Just diagnosed at 39 - any advice greatly welcome!

Hi

I'm so sorry you're feeling anxious with the waiting, that is an awful feeling and I found the waiting the worst part. I am being treated privately purely because I have insurance but have never claimed on it. The team would be the same whether private or NHS and the NHS do have to hit strict targets when treating cancer patients so they wouldn't be slow at all.  But re a second opinion which county are you based in? I was introduced to a couple of ladies locally to me when I was diagnosed who had been through the same diagnosis and treatment and they highly rated the oncologist I have so I would be very happy to give you his name. 

I am also lymph node positive. I actually have just come out of a meeting with my surgeon to discuss surgery in January which will involve a full lymph node clearance.

Please feel free to ask any questions i'm very happy to help with what limited knowledge I now have on the subject! I do ask a lot of questions to my nurse though so maybe a question you have I may have asked her and can help you. 

xx

Waiting is the worst. Once you got treatment plan in place you will feel more settled. My onco told me that few weeks shouldn't make much difference to an outcome even if it is lymph nodes. The most important is to make a tailored plan of treatment and they can do that once they know what they are dealing with by doing tests and scans. However if you need reassurance regarding your treatment plan you can always ask for a second opinion, on NHS or privately. if you need a chat or more advice I will help as much as I can. X

I’m in the West Midlands. It must have really helped hearing from the ladies you spoke with who were under the same team. It’s hard putting your life in someone else’s hands isn’t it. The lymph node positive part is the bit I’m most worried about as I just think what on Earth does it mean next. 

Oh that’s interesting what your oncologist said. I just thought the worst when they said sentinel node was positive as I thought that’s it then it’s really aggressive. I’m just so confused by it all especially as tumour was 17mm. I don’t get how it can have travelled already as it’s not that big

Hi I also totally freaked out when I had my initial diagnosis and was told my nodes had a positive result also but I have asked so many questions around this subject and I’ve been reassured so much that it is so common to go to the lymph nodes. Are you stage 2 do you know? 
I’ve been told that in surgery he’ll just clear all the nodes out and radio therapy will nuke the area to damage the cells. 
do you also have the option of hormone therapy for the years ahead? 
Being introduced to the couple of ladies near me did help. I haven’t been online much but I do speak with a couple of ladies on here regularly with very similar diagnosis. When I was first diagnosed I was on here quite a lot for advice on what to expect from others and I was shocked at many other young women are on here. So many also are fine now but are still on this chat site to help others so there absolutely is lots of light at the end of the tunnel. 
have you asked your oncologist about your prognosis? I know it’s a scary question but I have personally found being as informed as possible will arm you well to understand everything and it won’t leave too much space for your head to run riot xx

I can also totally see where you’re coming from. I experienced some symptoms around last October so went to the GP who said it was nothing so I pushed ahead and went for a private ultrasound who had a good look at both sides plus under arms and all came back clear. Fast forward about 5 months when I found the lump and I was diagnosed with stage 2 with node involvement! 

I haven’t met with oncologist yet. Not told what stage either as they said they won’t stage it until after the mastectomy and axillary clearance now. I really want all the information like you say. That’s the bit that’s so hard as I’m trying to fill the gaps in myself and deciding it’s all bad! I originally was diagnosed in September with stage 1 grade 3, ER positive. But then after lumpectomy and sentinel lymph node removal they’ve said they’ll not be able to stage it properly until next operation. Thanks so much for replying so quickly. I really appreciate it xx I’ve not done much at all on here since I joined in September, I didn’t realise there was an under 50s section until this week and it is helpful to speak to others who are similar ages. X

This is so scary. That must be so hard to mentally get past knowing you addressed it but nothing could be found x

Yes it was very terrifying along with being diagnosed on my own in a room with strangers due to covid but I’m sure we’re all in the same boat there! 
so you’re ER positive which I’m assuming means you can go onto taking the Tamoxifen or a similar hormone therapy. I will have to take it for 10 years and I’ve been told it’s very effective in stopping a reoccurrence as it works by blocking the oestrogen entering your body which the cancer cells will have fed off . I had recently had my second baby when I was diagnosed so the hormone link made sense.

one bit of advice I will say as this is what I tell myself is whether you are being tested privately or by the NHS these people are specialists and see this every day in what they do. Breast cancer is also one of the most if not the most well researched and understood cancers. Every decision they make for your pathway will be tailored to you and if there is any doubt about something it will be examined and cross examined again.
please keep asking questions, this whole process is terrifying let’s be honest xx 

Yes, on my own as well thanks to covid. Covid has really added an extra layer of stress to all this hasn’t it!

yes they mentioned tamoxifen. I’ve got two kids as well so did wonder if those pregnancies played a part. It’s amazing how little I understood about hormones until all of this! that must have been awful that you’d not long had a baby when you found out. Mine are 6&4 at least.

you’re right they are all specialists, I need this positivity right now! Been horrible telling friends and family the results of my operation as we were all hoping it would be positive so everyone is in a low mood this weekend. I need the positive advice and stories. X