I am feeling pretty shocked and numb right now and just wanted a bit of advice please.
I am newly diagnosed this week. Aged 30, grade 3 with cancer showing in my lymph under my arm also (just one lump can currently be felt), not reliant on oestrogen.
My Doctor seemed pretty positive about it all if that can be said. I am just so afraid of the fact that it has already gone from my breast to node and petrified that it is now on its way into my lymph system and everywhere else… I am due for chemo first to shrink the lump hopefully and then cut it out but the nodes thing makes me so scared! The helpline and my doctor all said that chemo is best and good because if cancer is floating anywhere else it will be got right now.
Does anyone else have nodes involved and what has happened to you? Thank you in advance and sorry for my ramblings.
I was diagnosed with grade three lobular cancer at the end of May 2011 and a lump was also found under my arm. I had a sentinel node biopsy where 5 nodes were removed and I was horrified when I was told that all five tested positive for cancer. Like you, I was petrified and thought that the cancer was on the move. Fast forward to yesterday after five months of chemotherapy (4 x EC and 4 x TAX) a mastectomy and axillary clearance on December 20th. I was told yesterday that another 7 nodes were removed in December and another 6 were showing traces of cancer but the chemo had shrunk the tumor considerably. I was told that they had removed all the cancer and if there were any microscopic bits they would have been zapped by the chemo. I am going to be having 15 doses of radiation as an added precaution and will be on tablets for five years. We celebrated with champagne last night. Don’t be scared, put your trust in your oncology team and focus on getting through the treatments.
Feel free to send me a private message if you want to ask me anything else.
Hi Joanna, so sorry you have to join us, especially as one so young
Just to offer a little reassurance, I recall spending a week or two of abject terror after my dx with aggressive grade 3 IDC with ‘one abnormal node’ while they did scans to confirm I had no spread. I had six rounds of chemo, a mastectomy (with recon) and lymph clearance followed by 25 zaps of radiotherapy. 16 months on from diagnosis I am healthy, well and enjoying life. I really hope that you will find the same true for you.
Neoadjuvant chemo (before surgery) is still relatively uncommon but we are a growing group on here!
You might find it helpful to join one of the ‘starting chemo’ threads to get peer support or one of the younger women threads. please feel free to ask any questions - there’s nothing too silly to ask us. Oh, and avoid google, a lot of stuff out there is out of date or just plain wrong.
It sounds mad, I know, but once you get going on your treatment it will feel less awful and you will get back a little bit of control.
Many of us on here have or had node involvement. I also had positive nodes and all it meant for me is that my chemotherapy was alterered to include tax as well as FEC drugs.
Try not to worry about it, easier said than done I know but having it in your nodes doesn’t mean it’s anywhere else. Your nodes job is to trap foreign bodies floating around your body which is exactly what they did. You are not rambling Hun, you are just asking a question many of us have asked, no question is silly, honest.
Girls, thank you so much for your kind words. You all seem to be doing brilliantly which is a great support and gives me much hope.
When I asked the doctor about scans to see if it has spread (I have read of bone scans and others on here) he said that there was little point because the treatment, chemo, will be exactly the same whatever. I was not totally sure how to take that but guess I need to put my faith in the treatment team as you say… I will be having a breast mri to just check that there are no other bits there that have not been seen yet.
Any other thoughts I would be grateful for and thanks again. X
Sorry you are here to join us but there is lots of support on here.
I am 30years old too and was DX in September, its such a scary time right now but as the other have said there are lots of Ladies with node involvment but are years down the line from DX and living life to the full as Revcat said. your nodes are just doing their job and having the chemo will kill any stray cells floating round (if floating round).
Wish you well during treatment and if you want to pm me anytime feel free xxxx
Hi and sorry to read of your diagnosis. We’ve all been there, the sheer terror of spread to other organs, but although my lymph nodes are affected too and they gave me a CT scan because of that a couple of doctors independently from each other said they don’t expect to find anything (and my affected breast area is 5 x 7.5 cm, so not a small affair by all means). The surgeon also said to me one in five women have their nodes involved whose cancer was deiscovered by routine screening, but every second patient has their nodes involved when they come in because they noticed symptoms themselves, like you and me and every other woman under screening age (I’m 42). I also read on here, that most women have no metastatic disease at time of diagnosis and most woman do never get metastatic disease later on either. So please don’t panick!
Hi Joanna,
“metastatic disease” is posh for “cancer that has spread to another part of your body”. You might find people on here refering to ‘mets’ which is a shorthand way of saying it.
There is heaps of jargon, but you will amaze yourself how soon you pick it up and are able to use it. None of us wanted to become experts in this language, but suddenly we are.
As we’ve already said, no question is too silly or trivial, keep asking whatever you need to know.
Another young 'un here. Unfortunately there are quite a few of us here in our 20s and early 30s - but it’s comforting to know you’re not alone.
I was diagnosed in May after lots of faffing from the specialists saying it wasn’t cancer. I had 3 areas - the biggest lump was 9cm and biopsies showed at least 2 nodes were cancerous. I also had chemo first followed by a bilateral mastectomy (both boobs - my choice - I wanted to minimise my chances of going through this again) and radiotherapy. I’ve got temporary expanding implants in where they slowly expand them with saline to stretch the skin and will have DIEP reconstruction later on this year. That is done by a plastic surgeon and they use tissue and fat from your tummy to make new boobs.
I remember the terror at the start but it does lessen I promise. You’ll also feel more in control once you have started treatment and understand it all a bit more. Please remember that the majority of us will be cured including those of us with lymph involvement - although we are obviously all scared that we will have the bad luck of falling into the minority who aren’t. If you do have cancer cells that have escaped into your blood or lymph system that is exactly what the chemo is for. They may be using it to shrink the lump and will be able to gauge your tumour’s response to chemo by your lump shrinking - but the purpose will be to kill any cells IF any have escaped.
I was also terrified of the word chemo - but I was lucky and sailed through my 8 doses with nothing more than a slight queasiness like having a hangover for a couple of days each time. I also managed to keep a full head of hair by using the cold cap (a hat that freezes your head to slow down the chemo from getting to the hair follicles. My pic is me after chemo. Looking chubby though as I did put on weight during chemo!). Surgery also terrified me - but I went on a Breast Cancer Care Young Women’s 2 day forum and there was a fantastic seminar on reconstruction going through all of the options with pictures and even some girls who’d had recon done and were so pleased with the results that they were happy to strip off and let us have a look. They looked fantastic. That’s another benefit of having chemo first - you have time to come to terms with everything and research your options.
Whereabouts are you based? I would strongly recommend the 2 day forums. They have seminars on allsorts from fertility to reconstruction and it is also really supportive to meet similar aged girls. I’m still in touch with a couple and we meet up regularly.
Hi Joanne. My lymph node involvement was found at surgery so I have had chemo after surgery. I too was pretty scared initially, especially when on this site you start comparing yourself with others who haven’t got lymph nodes affected, I think I just went into panic mode. But the lymph nodes are doing their job picking up the cancer cells and our chemo is designed to pick up any that might have got away. My oncologist says following treatment “the ball is firmly in my court” odd phrase really but I get her drift. Like Hattie I would say try and have as normal and nice a life as you can while on chemo. I didn’t keep working but did manage to go out as much as possible and walk dog when I felt up to it. Just be really kind to yourself. Julia xxx Actually reading everyone’s comments has made me feel better as well.
