phone call asking me to go for an MRI of my liver not long after my CT scan because it had shown something and they needed to investigate. I went into a complete meltdown. But they explained to me that scans are so sensitive and they can pick up so much, so if it shows anything at all they will investigate. I went for the MRI and it was confirmed to be cysts, so benign and nothing to worry about. The rollercoaster of emotions is unbelievable. @fhs92 I’m so sorry that you had to go through this so young. I’m so glad you’re doing well and thank you so much for responding.
@rrey
That must have been so worrying for you, it must have been a huge relief to get that news.
I was originally diagnosed with a small 8mm DCIS and was booked in for surgery however when I had the MRI it came back as 38mm, they were still going to carry out the surgery but someone decided to test my biopsy further that’s when I was called back again and told stage 2, ER/PR - HER2+ invasive cancer, huge shock.
When they told me about having a CT I suddenly found myself begging for it to just be breast cancer and nothing else, and would end up being grateful for that!
Yes this is like a roller coaster of emotions. I was driving along today and out of the blue I just started crying. I find it creeps up on me when I’m not prepared and then have to shut down my emotions as I’m too busy with something else.
When I go home and sit and think about it and give myself some time nothing happens
@lilly123 its good that they did the tests beforehand so they can go in with their eyes open and give the best treatment for the specific type. But all the different information and changes must have been difficult for you to process.
I have struggled with the emotional side of things and thoughts of the future. I have started counselling to try and manage my thoughts better. It’s extremely difficult .
The first part of my treatment plan is 3 x EC chemo (one every 2 weeks). The first one was ok - I was sick afterwards, very nauseous for afew days and very light headed for a week. But after about a week, I started to feel better. The second round had to be delayed by a week as my white blood count was too low, so I had 3 weeks between treatment 1 and 2. I felt the side effects worse after chemo 2 and it probably took me about 10 days to feel better. I was due to have chemo 3 today but there was a delay with my bloods so it couldn’t go ahead - it’s due tomorrow now instead. I’ve read so much about the side effects of EC and everyone seems to handle it differently. Some people seem to breeze through it and others don’t. I think you just need to give in to what your body needs - lots of rest, lots of water and not expect too much.
I hope you’re managing ok - it’s almost Friday - I hope you get good news and your treatment plan so you can start to look forwards xx
It’s good to hear you’re having some counselling, I am a firm believer in this and have a therapist I am also seeing. It’s great to talk to someone who isn’t emotionally involved.
I think one of the hardest things with all this is that nothing seems to be certain. I like to know what’s going on and be in control when it’s about me but it seems that I’m going to have to get use to changes.
I hope you have been able to have your chemo and are not feeling too unwell. Xx
Hi Lilly, sorry to hear your diagnosis. I was similar; initially diagnosed with DCIS at mammogram and biopsies after finding a lump. Due to the size (6.5cm), I was told I had to have a mastectomy and then possibly chemo depending on the pathology of my breast. I waited 8 weeks after my mastectomy to be told I had 2 different cancers, one HER2+ of 6.5cm and another of PR+ of 1.5cm so needed chemo, radiotherapy and phesgo. I’m nearly thru all this - just have 2 more phesgos left. I know it’s all very scary but we’re all here for you. You’ll have good days and bad and as harsh as the treatment is, it is meant to keep recurrence at a minimum. My advice would be to keep hydrated, rest when you can, keep skin moisturised and keep doing your exercises. I’ve worked all through my treatment to help with my mental health and there’s a lot of support to help with this too. Above all, stay strong. Xx
x
yes it’s so hard waiting, I see that everyone finds this the most difficult part. And it’s so easy to speculate.
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