Well the news I was half expecting came back today. Grade 3 invasive ductial. Still waiting on HER results. But they have said I’m negative for estrogen. I don’t know what that means or what it could lead to. I’ve been told I will have 6 months chemo. . Then surgery and radio. I now have to wait for mri and ct and bone scan as lymph nodes affected and positive. I feel devastated sick scared and very worried. I’ve read a few very similar recently diagnosed here. What do I do. ??? Xxxx
Hi I am struggling too at the moment, one minute I can distract myself, the next feeling completely overwhelmed and scared of the future.It does seem everyone panics in these first few weeks thoughave and I am just trying to take one day at a time and hope it gets better.I have my CT scan tomorrow (I am also grade 3, triple negative) which isn’t great and my lymph node feels very large and uncomfortable now.
Best of luck and let me know how you get on.xx
foxy… Thanks for your reply. I’ve been following your story and I’m sorry for your diagnosis. It’s so scary isn’t it. I’ve not been told yet about triple neg. What was your result?. All the very best tomorrow. Will be thinking of you. Xxx
Hi Netti37, sorry to hear about your result today. I had a similar diagnosis yesterday, invasive ductal but mine is oestrogen positive, I don’t really know what the difference is. I have my first appointment with oncologist tomorrow to discuss the start of my chemo, which will last 6 cycles. I also am waiting for all those scans you are too. They want to do a full MOT of me they said, so guessing they are doing this for you too. It’s frightening and I feel totally helpless, I want to start the treatment ASAP as a lot of people say you feel a bit better by knowing your starting the treatment to beat it. I’m trying to take one day at a time, but it’s so scary and I just want all the scans to come back clear and that’s another long wait :(. Big hug to you. I have found this website very helpful to hear from other people in the same position x
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Hi Netti,
I am so sad to see you here, but you are in a great place for support and we are all here to help you through this.
It can be scary to read about others diagnosis. Every single one of us is different - and although it may be the same or very similar diagnosis - treatment and outcome together with the way it affects us is as individual, as we are.
Waiting for the various scan results must be quite difficult for you - It was very hard for me, too.
Once I had the results though, I started to feel better, as I knew exactly what I was dealing with and the team, which looks after, me has been absolutely brilliant in helping me understand what my options are.
It may be an idea to call either the Helpline on this site or your assigned Breast Cancer Nurse.
Either can explain to you what some of these thing mean, and how the Positive or Negative affect your diagnosis and treatment. HER/ER/PR is about the hormones, which can make the cancer grow in certain ways.
I am a Grade 3, but lobular invasive, i.e. different part of milk producing bit of the boob - lobular is the milk producing glands and ductal is the milk ducts. Now post op and just started Chemo - and I shall certainly still be here in 10 years time.
xxx
Hi netti,
I’m sorry to hear about your diagnosis. I too, am waiting for bone and ct scans. I had the news that my lymph nodes were affected so need more surgery.
I will have 5 months of chemo. Then the surgery and then radiotherapy. It is so frightening and this part is really the worst. The waiting for things to happen.
I’m due at Christies on the 8th then chemo will start the week after.
The best thing I find, is to read as much as you can. It helps to pass the time and helps to control anxiety. It certainly helps me x
Best of luck to you xx
Hi netti, so sorry to hear that you’ve joined this club that no one wants to join!! But all I can say is you’re in the right place for advice or just a good old frustrating rant cus you’re sick of all the waiting involved.
Today is the 1st anniversary of my diagnosis so we share a date in common that we will never forget. I have come out the other side after a lumpectomy then a preventative double mastectomy and reconstruction and still awaiting removal of my ovaries and tubes (which was cancelled yesterday) due to me having the BRCA2 gene.
So what I wanted to say is that there’s light at the end of the tunnel which you never think you’re going to reach but rest assured its definitely there.
Best of luck to you, if I can help please ask Suzie xx
Hi netti, sorry to read of your diagnosis, waiting for scans and the results from them is hard and stressful, once you have your full treatment plan in place you should hopefully feel less anxious. I was diagnosed last October, aged 35, with invasive ductal as well, mine was estrogen positive and HER negative, also with lymph involvement. I had my mx and ANC first, not really sure why, though it may depend on size and position of lump, then started 18 weeks of chemo in January, I’m now on my first week of rads. It takes a while for everything to sink in, even now I still can’t believe it’s happening to me, you need to make sure you look after yourself, also the forums on this website are fantastic. Everyone is here for you xx
Hi Netti
Im Jen im 37 I was diagnosed last october with grade 3 invasive ductal my lump was 7.5cms and I also had a smaller one in my lymph nodes. I had chemotherapy first and had 3 xEC and 12 weekly paclitaxel . Im also her2+ so having herceptin.
The neoadjuvant chemo(having it first) can depend on lots of things such as where you are in the country (im in Manchester its the norm for under a certain age) wether its hormone receptive/negative. Her2+ etc its all tailored to you and your needs so dont worry if others are having it the other way round its whats best for you as you.
Waiting for those CT results and scans etc is a scary time but it honestly gets easier once you know whats going on and start to have a plan of attack in your head. If it helps mine was clear and my tumour was massive and I had one in my lymph nodes.
Im now 2 weeks post mastectomy and waiting for radiotherapy the light at the end of the tunnel is getting brighter and in a few weeks I will be out the other side and in a few months you will be too so just hang in there !
Take each set of results, each test, each treatment at a time dont think ahead , dont worry about the future just get from one stepping stone to the next if you think ahead to much you start worrying about things you cant change and may never happen.
But also its fine to be down, its fine to be fed up, angry all the other stuff as long as you feel it, get it out then move on xxx
come on here and vent/talk about it if there is no one around to say it to at home.
people will use the word positive and fight etc it may get annoying and you may feel under pressure to be positive to keep them happy, its OK to not be positive (and all the other cliches people will come out with)sometimes. Come on here vent because we have got your back.
Sending you big squishy hugs and love
You can do it
Jen x
Hi Netti, I am have chemo first too, my consultant said it was because of my age (41) classed as young (but she also said there was no evidence to say that results compared with chemo before or after surgery was any different) but she said my body could cope with it and they want to try and save my breast as they are small and taking the lump out now wouldn’t leave much, they want it to shrink first (not that I’m bothered to be honest I just want it all gone). I am very anxious about scans too, I spoke to breast nurse yesterday and said how anxious I was and she chased them up the dates for me. I found speaking to the Breast nurse very reassuring and also this forum and the ladies replies of course. I am not googling anymore. Big hugs x
Netti sorry to hear about your diagnosis. There is a Younger Breast Cancer Network (YBCN) for ladies under 45, which might be if interest/help to you. Good luck with your treatment xx
Hi newly diagnosised ladies sorry you have had to join us but you are in the right place for advice and support. I was diagnosed with a Grade 3 IDC weakly ER + HER +. I initially had a lumpectomy and SNB but I didnt get clear margins and 1 of the 3 lymph nodes they removed had cancer. So I then had a skin saving mastectomy with immediate reconstruction. I had just had round 2 of FEC T chemo with the herceptin to start from round 4 to 6. I worked in between the 2 ops and am working from home during my chemo treatment. I am using the cold cap and still have a full head of hair bit it is thinnin from the shedding. I am off to the wig shop on Thursday . It is a scary dark place when you are first diagnosed and your emotions will be all over the place. You will get through this and begin to see light at the end of the tunnel. Don’t Google stick to this site and Macmillan and your breast care team. I am thinking of all of you and sending you hugs and positive vibes. Lou x
Thanks again all that have posted. Gives me some reassurance. Had my appointment for bone scan today. Is this usual procedure for idc stage 3… Nodes affected. I’m not through the woods yet as still got to wait for scans and HER results. I’m still in shock. I just want to know what I’m up against. Does anyone know if u can travel abroad during chemo? I’m guessing not. Xx
Hi all, I was diagnosed yesterday too, Grade 2. HER 2 positive, so they said I’ll need chemo. Obviously I need surgery too. They’ve said the surgery/ lumpectomy will be 4th July. I was surprised it was so far away. Is it normal to have to wait that long? x
Hi Sue H S,
Thanks for your reply. Think I’ve been few a range of emotions since the diagnosis- and I’m sure there will be more to come. It’s all just scary really and was a total shock - something we all feel is fear about it I guess. As I’m a HER 2+ , they said I will need chemo. I think that’s the part I’m dreading the most. I’ve since spoken to some of the health team and they’ve said 6 weeks isn’t really acceptable and that they are trying to bring the date forward.
I wish you lots of luck too xx
Hi Belle,
Thanks for getting back to me. I’m sorry to hear you’ve been through so much, especially the mastectomy. Dealing with that must’ve taken lots of courage.
Take care, xx
Hi Sue H-S,
Sorry for the delay in getting back to you - I had surgery a week ago (13th June), as there was a cancellation. Relieved to get it over with, so I can move forward with other treatments quicker. And, glad to get the tumour out of me, I hated having it there once I knew it was cancer.
I don’t know how to PM you (I’m not the best with technology!), I can’t see anywhere that says PM. How do I PM you?
Speak to you soon.
Hugs,
Cocoa xx
Hi Sue,
Thanks for explaining how to PM. I had a look at the settings and there’s no tab for PM - maybe I’m still too new!!
Haha, yeah, the insomnia isn’t something I expected and it’s going on a bit!!
When I got the biopsy results, they said I was HER2+ grade 3, ductal carcinoma. Had a look at info online and I see there’s DCIS and invasive ductal carcinoma. They didn’t say which I had.
How’s your journey been with breast cancer? I mean, how are you just now?
Hugs, Cocoa xx
Hi Sue,
I’m sorry to read you had to have a mastectomy. 11cm sounds very large for a tumour in the breast. It’s good they offered immediate reconstructive surgery. Are the hormone tablets herceptin? You sound like a very positive person 
Im glad you’re halfway through the chemo now and nearly there.
I think I’m lucky because my tumour was less than 2cm. This ER and PR negative and positive thing isn’t something I fully understand (sometimes I don’t ask too many questions when I see the doctors!). I’m ER + and PR +. Apparently I’ll be having radiotherapy everyday for 3 weeks first, and then 6 lots of chemo for 6 months, as well as monthly herceptin injections for a year.
Yeah, I’m using my mobile, so maybe that’s why. Thanks for the link, I’ll have a look.
Hugs,
Cocoa xx